PANDEMIC #10 - Burn It Down
COMMONS
PANDEMIC #10 – Burn It Down
Jonathan Marchand is one of the thousands of young disabled people living in long-term care. But Marchand doesn’t want to fix the system. He doesn’t think it can be reformed. Marchand is an abolitionist. For a century and a half, Canada has hidden away disabled people in institutions where they were neglected and abused. Is long-term care just the latest incarnation of this dark history?
July 8, 2020

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Jonathan Marchand is one of the thousands of young disabled people living in long-term care. But Marchand doesn’t want to fix the system. He doesn’t think it can be reformed. Marchand is an abolitionist. For a century and a half, Canada has hidden away disabled people in institutions where they were neglected and abused. Is long-term care just the latest incarnation of this dark history?

 

COMMONS: Pandemic is currently focusing on how COVID-19 is affecting long-term care in Canada.

Featured in this episode: Jonathan Marchand, Sharon J. Riley (The Walrus), Kenneth Jackson (APTN News), Madeline Burghardt, Dustin Galer

To learn more:

“When Is a Senior No Longer Capable of Making Their Own Decisions?” by Sharon J. Riley in The Walrus

“‘Sitting duck’: Disabled woman, 27, lives in Toronto seniors home with COVID-19 outbreak” by Kenneth Jackson in APTN News

Working Towards Equity: Disability Rights Activism and Employment in Late Twentieth-Century by Dustin Galer

Broken: Institutions, Families, and the Construction of Intellectual Disability by Madeline Burghardt 

Hope Is Not a Plan

 

This episode is sponsored by Freshbooks

Additional music from Audio Network

 

TRANSCRIPT: 

 

EPISODE 10 – “BURN IT DOWN”

 

COLD OPEN

[ARSHY]

Until 2010, Jonathan Marchand had a pretty normal life. He has muscular dystrophy, but that hadn’t been too much of an impediment for him.  

 

[JONATHAN MARCHAND]

I always had a disability. It’s a degenerative disability, so I walked until the age of 15.

After that, I started to use a wheelchair and I didn’t need much help in my daily living.

 

[ARSHY]

Jonathan’s a senior network engineer. He’s worked for different internet service providers in Quebec and in Australia. He has a partner he’s been with now for 18 years.

 

[MARCHAND]

I was working. I had an active normal life, I had lots of projects for the future.

 

[ARSHY]

And that’s how Jonathan expected things to go. But he didn’t really understand what his condition could do to him.

 

[MARCHAND]

I was ill-advised by my doctors as well. I didn’t know what was in store for me. No one neither ever told me. So I was pretty ignorant about what could happen.

 

[ARSHY]

And in 2010, it happened. He wasn’t feeling well, so he went to see a doctor. They discovered he had a bad case of pneumonia. Jonathan got sent to the ICU.

 

[MARCHAND]

In the ICU there’s two weeks I don’t remember what happened.

 

[ARSHY]

All he remembers are the terrifying hallucinations he experienced.

 

[MARCHAND]

The only recollections of those two weeks are hallucinations, where people are torturing me, basically setting on fires, stabbing me, and, you know, all kinds of horrific experiences like that.

 

[ARSHY]

When he finally came to, the doctors spoke to him.

 

[MARCHAND]

And what they told me is that I would never come out of the– of the hospital because I was dependent now on a ventilator to breathe and there was no option to go back home.

 

[ARSHY]

It was devastating news. And according to Jonathan, his doctors said that the best thing for him would be to refuse further treatment, and that would mean certain death.

 

[MARCHAND]

And what they were pressuring me, pressuring me to accept these euthanasia, three different doctors had that talk with me and tried to pressure me into accepting that. And I spent a few weeks just looking at the ceiling, trying to work out what I was going to do, if I was going to indeed accept to, to be euthanized. Eventually, I refused because I wasn’t ready to die. 

 

[ARSHY]

Jonathan wanted to live. He had adapted to major life changes before. He could make his way through this, too. And for two years he tried to get out of the hospital and back to his own home. But the government insisted that his care needs were too high. They weren’t willing to pay for it. So Jonathan had to take the only option that was left on the table. At the age of 35, Jonathan Marchand moved into a long-term care home.

I’m Arshy Mann and from Canadaland, this is Commons.

 

PART ONE

[ARSHY]

From the minute he moved into his long-term care home outside of Quebec City, Jonathan Marchand knew he didn’t belong there.

 

[MARCHAND]

The first time I entered here, I was shocked. Really shocked. I got really depressed when I entered. And I stayed in my room for about three years and a half. I never went out of my room. I just stayed inside. 

 

[ARSHY]

Jonathan was promised that the CHSLD would be a place where he would have more autonomy and personal space. But he says it was just another hospital. 

Many people would be surprised to find out that younger people like Jonathan Marchand end up in long-term care homes. We think of them as seniors homes, places where elderly people go at the end of their lives. But that’s the wrong way to look at it. These aren’t old age homes. These are places that house disabled people. They’re asylums.

Now, that might seem like an odd claim because, of course, the vast majority of people who live in long-term care are quite elderly. But you don’t end up in long-term care just because you’re old. We know that 70 percent of people in long-term care have some form of dementia or other cognitive issue. The rest need help with some kind of physical ailment. Almost everyone who lives in long-term care is disabled, or perceived by the government to be disabled.

And when Jonathan Marchand sees how differently the pandemic has affected people in long-term care, compared to the rest of the population, he sees it as a legacy of generations of discrimination against disabled people.

 

[MARCHAND]

On one side you got the old and the disabled, living in long-term care facilities, dying by the thousands. And on the other side, you got the real citizens who contribute to society.

 

[ARSHY]

And the institutionalization of disabled people has a long and dark history in this country. And it goes back all the way to the founding of the nation. The first institutions for disabled people in this country were founded shortly after confederation.

 

[DUSTIN GALER]

These institutions, they were all part of the state-building process in the late 19th century, just as much, I think, as residential schools.

 

[ARSHY]

That’s Dustin Galer, a historian and the author of Working Towards Equity, which covers the Canadian disability movement. 

 

[MADELINE BURGHART]

The first total institution for people with intellectual disabilities was opened in Canada, just outside Orillia, in Ontario, on the shores of Lake Simcoe in 1876. And the first name of that institution was the Orillia Asylum for Idiots. So that really demonstrates the kind of language that was used at the time.

My name is Madeleine Burckhardt and I am an instructor in the School of Health Policy and Management at York University. 

 

[ARSHY]

The initial idea was to provide rehabilitation and training. And then people would then be sent back to their communities. 

 

[BURGHART]

Well, that sort of rehabilitative model shifted pretty quickly into what I call an “incarcerative model,” where people were not really receiving education or training very much. It was more just being housed.

 

[ARSHY]

From the beginning, these places were overcrowded and underfunded. Abuse of all kinds was rampant.

And people who were seen as deviant or non-conforming often ended up being housed there. Children from poor families, or women who were deemed unfit to raise a family, all ended up in these institutions.

 

[GALER]

And particularly, they would treat adults with physical and intellectual disabilities and mental health issues with whatever the latest treatments were at the time. And of course, this often involved hard physical labor, isolation, electroshock therapy, all under the supervision of doctors. 

And often, you know, it’s important to remember that disabled people were deposited here by families, often under the sincere belief they would be better off. 

 

[ARSHY]

By the turn of the century, a new perfidious idea was making its way through the Canadian medical and political establishments — eugenics.

 

[BURGHART]

This was really being promoted as sound, good health policy. You know, that this was going to be good for the general population if we could rid the population of people who were considered feeble minded. And this was absolutely believed and absolutely promoted and institutions were a tool for that movement.

 

[ARSHY]

The epicentre of this movement was Alberta. In 1928 the Albertan government passed the Sexual Sterilization Act. Children with disabilities in these institutions were amongst the many undesirables who were forcibly sterilized, usually without their knowledge. The law wasn’t repealed until 1972. But by the middle of the century, the tide had begun to turn against routine institutionalization. 

Journalist Pierre Berton exposed the conditions inside the Orillia asylum in 1960. 

 

[GALER]

And people were just horrified by what they saw. People were just flocking around in diapers, and no, no semblance of care being had. Or, you know, overmedication, these types of things. And this actually helped start a movement to deinstitutionalize people with physical disability, intellectual developmental disabilities, and mental health issues.

 

[ARSHY]

Mothers of disabled children pushed back against efforts to have their kids institutionalized. They argued that they should be supported at home, instead. And the arguments resonated. The institutions began to close. 

 

[GALER]

But the problem with the response to deinstitutionalization was that governments… They didn’t really commit enough resources to build out an adequate network of community services. So, a lot of the time, it was… It was almost seen as a cost-saving measure, like this movement to deinstitutionalize people kind of overlapped with the desire to reduce budgets. 

 

[ARSHY]

Many disabled Canadians ended up homeless, living in shelters, in chronic care in hospitals, and of course, in nursing homes in long-term care. But it was around this time that disabled Canadians found new avenues to advocate for themselves. Disability was becoming an identity.

 

[GALER]

So there were different disability movements. But a big one that emerged in the 70s and 80s were consumer activists. So, these are people with disabilities, themselves, pushing back, demanding greater rights to protect them. 

 

[ARSHY]

And an important part of these movements was confronting the caregivers who once claimed to speak for disabled people. Disabled people made it clear that they are their own best advocates.

By the 2000s, disability rights and liberation movements were widespread. But many disabled Canadians continue to live in institutions that don’t serve their needs, where they’re abused and neglected. The Huronia Regional Centre, first known as the Orillia Asylum for Idiots, only closed down in 2009.

 

PART TWO

[ARSHY]

So what makes long-term care different from these earlier institutions for disabled people? I think if we’re being honest, it’s not much. And a major reason why is that there are specific processes that happen when you’re institutionalized. By their very nature, they’re dehumanizing.

Let’s start out with how you end up in long-term care.

 

[SHARON RILEY]

We have seen surveys coming out of provinces like B.C. where advocates have surveyed nursing home residents and found that at least half of them say they don’t want to be there.

 

[ARSHY]

That’s Sharon J. Riley, an investigative journalist, and a longtime friend of the show. She recently tackled this very question in a big feature she wrote and reported for The Walrus. There are some people who plan for long-term care, but that’s not the majority. For a lot of the people who are deemed to have dementia or another intellectual disability, it starts with a capacity test.

 

[RILEY]

A capacity test is a tool that’s used to assess someone’s mental capacity. It’s important to note that mental capacity is not about how smart you are. It’s about your ability to make decisions, taking into account the implications of those decisions.

When an assessor who’s measuring capacity is trying to make that determination, they can ask you all sorts of questions. They can ask you questions about your living situation. So say, “What would happen to you if you fell at home,” or ask you questions about how you pay your bills. “What would happen if you continue living at home?” “What would happen if you moved to a nursing home,” and sort of assess whether you understand the implications of each of those things. Not whether you want it or not, but whether you understand what it means. But an assessor can also look at cognitive abilities as sort of a way to feed into this determination. And that’s where things get a little bit tricky.

‘Cause there are many different cognitive tests out there. They can ask you kind of jarring and weird questions. Being asked, “Can you draw a clock face? Can you name as many words as you can think of that start with the letter ‘F’?”

Can you say ifs, ands and buts three times and given a time limit on each of these things? So you might be very flustered. You might have 30 seconds to name as many words as you can think of that start with the letter F.

Also, another test that can feed into a capacity assessment, though it is not measuring capacity itself, is measuring depression. So you might be asked questions like, “Do you feel pretty worthless right now, or is it wonderful to be alive?” These are, like, word for word questions on a depression scale assessment. And those answers can also feed into an assessor’s determination of whether or not you have mental capacity.

 

[ARSHY]

These tests often last only 30 or 45 minutes. If the assessor decides that you don’t have the capacity to make your own decisions, from that one interview, the state can take over life. You can lose control of your finances, and they can force you to leave your home and go live in long-term care.

 

[RILEY]

So the implications of the capacity tests can be enormous. Even though it can be short and the questions can seem strange, in the end, the assessor can decide to take away some pretty huge liberties that we enjoy as adults. 

 

[ARSHY]

For the majority of Canadians, there are few ways to fight the decision. Ontario is the only province that even has an appeals process. But that’s not the only way that people end up in the system. Many, like Jonathan Marchand, are forced into it because the government says that there’s nowhere else they can get the level of care that they require.

 

[JONATHAN MARCHAND]

They could not give me enough hours of assistance the whole day. There are hard caps on the hours that you can get in Quebec. It’s around 44 hours a week and I needed 168 hours a week.

 

[ARSHY]

Or take the case of Cayleah Lamarsh. 

 

[KENNETH JACKSON] 

He’s a nice person to speak to. She’s very helpful. Always available.

 

[ARSHY]

That’s Kenneth Jackson, a reporter with Aboriginal People’s Television Network. He’s been reporting on Cayleah’s situation from the beginning of the pandemic. Cayleah was abandoned by her mother at a very young age. By four, she was a Crown ward. And by eight she was in a group home.  

 

[JACKSON]

So you can just imagine at that age, eight. By then, that’s almost pure hell. For the most part, right? Like, that’s a lot of damage, you know, on a young developing mind.

 

[ARSHY]

She was abused in various homes and, by 18, she aged out of the system. And by 21, she was homeless.

 

[JACKSON]

She was on a Toronto bus. The freak accident, and she got flung forward and smashed her neck or shoulder off one of the poles, and she’s paralyzed from the waist down. And there was nowhere for her to go. So she went into a long-term care home.

And she knows that she doesn’t want to be there. She’s been trying to get out. Even the doctor that first saw her says, “You don’t belong here. We can’t care for you. There’s nothing here for you.”

 

[ARSHY]

Cayleah doesn’t need care 24/7. She just needs some help with things like getting out of bed or bathing. But long-term care was the only option presented to her.

 

[JACKSON]

Caylee was abandoned in a child welfare system. Now she’s abandoned in a long-term care system. The long-term care one, that’s for life. She has a life sentence in that home.

 

[ARSHY]

And Jonathan Marchand says that, once you’re inside, you’re simply not treated like a person.

 

[MARCHAND]

Basically, you’ll lose your citizenship when you enter a long-term care facility. You become an object that we warehouse away. An object of care and profit.

 

[ARSHY]

You become an object of care. Something to be managed. Something that has to fit into a schedule and a routine. And when Jonathan describes what that’s like, it sounds exactly like what people with intellectual disabilities had to face in places like the Orillia Asylum for Idiots. 

Here’s Madeline Burkhart again, talking about what life in that institution was like decades ago. 

 

[BURKHART]

There’s so many thousands of little decisions that we make for ourselves every day that we’re just taking away from people. So there’s that whole dehumanization, as well. Like even just deciding what clothes to wear, or when to turn the lights off, when to get up in the morning, when to go to bed at night. What you are going to eat, how long you would take to eat your meal… All those things were controlled. All aspects of your daily life was organized and imposed from above, from the administration of the institution.

 

[ARSHY]

And here’s Jonathan Marchand talking about what life is like today in long-term care.

 

[MARCHAND]

It’s incredibly difficult because when you enter, you lose control over your life in all aspects. You don’t have any choice over who touches your body to provide you assistance. You’ve got no choice or control. At what time are you gonna get up? When you go to bed, what time are you gonna eat? What you gonna eat? Um, what time are you gonna go to the toilet? Basically everything is managed for you.

 

[ARSHY]

And in these institutions, both past and present, the residents or patients or inmates, are forced to conform to the needs of the staff.

 

[BURKHART]

And you can understand it when you think about… If there were hundreds, sometimes thousands of people living together, you can’t organize that many people in a way that allows individual choice and freedom. And so the administrative needs of the institution always superseded the individual desires and needs of the residents. 

 

[MARCHAND]

Whenever there’s a conflict between your well-being, your rights and the rules, the law and the way the services are organized, it’s, it’s always the latter that wins. 

In an institution, you need to keep the peace here and you need to stay in your lane, to stay quiet. They want you to be obedient. They want you to be kind at all times. You got to be a good cripple, right? You got to do what they say.

 

[ARSHY]

If you’re not obedient, if you don’t stay quiet, you can be restrained. In Ontario in 2010, 16 per cent of long-term care residents were physically restrained on a daily basis. That number is now down to around four per cent.  Often, this is done because people are violent or a danger to themselves. But it’s still undeniably inhumane. 

And then there’s the use of chemical restraints. Long-term care residents are often given anti-psychotic drugs, even if they have not been diagnosed with psychosis.

 

[RILEY]

You can imagine that an antipsychotic drug has a lot of the same side-effects symptoms of waning mental capacity. So if you administered an antipsychotic drug, you can become very lethargic, you can become very confused. You can seem less interested in life in general. It’s… It’s a pacifier, essentially. It might make it much more difficult for you to manage your daily tasks. 

So even if you went into a nursing home with mental capacity that was quite robust, if you were making a big fuss, if you’re complaining all the time and becoming a real disruption to all the other residents, it’s not out of the realm of possibility that you might be administered antipsychotic drugs just to calm you down, which could then further the case against you that your mental capacity is waning.

 

[ARSHY]

A 2011 investigation by the BC government found that over 50 per cent of people in long-term care were on some kind of anti-psychotic medication. Many of them did not have any kind of documented diagnosis for psychosis.

It’s true that historically, abusers have been attracted to the power that working in these kinds of institutions gives them. But that’s not the majority of people.

 

[BURGHART]

We are horrified when we hear stories about staff doing terrible things in institutions, but we don’t make that easy.

 

[ARSHY]

The systems that are set up almost demand that the residents are treated in these awful ways. 

 

[BURGHART]

It’s just harder, plain and simple, to be kind when you are looking after that many people and being asked to help 10 people to have a bath, or asked to help 20 people to eat their dinner, or whatever it may be, it takes away the opportunity for–for real care, I think. Institutions do not make it easy for people to be really kind and provide the care that we all are entitled to. 

 

[ARSHY]

If you’re in an institution, you lose control over almost everything. 

 

[MARCHAND]

And it goes even further than that. My experience is that they even want to control the way you die,

 

[ARSHY]

At one point, when Jonathan was in the hospital, he wanted to just go home, whether or not he got the care he needed, even if it put his life in danger.

But Jonathan was told that he couldn’t.

 

[MARCHAND]

But he told me, “No, it’s dangerous. You can’t do that. We need to ensure your safety and we’ll go to court to stop you from going out.”

 

[ARSHY]

This was coming from the same people who were pressuring him to end his own life. But they wouldn’t let him choose how.

 

[MARCHAND]

So even in death, they want to control the way you die. So that’s… That’s messed up. You become an object to them that they have to keep track of. And an object doesn’t have any kind of rights whatsoever.

You got to be this passive thing. I think it’s incredibly dehumanizing, and I don’t want to be part of that system anymore. I want to get out. I want to be able to live my own life according to my own values and be able to contribute to society like everyone else. I don’t see how anyone can live in a place like that. Frankly, I think humans are not made to live inside institutions.

 

PART THREE

[ARSHY]

In his first few years in long-term care, Jonathan Marchand considered acting on the advice so many medical professionals were giving him. Euthanasia. 

 

[MARCHAND]

Most people were pushing me toward euthanasia. You know, that conversation was coming up over and over again. So I started to get really depressed at that time. Um, and I was seeking, uh, ways, uh, to end my life. So, I was in this mindset that there was so way out, and death was my escape.

But something happened. Eventually on the Internet, I met on Facebook… I met with other people with disabilities outside of, uh, Quebec. In Canada, in the United States, in Europe and in Australia, who had needs similar to mine, who were using ventilators or needed 24 hour assistance.

And they had that assistance in their own home. And they were working. They had partners. They are… They had a normal life. So I was like, what the hell? Why can’t I get that in Quebec?

 

[ARSHY]

Before long-term care, Jonathan had never been an activist. He didn’t think much about disability rights or liberation before he was trapped in this home. Once he started to connect with other people like him around the world, Jonathan realized he wasn’t the problem. His disability didn’t mean he had to live in long-term care. There are lots of people, just like him, living in their communities, having a normal life.

And he saw how other people had gotten those changes made. Disabled people themselves have to demand it. 

 

[MARCHAND]

That’s the key. Because when you rely on third parties to do the work for you, oftentimes you end up with, uh, crumbs or, you know, things that, um, don’t respect your rights and don’t lead to your emancipation.

 

[ARSHY]

He co-founded a cooperative with some friends to lobby the Quebec government to provide funding so people like him could live at home. And he argues that it’s actually cheaper to do that, than house people in long-term care.

 

[MARCHAND]

There are no economic arguments against that proposition. Actually, you are throwing money away by continuing to invest in institutions.

 

[ARSHY]

Throughout this season of Commons, we’ve been telling you about how underfunded and understaffed the long-term care system is. How we need higher standards of care, more resources, better training.

But Jonathan thinks all of that is bullshit. 

 

[MARCHAND]

I think long-term care facilities should not exist. Um… It’s, um, something that’s been put in place to exclude and eliminate people with disabilities from society.

 

[ARSHY]

Jonathan is in favour of abolition.

 

[MARCHAND]

The idea that we can have good institutions is false. These places are designed to deprive the, the freedom of people with disabilities and the elderly. It’s incompatible with life.

 

[ARSHY]

Jonathan believes that all institutions, whether it was an asylum 150 years ago, or long-term care today, are dehumanizing by their very nature, that more money isn’t going to fix this, that reform isn’t going make people’s lives better. Instead, we need to burn it all down. Let disabled people live in their own homes. Give them the money they need to hire caregivers that will come to them.

Jonathan’s still fighting to get out of long-term care. He’s done dozens of interviews with the press. He’s tried to reach out to Quebec’s premier, François Legault, but all his calls have gone unanswered.

And even if he does get out, he’s worried. 

 

[MARCHAND]

I’ve been inside for 10 years now and I’m starting to forget how it’s like to be living in the community like everyone else.

When you enter a Long-Term Care Facility, it’s like your world shrinks from day-to-day, week-to-week, month-to-month, year-to-year, until your world becomes your–your room or the, the hallway, or the staff that surrounds you.

If  I think too much about the future, when I have no future right now, I mean, it’s incredibly demoralizing. It’s, uh.. It can even be dangerous because, when you suffer a setback, then you can lose hope. And so I try to live day-by-day as much as I can. But I want to expand my world.

 

OUTRO

For a century and a half, we have put disabled people in institutions against their will. Long-term care is just the latest iteration of that.

For Jonathan, it all comes down to discrimination.

 

[MARCHAND]

It’s a big cultural and systemic issue. People with disabilities are discriminated against every day, at all levels. And it goes even as far as to the idea that our lives are not worth treating and it’s better to be dead than to be disabled.

 

[ARSHY]

Even as the pandemic has killed thousands of people in long-term care, he doesn’t expect things to get better. 

 

[MARCHAND]

So, there’s no political will that I see to really change things. And that’s what makes me very angry. There are solutions. We can do better. But it’s off the table, even now with thousands of people dead. What has been announced to change things, turn things around? Next to nothing.

And if we don’t do something collectedly, they’re going to get away with it.

 

[ARSHY]

The debate over the future of long-term care is just beginning. But maybe it shouldn’t have any future at all. 

 

END CREDITS

That’s your episode of Commons for the week.

If you want to support us, click on the link in your show notes or go to commonspodcast.com

This episode relied on work done by Sharon Riley at The Walrus, Kenneth Jackson at APTN, Dustin Galer, Madeline Burghardt, the team behind Hope is Not a Plan, and many, many others

I want to give a special shout-out to Aimee Louw at The Walrus for all of her help. 

If you want to get in touch with us, you can tweet at us at @COMMONSpod. You can also email me, Arshy@canadalandshow.com

This episode was produced by me and Jordan Cornish, with additional production by Tiffany Lam. Our managing editor is Andréa Schmidt. And our music is by Nathan Burley. 

If you like what we do, please help us make this show. Click on the link in your show notes or go to commonspodcast.com

 

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Andray Domise and Desmond Cole talk to Kyla Ronellenfitsch from the Gandalf Group and David Coletto, the CEO of Abacus Data to help figure out political polling. When should you pay attention to a poll and why and when should you take the results with a grain of salt.
October 7, 2015
17
Kids These Days
Andray Domise speaks with former 18-year-old mayoral candidate Morgan Baskin (@MorganBaskinTO) and Generation Squeeze founder Paul Kershaw (@GenSqueeze) about youth in politics. Don't worry. No one asks you to rock the vote.
October 7, 2015
18
A Historic Election
We've never seen one like this before. Desmond Cole is back to talk three-way races, minority governments and party cooperation with Paul Fairie (@paulisci) and Mychaylo Prystupa (@Mychaylo). Plus, Andray Domise is reticent to embrace coalitions.
October 7, 2015
22
A Conservative Makes His Case
Cartoonist and conservative commentator J.J. McCullough tells Andray and Desmond why he's voting Conservative in this election. It gets uncomfortable.
October 8, 2015
21
What are women’s issues, anyway?
Septembre Anderson and Naomi Sayers tell Desmond Cole what they think women's issues are, and what they make of how they're treated in our politics.
October 8, 2015
20
Knock Knock
Desmond Cole follows a Green Party candidate and his volunteers as they door-knock in the riding of Toronto-Danforth.
October 8, 2015
19
Campaign Ads (are for grandmas)
Andray Domise and Desmond Cole talk campaign ads with Jen Gerson and Scott Matthews. Featuring a special guest appearance from Andray’s grandma.
October 8, 2015
23
The Choice for Progressives
Tiffany Gooch explains why she's voting Liberal, and Luke Savage tells us why he's voting NDP. Plus, Desmond and Andray debate the value of voting.
October 14, 2015
24
Episode #24: Live On Election Night
Andray Domise, Desmond Cole and Supriya Dwivedi broadcast 'live and loose' to a packed room at the Monarch Tavern in Toronto. Feat. Jesse Brown in Toronto, Jen Gerson at Harper HQ in Calgary, Drew Brown in Edmonton, Morgan Baskin in Squamish. Warning: there's some profanity in this episode. Check out tweets from the event at #CL42. Special thanks to RAUR for the livestream.
October 20, 2015
25
Canada’s 1st MP of Somali descent
Ahmed Hussen is the first Canadian of Somali descent to get elected to Parliament. He joins Andray and Desmond in studio to talk about diversity in Parliament and Liberal policies on Bill C-51, the refugee crisis and more.
October 27, 2015
26
Losin’ Ain’t Easy
Andray wants to know what a party in the opposition can actually do, so he talks to Ray Martin, the former Leader of the Offiical Opposition for Alberta. He also talks about the future of the Conservative Party with Mark Warner - a candidate who was ousted in 2007 - and Tasha Kheiriddin - a conservative who's been critical of Stephen Harper.
November 2, 2015
27
How the Cabinet is like Wu-Tang Clan
Andray speaks to University of New Brunswick's JP Lewis and Buzzfeed Canada's Scaachi Koul about the new Liberal Cabinet. JP is full of weird analogies. Scaachi's dubious of the change to come.
November 9, 2015
29
The Beaverton
Andray and Desmond talk about giving teeth to political satire with Luke Gordon Field, editor-in-chief of The Beaverton.
November 24, 2015
30
Electoral Reform, or How New Zealand Got a Rastafari MP
Andray and Desmond speak to a former New Zealand politician about the electoral reform his country went through. Conservative strategist Jim Burnett thinks it would never work in Canada.
November 30, 2015
32
Families of MMIW: “What can we do tomorrow?”
Three family members of murdered or missing Indigenous women join Desmond and guest host Supriya to talk about their thoughts on the national inquiry and how they've felt let down by First Nations leaders on this issue.
December 16, 2015
31
Bringing Refugees To The Rockies
We take a look at what goes into getting 3 refugees from Syria to the small mountain town of Jasper, Alberta. And a refugee from Pakistan talks about abandoning her home country.
December 23, 2015
33
Canada’s Climate Game (of Thrones)
Andray is shamed for driving an SUV. Trudeau is shamed for brushing off young people. Desmond is shamed for not watching Game of Thrones.
December 23, 2015
34
A Senator On Mischief, Mutiny And Men’s Rights
A difficult interview in which Senator Anne C. Cools dismisses the need to audit senators' expenses and denies that violence is a gendered problem.
January 7, 2016
35
White Men Gotta Speak On This
Editor-in-chief of the Walrus Jonathan Kay and cultural critic September Anderson talk about whether white men are being stifled by political correctness. Oh, and wtf is political correctness anyway?
January 12, 2016
36
What is a Post-Harper Conservative?
Conservative strategist Jim Burnett returns to answer questions like “What is a Conservative today?” and “Did you actually like Harper?" Plus, a young Conservative gives his view on the future of the party.
January 19, 2016
37
Michelle Rempel on Heckling
Desmond and Supriya speak to Conservative MP Michelle Rempel about heckling in the House of Commons.
January 25, 2016
38
The Government Finally Admitted They Illegally Spy On Us and Nobody Cares
A watchdog report released publicly last week said CSE collected info on Canadians and gave it to other countries.
February 2, 2016
28
Paris; Backlash Against Canadian Muslims?
Following the tragedy in Paris, Desmond talks to Imam Syed Soharwardy, founder of the Islamic Supreme Council of Canada, and Amira Elghawaby, communications director for the National Council of Canadian Muslims, about the backlash Canadian Muslims face when terrorist attacks carried out in the name of Islam.
February 3, 2016
Don’t Let Harper Happen Here: Wab Kinew on Entering Politics
Wab Kinew talks about systemic racism against Indigenous peoples in Canada and why he's turned to politics to try to make the changes he wants to see.
February 8, 2016
40
George Elliott Clarke: A Polyphony of Canadian Blacknesses
The Parliamentary Poet Laureate talks about working for a pioneering black MP, Canada's multitude of black histories and his problem with telephone companies.
February 15, 2016
41
Legal Weed is Bad for Poor People
We talk to a Liberal MP and a criminal defense lawyer about what legalisation means for the people who built the markets.
February 22, 2016
42
Live From U of Ottawa: Refugees Welcome, But Bad News About the Job Market…
When Canadian University grads work at Starbucks and immigrant doctors drive taxis, how will refugees get on their feet?
February 29, 2016
43
Rogue Senators
Senator Diane Bellemare quit the Conservative caucus, saying pressure to toe the party line is getting in the way of Senators doing their jobs.
March 14, 2016
44
Canada’s Arms Deals: Beyond Saudi Arabia
Support us at commonspodcast.com Jonathan Marchand is one of the thousands of young disabled people living in long-term care. But Marchand doesn’t want to fix the system. He doesn’t think it can be reformed. Marchand is an abolitionist. For a century and a half, Canada has hidden away disabled people in institutions where they were neglected and abused. Is long-term care just the latest incarnation of this dark history?   COMMONS: Pandemic is currently focusing on how COVID-19 is affecting long-term care in Canada. Featured in this episode: Jonathan Marchand, Sharon J. Riley (The Walrus), Kenneth Jackson (APTN News), Madeline Burghardt, Dustin Galer To learn more: “When Is a Senior No Longer Capable of Making Their Own Decisions?” by Sharon J. Riley in The Walrus “‘Sitting duck’: Disabled woman, 27, lives in Toronto seniors home with COVID-19 outbreak” by Kenneth Jackson in APTN News Working Towards Equity: Disability Rights Activism and Employment in Late Twentieth-Century by Dustin Galer Broken: Institutions, Families, and the Construction of Intellectual Disability by Madeline Burghardt  Hope Is Not a Plan   This episode is sponsored by Freshbooks Additional music from Audio Network   TRANSCRIPT:    EPISODE 10 – “BURN IT DOWN”   COLD OPEN [ARSHY] Until 2010, Jonathan Marchand had a pretty normal life. He has muscular dystrophy, but that hadn’t been too much of an impediment for him.     [JONATHAN MARCHAND] I always had a disability. It’s a degenerative disability, so I walked until the age of 15. After that, I started to use a wheelchair and I didn’t need much help in my daily living.   [ARSHY] Jonathan’s a senior network engineer. He’s worked for different internet service providers in Quebec and in Australia. He has a partner he’s been with now for 18 years.   [MARCHAND] I was working. I had an active normal life, I had lots of projects for the future.   [ARSHY] And that’s how Jonathan expected things to go. But he didn’t really understand what his condition could do to him.   [MARCHAND] I was ill-advised by my doctors as well. I didn’t know what was in store for me. No one neither ever told me. So I was pretty ignorant about what could happen.   [ARSHY] And in 2010, it happened. He wasn’t feeling well, so he went to see a doctor. They discovered he had a bad case of pneumonia. Jonathan got sent to the ICU.   [MARCHAND] In the ICU there’s two weeks I don’t remember what happened.   [ARSHY] All he remembers are the terrifying hallucinations he experienced.   [MARCHAND] The only recollections of those two weeks are hallucinations, where people are torturing me, basically setting on fires, stabbing me, and, you know, all kinds of horrific experiences like that.   [ARSHY] When he finally came to, the doctors spoke to him.   [MARCHAND] And what they told me is that I would never come out of the– of the hospital because I was dependent now on a ventilator to breathe and there was no option to go back home.   [ARSHY] It was devastating news. And according to Jonathan, his doctors said that the best thing for him would be to refuse further treatment, and that would mean certain death.   [MARCHAND] And what they were pressuring me, pressuring me to accept these euthanasia, three different doctors had that talk with me and tried to pressure me into accepting that. And I spent a few weeks just looking at the ceiling, trying to work out what I was going to do, if I was going to indeed accept to, to be euthanized. Eventually, I refused because I wasn’t ready to die.    [ARSHY] Jonathan wanted to live. He had adapted to major life changes before. He could make his way through this, too. And for two years he tried to get out of the hospital and back to his own home. But the government insisted that his care needs were too high. They weren’t willing to pay for it. So Jonathan had to take the only option that was left on the table. At the age of 35, Jonathan Marchand moved into a long-term care home. I’m Arshy Mann and from Canadaland, this is Commons.   PART ONE [ARSHY] From the minute he moved into his long-term care home outside of Quebec City, Jonathan Marchand knew he didn’t belong there.   [MARCHAND] The first time I entered here, I was shocked. Really shocked. I got really depressed when I entered. And I stayed in my room for about three years and a half. I never went out of my room. I just stayed inside.    [ARSHY] Jonathan was promised that the CHSLD would be a place where he would have more autonomy and personal space. But he says it was just another hospital.  Many people would be surprised to find out that younger people like Jonathan Marchand end up in long-term care homes. We think of them as seniors homes, places where elderly people go at the end of their lives. But that’s the wrong way to look at it. These aren’t old age homes. These are places that house disabled people. They’re asylums. Now, that might seem like an odd claim because, of course, the vast majority of people who live in long-term care are quite elderly. But you don’t end up in long-term care just because you’re old. We know that 70 percent of people in long-term care have some form of dementia or other cognitive issue. The rest need help with some kind of physical ailment. Almost everyone who lives in long-term care is disabled, or perceived by the government to be disabled. And when Jonathan Marchand sees how differently the pandemic has affected people in long-term care, compared to the rest of the population, he sees it as a legacy of generations of discrimination against disabled people.   [MARCHAND] On one side you got the old and the disabled, living in long-term care facilities, dying by the thousands. And on the other side, you got the real citizens who contribute to society.   [ARSHY] And the institutionalization of disabled people has a long and dark history in this country. And it goes back all the way to the founding of the nation. The first institutions for disabled people in this country were founded shortly after confederation.   [DUSTIN GALER] These institutions, they were all part of the state-building process in the late 19th century, just as much, I think, as residential schools.   [ARSHY] That’s Dustin Galer, a historian and the author of Working Towards Equity, which covers the Canadian disability movement.    [MADELINE BURGHART] The first total institution for people with intellectual disabilities was opened in Canada, just outside Orillia, in Ontario, on the shores of Lake Simcoe in 1876. And the first name of that institution was the Orillia Asylum for Idiots. So that really demonstrates the kind of language that was used at the time. My name is Madeleine Burckhardt and I am an instructor in the School of Health Policy and Management at York University.    [ARSHY] The initial idea was to provide rehabilitation and training. And then people would then be sent back to their communities.    [BURGHART] Well, that sort of rehabilitative model shifted pretty quickly into what I call an “incarcerative model,” where people were not really receiving education or training very much. It was more just being housed.   [ARSHY] From the beginning, these places were overcrowded and underfunded. Abuse of all kinds was rampant. And people who were seen as deviant or non-conforming often ended up being housed there. Children from poor families, or women who were deemed unfit to raise a family, all ended up in these institutions.   [GALER] And particularly, they would treat adults with physical and intellectual disabilities and mental health issues with whatever the latest treatments were at the time. And of course, this often involved hard physical labor, isolation, electroshock therapy, all under the supervision of doctors.  And often, you know, it’s important to remember that disabled people were deposited here by families, often under the sincere belief they would be better off.    [ARSHY] By the turn of the century, a new perfidious idea was making its way through the Canadian medical and political establishments — eugenics.   [BURGHART] This was really being promoted as sound, good health policy. You know, that this was going to be good for the general population if we could rid the population of people who were considered feeble minded. And this was absolutely believed and absolutely promoted and institutions were a tool for that movement.   [ARSHY] The epicentre of this movement was Alberta. In 1928 the Albertan government passed the Sexual Sterilization Act. Children with disabilities in these institutions were amongst the many undesirables who were forcibly sterilized, usually without their knowledge. The law wasn’t repealed until 1972. But by the middle of the century, the tide had begun to turn against routine institutionalization.  Journalist Pierre Berton exposed the conditions inside the Orillia asylum in 1960.    [GALER] And people were just horrified by what they saw. People were just flocking around in diapers, and no, no semblance of care being had. Or, you know, overmedication, these types of things. And this actually helped start a movement to deinstitutionalize people with physical disability, intellectual developmental disabilities, and mental health issues.   [ARSHY] Mothers of disabled children pushed back against efforts to have their kids institutionalized. They argued that they should be supported at home, instead. And the arguments resonated. The institutions began to close.    [GALER] But the problem with the response to deinstitutionalization was that governments… They didn’t really commit enough resources to build out an adequate network of community services. So, a lot of the time, it was… It was almost seen as a cost-saving measure, like this movement to deinstitutionalize people kind of overlapped with the desire to reduce budgets.    [ARSHY] Many disabled Canadians ended up homeless, living in shelters, in chronic care in hospitals, and of course, in nursing homes in long-term care. But it was around this time that disabled Canadians found new avenues to advocate for themselves. Disability was becoming an identity.   [GALER] So there were different disability movements. But a big one that emerged in the 70s and 80s were consumer activists. So, these are people with disabilities, themselves, pushing back, demanding greater rights to protect them.    [ARSHY] And an important part of these movements was confronting the caregivers who once claimed to speak for disabled people. Disabled people made it clear that they are their own best advocates. By the 2000s, disability rights and liberation movements were widespread. But many disabled Canadians continue to live in institutions that don’t serve their needs, where they’re abused and neglected. The Huronia Regional Centre, first known as the Orillia Asylum for Idiots, only closed down in 2009.   PART TWO [ARSHY] So what makes long-term care different from these earlier institutions for disabled people? I think if we’re being honest, it’s not much. And a major reason why is that there are specific processes that happen when you’re institutionalized. By their very nature, they’re dehumanizing. Let’s start out with how you end up in long-term care.   [SHARON RILEY] We have seen surveys coming out of provinces like B.C. where advocates have surveyed nursing home residents and found that at least half of them say they don’t want to be there.   [ARSHY] That’s Sharon J. Riley, an investigative journalist, and a longtime friend of the show. She recently tackled this very question in a big feature she wrote and reported for The Walrus. There are some people who plan for long-term care, but that’s not the majority. For a lot of the people who are deemed to have dementia or another intellectual disability, it starts with a capacity test.   [RILEY] A capacity test is a tool that’s used to assess someone’s mental capacity. It’s important to note that mental capacity is not about how smart you are. It’s about your ability to make decisions, taking into account the implications of those decisions. When an assessor who’s measuring capacity is trying to make that determination, they can ask you all sorts of questions. They can ask you questions about your living situation. So say, “What would happen to you if you fell at home,” or ask you questions about how you pay your bills. “What would happen if you continue living at home?” “What would happen if you moved to a nursing home,” and sort of assess whether you understand the implications of each of those things. Not whether you want it or not, but whether you understand what it means. But an assessor can also look at cognitive abilities as sort of a way to feed into this determination. And that’s where things get a little bit tricky. ‘Cause there are many different cognitive tests out there. They can ask you kind of jarring and weird questions. Being asked, “Can you draw a clock face? Can you name as many words as you can think of that start with the letter ‘F’?” Can you say ifs, ands and buts three times and given a time limit on each of these things? So you might be very flustered. You might have 30 seconds to name as many words as you can think of that start with the letter F. Also, another test that can feed into a capacity assessment, though it is not measuring capacity itself, is measuring depression. So you might be asked questions like, “Do you feel pretty worthless right now, or is it wonderful to be alive?” These are, like, word for word questions on a depression scale assessment. And those answers can also feed into an assessor’s determination of whether or not you have mental capacity.   [ARSHY] These tests often last only 30 or 45 minutes. If the assessor decides that you don’t have the capacity to make your own decisions, from that one interview, the state can take over life. You can lose control of your finances, and they can force you to leave your home and go live in long-term care.   [RILEY] So the implications of the capacity tests can be enormous. Even though it can be short and the questions can seem strange, in the end, the assessor can decide to take away some pretty huge liberties that we enjoy as adults.    [ARSHY] For the majority of Canadians, there are few ways to fight the decision. Ontario is the only province that even has an appeals process. But that’s not the only way that people end up in the system. Many, like Jonathan Marchand, are forced into it because the government says that there’s nowhere else they can get the level of care that they require.   [JONATHAN MARCHAND] They could not give me enough hours of assistance the whole day. There are hard caps on the hours that you can get in Quebec. It’s around 44 hours a week and I needed 168 hours a week.   [ARSHY] Or take the case of Cayleah Lamarsh.    [KENNETH JACKSON]  He’s a nice person to speak to. She’s very helpful. Always available.   [ARSHY] That’s Kenneth Jackson, a reporter with Aboriginal People’s Television Network. He’s been reporting on Cayleah’s situation from the beginning of the pandemic. Cayleah was abandoned by her mother at a very young age. By four, she was a Crown ward. And by eight she was in a group home.     [JACKSON] So you can just imagine at that age, eight. By then, that’s almost pure hell. For the most part, right? Like, that’s a lot of damage, you know, on a young developing mind.   [ARSHY] She was abused in various homes and, by 18, she aged out of the system. And by 21, she was homeless.   [JACKSON] She was on a Toronto bus. The freak accident, and she got flung forward and smashed her neck or shoulder off one of the poles, and she’s paralyzed from the waist down. And there was nowhere for her to go. So she went into a long-term care home. And she knows that she doesn’t want to be there. She’s been trying to get out. Even the doctor that first saw her says, “You don’t belong here. We can’t care for you. There’s nothing here for you.”   [ARSHY] Cayleah doesn’t need care 24/7. She just needs some help with things like getting out of bed or bathing. But long-term care was the only option presented to her.   [JACKSON] Caylee was abandoned in a child welfare system. Now she’s abandoned in a long-term care system. The long-term care one, that’s for life. She has a life sentence in that home.   [ARSHY] And Jonathan Marchand says that, once you’re inside, you’re simply not treated like a person.   [MARCHAND] Basically, you’ll lose your citizenship when you enter a long-term care facility. You become an object that we warehouse away. An object of care and profit.   [ARSHY] You become an object of care. Something to be managed. Something that has to fit into a schedule and a routine. And when Jonathan describes what that’s like, it sounds exactly like what people with intellectual disabilities had to face in places like the Orillia Asylum for Idiots.  Here’s Madeline Burkhart again, talking about what life in that institution was like decades ago.    [BURKHART] There’s so many thousands of little decisions that we make for ourselves every day that we’re just taking away from people. So there’s that whole dehumanization, as well. Like even just deciding what clothes to wear, or when to turn the lights off, when to get up in the morning, when to go to bed at night. What you are going to eat, how long you would take to eat your meal… All those things were controlled. All aspects of your daily life was organized and imposed from above, from the administration of the institution.   [ARSHY] And here’s Jonathan Marchand talking about what life is like today in long-term care.   [MARCHAND] It’s incredibly difficult because when you enter, you lose control over your life in all aspects. You don’t have any choice over who touches your body to provide you assistance. You’ve got no choice or control. At what time are you gonna get up? When you go to bed, what time are you gonna eat? What you gonna eat? Um, what time are you gonna go to the toilet? Basically everything is managed for you.   [ARSHY] And in these institutions, both past and present, the residents or patients or inmates, are forced to conform to the needs of the staff.   [BURKHART] And you can understand it when you think about… If there were hundreds, sometimes thousands of people living together, you can’t organize that many people in a way that allows individual choice and freedom. And so the administrative needs of the institution always superseded the individual desires and needs of the residents.    [MARCHAND] Whenever there’s a conflict between your well-being, your rights and the rules, the law and the way the services are organized, it’s, it’s always the latter that wins.  In an institution, you need to keep the peace here and you need to stay in your lane, to stay quiet. They want you to be obedient. They want you to be kind at all times. You got to be a good cripple, right? You got to do what they say.   [ARSHY] If you’re not obedient, if you don’t stay quiet, you can be restrained. In Ontario in 2010, 16 per cent of long-term care residents were physically restrained on a daily basis. That number is now down to around four per cent.  Often, this is done because people are violent or a danger to themselves. But it’s still undeniably inhumane.  And then there’s the use of chemical restraints. Long-term care residents are often given anti-psychotic drugs, even if they have not been diagnosed with psychosis.   [RILEY] You can imagine that an antipsychotic drug has a lot of the same side-effects symptoms of waning mental capacity. So if you administered an antipsychotic drug, you can become very lethargic, you can become very confused. You can seem less interested in life in general. It’s… It’s a pacifier, essentially. It might make it much more difficult for you to manage your daily tasks.  So even if you went into a nursing home with mental capacity that was quite robust, if you were making a big fuss, if you’re complaining all the time and becoming a real disruption to all the other residents, it’s not out of the realm of possibility that you might be administered antipsychotic drugs just to calm you down, which could then further the case against you that your mental capacity is waning.   [ARSHY] A 2011 investigation by the BC government found that over 50 per cent of people in long-term care were on some kind of anti-psychotic medication. Many of them did not have any kind of documented diagnosis for psychosis. It’s true that historically, abusers have been attracted to the power that working in these kinds of institutions gives them. But that’s not the majority of people.   [BURGHART] We are horrified when we hear stories about staff doing terrible things in institutions, but we don’t make that easy.   [ARSHY] The systems that are set up almost demand that the residents are treated in these awful ways.    [BURGHART] It’s just harder, plain and simple, to be kind when you are looking after that many people and being asked to help 10 people to have a bath, or asked to help 20 people to eat their dinner, or whatever it may be, it takes away the opportunity for–for real care, I think. Institutions do not make it easy for people to be really kind and provide the care that we all are entitled to.    [ARSHY] If you’re in an institution, you lose control over almost everything.    [MARCHAND] And it goes even further than that. My experience is that they even want to control the way you die,   [ARSHY] At one point, when Jonathan was in the hospital, he wanted to just go home, whether or not he got the care he needed, even if it put his life in danger. But Jonathan was told that he couldn’t.   [MARCHAND] But he told me, “No, it’s dangerous. You can’t do that. We need to ensure your safety and we’ll go to court to stop you from going out.”   [ARSHY] This was coming from the same people who were pressuring him to end his own life. But they wouldn’t let him choose how.   [MARCHAND] So even in death, they want to control the way you die. So that’s… That’s messed up. You become an object to them that they have to keep track of. And an object doesn’t have any kind of rights whatsoever. You got to be this passive thing. I think it’s incredibly dehumanizing, and I don’t want to be part of that system anymore. I want to get out. I want to be able to live my own life according to my own values and be able to contribute to society like everyone else. I don’t see how anyone can live in a place like that. Frankly, I think humans are not made to live inside institutions.   PART THREE [ARSHY] In his first few years in long-term care, Jonathan Marchand considered acting on the advice so many medical professionals were giving him. Euthanasia.    [MARCHAND] Most people were pushing me toward euthanasia. You know, that conversation was coming up over and over again. So I started to get really depressed at that time. Um, and I was seeking, uh, ways, uh, to end my life. So, I was in this mindset that there was so way out, and death was my escape. But something happened. Eventually on the Internet, I met on Facebook… I met with other people with disabilities outside of, uh, Quebec. In Canada, in the United States, in Europe and in Australia, who had needs similar to mine, who were using ventilators or needed 24 hour assistance. And they had that assistance in their own home. And they were working. They had partners. They are… They had a normal life. So I was like, what the hell? Why can’t I get that in Quebec?   [ARSHY] Before long-term care, Jonathan had never been an activist. He didn’t think much about disability rights or liberation before he was trapped in this home. Once he started to connect with other people like him around the world, Jonathan realized he wasn’t the problem. His disability didn’t mean he had to live in long-term care. There are lots of people, just like him, living in their communities, having a normal life. And he saw how other people had gotten those changes made. Disabled people themselves have to demand it.    [MARCHAND] That’s the key. Because when you rely on third parties to do the work for you, oftentimes you end up with, uh, crumbs or, you know, things that, um, don’t respect your rights and don’t lead to your emancipation.   [ARSHY] He co-founded a cooperative with some friends to lobby the Quebec government to provide funding so people like him could live at home. And he argues that it’s actually cheaper to do that, than house people in long-term care.   [MARCHAND] There are no economic arguments against that proposition. Actually, you are throwing money away by continuing to invest in institutions.   [ARSHY] Throughout this season of Commons, we’ve been telling you about how underfunded and understaffed the long-term care system is. How we need higher standards of care, more resources, better training. But Jonathan thinks all of that is bullshit.    [MARCHAND] I think long-term care facilities should not exist. Um… It’s, um, something that’s been put in place to exclude and eliminate people with disabilities from society.   [ARSHY] Jonathan is in favour of abolition.   [MARCHAND] The idea that we can have good institutions is false. These places are designed to deprive the, the freedom of people with disabilities and the elderly. It’s incompatible with life.   [ARSHY] Jonathan believes that all institutions, whether it was an asylum 150 years ago, or long-term care today, are dehumanizing by their very nature, that more money isn’t going to fix this, that reform isn’t going make people’s lives better. Instead, we need to burn it all down. Let disabled people live in their own homes. Give them the money they need to hire caregivers that will come to them. Jonathan’s still fighting to get out of long-term care. He’s done dozens of interviews with the press. He’s tried to reach out to Quebec’s premier, François Legault, but all his calls have gone unanswered. And even if he does get out, he’s worried.    [MARCHAND] I’ve been inside for 10 years now and I’m starting to forget how it’s like to be living in the community like everyone else. When you enter a Long-Term Care Facility, it’s like your world shrinks from day-to-day, week-to-week, month-to-month, year-to-year, until your world becomes your–your room or the, the hallway, or the staff that surrounds you. If  I think too much about the future, when I have no future right now, I mean, it’s incredibly demoralizing. It’s, uh.. It can even be dangerous because, when you suffer a setback, then you can lose hope. And so I try to live day-by-day as much as I can. But I want to expand my world.   OUTRO For a century and a half, we have put disabled people in institutions against their will. Long-term care is just the latest iteration of that. For Jonathan, it all comes down to discrimination.   [MARCHAND] It’s a big cultural and systemic issue. People with disabilities are discriminated against every day, at all levels. And it goes even as far as to the idea that our lives are not worth treating and it’s better to be dead than to be disabled.   [ARSHY] Even as the pandemic has killed thousands of people in long-term care, he doesn’t expect things to get better.    [MARCHAND] So, there’s no political will that I see to really change things. And that’s what makes me very angry. There are solutions. We can do better. But it’s off the table, even now with thousands of people dead. What has been announced to change things, turn things around? Next to nothing. And if we don’t do something collectedly, they’re going to get away with it.   [ARSHY] The debate over the future of long-term care is just beginning. But maybe it shouldn’t have any future at all.    END CREDITS That’s your episode of Commons for the week. If you want to support us, click on the link in your show notes or go to commonspodcast.com This episode relied on work done by Sharon Riley at The Walrus, Kenneth Jackson at APTN, Dustin Galer, Madeline Burghardt, the team behind Hope is Not a Plan, and many, many others I want to give a special shout-out to Aimee Louw at The Walrus for all of her help.  If you want to get in touch with us, you can tweet at us at @COMMONSpod. You can also email me, Arshy@canadalandshow.com This episode was produced by me and Jordan Cornish, with additional production by Tiffany Lam. Our managing editor is Andréa Schmidt. And our music is by Nathan Burley.  If you like what we do, please help us make this show. Click on the link in your show notes or go to commonspodcast.com   I think you should be getting our newsletterGet a weekly note about our top stories.This is a good thing that we do. 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We have news.
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COMMONS returns!
Support us at commonspodcast.com Jonathan Marchand is one of the thousands of young disabled people living in long-term care. But Marchand doesn’t want to fix the system. He doesn’t think it can be reformed. Marchand is an abolitionist. For a century and a half, Canada has hidden away disabled people in institutions where they were neglected and abused. Is long-term care just the latest incarnation of this dark history?   COMMONS: Pandemic is currently focusing on how COVID-19 is affecting long-term care in Canada. Featured in this episode: Jonathan Marchand, Sharon J. Riley (The Walrus), Kenneth Jackson (APTN News), Madeline Burghardt, Dustin Galer To learn more: “When Is a Senior No Longer Capable of Making Their Own Decisions?” by Sharon J. Riley in The Walrus “‘Sitting duck’: Disabled woman, 27, lives in Toronto seniors home with COVID-19 outbreak” by Kenneth Jackson in APTN News Working Towards Equity: Disability Rights Activism and Employment in Late Twentieth-Century by Dustin Galer Broken: Institutions, Families, and the Construction of Intellectual Disability by Madeline Burghardt  Hope Is Not a Plan   This episode is sponsored by Freshbooks Additional music from Audio Network   TRANSCRIPT:    EPISODE 10 – “BURN IT DOWN”   COLD OPEN [ARSHY] Until 2010, Jonathan Marchand had a pretty normal life. He has muscular dystrophy, but that hadn’t been too much of an impediment for him.     [JONATHAN MARCHAND] I always had a disability. It’s a degenerative disability, so I walked until the age of 15. After that, I started to use a wheelchair and I didn’t need much help in my daily living.   [ARSHY] Jonathan’s a senior network engineer. He’s worked for different internet service providers in Quebec and in Australia. He has a partner he’s been with now for 18 years.   [MARCHAND] I was working. I had an active normal life, I had lots of projects for the future.   [ARSHY] And that’s how Jonathan expected things to go. But he didn’t really understand what his condition could do to him.   [MARCHAND] I was ill-advised by my doctors as well. I didn’t know what was in store for me. No one neither ever told me. So I was pretty ignorant about what could happen.   [ARSHY] And in 2010, it happened. He wasn’t feeling well, so he went to see a doctor. They discovered he had a bad case of pneumonia. Jonathan got sent to the ICU.   [MARCHAND] In the ICU there’s two weeks I don’t remember what happened.   [ARSHY] All he remembers are the terrifying hallucinations he experienced.   [MARCHAND] The only recollections of those two weeks are hallucinations, where people are torturing me, basically setting on fires, stabbing me, and, you know, all kinds of horrific experiences like that.   [ARSHY] When he finally came to, the doctors spoke to him.   [MARCHAND] And what they told me is that I would never come out of the– of the hospital because I was dependent now on a ventilator to breathe and there was no option to go back home.   [ARSHY] It was devastating news. And according to Jonathan, his doctors said that the best thing for him would be to refuse further treatment, and that would mean certain death.   [MARCHAND] And what they were pressuring me, pressuring me to accept these euthanasia, three different doctors had that talk with me and tried to pressure me into accepting that. And I spent a few weeks just looking at the ceiling, trying to work out what I was going to do, if I was going to indeed accept to, to be euthanized. Eventually, I refused because I wasn’t ready to die.    [ARSHY] Jonathan wanted to live. He had adapted to major life changes before. He could make his way through this, too. And for two years he tried to get out of the hospital and back to his own home. But the government insisted that his care needs were too high. They weren’t willing to pay for it. So Jonathan had to take the only option that was left on the table. At the age of 35, Jonathan Marchand moved into a long-term care home. I’m Arshy Mann and from Canadaland, this is Commons.   PART ONE [ARSHY] From the minute he moved into his long-term care home outside of Quebec City, Jonathan Marchand knew he didn’t belong there.   [MARCHAND] The first time I entered here, I was shocked. Really shocked. I got really depressed when I entered. And I stayed in my room for about three years and a half. I never went out of my room. I just stayed inside.    [ARSHY] Jonathan was promised that the CHSLD would be a place where he would have more autonomy and personal space. But he says it was just another hospital.  Many people would be surprised to find out that younger people like Jonathan Marchand end up in long-term care homes. We think of them as seniors homes, places where elderly people go at the end of their lives. But that’s the wrong way to look at it. These aren’t old age homes. These are places that house disabled people. They’re asylums. Now, that might seem like an odd claim because, of course, the vast majority of people who live in long-term care are quite elderly. But you don’t end up in long-term care just because you’re old. We know that 70 percent of people in long-term care have some form of dementia or other cognitive issue. The rest need help with some kind of physical ailment. Almost everyone who lives in long-term care is disabled, or perceived by the government to be disabled. And when Jonathan Marchand sees how differently the pandemic has affected people in long-term care, compared to the rest of the population, he sees it as a legacy of generations of discrimination against disabled people.   [MARCHAND] On one side you got the old and the disabled, living in long-term care facilities, dying by the thousands. And on the other side, you got the real citizens who contribute to society.   [ARSHY] And the institutionalization of disabled people has a long and dark history in this country. And it goes back all the way to the founding of the nation. The first institutions for disabled people in this country were founded shortly after confederation.   [DUSTIN GALER] These institutions, they were all part of the state-building process in the late 19th century, just as much, I think, as residential schools.   [ARSHY] That’s Dustin Galer, a historian and the author of Working Towards Equity, which covers the Canadian disability movement.    [MADELINE BURGHART] The first total institution for people with intellectual disabilities was opened in Canada, just outside Orillia, in Ontario, on the shores of Lake Simcoe in 1876. And the first name of that institution was the Orillia Asylum for Idiots. So that really demonstrates the kind of language that was used at the time. My name is Madeleine Burckhardt and I am an instructor in the School of Health Policy and Management at York University.    [ARSHY] The initial idea was to provide rehabilitation and training. And then people would then be sent back to their communities.    [BURGHART] Well, that sort of rehabilitative model shifted pretty quickly into what I call an “incarcerative model,” where people were not really receiving education or training very much. It was more just being housed.   [ARSHY] From the beginning, these places were overcrowded and underfunded. Abuse of all kinds was rampant. And people who were seen as deviant or non-conforming often ended up being housed there. Children from poor families, or women who were deemed unfit to raise a family, all ended up in these institutions.   [GALER] And particularly, they would treat adults with physical and intellectual disabilities and mental health issues with whatever the latest treatments were at the time. And of course, this often involved hard physical labor, isolation, electroshock therapy, all under the supervision of doctors.  And often, you know, it’s important to remember that disabled people were deposited here by families, often under the sincere belief they would be better off.    [ARSHY] By the turn of the century, a new perfidious idea was making its way through the Canadian medical and political establishments — eugenics.   [BURGHART] This was really being promoted as sound, good health policy. You know, that this was going to be good for the general population if we could rid the population of people who were considered feeble minded. And this was absolutely believed and absolutely promoted and institutions were a tool for that movement.   [ARSHY] The epicentre of this movement was Alberta. In 1928 the Albertan government passed the Sexual Sterilization Act. Children with disabilities in these institutions were amongst the many undesirables who were forcibly sterilized, usually without their knowledge. The law wasn’t repealed until 1972. But by the middle of the century, the tide had begun to turn against routine institutionalization.  Journalist Pierre Berton exposed the conditions inside the Orillia asylum in 1960.    [GALER] And people were just horrified by what they saw. People were just flocking around in diapers, and no, no semblance of care being had. Or, you know, overmedication, these types of things. And this actually helped start a movement to deinstitutionalize people with physical disability, intellectual developmental disabilities, and mental health issues.   [ARSHY] Mothers of disabled children pushed back against efforts to have their kids institutionalized. They argued that they should be supported at home, instead. And the arguments resonated. The institutions began to close.    [GALER] But the problem with the response to deinstitutionalization was that governments… They didn’t really commit enough resources to build out an adequate network of community services. So, a lot of the time, it was… It was almost seen as a cost-saving measure, like this movement to deinstitutionalize people kind of overlapped with the desire to reduce budgets.    [ARSHY] Many disabled Canadians ended up homeless, living in shelters, in chronic care in hospitals, and of course, in nursing homes in long-term care. But it was around this time that disabled Canadians found new avenues to advocate for themselves. Disability was becoming an identity.   [GALER] So there were different disability movements. But a big one that emerged in the 70s and 80s were consumer activists. So, these are people with disabilities, themselves, pushing back, demanding greater rights to protect them.    [ARSHY] And an important part of these movements was confronting the caregivers who once claimed to speak for disabled people. Disabled people made it clear that they are their own best advocates. By the 2000s, disability rights and liberation movements were widespread. But many disabled Canadians continue to live in institutions that don’t serve their needs, where they’re abused and neglected. The Huronia Regional Centre, first known as the Orillia Asylum for Idiots, only closed down in 2009.   PART TWO [ARSHY] So what makes long-term care different from these earlier institutions for disabled people? I think if we’re being honest, it’s not much. And a major reason why is that there are specific processes that happen when you’re institutionalized. By their very nature, they’re dehumanizing. Let’s start out with how you end up in long-term care.   [SHARON RILEY] We have seen surveys coming out of provinces like B.C. where advocates have surveyed nursing home residents and found that at least half of them say they don’t want to be there.   [ARSHY] That’s Sharon J. Riley, an investigative journalist, and a longtime friend of the show. She recently tackled this very question in a big feature she wrote and reported for The Walrus. There are some people who plan for long-term care, but that’s not the majority. For a lot of the people who are deemed to have dementia or another intellectual disability, it starts with a capacity test.   [RILEY] A capacity test is a tool that’s used to assess someone’s mental capacity. It’s important to note that mental capacity is not about how smart you are. It’s about your ability to make decisions, taking into account the implications of those decisions. When an assessor who’s measuring capacity is trying to make that determination, they can ask you all sorts of questions. They can ask you questions about your living situation. So say, “What would happen to you if you fell at home,” or ask you questions about how you pay your bills. “What would happen if you continue living at home?” “What would happen if you moved to a nursing home,” and sort of assess whether you understand the implications of each of those things. Not whether you want it or not, but whether you understand what it means. But an assessor can also look at cognitive abilities as sort of a way to feed into this determination. And that’s where things get a little bit tricky. ‘Cause there are many different cognitive tests out there. They can ask you kind of jarring and weird questions. Being asked, “Can you draw a clock face? Can you name as many words as you can think of that start with the letter ‘F’?” Can you say ifs, ands and buts three times and given a time limit on each of these things? So you might be very flustered. You might have 30 seconds to name as many words as you can think of that start with the letter F. Also, another test that can feed into a capacity assessment, though it is not measuring capacity itself, is measuring depression. So you might be asked questions like, “Do you feel pretty worthless right now, or is it wonderful to be alive?” These are, like, word for word questions on a depression scale assessment. And those answers can also feed into an assessor’s determination of whether or not you have mental capacity.   [ARSHY] These tests often last only 30 or 45 minutes. If the assessor decides that you don’t have the capacity to make your own decisions, from that one interview, the state can take over life. You can lose control of your finances, and they can force you to leave your home and go live in long-term care.   [RILEY] So the implications of the capacity tests can be enormous. Even though it can be short and the questions can seem strange, in the end, the assessor can decide to take away some pretty huge liberties that we enjoy as adults.    [ARSHY] For the majority of Canadians, there are few ways to fight the decision. Ontario is the only province that even has an appeals process. But that’s not the only way that people end up in the system. Many, like Jonathan Marchand, are forced into it because the government says that there’s nowhere else they can get the level of care that they require.   [JONATHAN MARCHAND] They could not give me enough hours of assistance the whole day. There are hard caps on the hours that you can get in Quebec. It’s around 44 hours a week and I needed 168 hours a week.   [ARSHY] Or take the case of Cayleah Lamarsh.    [KENNETH JACKSON]  He’s a nice person to speak to. She’s very helpful. Always available.   [ARSHY] That’s Kenneth Jackson, a reporter with Aboriginal People’s Television Network. He’s been reporting on Cayleah’s situation from the beginning of the pandemic. Cayleah was abandoned by her mother at a very young age. By four, she was a Crown ward. And by eight she was in a group home.     [JACKSON] So you can just imagine at that age, eight. By then, that’s almost pure hell. For the most part, right? Like, that’s a lot of damage, you know, on a young developing mind.   [ARSHY] She was abused in various homes and, by 18, she aged out of the system. And by 21, she was homeless.   [JACKSON] She was on a Toronto bus. The freak accident, and she got flung forward and smashed her neck or shoulder off one of the poles, and she’s paralyzed from the waist down. And there was nowhere for her to go. So she went into a long-term care home. And she knows that she doesn’t want to be there. She’s been trying to get out. Even the doctor that first saw her says, “You don’t belong here. We can’t care for you. There’s nothing here for you.”   [ARSHY] Cayleah doesn’t need care 24/7. She just needs some help with things like getting out of bed or bathing. But long-term care was the only option presented to her.   [JACKSON] Caylee was abandoned in a child welfare system. Now she’s abandoned in a long-term care system. The long-term care one, that’s for life. She has a life sentence in that home.   [ARSHY] And Jonathan Marchand says that, once you’re inside, you’re simply not treated like a person.   [MARCHAND] Basically, you’ll lose your citizenship when you enter a long-term care facility. You become an object that we warehouse away. An object of care and profit.   [ARSHY] You become an object of care. Something to be managed. Something that has to fit into a schedule and a routine. And when Jonathan describes what that’s like, it sounds exactly like what people with intellectual disabilities had to face in places like the Orillia Asylum for Idiots.  Here’s Madeline Burkhart again, talking about what life in that institution was like decades ago.    [BURKHART] There’s so many thousands of little decisions that we make for ourselves every day that we’re just taking away from people. So there’s that whole dehumanization, as well. Like even just deciding what clothes to wear, or when to turn the lights off, when to get up in the morning, when to go to bed at night. What you are going to eat, how long you would take to eat your meal… All those things were controlled. All aspects of your daily life was organized and imposed from above, from the administration of the institution.   [ARSHY] And here’s Jonathan Marchand talking about what life is like today in long-term care.   [MARCHAND] It’s incredibly difficult because when you enter, you lose control over your life in all aspects. You don’t have any choice over who touches your body to provide you assistance. You’ve got no choice or control. At what time are you gonna get up? When you go to bed, what time are you gonna eat? What you gonna eat? Um, what time are you gonna go to the toilet? Basically everything is managed for you.   [ARSHY] And in these institutions, both past and present, the residents or patients or inmates, are forced to conform to the needs of the staff.   [BURKHART] And you can understand it when you think about… If there were hundreds, sometimes thousands of people living together, you can’t organize that many people in a way that allows individual choice and freedom. And so the administrative needs of the institution always superseded the individual desires and needs of the residents.    [MARCHAND] Whenever there’s a conflict between your well-being, your rights and the rules, the law and the way the services are organized, it’s, it’s always the latter that wins.  In an institution, you need to keep the peace here and you need to stay in your lane, to stay quiet. They want you to be obedient. They want you to be kind at all times. You got to be a good cripple, right? You got to do what they say.   [ARSHY] If you’re not obedient, if you don’t stay quiet, you can be restrained. In Ontario in 2010, 16 per cent of long-term care residents were physically restrained on a daily basis. That number is now down to around four per cent.  Often, this is done because people are violent or a danger to themselves. But it’s still undeniably inhumane.  And then there’s the use of chemical restraints. Long-term care residents are often given anti-psychotic drugs, even if they have not been diagnosed with psychosis.   [RILEY] You can imagine that an antipsychotic drug has a lot of the same side-effects symptoms of waning mental capacity. So if you administered an antipsychotic drug, you can become very lethargic, you can become very confused. You can seem less interested in life in general. It’s… It’s a pacifier, essentially. It might make it much more difficult for you to manage your daily tasks.  So even if you went into a nursing home with mental capacity that was quite robust, if you were making a big fuss, if you’re complaining all the time and becoming a real disruption to all the other residents, it’s not out of the realm of possibility that you might be administered antipsychotic drugs just to calm you down, which could then further the case against you that your mental capacity is waning.   [ARSHY] A 2011 investigation by the BC government found that over 50 per cent of people in long-term care were on some kind of anti-psychotic medication. Many of them did not have any kind of documented diagnosis for psychosis. It’s true that historically, abusers have been attracted to the power that working in these kinds of institutions gives them. But that’s not the majority of people.   [BURGHART] We are horrified when we hear stories about staff doing terrible things in institutions, but we don’t make that easy.   [ARSHY] The systems that are set up almost demand that the residents are treated in these awful ways.    [BURGHART] It’s just harder, plain and simple, to be kind when you are looking after that many people and being asked to help 10 people to have a bath, or asked to help 20 people to eat their dinner, or whatever it may be, it takes away the opportunity for–for real care, I think. Institutions do not make it easy for people to be really kind and provide the care that we all are entitled to.    [ARSHY] If you’re in an institution, you lose control over almost everything.    [MARCHAND] And it goes even further than that. My experience is that they even want to control the way you die,   [ARSHY] At one point, when Jonathan was in the hospital, he wanted to just go home, whether or not he got the care he needed, even if it put his life in danger. But Jonathan was told that he couldn’t.   [MARCHAND] But he told me, “No, it’s dangerous. You can’t do that. We need to ensure your safety and we’ll go to court to stop you from going out.”   [ARSHY] This was coming from the same people who were pressuring him to end his own life. But they wouldn’t let him choose how.   [MARCHAND] So even in death, they want to control the way you die. So that’s… That’s messed up. You become an object to them that they have to keep track of. And an object doesn’t have any kind of rights whatsoever. You got to be this passive thing. I think it’s incredibly dehumanizing, and I don’t want to be part of that system anymore. I want to get out. I want to be able to live my own life according to my own values and be able to contribute to society like everyone else. I don’t see how anyone can live in a place like that. Frankly, I think humans are not made to live inside institutions.   PART THREE [ARSHY] In his first few years in long-term care, Jonathan Marchand considered acting on the advice so many medical professionals were giving him. Euthanasia.    [MARCHAND] Most people were pushing me toward euthanasia. You know, that conversation was coming up over and over again. So I started to get really depressed at that time. Um, and I was seeking, uh, ways, uh, to end my life. So, I was in this mindset that there was so way out, and death was my escape. But something happened. Eventually on the Internet, I met on Facebook… I met with other people with disabilities outside of, uh, Quebec. In Canada, in the United States, in Europe and in Australia, who had needs similar to mine, who were using ventilators or needed 24 hour assistance. And they had that assistance in their own home. And they were working. They had partners. They are… They had a normal life. So I was like, what the hell? Why can’t I get that in Quebec?   [ARSHY] Before long-term care, Jonathan had never been an activist. He didn’t think much about disability rights or liberation before he was trapped in this home. Once he started to connect with other people like him around the world, Jonathan realized he wasn’t the problem. His disability didn’t mean he had to live in long-term care. There are lots of people, just like him, living in their communities, having a normal life. And he saw how other people had gotten those changes made. Disabled people themselves have to demand it.    [MARCHAND] That’s the key. Because when you rely on third parties to do the work for you, oftentimes you end up with, uh, crumbs or, you know, things that, um, don’t respect your rights and don’t lead to your emancipation.   [ARSHY] He co-founded a cooperative with some friends to lobby the Quebec government to provide funding so people like him could live at home. And he argues that it’s actually cheaper to do that, than house people in long-term care.   [MARCHAND] There are no economic arguments against that proposition. Actually, you are throwing money away by continuing to invest in institutions.   [ARSHY] Throughout this season of Commons, we’ve been telling you about how underfunded and understaffed the long-term care system is. How we need higher standards of care, more resources, better training. But Jonathan thinks all of that is bullshit.    [MARCHAND] I think long-term care facilities should not exist. Um… It’s, um, something that’s been put in place to exclude and eliminate people with disabilities from society.   [ARSHY] Jonathan is in favour of abolition.   [MARCHAND] The idea that we can have good institutions is false. These places are designed to deprive the, the freedom of people with disabilities and the elderly. It’s incompatible with life.   [ARSHY] Jonathan believes that all institutions, whether it was an asylum 150 years ago, or long-term care today, are dehumanizing by their very nature, that more money isn’t going to fix this, that reform isn’t going make people’s lives better. Instead, we need to burn it all down. Let disabled people live in their own homes. Give them the money they need to hire caregivers that will come to them. Jonathan’s still fighting to get out of long-term care. He’s done dozens of interviews with the press. He’s tried to reach out to Quebec’s premier, François Legault, but all his calls have gone unanswered. And even if he does get out, he’s worried.    [MARCHAND] I’ve been inside for 10 years now and I’m starting to forget how it’s like to be living in the community like everyone else. When you enter a Long-Term Care Facility, it’s like your world shrinks from day-to-day, week-to-week, month-to-month, year-to-year, until your world becomes your–your room or the, the hallway, or the staff that surrounds you. If  I think too much about the future, when I have no future right now, I mean, it’s incredibly demoralizing. It’s, uh.. It can even be dangerous because, when you suffer a setback, then you can lose hope. And so I try to live day-by-day as much as I can. But I want to expand my world.   OUTRO For a century and a half, we have put disabled people in institutions against their will. Long-term care is just the latest iteration of that. For Jonathan, it all comes down to discrimination.   [MARCHAND] It’s a big cultural and systemic issue. People with disabilities are discriminated against every day, at all levels. And it goes even as far as to the idea that our lives are not worth treating and it’s better to be dead than to be disabled.   [ARSHY] Even as the pandemic has killed thousands of people in long-term care, he doesn’t expect things to get better.    [MARCHAND] So, there’s no political will that I see to really change things. And that’s what makes me very angry. There are solutions. We can do better. But it’s off the table, even now with thousands of people dead. What has been announced to change things, turn things around? Next to nothing. And if we don’t do something collectedly, they’re going to get away with it.   [ARSHY] The debate over the future of long-term care is just beginning. But maybe it shouldn’t have any future at all.    END CREDITS That’s your episode of Commons for the week. If you want to support us, click on the link in your show notes or go to commonspodcast.com This episode relied on work done by Sharon Riley at The Walrus, Kenneth Jackson at APTN, Dustin Galer, Madeline Burghardt, the team behind Hope is Not a Plan, and many, many others I want to give a special shout-out to Aimee Louw at The Walrus for all of her help.  If you want to get in touch with us, you can tweet at us at @COMMONSpod. You can also email me, Arshy@canadalandshow.com This episode was produced by me and Jordan Cornish, with additional production by Tiffany Lam. Our managing editor is Andréa Schmidt. And our music is by Nathan Burley.  If you like what we do, please help us make this show. Click on the link in your show notes or go to commonspodcast.com   I think you should be getting our newsletterGet a weekly note about our top stories.This is a good thing that we do. 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February 13, 2017
68
Strong Hearts To The Front
Support us at commonspodcast.com Jonathan Marchand is one of the thousands of young disabled people living in long-term care. But Marchand doesn’t want to fix the system. He doesn’t think it can be reformed. Marchand is an abolitionist. For a century and a half, Canada has hidden away disabled people in institutions where they were neglected and abused. Is long-term care just the latest incarnation of this dark history?   COMMONS: Pandemic is currently focusing on how COVID-19 is affecting long-term care in Canada. Featured in this episode: Jonathan Marchand, Sharon J. Riley (The Walrus), Kenneth Jackson (APTN News), Madeline Burghardt, Dustin Galer To learn more: “When Is a Senior No Longer Capable of Making Their Own Decisions?” by Sharon J. Riley in The Walrus “‘Sitting duck’: Disabled woman, 27, lives in Toronto seniors home with COVID-19 outbreak” by Kenneth Jackson in APTN News Working Towards Equity: Disability Rights Activism and Employment in Late Twentieth-Century by Dustin Galer Broken: Institutions, Families, and the Construction of Intellectual Disability by Madeline Burghardt  Hope Is Not a Plan   This episode is sponsored by Freshbooks Additional music from Audio Network   TRANSCRIPT:    EPISODE 10 – “BURN IT DOWN”   COLD OPEN [ARSHY] Until 2010, Jonathan Marchand had a pretty normal life. He has muscular dystrophy, but that hadn’t been too much of an impediment for him.     [JONATHAN MARCHAND] I always had a disability. It’s a degenerative disability, so I walked until the age of 15. After that, I started to use a wheelchair and I didn’t need much help in my daily living.   [ARSHY] Jonathan’s a senior network engineer. He’s worked for different internet service providers in Quebec and in Australia. He has a partner he’s been with now for 18 years.   [MARCHAND] I was working. I had an active normal life, I had lots of projects for the future.   [ARSHY] And that’s how Jonathan expected things to go. But he didn’t really understand what his condition could do to him.   [MARCHAND] I was ill-advised by my doctors as well. I didn’t know what was in store for me. No one neither ever told me. So I was pretty ignorant about what could happen.   [ARSHY] And in 2010, it happened. He wasn’t feeling well, so he went to see a doctor. They discovered he had a bad case of pneumonia. Jonathan got sent to the ICU.   [MARCHAND] In the ICU there’s two weeks I don’t remember what happened.   [ARSHY] All he remembers are the terrifying hallucinations he experienced.   [MARCHAND] The only recollections of those two weeks are hallucinations, where people are torturing me, basically setting on fires, stabbing me, and, you know, all kinds of horrific experiences like that.   [ARSHY] When he finally came to, the doctors spoke to him.   [MARCHAND] And what they told me is that I would never come out of the– of the hospital because I was dependent now on a ventilator to breathe and there was no option to go back home.   [ARSHY] It was devastating news. And according to Jonathan, his doctors said that the best thing for him would be to refuse further treatment, and that would mean certain death.   [MARCHAND] And what they were pressuring me, pressuring me to accept these euthanasia, three different doctors had that talk with me and tried to pressure me into accepting that. And I spent a few weeks just looking at the ceiling, trying to work out what I was going to do, if I was going to indeed accept to, to be euthanized. Eventually, I refused because I wasn’t ready to die.    [ARSHY] Jonathan wanted to live. He had adapted to major life changes before. He could make his way through this, too. And for two years he tried to get out of the hospital and back to his own home. But the government insisted that his care needs were too high. They weren’t willing to pay for it. So Jonathan had to take the only option that was left on the table. At the age of 35, Jonathan Marchand moved into a long-term care home. I’m Arshy Mann and from Canadaland, this is Commons.   PART ONE [ARSHY] From the minute he moved into his long-term care home outside of Quebec City, Jonathan Marchand knew he didn’t belong there.   [MARCHAND] The first time I entered here, I was shocked. Really shocked. I got really depressed when I entered. And I stayed in my room for about three years and a half. I never went out of my room. I just stayed inside.    [ARSHY] Jonathan was promised that the CHSLD would be a place where he would have more autonomy and personal space. But he says it was just another hospital.  Many people would be surprised to find out that younger people like Jonathan Marchand end up in long-term care homes. We think of them as seniors homes, places where elderly people go at the end of their lives. But that’s the wrong way to look at it. These aren’t old age homes. These are places that house disabled people. They’re asylums. Now, that might seem like an odd claim because, of course, the vast majority of people who live in long-term care are quite elderly. But you don’t end up in long-term care just because you’re old. We know that 70 percent of people in long-term care have some form of dementia or other cognitive issue. The rest need help with some kind of physical ailment. Almost everyone who lives in long-term care is disabled, or perceived by the government to be disabled. And when Jonathan Marchand sees how differently the pandemic has affected people in long-term care, compared to the rest of the population, he sees it as a legacy of generations of discrimination against disabled people.   [MARCHAND] On one side you got the old and the disabled, living in long-term care facilities, dying by the thousands. And on the other side, you got the real citizens who contribute to society.   [ARSHY] And the institutionalization of disabled people has a long and dark history in this country. And it goes back all the way to the founding of the nation. The first institutions for disabled people in this country were founded shortly after confederation.   [DUSTIN GALER] These institutions, they were all part of the state-building process in the late 19th century, just as much, I think, as residential schools.   [ARSHY] That’s Dustin Galer, a historian and the author of Working Towards Equity, which covers the Canadian disability movement.    [MADELINE BURGHART] The first total institution for people with intellectual disabilities was opened in Canada, just outside Orillia, in Ontario, on the shores of Lake Simcoe in 1876. And the first name of that institution was the Orillia Asylum for Idiots. So that really demonstrates the kind of language that was used at the time. My name is Madeleine Burckhardt and I am an instructor in the School of Health Policy and Management at York University.    [ARSHY] The initial idea was to provide rehabilitation and training. And then people would then be sent back to their communities.    [BURGHART] Well, that sort of rehabilitative model shifted pretty quickly into what I call an “incarcerative model,” where people were not really receiving education or training very much. It was more just being housed.   [ARSHY] From the beginning, these places were overcrowded and underfunded. Abuse of all kinds was rampant. And people who were seen as deviant or non-conforming often ended up being housed there. Children from poor families, or women who were deemed unfit to raise a family, all ended up in these institutions.   [GALER] And particularly, they would treat adults with physical and intellectual disabilities and mental health issues with whatever the latest treatments were at the time. And of course, this often involved hard physical labor, isolation, electroshock therapy, all under the supervision of doctors.  And often, you know, it’s important to remember that disabled people were deposited here by families, often under the sincere belief they would be better off.    [ARSHY] By the turn of the century, a new perfidious idea was making its way through the Canadian medical and political establishments — eugenics.   [BURGHART] This was really being promoted as sound, good health policy. You know, that this was going to be good for the general population if we could rid the population of people who were considered feeble minded. And this was absolutely believed and absolutely promoted and institutions were a tool for that movement.   [ARSHY] The epicentre of this movement was Alberta. In 1928 the Albertan government passed the Sexual Sterilization Act. Children with disabilities in these institutions were amongst the many undesirables who were forcibly sterilized, usually without their knowledge. The law wasn’t repealed until 1972. But by the middle of the century, the tide had begun to turn against routine institutionalization.  Journalist Pierre Berton exposed the conditions inside the Orillia asylum in 1960.    [GALER] And people were just horrified by what they saw. People were just flocking around in diapers, and no, no semblance of care being had. Or, you know, overmedication, these types of things. And this actually helped start a movement to deinstitutionalize people with physical disability, intellectual developmental disabilities, and mental health issues.   [ARSHY] Mothers of disabled children pushed back against efforts to have their kids institutionalized. They argued that they should be supported at home, instead. And the arguments resonated. The institutions began to close.    [GALER] But the problem with the response to deinstitutionalization was that governments… They didn’t really commit enough resources to build out an adequate network of community services. So, a lot of the time, it was… It was almost seen as a cost-saving measure, like this movement to deinstitutionalize people kind of overlapped with the desire to reduce budgets.    [ARSHY] Many disabled Canadians ended up homeless, living in shelters, in chronic care in hospitals, and of course, in nursing homes in long-term care. But it was around this time that disabled Canadians found new avenues to advocate for themselves. Disability was becoming an identity.   [GALER] So there were different disability movements. But a big one that emerged in the 70s and 80s were consumer activists. So, these are people with disabilities, themselves, pushing back, demanding greater rights to protect them.    [ARSHY] And an important part of these movements was confronting the caregivers who once claimed to speak for disabled people. Disabled people made it clear that they are their own best advocates. By the 2000s, disability rights and liberation movements were widespread. But many disabled Canadians continue to live in institutions that don’t serve their needs, where they’re abused and neglected. The Huronia Regional Centre, first known as the Orillia Asylum for Idiots, only closed down in 2009.   PART TWO [ARSHY] So what makes long-term care different from these earlier institutions for disabled people? I think if we’re being honest, it’s not much. And a major reason why is that there are specific processes that happen when you’re institutionalized. By their very nature, they’re dehumanizing. Let’s start out with how you end up in long-term care.   [SHARON RILEY] We have seen surveys coming out of provinces like B.C. where advocates have surveyed nursing home residents and found that at least half of them say they don’t want to be there.   [ARSHY] That’s Sharon J. Riley, an investigative journalist, and a longtime friend of the show. She recently tackled this very question in a big feature she wrote and reported for The Walrus. There are some people who plan for long-term care, but that’s not the majority. For a lot of the people who are deemed to have dementia or another intellectual disability, it starts with a capacity test.   [RILEY] A capacity test is a tool that’s used to assess someone’s mental capacity. It’s important to note that mental capacity is not about how smart you are. It’s about your ability to make decisions, taking into account the implications of those decisions. When an assessor who’s measuring capacity is trying to make that determination, they can ask you all sorts of questions. They can ask you questions about your living situation. So say, “What would happen to you if you fell at home,” or ask you questions about how you pay your bills. “What would happen if you continue living at home?” “What would happen if you moved to a nursing home,” and sort of assess whether you understand the implications of each of those things. Not whether you want it or not, but whether you understand what it means. But an assessor can also look at cognitive abilities as sort of a way to feed into this determination. And that’s where things get a little bit tricky. ‘Cause there are many different cognitive tests out there. They can ask you kind of jarring and weird questions. Being asked, “Can you draw a clock face? Can you name as many words as you can think of that start with the letter ‘F’?” Can you say ifs, ands and buts three times and given a time limit on each of these things? So you might be very flustered. You might have 30 seconds to name as many words as you can think of that start with the letter F. Also, another test that can feed into a capacity assessment, though it is not measuring capacity itself, is measuring depression. So you might be asked questions like, “Do you feel pretty worthless right now, or is it wonderful to be alive?” These are, like, word for word questions on a depression scale assessment. And those answers can also feed into an assessor’s determination of whether or not you have mental capacity.   [ARSHY] These tests often last only 30 or 45 minutes. If the assessor decides that you don’t have the capacity to make your own decisions, from that one interview, the state can take over life. You can lose control of your finances, and they can force you to leave your home and go live in long-term care.   [RILEY] So the implications of the capacity tests can be enormous. Even though it can be short and the questions can seem strange, in the end, the assessor can decide to take away some pretty huge liberties that we enjoy as adults.    [ARSHY] For the majority of Canadians, there are few ways to fight the decision. Ontario is the only province that even has an appeals process. But that’s not the only way that people end up in the system. Many, like Jonathan Marchand, are forced into it because the government says that there’s nowhere else they can get the level of care that they require.   [JONATHAN MARCHAND] They could not give me enough hours of assistance the whole day. There are hard caps on the hours that you can get in Quebec. It’s around 44 hours a week and I needed 168 hours a week.   [ARSHY] Or take the case of Cayleah Lamarsh.    [KENNETH JACKSON]  He’s a nice person to speak to. She’s very helpful. Always available.   [ARSHY] That’s Kenneth Jackson, a reporter with Aboriginal People’s Television Network. He’s been reporting on Cayleah’s situation from the beginning of the pandemic. Cayleah was abandoned by her mother at a very young age. By four, she was a Crown ward. And by eight she was in a group home.     [JACKSON] So you can just imagine at that age, eight. By then, that’s almost pure hell. For the most part, right? Like, that’s a lot of damage, you know, on a young developing mind.   [ARSHY] She was abused in various homes and, by 18, she aged out of the system. And by 21, she was homeless.   [JACKSON] She was on a Toronto bus. The freak accident, and she got flung forward and smashed her neck or shoulder off one of the poles, and she’s paralyzed from the waist down. And there was nowhere for her to go. So she went into a long-term care home. And she knows that she doesn’t want to be there. She’s been trying to get out. Even the doctor that first saw her says, “You don’t belong here. We can’t care for you. There’s nothing here for you.”   [ARSHY] Cayleah doesn’t need care 24/7. She just needs some help with things like getting out of bed or bathing. But long-term care was the only option presented to her.   [JACKSON] Caylee was abandoned in a child welfare system. Now she’s abandoned in a long-term care system. The long-term care one, that’s for life. She has a life sentence in that home.   [ARSHY] And Jonathan Marchand says that, once you’re inside, you’re simply not treated like a person.   [MARCHAND] Basically, you’ll lose your citizenship when you enter a long-term care facility. You become an object that we warehouse away. An object of care and profit.   [ARSHY] You become an object of care. Something to be managed. Something that has to fit into a schedule and a routine. And when Jonathan describes what that’s like, it sounds exactly like what people with intellectual disabilities had to face in places like the Orillia Asylum for Idiots.  Here’s Madeline Burkhart again, talking about what life in that institution was like decades ago.    [BURKHART] There’s so many thousands of little decisions that we make for ourselves every day that we’re just taking away from people. So there’s that whole dehumanization, as well. Like even just deciding what clothes to wear, or when to turn the lights off, when to get up in the morning, when to go to bed at night. What you are going to eat, how long you would take to eat your meal… All those things were controlled. All aspects of your daily life was organized and imposed from above, from the administration of the institution.   [ARSHY] And here’s Jonathan Marchand talking about what life is like today in long-term care.   [MARCHAND] It’s incredibly difficult because when you enter, you lose control over your life in all aspects. You don’t have any choice over who touches your body to provide you assistance. You’ve got no choice or control. At what time are you gonna get up? When you go to bed, what time are you gonna eat? What you gonna eat? Um, what time are you gonna go to the toilet? Basically everything is managed for you.   [ARSHY] And in these institutions, both past and present, the residents or patients or inmates, are forced to conform to the needs of the staff.   [BURKHART] And you can understand it when you think about… If there were hundreds, sometimes thousands of people living together, you can’t organize that many people in a way that allows individual choice and freedom. And so the administrative needs of the institution always superseded the individual desires and needs of the residents.    [MARCHAND] Whenever there’s a conflict between your well-being, your rights and the rules, the law and the way the services are organized, it’s, it’s always the latter that wins.  In an institution, you need to keep the peace here and you need to stay in your lane, to stay quiet. They want you to be obedient. They want you to be kind at all times. You got to be a good cripple, right? You got to do what they say.   [ARSHY] If you’re not obedient, if you don’t stay quiet, you can be restrained. In Ontario in 2010, 16 per cent of long-term care residents were physically restrained on a daily basis. That number is now down to around four per cent.  Often, this is done because people are violent or a danger to themselves. But it’s still undeniably inhumane.  And then there’s the use of chemical restraints. Long-term care residents are often given anti-psychotic drugs, even if they have not been diagnosed with psychosis.   [RILEY] You can imagine that an antipsychotic drug has a lot of the same side-effects symptoms of waning mental capacity. So if you administered an antipsychotic drug, you can become very lethargic, you can become very confused. You can seem less interested in life in general. It’s… It’s a pacifier, essentially. It might make it much more difficult for you to manage your daily tasks.  So even if you went into a nursing home with mental capacity that was quite robust, if you were making a big fuss, if you’re complaining all the time and becoming a real disruption to all the other residents, it’s not out of the realm of possibility that you might be administered antipsychotic drugs just to calm you down, which could then further the case against you that your mental capacity is waning.   [ARSHY] A 2011 investigation by the BC government found that over 50 per cent of people in long-term care were on some kind of anti-psychotic medication. Many of them did not have any kind of documented diagnosis for psychosis. It’s true that historically, abusers have been attracted to the power that working in these kinds of institutions gives them. But that’s not the majority of people.   [BURGHART] We are horrified when we hear stories about staff doing terrible things in institutions, but we don’t make that easy.   [ARSHY] The systems that are set up almost demand that the residents are treated in these awful ways.    [BURGHART] It’s just harder, plain and simple, to be kind when you are looking after that many people and being asked to help 10 people to have a bath, or asked to help 20 people to eat their dinner, or whatever it may be, it takes away the opportunity for–for real care, I think. Institutions do not make it easy for people to be really kind and provide the care that we all are entitled to.    [ARSHY] If you’re in an institution, you lose control over almost everything.    [MARCHAND] And it goes even further than that. My experience is that they even want to control the way you die,   [ARSHY] At one point, when Jonathan was in the hospital, he wanted to just go home, whether or not he got the care he needed, even if it put his life in danger. But Jonathan was told that he couldn’t.   [MARCHAND] But he told me, “No, it’s dangerous. You can’t do that. We need to ensure your safety and we’ll go to court to stop you from going out.”   [ARSHY] This was coming from the same people who were pressuring him to end his own life. But they wouldn’t let him choose how.   [MARCHAND] So even in death, they want to control the way you die. So that’s… That’s messed up. You become an object to them that they have to keep track of. And an object doesn’t have any kind of rights whatsoever. You got to be this passive thing. I think it’s incredibly dehumanizing, and I don’t want to be part of that system anymore. I want to get out. I want to be able to live my own life according to my own values and be able to contribute to society like everyone else. I don’t see how anyone can live in a place like that. Frankly, I think humans are not made to live inside institutions.   PART THREE [ARSHY] In his first few years in long-term care, Jonathan Marchand considered acting on the advice so many medical professionals were giving him. Euthanasia.    [MARCHAND] Most people were pushing me toward euthanasia. You know, that conversation was coming up over and over again. So I started to get really depressed at that time. Um, and I was seeking, uh, ways, uh, to end my life. So, I was in this mindset that there was so way out, and death was my escape. But something happened. Eventually on the Internet, I met on Facebook… I met with other people with disabilities outside of, uh, Quebec. In Canada, in the United States, in Europe and in Australia, who had needs similar to mine, who were using ventilators or needed 24 hour assistance. And they had that assistance in their own home. And they were working. They had partners. They are… They had a normal life. So I was like, what the hell? Why can’t I get that in Quebec?   [ARSHY] Before long-term care, Jonathan had never been an activist. He didn’t think much about disability rights or liberation before he was trapped in this home. Once he started to connect with other people like him around the world, Jonathan realized he wasn’t the problem. His disability didn’t mean he had to live in long-term care. There are lots of people, just like him, living in their communities, having a normal life. And he saw how other people had gotten those changes made. Disabled people themselves have to demand it.    [MARCHAND] That’s the key. Because when you rely on third parties to do the work for you, oftentimes you end up with, uh, crumbs or, you know, things that, um, don’t respect your rights and don’t lead to your emancipation.   [ARSHY] He co-founded a cooperative with some friends to lobby the Quebec government to provide funding so people like him could live at home. And he argues that it’s actually cheaper to do that, than house people in long-term care.   [MARCHAND] There are no economic arguments against that proposition. Actually, you are throwing money away by continuing to invest in institutions.   [ARSHY] Throughout this season of Commons, we’ve been telling you about how underfunded and understaffed the long-term care system is. How we need higher standards of care, more resources, better training. But Jonathan thinks all of that is bullshit.    [MARCHAND] I think long-term care facilities should not exist. Um… It’s, um, something that’s been put in place to exclude and eliminate people with disabilities from society.   [ARSHY] Jonathan is in favour of abolition.   [MARCHAND] The idea that we can have good institutions is false. These places are designed to deprive the, the freedom of people with disabilities and the elderly. It’s incompatible with life.   [ARSHY] Jonathan believes that all institutions, whether it was an asylum 150 years ago, or long-term care today, are dehumanizing by their very nature, that more money isn’t going to fix this, that reform isn’t going make people’s lives better. Instead, we need to burn it all down. Let disabled people live in their own homes. Give them the money they need to hire caregivers that will come to them. Jonathan’s still fighting to get out of long-term care. He’s done dozens of interviews with the press. He’s tried to reach out to Quebec’s premier, François Legault, but all his calls have gone unanswered. And even if he does get out, he’s worried.    [MARCHAND] I’ve been inside for 10 years now and I’m starting to forget how it’s like to be living in the community like everyone else. When you enter a Long-Term Care Facility, it’s like your world shrinks from day-to-day, week-to-week, month-to-month, year-to-year, until your world becomes your–your room or the, the hallway, or the staff that surrounds you. If  I think too much about the future, when I have no future right now, I mean, it’s incredibly demoralizing. It’s, uh.. It can even be dangerous because, when you suffer a setback, then you can lose hope. And so I try to live day-by-day as much as I can. But I want to expand my world.   OUTRO For a century and a half, we have put disabled people in institutions against their will. Long-term care is just the latest iteration of that. For Jonathan, it all comes down to discrimination.   [MARCHAND] It’s a big cultural and systemic issue. People with disabilities are discriminated against every day, at all levels. And it goes even as far as to the idea that our lives are not worth treating and it’s better to be dead than to be disabled.   [ARSHY] Even as the pandemic has killed thousands of people in long-term care, he doesn’t expect things to get better.    [MARCHAND] So, there’s no political will that I see to really change things. And that’s what makes me very angry. There are solutions. We can do better. But it’s off the table, even now with thousands of people dead. What has been announced to change things, turn things around? Next to nothing. And if we don’t do something collectedly, they’re going to get away with it.   [ARSHY] The debate over the future of long-term care is just beginning. But maybe it shouldn’t have any future at all.    END CREDITS That’s your episode of Commons for the week. If you want to support us, click on the link in your show notes or go to commonspodcast.com This episode relied on work done by Sharon Riley at The Walrus, Kenneth Jackson at APTN, Dustin Galer, Madeline Burghardt, the team behind Hope is Not a Plan, and many, many others I want to give a special shout-out to Aimee Louw at The Walrus for all of her help.  If you want to get in touch with us, you can tweet at us at @COMMONSpod. You can also email me, Arshy@canadalandshow.com This episode was produced by me and Jordan Cornish, with additional production by Tiffany Lam. Our managing editor is Andréa Schmidt. And our music is by Nathan Burley.  If you like what we do, please help us make this show. Click on the link in your show notes or go to commonspodcast.com   I think you should be getting our newsletterGet a weekly note about our top stories.This is a good thing that we do. You'll like this.johnsmith@example.comSign UpForm is being submitted, please wait a bit.Please fill out all required fields.
February 21, 2017
69
“I’m Ashamed Of Myself For Being Afraid”
Support us at commonspodcast.com Jonathan Marchand is one of the thousands of young disabled people living in long-term care. But Marchand doesn’t want to fix the system. He doesn’t think it can be reformed. Marchand is an abolitionist. For a century and a half, Canada has hidden away disabled people in institutions where they were neglected and abused. Is long-term care just the latest incarnation of this dark history?   COMMONS: Pandemic is currently focusing on how COVID-19 is affecting long-term care in Canada. Featured in this episode: Jonathan Marchand, Sharon J. Riley (The Walrus), Kenneth Jackson (APTN News), Madeline Burghardt, Dustin Galer To learn more: “When Is a Senior No Longer Capable of Making Their Own Decisions?” by Sharon J. Riley in The Walrus “‘Sitting duck’: Disabled woman, 27, lives in Toronto seniors home with COVID-19 outbreak” by Kenneth Jackson in APTN News Working Towards Equity: Disability Rights Activism and Employment in Late Twentieth-Century by Dustin Galer Broken: Institutions, Families, and the Construction of Intellectual Disability by Madeline Burghardt  Hope Is Not a Plan   This episode is sponsored by Freshbooks Additional music from Audio Network   TRANSCRIPT:    EPISODE 10 – “BURN IT DOWN”   COLD OPEN [ARSHY] Until 2010, Jonathan Marchand had a pretty normal life. He has muscular dystrophy, but that hadn’t been too much of an impediment for him.     [JONATHAN MARCHAND] I always had a disability. It’s a degenerative disability, so I walked until the age of 15. After that, I started to use a wheelchair and I didn’t need much help in my daily living.   [ARSHY] Jonathan’s a senior network engineer. He’s worked for different internet service providers in Quebec and in Australia. He has a partner he’s been with now for 18 years.   [MARCHAND] I was working. I had an active normal life, I had lots of projects for the future.   [ARSHY] And that’s how Jonathan expected things to go. But he didn’t really understand what his condition could do to him.   [MARCHAND] I was ill-advised by my doctors as well. I didn’t know what was in store for me. No one neither ever told me. So I was pretty ignorant about what could happen.   [ARSHY] And in 2010, it happened. He wasn’t feeling well, so he went to see a doctor. They discovered he had a bad case of pneumonia. Jonathan got sent to the ICU.   [MARCHAND] In the ICU there’s two weeks I don’t remember what happened.   [ARSHY] All he remembers are the terrifying hallucinations he experienced.   [MARCHAND] The only recollections of those two weeks are hallucinations, where people are torturing me, basically setting on fires, stabbing me, and, you know, all kinds of horrific experiences like that.   [ARSHY] When he finally came to, the doctors spoke to him.   [MARCHAND] And what they told me is that I would never come out of the– of the hospital because I was dependent now on a ventilator to breathe and there was no option to go back home.   [ARSHY] It was devastating news. And according to Jonathan, his doctors said that the best thing for him would be to refuse further treatment, and that would mean certain death.   [MARCHAND] And what they were pressuring me, pressuring me to accept these euthanasia, three different doctors had that talk with me and tried to pressure me into accepting that. And I spent a few weeks just looking at the ceiling, trying to work out what I was going to do, if I was going to indeed accept to, to be euthanized. Eventually, I refused because I wasn’t ready to die.    [ARSHY] Jonathan wanted to live. He had adapted to major life changes before. He could make his way through this, too. And for two years he tried to get out of the hospital and back to his own home. But the government insisted that his care needs were too high. They weren’t willing to pay for it. So Jonathan had to take the only option that was left on the table. At the age of 35, Jonathan Marchand moved into a long-term care home. I’m Arshy Mann and from Canadaland, this is Commons.   PART ONE [ARSHY] From the minute he moved into his long-term care home outside of Quebec City, Jonathan Marchand knew he didn’t belong there.   [MARCHAND] The first time I entered here, I was shocked. Really shocked. I got really depressed when I entered. And I stayed in my room for about three years and a half. I never went out of my room. I just stayed inside.    [ARSHY] Jonathan was promised that the CHSLD would be a place where he would have more autonomy and personal space. But he says it was just another hospital.  Many people would be surprised to find out that younger people like Jonathan Marchand end up in long-term care homes. We think of them as seniors homes, places where elderly people go at the end of their lives. But that’s the wrong way to look at it. These aren’t old age homes. These are places that house disabled people. They’re asylums. Now, that might seem like an odd claim because, of course, the vast majority of people who live in long-term care are quite elderly. But you don’t end up in long-term care just because you’re old. We know that 70 percent of people in long-term care have some form of dementia or other cognitive issue. The rest need help with some kind of physical ailment. Almost everyone who lives in long-term care is disabled, or perceived by the government to be disabled. And when Jonathan Marchand sees how differently the pandemic has affected people in long-term care, compared to the rest of the population, he sees it as a legacy of generations of discrimination against disabled people.   [MARCHAND] On one side you got the old and the disabled, living in long-term care facilities, dying by the thousands. And on the other side, you got the real citizens who contribute to society.   [ARSHY] And the institutionalization of disabled people has a long and dark history in this country. And it goes back all the way to the founding of the nation. The first institutions for disabled people in this country were founded shortly after confederation.   [DUSTIN GALER] These institutions, they were all part of the state-building process in the late 19th century, just as much, I think, as residential schools.   [ARSHY] That’s Dustin Galer, a historian and the author of Working Towards Equity, which covers the Canadian disability movement.    [MADELINE BURGHART] The first total institution for people with intellectual disabilities was opened in Canada, just outside Orillia, in Ontario, on the shores of Lake Simcoe in 1876. And the first name of that institution was the Orillia Asylum for Idiots. So that really demonstrates the kind of language that was used at the time. My name is Madeleine Burckhardt and I am an instructor in the School of Health Policy and Management at York University.    [ARSHY] The initial idea was to provide rehabilitation and training. And then people would then be sent back to their communities.    [BURGHART] Well, that sort of rehabilitative model shifted pretty quickly into what I call an “incarcerative model,” where people were not really receiving education or training very much. It was more just being housed.   [ARSHY] From the beginning, these places were overcrowded and underfunded. Abuse of all kinds was rampant. And people who were seen as deviant or non-conforming often ended up being housed there. Children from poor families, or women who were deemed unfit to raise a family, all ended up in these institutions.   [GALER] And particularly, they would treat adults with physical and intellectual disabilities and mental health issues with whatever the latest treatments were at the time. And of course, this often involved hard physical labor, isolation, electroshock therapy, all under the supervision of doctors.  And often, you know, it’s important to remember that disabled people were deposited here by families, often under the sincere belief they would be better off.    [ARSHY] By the turn of the century, a new perfidious idea was making its way through the Canadian medical and political establishments — eugenics.   [BURGHART] This was really being promoted as sound, good health policy. You know, that this was going to be good for the general population if we could rid the population of people who were considered feeble minded. And this was absolutely believed and absolutely promoted and institutions were a tool for that movement.   [ARSHY] The epicentre of this movement was Alberta. In 1928 the Albertan government passed the Sexual Sterilization Act. Children with disabilities in these institutions were amongst the many undesirables who were forcibly sterilized, usually without their knowledge. The law wasn’t repealed until 1972. But by the middle of the century, the tide had begun to turn against routine institutionalization.  Journalist Pierre Berton exposed the conditions inside the Orillia asylum in 1960.    [GALER] And people were just horrified by what they saw. People were just flocking around in diapers, and no, no semblance of care being had. Or, you know, overmedication, these types of things. And this actually helped start a movement to deinstitutionalize people with physical disability, intellectual developmental disabilities, and mental health issues.   [ARSHY] Mothers of disabled children pushed back against efforts to have their kids institutionalized. They argued that they should be supported at home, instead. And the arguments resonated. The institutions began to close.    [GALER] But the problem with the response to deinstitutionalization was that governments… They didn’t really commit enough resources to build out an adequate network of community services. So, a lot of the time, it was… It was almost seen as a cost-saving measure, like this movement to deinstitutionalize people kind of overlapped with the desire to reduce budgets.    [ARSHY] Many disabled Canadians ended up homeless, living in shelters, in chronic care in hospitals, and of course, in nursing homes in long-term care. But it was around this time that disabled Canadians found new avenues to advocate for themselves. Disability was becoming an identity.   [GALER] So there were different disability movements. But a big one that emerged in the 70s and 80s were consumer activists. So, these are people with disabilities, themselves, pushing back, demanding greater rights to protect them.    [ARSHY] And an important part of these movements was confronting the caregivers who once claimed to speak for disabled people. Disabled people made it clear that they are their own best advocates. By the 2000s, disability rights and liberation movements were widespread. But many disabled Canadians continue to live in institutions that don’t serve their needs, where they’re abused and neglected. The Huronia Regional Centre, first known as the Orillia Asylum for Idiots, only closed down in 2009.   PART TWO [ARSHY] So what makes long-term care different from these earlier institutions for disabled people? I think if we’re being honest, it’s not much. And a major reason why is that there are specific processes that happen when you’re institutionalized. By their very nature, they’re dehumanizing. Let’s start out with how you end up in long-term care.   [SHARON RILEY] We have seen surveys coming out of provinces like B.C. where advocates have surveyed nursing home residents and found that at least half of them say they don’t want to be there.   [ARSHY] That’s Sharon J. Riley, an investigative journalist, and a longtime friend of the show. She recently tackled this very question in a big feature she wrote and reported for The Walrus. There are some people who plan for long-term care, but that’s not the majority. For a lot of the people who are deemed to have dementia or another intellectual disability, it starts with a capacity test.   [RILEY] A capacity test is a tool that’s used to assess someone’s mental capacity. It’s important to note that mental capacity is not about how smart you are. It’s about your ability to make decisions, taking into account the implications of those decisions. When an assessor who’s measuring capacity is trying to make that determination, they can ask you all sorts of questions. They can ask you questions about your living situation. So say, “What would happen to you if you fell at home,” or ask you questions about how you pay your bills. “What would happen if you continue living at home?” “What would happen if you moved to a nursing home,” and sort of assess whether you understand the implications of each of those things. Not whether you want it or not, but whether you understand what it means. But an assessor can also look at cognitive abilities as sort of a way to feed into this determination. And that’s where things get a little bit tricky. ‘Cause there are many different cognitive tests out there. They can ask you kind of jarring and weird questions. Being asked, “Can you draw a clock face? Can you name as many words as you can think of that start with the letter ‘F’?” Can you say ifs, ands and buts three times and given a time limit on each of these things? So you might be very flustered. You might have 30 seconds to name as many words as you can think of that start with the letter F. Also, another test that can feed into a capacity assessment, though it is not measuring capacity itself, is measuring depression. So you might be asked questions like, “Do you feel pretty worthless right now, or is it wonderful to be alive?” These are, like, word for word questions on a depression scale assessment. And those answers can also feed into an assessor’s determination of whether or not you have mental capacity.   [ARSHY] These tests often last only 30 or 45 minutes. If the assessor decides that you don’t have the capacity to make your own decisions, from that one interview, the state can take over life. You can lose control of your finances, and they can force you to leave your home and go live in long-term care.   [RILEY] So the implications of the capacity tests can be enormous. Even though it can be short and the questions can seem strange, in the end, the assessor can decide to take away some pretty huge liberties that we enjoy as adults.    [ARSHY] For the majority of Canadians, there are few ways to fight the decision. Ontario is the only province that even has an appeals process. But that’s not the only way that people end up in the system. Many, like Jonathan Marchand, are forced into it because the government says that there’s nowhere else they can get the level of care that they require.   [JONATHAN MARCHAND] They could not give me enough hours of assistance the whole day. There are hard caps on the hours that you can get in Quebec. It’s around 44 hours a week and I needed 168 hours a week.   [ARSHY] Or take the case of Cayleah Lamarsh.    [KENNETH JACKSON]  He’s a nice person to speak to. She’s very helpful. Always available.   [ARSHY] That’s Kenneth Jackson, a reporter with Aboriginal People’s Television Network. He’s been reporting on Cayleah’s situation from the beginning of the pandemic. Cayleah was abandoned by her mother at a very young age. By four, she was a Crown ward. And by eight she was in a group home.     [JACKSON] So you can just imagine at that age, eight. By then, that’s almost pure hell. For the most part, right? Like, that’s a lot of damage, you know, on a young developing mind.   [ARSHY] She was abused in various homes and, by 18, she aged out of the system. And by 21, she was homeless.   [JACKSON] She was on a Toronto bus. The freak accident, and she got flung forward and smashed her neck or shoulder off one of the poles, and she’s paralyzed from the waist down. And there was nowhere for her to go. So she went into a long-term care home. And she knows that she doesn’t want to be there. She’s been trying to get out. Even the doctor that first saw her says, “You don’t belong here. We can’t care for you. There’s nothing here for you.”   [ARSHY] Cayleah doesn’t need care 24/7. She just needs some help with things like getting out of bed or bathing. But long-term care was the only option presented to her.   [JACKSON] Caylee was abandoned in a child welfare system. Now she’s abandoned in a long-term care system. The long-term care one, that’s for life. She has a life sentence in that home.   [ARSHY] And Jonathan Marchand says that, once you’re inside, you’re simply not treated like a person.   [MARCHAND] Basically, you’ll lose your citizenship when you enter a long-term care facility. You become an object that we warehouse away. An object of care and profit.   [ARSHY] You become an object of care. Something to be managed. Something that has to fit into a schedule and a routine. And when Jonathan describes what that’s like, it sounds exactly like what people with intellectual disabilities had to face in places like the Orillia Asylum for Idiots.  Here’s Madeline Burkhart again, talking about what life in that institution was like decades ago.    [BURKHART] There’s so many thousands of little decisions that we make for ourselves every day that we’re just taking away from people. So there’s that whole dehumanization, as well. Like even just deciding what clothes to wear, or when to turn the lights off, when to get up in the morning, when to go to bed at night. What you are going to eat, how long you would take to eat your meal… All those things were controlled. All aspects of your daily life was organized and imposed from above, from the administration of the institution.   [ARSHY] And here’s Jonathan Marchand talking about what life is like today in long-term care.   [MARCHAND] It’s incredibly difficult because when you enter, you lose control over your life in all aspects. You don’t have any choice over who touches your body to provide you assistance. You’ve got no choice or control. At what time are you gonna get up? When you go to bed, what time are you gonna eat? What you gonna eat? Um, what time are you gonna go to the toilet? Basically everything is managed for you.   [ARSHY] And in these institutions, both past and present, the residents or patients or inmates, are forced to conform to the needs of the staff.   [BURKHART] And you can understand it when you think about… If there were hundreds, sometimes thousands of people living together, you can’t organize that many people in a way that allows individual choice and freedom. And so the administrative needs of the institution always superseded the individual desires and needs of the residents.    [MARCHAND] Whenever there’s a conflict between your well-being, your rights and the rules, the law and the way the services are organized, it’s, it’s always the latter that wins.  In an institution, you need to keep the peace here and you need to stay in your lane, to stay quiet. They want you to be obedient. They want you to be kind at all times. You got to be a good cripple, right? You got to do what they say.   [ARSHY] If you’re not obedient, if you don’t stay quiet, you can be restrained. In Ontario in 2010, 16 per cent of long-term care residents were physically restrained on a daily basis. That number is now down to around four per cent.  Often, this is done because people are violent or a danger to themselves. But it’s still undeniably inhumane.  And then there’s the use of chemical restraints. Long-term care residents are often given anti-psychotic drugs, even if they have not been diagnosed with psychosis.   [RILEY] You can imagine that an antipsychotic drug has a lot of the same side-effects symptoms of waning mental capacity. So if you administered an antipsychotic drug, you can become very lethargic, you can become very confused. You can seem less interested in life in general. It’s… It’s a pacifier, essentially. It might make it much more difficult for you to manage your daily tasks.  So even if you went into a nursing home with mental capacity that was quite robust, if you were making a big fuss, if you’re complaining all the time and becoming a real disruption to all the other residents, it’s not out of the realm of possibility that you might be administered antipsychotic drugs just to calm you down, which could then further the case against you that your mental capacity is waning.   [ARSHY] A 2011 investigation by the BC government found that over 50 per cent of people in long-term care were on some kind of anti-psychotic medication. Many of them did not have any kind of documented diagnosis for psychosis. It’s true that historically, abusers have been attracted to the power that working in these kinds of institutions gives them. But that’s not the majority of people.   [BURGHART] We are horrified when we hear stories about staff doing terrible things in institutions, but we don’t make that easy.   [ARSHY] The systems that are set up almost demand that the residents are treated in these awful ways.    [BURGHART] It’s just harder, plain and simple, to be kind when you are looking after that many people and being asked to help 10 people to have a bath, or asked to help 20 people to eat their dinner, or whatever it may be, it takes away the opportunity for–for real care, I think. Institutions do not make it easy for people to be really kind and provide the care that we all are entitled to.    [ARSHY] If you’re in an institution, you lose control over almost everything.    [MARCHAND] And it goes even further than that. My experience is that they even want to control the way you die,   [ARSHY] At one point, when Jonathan was in the hospital, he wanted to just go home, whether or not he got the care he needed, even if it put his life in danger. But Jonathan was told that he couldn’t.   [MARCHAND] But he told me, “No, it’s dangerous. You can’t do that. We need to ensure your safety and we’ll go to court to stop you from going out.”   [ARSHY] This was coming from the same people who were pressuring him to end his own life. But they wouldn’t let him choose how.   [MARCHAND] So even in death, they want to control the way you die. So that’s… That’s messed up. You become an object to them that they have to keep track of. And an object doesn’t have any kind of rights whatsoever. You got to be this passive thing. I think it’s incredibly dehumanizing, and I don’t want to be part of that system anymore. I want to get out. I want to be able to live my own life according to my own values and be able to contribute to society like everyone else. I don’t see how anyone can live in a place like that. Frankly, I think humans are not made to live inside institutions.   PART THREE [ARSHY] In his first few years in long-term care, Jonathan Marchand considered acting on the advice so many medical professionals were giving him. Euthanasia.    [MARCHAND] Most people were pushing me toward euthanasia. You know, that conversation was coming up over and over again. So I started to get really depressed at that time. Um, and I was seeking, uh, ways, uh, to end my life. So, I was in this mindset that there was so way out, and death was my escape. But something happened. Eventually on the Internet, I met on Facebook… I met with other people with disabilities outside of, uh, Quebec. In Canada, in the United States, in Europe and in Australia, who had needs similar to mine, who were using ventilators or needed 24 hour assistance. And they had that assistance in their own home. And they were working. They had partners. They are… They had a normal life. So I was like, what the hell? Why can’t I get that in Quebec?   [ARSHY] Before long-term care, Jonathan had never been an activist. He didn’t think much about disability rights or liberation before he was trapped in this home. Once he started to connect with other people like him around the world, Jonathan realized he wasn’t the problem. His disability didn’t mean he had to live in long-term care. There are lots of people, just like him, living in their communities, having a normal life. And he saw how other people had gotten those changes made. Disabled people themselves have to demand it.    [MARCHAND] That’s the key. Because when you rely on third parties to do the work for you, oftentimes you end up with, uh, crumbs or, you know, things that, um, don’t respect your rights and don’t lead to your emancipation.   [ARSHY] He co-founded a cooperative with some friends to lobby the Quebec government to provide funding so people like him could live at home. And he argues that it’s actually cheaper to do that, than house people in long-term care.   [MARCHAND] There are no economic arguments against that proposition. Actually, you are throwing money away by continuing to invest in institutions.   [ARSHY] Throughout this season of Commons, we’ve been telling you about how underfunded and understaffed the long-term care system is. How we need higher standards of care, more resources, better training. But Jonathan thinks all of that is bullshit.    [MARCHAND] I think long-term care facilities should not exist. Um… It’s, um, something that’s been put in place to exclude and eliminate people with disabilities from society.   [ARSHY] Jonathan is in favour of abolition.   [MARCHAND] The idea that we can have good institutions is false. These places are designed to deprive the, the freedom of people with disabilities and the elderly. It’s incompatible with life.   [ARSHY] Jonathan believes that all institutions, whether it was an asylum 150 years ago, or long-term care today, are dehumanizing by their very nature, that more money isn’t going to fix this, that reform isn’t going make people’s lives better. Instead, we need to burn it all down. Let disabled people live in their own homes. Give them the money they need to hire caregivers that will come to them. Jonathan’s still fighting to get out of long-term care. He’s done dozens of interviews with the press. He’s tried to reach out to Quebec’s premier, François Legault, but all his calls have gone unanswered. And even if he does get out, he’s worried.    [MARCHAND] I’ve been inside for 10 years now and I’m starting to forget how it’s like to be living in the community like everyone else. When you enter a Long-Term Care Facility, it’s like your world shrinks from day-to-day, week-to-week, month-to-month, year-to-year, until your world becomes your–your room or the, the hallway, or the staff that surrounds you. If  I think too much about the future, when I have no future right now, I mean, it’s incredibly demoralizing. It’s, uh.. It can even be dangerous because, when you suffer a setback, then you can lose hope. And so I try to live day-by-day as much as I can. But I want to expand my world.   OUTRO For a century and a half, we have put disabled people in institutions against their will. Long-term care is just the latest iteration of that. For Jonathan, it all comes down to discrimination.   [MARCHAND] It’s a big cultural and systemic issue. People with disabilities are discriminated against every day, at all levels. And it goes even as far as to the idea that our lives are not worth treating and it’s better to be dead than to be disabled.   [ARSHY] Even as the pandemic has killed thousands of people in long-term care, he doesn’t expect things to get better.    [MARCHAND] So, there’s no political will that I see to really change things. And that’s what makes me very angry. There are solutions. We can do better. But it’s off the table, even now with thousands of people dead. What has been announced to change things, turn things around? Next to nothing. And if we don’t do something collectedly, they’re going to get away with it.   [ARSHY] The debate over the future of long-term care is just beginning. But maybe it shouldn’t have any future at all.    END CREDITS That’s your episode of Commons for the week. If you want to support us, click on the link in your show notes or go to commonspodcast.com This episode relied on work done by Sharon Riley at The Walrus, Kenneth Jackson at APTN, Dustin Galer, Madeline Burghardt, the team behind Hope is Not a Plan, and many, many others I want to give a special shout-out to Aimee Louw at The Walrus for all of her help.  If you want to get in touch with us, you can tweet at us at @COMMONSpod. You can also email me, Arshy@canadalandshow.com This episode was produced by me and Jordan Cornish, with additional production by Tiffany Lam. Our managing editor is Andréa Schmidt. And our music is by Nathan Burley.  If you like what we do, please help us make this show. Click on the link in your show notes or go to commonspodcast.com   I think you should be getting our newsletterGet a weekly note about our top stories.This is a good thing that we do. You'll like this.johnsmith@example.comSign UpForm is being submitted, please wait a bit.Please fill out all required fields.
March 7, 2017
70
You Have No Rights At The Border
Support us at commonspodcast.com Jonathan Marchand is one of the thousands of young disabled people living in long-term care. But Marchand doesn’t want to fix the system. He doesn’t think it can be reformed. Marchand is an abolitionist. For a century and a half, Canada has hidden away disabled people in institutions where they were neglected and abused. Is long-term care just the latest incarnation of this dark history?   COMMONS: Pandemic is currently focusing on how COVID-19 is affecting long-term care in Canada. Featured in this episode: Jonathan Marchand, Sharon J. Riley (The Walrus), Kenneth Jackson (APTN News), Madeline Burghardt, Dustin Galer To learn more: “When Is a Senior No Longer Capable of Making Their Own Decisions?” by Sharon J. Riley in The Walrus “‘Sitting duck’: Disabled woman, 27, lives in Toronto seniors home with COVID-19 outbreak” by Kenneth Jackson in APTN News Working Towards Equity: Disability Rights Activism and Employment in Late Twentieth-Century by Dustin Galer Broken: Institutions, Families, and the Construction of Intellectual Disability by Madeline Burghardt  Hope Is Not a Plan   This episode is sponsored by Freshbooks Additional music from Audio Network   TRANSCRIPT:    EPISODE 10 – “BURN IT DOWN”   COLD OPEN [ARSHY] Until 2010, Jonathan Marchand had a pretty normal life. He has muscular dystrophy, but that hadn’t been too much of an impediment for him.     [JONATHAN MARCHAND] I always had a disability. It’s a degenerative disability, so I walked until the age of 15. After that, I started to use a wheelchair and I didn’t need much help in my daily living.   [ARSHY] Jonathan’s a senior network engineer. He’s worked for different internet service providers in Quebec and in Australia. He has a partner he’s been with now for 18 years.   [MARCHAND] I was working. I had an active normal life, I had lots of projects for the future.   [ARSHY] And that’s how Jonathan expected things to go. But he didn’t really understand what his condition could do to him.   [MARCHAND] I was ill-advised by my doctors as well. I didn’t know what was in store for me. No one neither ever told me. So I was pretty ignorant about what could happen.   [ARSHY] And in 2010, it happened. He wasn’t feeling well, so he went to see a doctor. They discovered he had a bad case of pneumonia. Jonathan got sent to the ICU.   [MARCHAND] In the ICU there’s two weeks I don’t remember what happened.   [ARSHY] All he remembers are the terrifying hallucinations he experienced.   [MARCHAND] The only recollections of those two weeks are hallucinations, where people are torturing me, basically setting on fires, stabbing me, and, you know, all kinds of horrific experiences like that.   [ARSHY] When he finally came to, the doctors spoke to him.   [MARCHAND] And what they told me is that I would never come out of the– of the hospital because I was dependent now on a ventilator to breathe and there was no option to go back home.   [ARSHY] It was devastating news. And according to Jonathan, his doctors said that the best thing for him would be to refuse further treatment, and that would mean certain death.   [MARCHAND] And what they were pressuring me, pressuring me to accept these euthanasia, three different doctors had that talk with me and tried to pressure me into accepting that. And I spent a few weeks just looking at the ceiling, trying to work out what I was going to do, if I was going to indeed accept to, to be euthanized. Eventually, I refused because I wasn’t ready to die.    [ARSHY] Jonathan wanted to live. He had adapted to major life changes before. He could make his way through this, too. And for two years he tried to get out of the hospital and back to his own home. But the government insisted that his care needs were too high. They weren’t willing to pay for it. So Jonathan had to take the only option that was left on the table. At the age of 35, Jonathan Marchand moved into a long-term care home. I’m Arshy Mann and from Canadaland, this is Commons.   PART ONE [ARSHY] From the minute he moved into his long-term care home outside of Quebec City, Jonathan Marchand knew he didn’t belong there.   [MARCHAND] The first time I entered here, I was shocked. Really shocked. I got really depressed when I entered. And I stayed in my room for about three years and a half. I never went out of my room. I just stayed inside.    [ARSHY] Jonathan was promised that the CHSLD would be a place where he would have more autonomy and personal space. But he says it was just another hospital.  Many people would be surprised to find out that younger people like Jonathan Marchand end up in long-term care homes. We think of them as seniors homes, places where elderly people go at the end of their lives. But that’s the wrong way to look at it. These aren’t old age homes. These are places that house disabled people. They’re asylums. Now, that might seem like an odd claim because, of course, the vast majority of people who live in long-term care are quite elderly. But you don’t end up in long-term care just because you’re old. We know that 70 percent of people in long-term care have some form of dementia or other cognitive issue. The rest need help with some kind of physical ailment. Almost everyone who lives in long-term care is disabled, or perceived by the government to be disabled. And when Jonathan Marchand sees how differently the pandemic has affected people in long-term care, compared to the rest of the population, he sees it as a legacy of generations of discrimination against disabled people.   [MARCHAND] On one side you got the old and the disabled, living in long-term care facilities, dying by the thousands. And on the other side, you got the real citizens who contribute to society.   [ARSHY] And the institutionalization of disabled people has a long and dark history in this country. And it goes back all the way to the founding of the nation. The first institutions for disabled people in this country were founded shortly after confederation.   [DUSTIN GALER] These institutions, they were all part of the state-building process in the late 19th century, just as much, I think, as residential schools.   [ARSHY] That’s Dustin Galer, a historian and the author of Working Towards Equity, which covers the Canadian disability movement.    [MADELINE BURGHART] The first total institution for people with intellectual disabilities was opened in Canada, just outside Orillia, in Ontario, on the shores of Lake Simcoe in 1876. And the first name of that institution was the Orillia Asylum for Idiots. So that really demonstrates the kind of language that was used at the time. My name is Madeleine Burckhardt and I am an instructor in the School of Health Policy and Management at York University.    [ARSHY] The initial idea was to provide rehabilitation and training. And then people would then be sent back to their communities.    [BURGHART] Well, that sort of rehabilitative model shifted pretty quickly into what I call an “incarcerative model,” where people were not really receiving education or training very much. It was more just being housed.   [ARSHY] From the beginning, these places were overcrowded and underfunded. Abuse of all kinds was rampant. And people who were seen as deviant or non-conforming often ended up being housed there. Children from poor families, or women who were deemed unfit to raise a family, all ended up in these institutions.   [GALER] And particularly, they would treat adults with physical and intellectual disabilities and mental health issues with whatever the latest treatments were at the time. And of course, this often involved hard physical labor, isolation, electroshock therapy, all under the supervision of doctors.  And often, you know, it’s important to remember that disabled people were deposited here by families, often under the sincere belief they would be better off.    [ARSHY] By the turn of the century, a new perfidious idea was making its way through the Canadian medical and political establishments — eugenics.   [BURGHART] This was really being promoted as sound, good health policy. You know, that this was going to be good for the general population if we could rid the population of people who were considered feeble minded. And this was absolutely believed and absolutely promoted and institutions were a tool for that movement.   [ARSHY] The epicentre of this movement was Alberta. In 1928 the Albertan government passed the Sexual Sterilization Act. Children with disabilities in these institutions were amongst the many undesirables who were forcibly sterilized, usually without their knowledge. The law wasn’t repealed until 1972. But by the middle of the century, the tide had begun to turn against routine institutionalization.  Journalist Pierre Berton exposed the conditions inside the Orillia asylum in 1960.    [GALER] And people were just horrified by what they saw. People were just flocking around in diapers, and no, no semblance of care being had. Or, you know, overmedication, these types of things. And this actually helped start a movement to deinstitutionalize people with physical disability, intellectual developmental disabilities, and mental health issues.   [ARSHY] Mothers of disabled children pushed back against efforts to have their kids institutionalized. They argued that they should be supported at home, instead. And the arguments resonated. The institutions began to close.    [GALER] But the problem with the response to deinstitutionalization was that governments… They didn’t really commit enough resources to build out an adequate network of community services. So, a lot of the time, it was… It was almost seen as a cost-saving measure, like this movement to deinstitutionalize people kind of overlapped with the desire to reduce budgets.    [ARSHY] Many disabled Canadians ended up homeless, living in shelters, in chronic care in hospitals, and of course, in nursing homes in long-term care. But it was around this time that disabled Canadians found new avenues to advocate for themselves. Disability was becoming an identity.   [GALER] So there were different disability movements. But a big one that emerged in the 70s and 80s were consumer activists. So, these are people with disabilities, themselves, pushing back, demanding greater rights to protect them.    [ARSHY] And an important part of these movements was confronting the caregivers who once claimed to speak for disabled people. Disabled people made it clear that they are their own best advocates. By the 2000s, disability rights and liberation movements were widespread. But many disabled Canadians continue to live in institutions that don’t serve their needs, where they’re abused and neglected. The Huronia Regional Centre, first known as the Orillia Asylum for Idiots, only closed down in 2009.   PART TWO [ARSHY] So what makes long-term care different from these earlier institutions for disabled people? I think if we’re being honest, it’s not much. And a major reason why is that there are specific processes that happen when you’re institutionalized. By their very nature, they’re dehumanizing. Let’s start out with how you end up in long-term care.   [SHARON RILEY] We have seen surveys coming out of provinces like B.C. where advocates have surveyed nursing home residents and found that at least half of them say they don’t want to be there.   [ARSHY] That’s Sharon J. Riley, an investigative journalist, and a longtime friend of the show. She recently tackled this very question in a big feature she wrote and reported for The Walrus. There are some people who plan for long-term care, but that’s not the majority. For a lot of the people who are deemed to have dementia or another intellectual disability, it starts with a capacity test.   [RILEY] A capacity test is a tool that’s used to assess someone’s mental capacity. It’s important to note that mental capacity is not about how smart you are. It’s about your ability to make decisions, taking into account the implications of those decisions. When an assessor who’s measuring capacity is trying to make that determination, they can ask you all sorts of questions. They can ask you questions about your living situation. So say, “What would happen to you if you fell at home,” or ask you questions about how you pay your bills. “What would happen if you continue living at home?” “What would happen if you moved to a nursing home,” and sort of assess whether you understand the implications of each of those things. Not whether you want it or not, but whether you understand what it means. But an assessor can also look at cognitive abilities as sort of a way to feed into this determination. And that’s where things get a little bit tricky. ‘Cause there are many different cognitive tests out there. They can ask you kind of jarring and weird questions. Being asked, “Can you draw a clock face? Can you name as many words as you can think of that start with the letter ‘F’?” Can you say ifs, ands and buts three times and given a time limit on each of these things? So you might be very flustered. You might have 30 seconds to name as many words as you can think of that start with the letter F. Also, another test that can feed into a capacity assessment, though it is not measuring capacity itself, is measuring depression. So you might be asked questions like, “Do you feel pretty worthless right now, or is it wonderful to be alive?” These are, like, word for word questions on a depression scale assessment. And those answers can also feed into an assessor’s determination of whether or not you have mental capacity.   [ARSHY] These tests often last only 30 or 45 minutes. If the assessor decides that you don’t have the capacity to make your own decisions, from that one interview, the state can take over life. You can lose control of your finances, and they can force you to leave your home and go live in long-term care.   [RILEY] So the implications of the capacity tests can be enormous. Even though it can be short and the questions can seem strange, in the end, the assessor can decide to take away some pretty huge liberties that we enjoy as adults.    [ARSHY] For the majority of Canadians, there are few ways to fight the decision. Ontario is the only province that even has an appeals process. But that’s not the only way that people end up in the system. Many, like Jonathan Marchand, are forced into it because the government says that there’s nowhere else they can get the level of care that they require.   [JONATHAN MARCHAND] They could not give me enough hours of assistance the whole day. There are hard caps on the hours that you can get in Quebec. It’s around 44 hours a week and I needed 168 hours a week.   [ARSHY] Or take the case of Cayleah Lamarsh.    [KENNETH JACKSON]  He’s a nice person to speak to. She’s very helpful. Always available.   [ARSHY] That’s Kenneth Jackson, a reporter with Aboriginal People’s Television Network. He’s been reporting on Cayleah’s situation from the beginning of the pandemic. Cayleah was abandoned by her mother at a very young age. By four, she was a Crown ward. And by eight she was in a group home.     [JACKSON] So you can just imagine at that age, eight. By then, that’s almost pure hell. For the most part, right? Like, that’s a lot of damage, you know, on a young developing mind.   [ARSHY] She was abused in various homes and, by 18, she aged out of the system. And by 21, she was homeless.   [JACKSON] She was on a Toronto bus. The freak accident, and she got flung forward and smashed her neck or shoulder off one of the poles, and she’s paralyzed from the waist down. And there was nowhere for her to go. So she went into a long-term care home. And she knows that she doesn’t want to be there. She’s been trying to get out. Even the doctor that first saw her says, “You don’t belong here. We can’t care for you. There’s nothing here for you.”   [ARSHY] Cayleah doesn’t need care 24/7. She just needs some help with things like getting out of bed or bathing. But long-term care was the only option presented to her.   [JACKSON] Caylee was abandoned in a child welfare system. Now she’s abandoned in a long-term care system. The long-term care one, that’s for life. She has a life sentence in that home.   [ARSHY] And Jonathan Marchand says that, once you’re inside, you’re simply not treated like a person.   [MARCHAND] Basically, you’ll lose your citizenship when you enter a long-term care facility. You become an object that we warehouse away. An object of care and profit.   [ARSHY] You become an object of care. Something to be managed. Something that has to fit into a schedule and a routine. And when Jonathan describes what that’s like, it sounds exactly like what people with intellectual disabilities had to face in places like the Orillia Asylum for Idiots.  Here’s Madeline Burkhart again, talking about what life in that institution was like decades ago.    [BURKHART] There’s so many thousands of little decisions that we make for ourselves every day that we’re just taking away from people. So there’s that whole dehumanization, as well. Like even just deciding what clothes to wear, or when to turn the lights off, when to get up in the morning, when to go to bed at night. What you are going to eat, how long you would take to eat your meal… All those things were controlled. All aspects of your daily life was organized and imposed from above, from the administration of the institution.   [ARSHY] And here’s Jonathan Marchand talking about what life is like today in long-term care.   [MARCHAND] It’s incredibly difficult because when you enter, you lose control over your life in all aspects. You don’t have any choice over who touches your body to provide you assistance. You’ve got no choice or control. At what time are you gonna get up? When you go to bed, what time are you gonna eat? What you gonna eat? Um, what time are you gonna go to the toilet? Basically everything is managed for you.   [ARSHY] And in these institutions, both past and present, the residents or patients or inmates, are forced to conform to the needs of the staff.   [BURKHART] And you can understand it when you think about… If there were hundreds, sometimes thousands of people living together, you can’t organize that many people in a way that allows individual choice and freedom. And so the administrative needs of the institution always superseded the individual desires and needs of the residents.    [MARCHAND] Whenever there’s a conflict between your well-being, your rights and the rules, the law and the way the services are organized, it’s, it’s always the latter that wins.  In an institution, you need to keep the peace here and you need to stay in your lane, to stay quiet. They want you to be obedient. They want you to be kind at all times. You got to be a good cripple, right? You got to do what they say.   [ARSHY] If you’re not obedient, if you don’t stay quiet, you can be restrained. In Ontario in 2010, 16 per cent of long-term care residents were physically restrained on a daily basis. That number is now down to around four per cent.  Often, this is done because people are violent or a danger to themselves. But it’s still undeniably inhumane.  And then there’s the use of chemical restraints. Long-term care residents are often given anti-psychotic drugs, even if they have not been diagnosed with psychosis.   [RILEY] You can imagine that an antipsychotic drug has a lot of the same side-effects symptoms of waning mental capacity. So if you administered an antipsychotic drug, you can become very lethargic, you can become very confused. You can seem less interested in life in general. It’s… It’s a pacifier, essentially. It might make it much more difficult for you to manage your daily tasks.  So even if you went into a nursing home with mental capacity that was quite robust, if you were making a big fuss, if you’re complaining all the time and becoming a real disruption to all the other residents, it’s not out of the realm of possibility that you might be administered antipsychotic drugs just to calm you down, which could then further the case against you that your mental capacity is waning.   [ARSHY] A 2011 investigation by the BC government found that over 50 per cent of people in long-term care were on some kind of anti-psychotic medication. Many of them did not have any kind of documented diagnosis for psychosis. It’s true that historically, abusers have been attracted to the power that working in these kinds of institutions gives them. But that’s not the majority of people.   [BURGHART] We are horrified when we hear stories about staff doing terrible things in institutions, but we don’t make that easy.   [ARSHY] The systems that are set up almost demand that the residents are treated in these awful ways.    [BURGHART] It’s just harder, plain and simple, to be kind when you are looking after that many people and being asked to help 10 people to have a bath, or asked to help 20 people to eat their dinner, or whatever it may be, it takes away the opportunity for–for real care, I think. Institutions do not make it easy for people to be really kind and provide the care that we all are entitled to.    [ARSHY] If you’re in an institution, you lose control over almost everything.    [MARCHAND] And it goes even further than that. My experience is that they even want to control the way you die,   [ARSHY] At one point, when Jonathan was in the hospital, he wanted to just go home, whether or not he got the care he needed, even if it put his life in danger. But Jonathan was told that he couldn’t.   [MARCHAND] But he told me, “No, it’s dangerous. You can’t do that. We need to ensure your safety and we’ll go to court to stop you from going out.”   [ARSHY] This was coming from the same people who were pressuring him to end his own life. But they wouldn’t let him choose how.   [MARCHAND] So even in death, they want to control the way you die. So that’s… That’s messed up. You become an object to them that they have to keep track of. And an object doesn’t have any kind of rights whatsoever. You got to be this passive thing. I think it’s incredibly dehumanizing, and I don’t want to be part of that system anymore. I want to get out. I want to be able to live my own life according to my own values and be able to contribute to society like everyone else. I don’t see how anyone can live in a place like that. Frankly, I think humans are not made to live inside institutions.   PART THREE [ARSHY] In his first few years in long-term care, Jonathan Marchand considered acting on the advice so many medical professionals were giving him. Euthanasia.    [MARCHAND] Most people were pushing me toward euthanasia. You know, that conversation was coming up over and over again. So I started to get really depressed at that time. Um, and I was seeking, uh, ways, uh, to end my life. So, I was in this mindset that there was so way out, and death was my escape. But something happened. Eventually on the Internet, I met on Facebook… I met with other people with disabilities outside of, uh, Quebec. In Canada, in the United States, in Europe and in Australia, who had needs similar to mine, who were using ventilators or needed 24 hour assistance. And they had that assistance in their own home. And they were working. They had partners. They are… They had a normal life. So I was like, what the hell? Why can’t I get that in Quebec?   [ARSHY] Before long-term care, Jonathan had never been an activist. He didn’t think much about disability rights or liberation before he was trapped in this home. Once he started to connect with other people like him around the world, Jonathan realized he wasn’t the problem. His disability didn’t mean he had to live in long-term care. There are lots of people, just like him, living in their communities, having a normal life. And he saw how other people had gotten those changes made. Disabled people themselves have to demand it.    [MARCHAND] That’s the key. Because when you rely on third parties to do the work for you, oftentimes you end up with, uh, crumbs or, you know, things that, um, don’t respect your rights and don’t lead to your emancipation.   [ARSHY] He co-founded a cooperative with some friends to lobby the Quebec government to provide funding so people like him could live at home. And he argues that it’s actually cheaper to do that, than house people in long-term care.   [MARCHAND] There are no economic arguments against that proposition. Actually, you are throwing money away by continuing to invest in institutions.   [ARSHY] Throughout this season of Commons, we’ve been telling you about how underfunded and understaffed the long-term care system is. How we need higher standards of care, more resources, better training. But Jonathan thinks all of that is bullshit.    [MARCHAND] I think long-term care facilities should not exist. Um… It’s, um, something that’s been put in place to exclude and eliminate people with disabilities from society.   [ARSHY] Jonathan is in favour of abolition.   [MARCHAND] The idea that we can have good institutions is false. These places are designed to deprive the, the freedom of people with disabilities and the elderly. It’s incompatible with life.   [ARSHY] Jonathan believes that all institutions, whether it was an asylum 150 years ago, or long-term care today, are dehumanizing by their very nature, that more money isn’t going to fix this, that reform isn’t going make people’s lives better. Instead, we need to burn it all down. Let disabled people live in their own homes. Give them the money they need to hire caregivers that will come to them. Jonathan’s still fighting to get out of long-term care. He’s done dozens of interviews with the press. He’s tried to reach out to Quebec’s premier, François Legault, but all his calls have gone unanswered. And even if he does get out, he’s worried.    [MARCHAND] I’ve been inside for 10 years now and I’m starting to forget how it’s like to be living in the community like everyone else. When you enter a Long-Term Care Facility, it’s like your world shrinks from day-to-day, week-to-week, month-to-month, year-to-year, until your world becomes your–your room or the, the hallway, or the staff that surrounds you. If  I think too much about the future, when I have no future right now, I mean, it’s incredibly demoralizing. It’s, uh.. It can even be dangerous because, when you suffer a setback, then you can lose hope. And so I try to live day-by-day as much as I can. But I want to expand my world.   OUTRO For a century and a half, we have put disabled people in institutions against their will. Long-term care is just the latest iteration of that. For Jonathan, it all comes down to discrimination.   [MARCHAND] It’s a big cultural and systemic issue. People with disabilities are discriminated against every day, at all levels. And it goes even as far as to the idea that our lives are not worth treating and it’s better to be dead than to be disabled.   [ARSHY] Even as the pandemic has killed thousands of people in long-term care, he doesn’t expect things to get better.    [MARCHAND] So, there’s no political will that I see to really change things. And that’s what makes me very angry. There are solutions. We can do better. But it’s off the table, even now with thousands of people dead. What has been announced to change things, turn things around? Next to nothing. And if we don’t do something collectedly, they’re going to get away with it.   [ARSHY] The debate over the future of long-term care is just beginning. But maybe it shouldn’t have any future at all.    END CREDITS That’s your episode of Commons for the week. If you want to support us, click on the link in your show notes or go to commonspodcast.com This episode relied on work done by Sharon Riley at The Walrus, Kenneth Jackson at APTN, Dustin Galer, Madeline Burghardt, the team behind Hope is Not a Plan, and many, many others I want to give a special shout-out to Aimee Louw at The Walrus for all of her help.  If you want to get in touch with us, you can tweet at us at @COMMONSpod. You can also email me, Arshy@canadalandshow.com This episode was produced by me and Jordan Cornish, with additional production by Tiffany Lam. Our managing editor is Andréa Schmidt. And our music is by Nathan Burley.  If you like what we do, please help us make this show. Click on the link in your show notes or go to commonspodcast.com   I think you should be getting our newsletterGet a weekly note about our top stories.This is a good thing that we do. 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March 21, 2017
71
Being Icky Is The Job
The Liberals, according to Conservative MP Scott Reid, are trying to "ram through whatever the f**** they want." In other, vaguely sexually-themed Conservative news, Brad Trost isn't down with the "the whole gay thing," while k.d. lang asks if Jason Kenney might be secretly fond of it. Kellie Leitch and Senator Lynn Beyak? Just crapping on Muslims and Indigenous peoples again, respectively. Nothing sexy there.
April 4, 2017
72
Commons Gets High
Support us at commonspodcast.com Jonathan Marchand is one of the thousands of young disabled people living in long-term care. But Marchand doesn’t want to fix the system. He doesn’t think it can be reformed. Marchand is an abolitionist. For a century and a half, Canada has hidden away disabled people in institutions where they were neglected and abused. Is long-term care just the latest incarnation of this dark history?   COMMONS: Pandemic is currently focusing on how COVID-19 is affecting long-term care in Canada. Featured in this episode: Jonathan Marchand, Sharon J. Riley (The Walrus), Kenneth Jackson (APTN News), Madeline Burghardt, Dustin Galer To learn more: “When Is a Senior No Longer Capable of Making Their Own Decisions?” by Sharon J. Riley in The Walrus “‘Sitting duck’: Disabled woman, 27, lives in Toronto seniors home with COVID-19 outbreak” by Kenneth Jackson in APTN News Working Towards Equity: Disability Rights Activism and Employment in Late Twentieth-Century by Dustin Galer Broken: Institutions, Families, and the Construction of Intellectual Disability by Madeline Burghardt  Hope Is Not a Plan   This episode is sponsored by Freshbooks Additional music from Audio Network   TRANSCRIPT:    EPISODE 10 – “BURN IT DOWN”   COLD OPEN [ARSHY] Until 2010, Jonathan Marchand had a pretty normal life. He has muscular dystrophy, but that hadn’t been too much of an impediment for him.     [JONATHAN MARCHAND] I always had a disability. It’s a degenerative disability, so I walked until the age of 15. After that, I started to use a wheelchair and I didn’t need much help in my daily living.   [ARSHY] Jonathan’s a senior network engineer. He’s worked for different internet service providers in Quebec and in Australia. He has a partner he’s been with now for 18 years.   [MARCHAND] I was working. I had an active normal life, I had lots of projects for the future.   [ARSHY] And that’s how Jonathan expected things to go. But he didn’t really understand what his condition could do to him.   [MARCHAND] I was ill-advised by my doctors as well. I didn’t know what was in store for me. No one neither ever told me. So I was pretty ignorant about what could happen.   [ARSHY] And in 2010, it happened. He wasn’t feeling well, so he went to see a doctor. They discovered he had a bad case of pneumonia. Jonathan got sent to the ICU.   [MARCHAND] In the ICU there’s two weeks I don’t remember what happened.   [ARSHY] All he remembers are the terrifying hallucinations he experienced.   [MARCHAND] The only recollections of those two weeks are hallucinations, where people are torturing me, basically setting on fires, stabbing me, and, you know, all kinds of horrific experiences like that.   [ARSHY] When he finally came to, the doctors spoke to him.   [MARCHAND] And what they told me is that I would never come out of the– of the hospital because I was dependent now on a ventilator to breathe and there was no option to go back home.   [ARSHY] It was devastating news. And according to Jonathan, his doctors said that the best thing for him would be to refuse further treatment, and that would mean certain death.   [MARCHAND] And what they were pressuring me, pressuring me to accept these euthanasia, three different doctors had that talk with me and tried to pressure me into accepting that. And I spent a few weeks just looking at the ceiling, trying to work out what I was going to do, if I was going to indeed accept to, to be euthanized. Eventually, I refused because I wasn’t ready to die.    [ARSHY] Jonathan wanted to live. He had adapted to major life changes before. He could make his way through this, too. And for two years he tried to get out of the hospital and back to his own home. But the government insisted that his care needs were too high. They weren’t willing to pay for it. So Jonathan had to take the only option that was left on the table. At the age of 35, Jonathan Marchand moved into a long-term care home. I’m Arshy Mann and from Canadaland, this is Commons.   PART ONE [ARSHY] From the minute he moved into his long-term care home outside of Quebec City, Jonathan Marchand knew he didn’t belong there.   [MARCHAND] The first time I entered here, I was shocked. Really shocked. I got really depressed when I entered. And I stayed in my room for about three years and a half. I never went out of my room. I just stayed inside.    [ARSHY] Jonathan was promised that the CHSLD would be a place where he would have more autonomy and personal space. But he says it was just another hospital.  Many people would be surprised to find out that younger people like Jonathan Marchand end up in long-term care homes. We think of them as seniors homes, places where elderly people go at the end of their lives. But that’s the wrong way to look at it. These aren’t old age homes. These are places that house disabled people. They’re asylums. Now, that might seem like an odd claim because, of course, the vast majority of people who live in long-term care are quite elderly. But you don’t end up in long-term care just because you’re old. We know that 70 percent of people in long-term care have some form of dementia or other cognitive issue. The rest need help with some kind of physical ailment. Almost everyone who lives in long-term care is disabled, or perceived by the government to be disabled. And when Jonathan Marchand sees how differently the pandemic has affected people in long-term care, compared to the rest of the population, he sees it as a legacy of generations of discrimination against disabled people.   [MARCHAND] On one side you got the old and the disabled, living in long-term care facilities, dying by the thousands. And on the other side, you got the real citizens who contribute to society.   [ARSHY] And the institutionalization of disabled people has a long and dark history in this country. And it goes back all the way to the founding of the nation. The first institutions for disabled people in this country were founded shortly after confederation.   [DUSTIN GALER] These institutions, they were all part of the state-building process in the late 19th century, just as much, I think, as residential schools.   [ARSHY] That’s Dustin Galer, a historian and the author of Working Towards Equity, which covers the Canadian disability movement.    [MADELINE BURGHART] The first total institution for people with intellectual disabilities was opened in Canada, just outside Orillia, in Ontario, on the shores of Lake Simcoe in 1876. And the first name of that institution was the Orillia Asylum for Idiots. So that really demonstrates the kind of language that was used at the time. My name is Madeleine Burckhardt and I am an instructor in the School of Health Policy and Management at York University.    [ARSHY] The initial idea was to provide rehabilitation and training. And then people would then be sent back to their communities.    [BURGHART] Well, that sort of rehabilitative model shifted pretty quickly into what I call an “incarcerative model,” where people were not really receiving education or training very much. It was more just being housed.   [ARSHY] From the beginning, these places were overcrowded and underfunded. Abuse of all kinds was rampant. And people who were seen as deviant or non-conforming often ended up being housed there. Children from poor families, or women who were deemed unfit to raise a family, all ended up in these institutions.   [GALER] And particularly, they would treat adults with physical and intellectual disabilities and mental health issues with whatever the latest treatments were at the time. And of course, this often involved hard physical labor, isolation, electroshock therapy, all under the supervision of doctors.  And often, you know, it’s important to remember that disabled people were deposited here by families, often under the sincere belief they would be better off.    [ARSHY] By the turn of the century, a new perfidious idea was making its way through the Canadian medical and political establishments — eugenics.   [BURGHART] This was really being promoted as sound, good health policy. You know, that this was going to be good for the general population if we could rid the population of people who were considered feeble minded. And this was absolutely believed and absolutely promoted and institutions were a tool for that movement.   [ARSHY] The epicentre of this movement was Alberta. In 1928 the Albertan government passed the Sexual Sterilization Act. Children with disabilities in these institutions were amongst the many undesirables who were forcibly sterilized, usually without their knowledge. The law wasn’t repealed until 1972. But by the middle of the century, the tide had begun to turn against routine institutionalization.  Journalist Pierre Berton exposed the conditions inside the Orillia asylum in 1960.    [GALER] And people were just horrified by what they saw. People were just flocking around in diapers, and no, no semblance of care being had. Or, you know, overmedication, these types of things. And this actually helped start a movement to deinstitutionalize people with physical disability, intellectual developmental disabilities, and mental health issues.   [ARSHY] Mothers of disabled children pushed back against efforts to have their kids institutionalized. They argued that they should be supported at home, instead. And the arguments resonated. The institutions began to close.    [GALER] But the problem with the response to deinstitutionalization was that governments… They didn’t really commit enough resources to build out an adequate network of community services. So, a lot of the time, it was… It was almost seen as a cost-saving measure, like this movement to deinstitutionalize people kind of overlapped with the desire to reduce budgets.    [ARSHY] Many disabled Canadians ended up homeless, living in shelters, in chronic care in hospitals, and of course, in nursing homes in long-term care. But it was around this time that disabled Canadians found new avenues to advocate for themselves. Disability was becoming an identity.   [GALER] So there were different disability movements. But a big one that emerged in the 70s and 80s were consumer activists. So, these are people with disabilities, themselves, pushing back, demanding greater rights to protect them.    [ARSHY] And an important part of these movements was confronting the caregivers who once claimed to speak for disabled people. Disabled people made it clear that they are their own best advocates. By the 2000s, disability rights and liberation movements were widespread. But many disabled Canadians continue to live in institutions that don’t serve their needs, where they’re abused and neglected. The Huronia Regional Centre, first known as the Orillia Asylum for Idiots, only closed down in 2009.   PART TWO [ARSHY] So what makes long-term care different from these earlier institutions for disabled people? I think if we’re being honest, it’s not much. And a major reason why is that there are specific processes that happen when you’re institutionalized. By their very nature, they’re dehumanizing. Let’s start out with how you end up in long-term care.   [SHARON RILEY] We have seen surveys coming out of provinces like B.C. where advocates have surveyed nursing home residents and found that at least half of them say they don’t want to be there.   [ARSHY] That’s Sharon J. Riley, an investigative journalist, and a longtime friend of the show. She recently tackled this very question in a big feature she wrote and reported for The Walrus. There are some people who plan for long-term care, but that’s not the majority. For a lot of the people who are deemed to have dementia or another intellectual disability, it starts with a capacity test.   [RILEY] A capacity test is a tool that’s used to assess someone’s mental capacity. It’s important to note that mental capacity is not about how smart you are. It’s about your ability to make decisions, taking into account the implications of those decisions. When an assessor who’s measuring capacity is trying to make that determination, they can ask you all sorts of questions. They can ask you questions about your living situation. So say, “What would happen to you if you fell at home,” or ask you questions about how you pay your bills. “What would happen if you continue living at home?” “What would happen if you moved to a nursing home,” and sort of assess whether you understand the implications of each of those things. Not whether you want it or not, but whether you understand what it means. But an assessor can also look at cognitive abilities as sort of a way to feed into this determination. And that’s where things get a little bit tricky. ‘Cause there are many different cognitive tests out there. They can ask you kind of jarring and weird questions. Being asked, “Can you draw a clock face? Can you name as many words as you can think of that start with the letter ‘F’?” Can you say ifs, ands and buts three times and given a time limit on each of these things? So you might be very flustered. You might have 30 seconds to name as many words as you can think of that start with the letter F. Also, another test that can feed into a capacity assessment, though it is not measuring capacity itself, is measuring depression. So you might be asked questions like, “Do you feel pretty worthless right now, or is it wonderful to be alive?” These are, like, word for word questions on a depression scale assessment. And those answers can also feed into an assessor’s determination of whether or not you have mental capacity.   [ARSHY] These tests often last only 30 or 45 minutes. If the assessor decides that you don’t have the capacity to make your own decisions, from that one interview, the state can take over life. You can lose control of your finances, and they can force you to leave your home and go live in long-term care.   [RILEY] So the implications of the capacity tests can be enormous. Even though it can be short and the questions can seem strange, in the end, the assessor can decide to take away some pretty huge liberties that we enjoy as adults.    [ARSHY] For the majority of Canadians, there are few ways to fight the decision. Ontario is the only province that even has an appeals process. But that’s not the only way that people end up in the system. Many, like Jonathan Marchand, are forced into it because the government says that there’s nowhere else they can get the level of care that they require.   [JONATHAN MARCHAND] They could not give me enough hours of assistance the whole day. There are hard caps on the hours that you can get in Quebec. It’s around 44 hours a week and I needed 168 hours a week.   [ARSHY] Or take the case of Cayleah Lamarsh.    [KENNETH JACKSON]  He’s a nice person to speak to. She’s very helpful. Always available.   [ARSHY] That’s Kenneth Jackson, a reporter with Aboriginal People’s Television Network. He’s been reporting on Cayleah’s situation from the beginning of the pandemic. Cayleah was abandoned by her mother at a very young age. By four, she was a Crown ward. And by eight she was in a group home.     [JACKSON] So you can just imagine at that age, eight. By then, that’s almost pure hell. For the most part, right? Like, that’s a lot of damage, you know, on a young developing mind.   [ARSHY] She was abused in various homes and, by 18, she aged out of the system. And by 21, she was homeless.   [JACKSON] She was on a Toronto bus. The freak accident, and she got flung forward and smashed her neck or shoulder off one of the poles, and she’s paralyzed from the waist down. And there was nowhere for her to go. So she went into a long-term care home. And she knows that she doesn’t want to be there. She’s been trying to get out. Even the doctor that first saw her says, “You don’t belong here. We can’t care for you. There’s nothing here for you.”   [ARSHY] Cayleah doesn’t need care 24/7. She just needs some help with things like getting out of bed or bathing. But long-term care was the only option presented to her.   [JACKSON] Caylee was abandoned in a child welfare system. Now she’s abandoned in a long-term care system. The long-term care one, that’s for life. She has a life sentence in that home.   [ARSHY] And Jonathan Marchand says that, once you’re inside, you’re simply not treated like a person.   [MARCHAND] Basically, you’ll lose your citizenship when you enter a long-term care facility. You become an object that we warehouse away. An object of care and profit.   [ARSHY] You become an object of care. Something to be managed. Something that has to fit into a schedule and a routine. And when Jonathan describes what that’s like, it sounds exactly like what people with intellectual disabilities had to face in places like the Orillia Asylum for Idiots.  Here’s Madeline Burkhart again, talking about what life in that institution was like decades ago.    [BURKHART] There’s so many thousands of little decisions that we make for ourselves every day that we’re just taking away from people. So there’s that whole dehumanization, as well. Like even just deciding what clothes to wear, or when to turn the lights off, when to get up in the morning, when to go to bed at night. What you are going to eat, how long you would take to eat your meal… All those things were controlled. All aspects of your daily life was organized and imposed from above, from the administration of the institution.   [ARSHY] And here’s Jonathan Marchand talking about what life is like today in long-term care.   [MARCHAND] It’s incredibly difficult because when you enter, you lose control over your life in all aspects. You don’t have any choice over who touches your body to provide you assistance. You’ve got no choice or control. At what time are you gonna get up? When you go to bed, what time are you gonna eat? What you gonna eat? Um, what time are you gonna go to the toilet? Basically everything is managed for you.   [ARSHY] And in these institutions, both past and present, the residents or patients or inmates, are forced to conform to the needs of the staff.   [BURKHART] And you can understand it when you think about… If there were hundreds, sometimes thousands of people living together, you can’t organize that many people in a way that allows individual choice and freedom. And so the administrative needs of the institution always superseded the individual desires and needs of the residents.    [MARCHAND] Whenever there’s a conflict between your well-being, your rights and the rules, the law and the way the services are organized, it’s, it’s always the latter that wins.  In an institution, you need to keep the peace here and you need to stay in your lane, to stay quiet. They want you to be obedient. They want you to be kind at all times. You got to be a good cripple, right? You got to do what they say.   [ARSHY] If you’re not obedient, if you don’t stay quiet, you can be restrained. In Ontario in 2010, 16 per cent of long-term care residents were physically restrained on a daily basis. That number is now down to around four per cent.  Often, this is done because people are violent or a danger to themselves. But it’s still undeniably inhumane.  And then there’s the use of chemical restraints. Long-term care residents are often given anti-psychotic drugs, even if they have not been diagnosed with psychosis.   [RILEY] You can imagine that an antipsychotic drug has a lot of the same side-effects symptoms of waning mental capacity. So if you administered an antipsychotic drug, you can become very lethargic, you can become very confused. You can seem less interested in life in general. It’s… It’s a pacifier, essentially. It might make it much more difficult for you to manage your daily tasks.  So even if you went into a nursing home with mental capacity that was quite robust, if you were making a big fuss, if you’re complaining all the time and becoming a real disruption to all the other residents, it’s not out of the realm of possibility that you might be administered antipsychotic drugs just to calm you down, which could then further the case against you that your mental capacity is waning.   [ARSHY] A 2011 investigation by the BC government found that over 50 per cent of people in long-term care were on some kind of anti-psychotic medication. Many of them did not have any kind of documented diagnosis for psychosis. It’s true that historically, abusers have been attracted to the power that working in these kinds of institutions gives them. But that’s not the majority of people.   [BURGHART] We are horrified when we hear stories about staff doing terrible things in institutions, but we don’t make that easy.   [ARSHY] The systems that are set up almost demand that the residents are treated in these awful ways.    [BURGHART] It’s just harder, plain and simple, to be kind when you are looking after that many people and being asked to help 10 people to have a bath, or asked to help 20 people to eat their dinner, or whatever it may be, it takes away the opportunity for–for real care, I think. Institutions do not make it easy for people to be really kind and provide the care that we all are entitled to.    [ARSHY] If you’re in an institution, you lose control over almost everything.    [MARCHAND] And it goes even further than that. My experience is that they even want to control the way you die,   [ARSHY] At one point, when Jonathan was in the hospital, he wanted to just go home, whether or not he got the care he needed, even if it put his life in danger. But Jonathan was told that he couldn’t.   [MARCHAND] But he told me, “No, it’s dangerous. You can’t do that. We need to ensure your safety and we’ll go to court to stop you from going out.”   [ARSHY] This was coming from the same people who were pressuring him to end his own life. But they wouldn’t let him choose how.   [MARCHAND] So even in death, they want to control the way you die. So that’s… That’s messed up. You become an object to them that they have to keep track of. And an object doesn’t have any kind of rights whatsoever. You got to be this passive thing. I think it’s incredibly dehumanizing, and I don’t want to be part of that system anymore. I want to get out. I want to be able to live my own life according to my own values and be able to contribute to society like everyone else. I don’t see how anyone can live in a place like that. Frankly, I think humans are not made to live inside institutions.   PART THREE [ARSHY] In his first few years in long-term care, Jonathan Marchand considered acting on the advice so many medical professionals were giving him. Euthanasia.    [MARCHAND] Most people were pushing me toward euthanasia. You know, that conversation was coming up over and over again. So I started to get really depressed at that time. Um, and I was seeking, uh, ways, uh, to end my life. So, I was in this mindset that there was so way out, and death was my escape. But something happened. Eventually on the Internet, I met on Facebook… I met with other people with disabilities outside of, uh, Quebec. In Canada, in the United States, in Europe and in Australia, who had needs similar to mine, who were using ventilators or needed 24 hour assistance. And they had that assistance in their own home. And they were working. They had partners. They are… They had a normal life. So I was like, what the hell? Why can’t I get that in Quebec?   [ARSHY] Before long-term care, Jonathan had never been an activist. He didn’t think much about disability rights or liberation before he was trapped in this home. Once he started to connect with other people like him around the world, Jonathan realized he wasn’t the problem. His disability didn’t mean he had to live in long-term care. There are lots of people, just like him, living in their communities, having a normal life. And he saw how other people had gotten those changes made. Disabled people themselves have to demand it.    [MARCHAND] That’s the key. Because when you rely on third parties to do the work for you, oftentimes you end up with, uh, crumbs or, you know, things that, um, don’t respect your rights and don’t lead to your emancipation.   [ARSHY] He co-founded a cooperative with some friends to lobby the Quebec government to provide funding so people like him could live at home. And he argues that it’s actually cheaper to do that, than house people in long-term care.   [MARCHAND] There are no economic arguments against that proposition. Actually, you are throwing money away by continuing to invest in institutions.   [ARSHY] Throughout this season of Commons, we’ve been telling you about how underfunded and understaffed the long-term care system is. How we need higher standards of care, more resources, better training. But Jonathan thinks all of that is bullshit.    [MARCHAND] I think long-term care facilities should not exist. Um… It’s, um, something that’s been put in place to exclude and eliminate people with disabilities from society.   [ARSHY] Jonathan is in favour of abolition.   [MARCHAND] The idea that we can have good institutions is false. These places are designed to deprive the, the freedom of people with disabilities and the elderly. It’s incompatible with life.   [ARSHY] Jonathan believes that all institutions, whether it was an asylum 150 years ago, or long-term care today, are dehumanizing by their very nature, that more money isn’t going to fix this, that reform isn’t going make people’s lives better. Instead, we need to burn it all down. Let disabled people live in their own homes. Give them the money they need to hire caregivers that will come to them. Jonathan’s still fighting to get out of long-term care. He’s done dozens of interviews with the press. He’s tried to reach out to Quebec’s premier, François Legault, but all his calls have gone unanswered. And even if he does get out, he’s worried.    [MARCHAND] I’ve been inside for 10 years now and I’m starting to forget how it’s like to be living in the community like everyone else. When you enter a Long-Term Care Facility, it’s like your world shrinks from day-to-day, week-to-week, month-to-month, year-to-year, until your world becomes your–your room or the, the hallway, or the staff that surrounds you. If  I think too much about the future, when I have no future right now, I mean, it’s incredibly demoralizing. It’s, uh.. It can even be dangerous because, when you suffer a setback, then you can lose hope. And so I try to live day-by-day as much as I can. But I want to expand my world.   OUTRO For a century and a half, we have put disabled people in institutions against their will. Long-term care is just the latest iteration of that. For Jonathan, it all comes down to discrimination.   [MARCHAND] It’s a big cultural and systemic issue. People with disabilities are discriminated against every day, at all levels. And it goes even as far as to the idea that our lives are not worth treating and it’s better to be dead than to be disabled.   [ARSHY] Even as the pandemic has killed thousands of people in long-term care, he doesn’t expect things to get better.    [MARCHAND] So, there’s no political will that I see to really change things. And that’s what makes me very angry. There are solutions. We can do better. But it’s off the table, even now with thousands of people dead. What has been announced to change things, turn things around? Next to nothing. And if we don’t do something collectedly, they’re going to get away with it.   [ARSHY] The debate over the future of long-term care is just beginning. But maybe it shouldn’t have any future at all.    END CREDITS That’s your episode of Commons for the week. If you want to support us, click on the link in your show notes or go to commonspodcast.com This episode relied on work done by Sharon Riley at The Walrus, Kenneth Jackson at APTN, Dustin Galer, Madeline Burghardt, the team behind Hope is Not a Plan, and many, many others I want to give a special shout-out to Aimee Louw at The Walrus for all of her help.  If you want to get in touch with us, you can tweet at us at @COMMONSpod. You can also email me, Arshy@canadalandshow.com This episode was produced by me and Jordan Cornish, with additional production by Tiffany Lam. Our managing editor is Andréa Schmidt. And our music is by Nathan Burley.  If you like what we do, please help us make this show. Click on the link in your show notes or go to commonspodcast.com   I think you should be getting our newsletterGet a weekly note about our top stories.This is a good thing that we do. 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April 18, 2017
73
That’s Why We Live In A Democracy
Support us at commonspodcast.com Jonathan Marchand is one of the thousands of young disabled people living in long-term care. But Marchand doesn’t want to fix the system. He doesn’t think it can be reformed. Marchand is an abolitionist. For a century and a half, Canada has hidden away disabled people in institutions where they were neglected and abused. Is long-term care just the latest incarnation of this dark history?   COMMONS: Pandemic is currently focusing on how COVID-19 is affecting long-term care in Canada. Featured in this episode: Jonathan Marchand, Sharon J. Riley (The Walrus), Kenneth Jackson (APTN News), Madeline Burghardt, Dustin Galer To learn more: “When Is a Senior No Longer Capable of Making Their Own Decisions?” by Sharon J. Riley in The Walrus “‘Sitting duck’: Disabled woman, 27, lives in Toronto seniors home with COVID-19 outbreak” by Kenneth Jackson in APTN News Working Towards Equity: Disability Rights Activism and Employment in Late Twentieth-Century by Dustin Galer Broken: Institutions, Families, and the Construction of Intellectual Disability by Madeline Burghardt  Hope Is Not a Plan   This episode is sponsored by Freshbooks Additional music from Audio Network   TRANSCRIPT:    EPISODE 10 – “BURN IT DOWN”   COLD OPEN [ARSHY] Until 2010, Jonathan Marchand had a pretty normal life. He has muscular dystrophy, but that hadn’t been too much of an impediment for him.     [JONATHAN MARCHAND] I always had a disability. It’s a degenerative disability, so I walked until the age of 15. After that, I started to use a wheelchair and I didn’t need much help in my daily living.   [ARSHY] Jonathan’s a senior network engineer. He’s worked for different internet service providers in Quebec and in Australia. He has a partner he’s been with now for 18 years.   [MARCHAND] I was working. I had an active normal life, I had lots of projects for the future.   [ARSHY] And that’s how Jonathan expected things to go. But he didn’t really understand what his condition could do to him.   [MARCHAND] I was ill-advised by my doctors as well. I didn’t know what was in store for me. No one neither ever told me. So I was pretty ignorant about what could happen.   [ARSHY] And in 2010, it happened. He wasn’t feeling well, so he went to see a doctor. They discovered he had a bad case of pneumonia. Jonathan got sent to the ICU.   [MARCHAND] In the ICU there’s two weeks I don’t remember what happened.   [ARSHY] All he remembers are the terrifying hallucinations he experienced.   [MARCHAND] The only recollections of those two weeks are hallucinations, where people are torturing me, basically setting on fires, stabbing me, and, you know, all kinds of horrific experiences like that.   [ARSHY] When he finally came to, the doctors spoke to him.   [MARCHAND] And what they told me is that I would never come out of the– of the hospital because I was dependent now on a ventilator to breathe and there was no option to go back home.   [ARSHY] It was devastating news. And according to Jonathan, his doctors said that the best thing for him would be to refuse further treatment, and that would mean certain death.   [MARCHAND] And what they were pressuring me, pressuring me to accept these euthanasia, three different doctors had that talk with me and tried to pressure me into accepting that. And I spent a few weeks just looking at the ceiling, trying to work out what I was going to do, if I was going to indeed accept to, to be euthanized. Eventually, I refused because I wasn’t ready to die.    [ARSHY] Jonathan wanted to live. He had adapted to major life changes before. He could make his way through this, too. And for two years he tried to get out of the hospital and back to his own home. But the government insisted that his care needs were too high. They weren’t willing to pay for it. So Jonathan had to take the only option that was left on the table. At the age of 35, Jonathan Marchand moved into a long-term care home. I’m Arshy Mann and from Canadaland, this is Commons.   PART ONE [ARSHY] From the minute he moved into his long-term care home outside of Quebec City, Jonathan Marchand knew he didn’t belong there.   [MARCHAND] The first time I entered here, I was shocked. Really shocked. I got really depressed when I entered. And I stayed in my room for about three years and a half. I never went out of my room. I just stayed inside.    [ARSHY] Jonathan was promised that the CHSLD would be a place where he would have more autonomy and personal space. But he says it was just another hospital.  Many people would be surprised to find out that younger people like Jonathan Marchand end up in long-term care homes. We think of them as seniors homes, places where elderly people go at the end of their lives. But that’s the wrong way to look at it. These aren’t old age homes. These are places that house disabled people. They’re asylums. Now, that might seem like an odd claim because, of course, the vast majority of people who live in long-term care are quite elderly. But you don’t end up in long-term care just because you’re old. We know that 70 percent of people in long-term care have some form of dementia or other cognitive issue. The rest need help with some kind of physical ailment. Almost everyone who lives in long-term care is disabled, or perceived by the government to be disabled. And when Jonathan Marchand sees how differently the pandemic has affected people in long-term care, compared to the rest of the population, he sees it as a legacy of generations of discrimination against disabled people.   [MARCHAND] On one side you got the old and the disabled, living in long-term care facilities, dying by the thousands. And on the other side, you got the real citizens who contribute to society.   [ARSHY] And the institutionalization of disabled people has a long and dark history in this country. And it goes back all the way to the founding of the nation. The first institutions for disabled people in this country were founded shortly after confederation.   [DUSTIN GALER] These institutions, they were all part of the state-building process in the late 19th century, just as much, I think, as residential schools.   [ARSHY] That’s Dustin Galer, a historian and the author of Working Towards Equity, which covers the Canadian disability movement.    [MADELINE BURGHART] The first total institution for people with intellectual disabilities was opened in Canada, just outside Orillia, in Ontario, on the shores of Lake Simcoe in 1876. And the first name of that institution was the Orillia Asylum for Idiots. So that really demonstrates the kind of language that was used at the time. My name is Madeleine Burckhardt and I am an instructor in the School of Health Policy and Management at York University.    [ARSHY] The initial idea was to provide rehabilitation and training. And then people would then be sent back to their communities.    [BURGHART] Well, that sort of rehabilitative model shifted pretty quickly into what I call an “incarcerative model,” where people were not really receiving education or training very much. It was more just being housed.   [ARSHY] From the beginning, these places were overcrowded and underfunded. Abuse of all kinds was rampant. And people who were seen as deviant or non-conforming often ended up being housed there. Children from poor families, or women who were deemed unfit to raise a family, all ended up in these institutions.   [GALER] And particularly, they would treat adults with physical and intellectual disabilities and mental health issues with whatever the latest treatments were at the time. And of course, this often involved hard physical labor, isolation, electroshock therapy, all under the supervision of doctors.  And often, you know, it’s important to remember that disabled people were deposited here by families, often under the sincere belief they would be better off.    [ARSHY] By the turn of the century, a new perfidious idea was making its way through the Canadian medical and political establishments — eugenics.   [BURGHART] This was really being promoted as sound, good health policy. You know, that this was going to be good for the general population if we could rid the population of people who were considered feeble minded. And this was absolutely believed and absolutely promoted and institutions were a tool for that movement.   [ARSHY] The epicentre of this movement was Alberta. In 1928 the Albertan government passed the Sexual Sterilization Act. Children with disabilities in these institutions were amongst the many undesirables who were forcibly sterilized, usually without their knowledge. The law wasn’t repealed until 1972. But by the middle of the century, the tide had begun to turn against routine institutionalization.  Journalist Pierre Berton exposed the conditions inside the Orillia asylum in 1960.    [GALER] And people were just horrified by what they saw. People were just flocking around in diapers, and no, no semblance of care being had. Or, you know, overmedication, these types of things. And this actually helped start a movement to deinstitutionalize people with physical disability, intellectual developmental disabilities, and mental health issues.   [ARSHY] Mothers of disabled children pushed back against efforts to have their kids institutionalized. They argued that they should be supported at home, instead. And the arguments resonated. The institutions began to close.    [GALER] But the problem with the response to deinstitutionalization was that governments… They didn’t really commit enough resources to build out an adequate network of community services. So, a lot of the time, it was… It was almost seen as a cost-saving measure, like this movement to deinstitutionalize people kind of overlapped with the desire to reduce budgets.    [ARSHY] Many disabled Canadians ended up homeless, living in shelters, in chronic care in hospitals, and of course, in nursing homes in long-term care. But it was around this time that disabled Canadians found new avenues to advocate for themselves. Disability was becoming an identity.   [GALER] So there were different disability movements. But a big one that emerged in the 70s and 80s were consumer activists. So, these are people with disabilities, themselves, pushing back, demanding greater rights to protect them.    [ARSHY] And an important part of these movements was confronting the caregivers who once claimed to speak for disabled people. Disabled people made it clear that they are their own best advocates. By the 2000s, disability rights and liberation movements were widespread. But many disabled Canadians continue to live in institutions that don’t serve their needs, where they’re abused and neglected. The Huronia Regional Centre, first known as the Orillia Asylum for Idiots, only closed down in 2009.   PART TWO [ARSHY] So what makes long-term care different from these earlier institutions for disabled people? I think if we’re being honest, it’s not much. And a major reason why is that there are specific processes that happen when you’re institutionalized. By their very nature, they’re dehumanizing. Let’s start out with how you end up in long-term care.   [SHARON RILEY] We have seen surveys coming out of provinces like B.C. where advocates have surveyed nursing home residents and found that at least half of them say they don’t want to be there.   [ARSHY] That’s Sharon J. Riley, an investigative journalist, and a longtime friend of the show. She recently tackled this very question in a big feature she wrote and reported for The Walrus. There are some people who plan for long-term care, but that’s not the majority. For a lot of the people who are deemed to have dementia or another intellectual disability, it starts with a capacity test.   [RILEY] A capacity test is a tool that’s used to assess someone’s mental capacity. It’s important to note that mental capacity is not about how smart you are. It’s about your ability to make decisions, taking into account the implications of those decisions. When an assessor who’s measuring capacity is trying to make that determination, they can ask you all sorts of questions. They can ask you questions about your living situation. So say, “What would happen to you if you fell at home,” or ask you questions about how you pay your bills. “What would happen if you continue living at home?” “What would happen if you moved to a nursing home,” and sort of assess whether you understand the implications of each of those things. Not whether you want it or not, but whether you understand what it means. But an assessor can also look at cognitive abilities as sort of a way to feed into this determination. And that’s where things get a little bit tricky. ‘Cause there are many different cognitive tests out there. They can ask you kind of jarring and weird questions. Being asked, “Can you draw a clock face? Can you name as many words as you can think of that start with the letter ‘F’?” Can you say ifs, ands and buts three times and given a time limit on each of these things? So you might be very flustered. You might have 30 seconds to name as many words as you can think of that start with the letter F. Also, another test that can feed into a capacity assessment, though it is not measuring capacity itself, is measuring depression. So you might be asked questions like, “Do you feel pretty worthless right now, or is it wonderful to be alive?” These are, like, word for word questions on a depression scale assessment. And those answers can also feed into an assessor’s determination of whether or not you have mental capacity.   [ARSHY] These tests often last only 30 or 45 minutes. If the assessor decides that you don’t have the capacity to make your own decisions, from that one interview, the state can take over life. You can lose control of your finances, and they can force you to leave your home and go live in long-term care.   [RILEY] So the implications of the capacity tests can be enormous. Even though it can be short and the questions can seem strange, in the end, the assessor can decide to take away some pretty huge liberties that we enjoy as adults.    [ARSHY] For the majority of Canadians, there are few ways to fight the decision. Ontario is the only province that even has an appeals process. But that’s not the only way that people end up in the system. Many, like Jonathan Marchand, are forced into it because the government says that there’s nowhere else they can get the level of care that they require.   [JONATHAN MARCHAND] They could not give me enough hours of assistance the whole day. There are hard caps on the hours that you can get in Quebec. It’s around 44 hours a week and I needed 168 hours a week.   [ARSHY] Or take the case of Cayleah Lamarsh.    [KENNETH JACKSON]  He’s a nice person to speak to. She’s very helpful. Always available.   [ARSHY] That’s Kenneth Jackson, a reporter with Aboriginal People’s Television Network. He’s been reporting on Cayleah’s situation from the beginning of the pandemic. Cayleah was abandoned by her mother at a very young age. By four, she was a Crown ward. And by eight she was in a group home.     [JACKSON] So you can just imagine at that age, eight. By then, that’s almost pure hell. For the most part, right? Like, that’s a lot of damage, you know, on a young developing mind.   [ARSHY] She was abused in various homes and, by 18, she aged out of the system. And by 21, she was homeless.   [JACKSON] She was on a Toronto bus. The freak accident, and she got flung forward and smashed her neck or shoulder off one of the poles, and she’s paralyzed from the waist down. And there was nowhere for her to go. So she went into a long-term care home. And she knows that she doesn’t want to be there. She’s been trying to get out. Even the doctor that first saw her says, “You don’t belong here. We can’t care for you. There’s nothing here for you.”   [ARSHY] Cayleah doesn’t need care 24/7. She just needs some help with things like getting out of bed or bathing. But long-term care was the only option presented to her.   [JACKSON] Caylee was abandoned in a child welfare system. Now she’s abandoned in a long-term care system. The long-term care one, that’s for life. She has a life sentence in that home.   [ARSHY] And Jonathan Marchand says that, once you’re inside, you’re simply not treated like a person.   [MARCHAND] Basically, you’ll lose your citizenship when you enter a long-term care facility. You become an object that we warehouse away. An object of care and profit.   [ARSHY] You become an object of care. Something to be managed. Something that has to fit into a schedule and a routine. And when Jonathan describes what that’s like, it sounds exactly like what people with intellectual disabilities had to face in places like the Orillia Asylum for Idiots.  Here’s Madeline Burkhart again, talking about what life in that institution was like decades ago.    [BURKHART] There’s so many thousands of little decisions that we make for ourselves every day that we’re just taking away from people. So there’s that whole dehumanization, as well. Like even just deciding what clothes to wear, or when to turn the lights off, when to get up in the morning, when to go to bed at night. What you are going to eat, how long you would take to eat your meal… All those things were controlled. All aspects of your daily life was organized and imposed from above, from the administration of the institution.   [ARSHY] And here’s Jonathan Marchand talking about what life is like today in long-term care.   [MARCHAND] It’s incredibly difficult because when you enter, you lose control over your life in all aspects. You don’t have any choice over who touches your body to provide you assistance. You’ve got no choice or control. At what time are you gonna get up? When you go to bed, what time are you gonna eat? What you gonna eat? Um, what time are you gonna go to the toilet? Basically everything is managed for you.   [ARSHY] And in these institutions, both past and present, the residents or patients or inmates, are forced to conform to the needs of the staff.   [BURKHART] And you can understand it when you think about… If there were hundreds, sometimes thousands of people living together, you can’t organize that many people in a way that allows individual choice and freedom. And so the administrative needs of the institution always superseded the individual desires and needs of the residents.    [MARCHAND] Whenever there’s a conflict between your well-being, your rights and the rules, the law and the way the services are organized, it’s, it’s always the latter that wins.  In an institution, you need to keep the peace here and you need to stay in your lane, to stay quiet. They want you to be obedient. They want you to be kind at all times. You got to be a good cripple, right? You got to do what they say.   [ARSHY] If you’re not obedient, if you don’t stay quiet, you can be restrained. In Ontario in 2010, 16 per cent of long-term care residents were physically restrained on a daily basis. That number is now down to around four per cent.  Often, this is done because people are violent or a danger to themselves. But it’s still undeniably inhumane.  And then there’s the use of chemical restraints. Long-term care residents are often given anti-psychotic drugs, even if they have not been diagnosed with psychosis.   [RILEY] You can imagine that an antipsychotic drug has a lot of the same side-effects symptoms of waning mental capacity. So if you administered an antipsychotic drug, you can become very lethargic, you can become very confused. You can seem less interested in life in general. It’s… It’s a pacifier, essentially. It might make it much more difficult for you to manage your daily tasks.  So even if you went into a nursing home with mental capacity that was quite robust, if you were making a big fuss, if you’re complaining all the time and becoming a real disruption to all the other residents, it’s not out of the realm of possibility that you might be administered antipsychotic drugs just to calm you down, which could then further the case against you that your mental capacity is waning.   [ARSHY] A 2011 investigation by the BC government found that over 50 per cent of people in long-term care were on some kind of anti-psychotic medication. Many of them did not have any kind of documented diagnosis for psychosis. It’s true that historically, abusers have been attracted to the power that working in these kinds of institutions gives them. But that’s not the majority of people.   [BURGHART] We are horrified when we hear stories about staff doing terrible things in institutions, but we don’t make that easy.   [ARSHY] The systems that are set up almost demand that the residents are treated in these awful ways.    [BURGHART] It’s just harder, plain and simple, to be kind when you are looking after that many people and being asked to help 10 people to have a bath, or asked to help 20 people to eat their dinner, or whatever it may be, it takes away the opportunity for–for real care, I think. Institutions do not make it easy for people to be really kind and provide the care that we all are entitled to.    [ARSHY] If you’re in an institution, you lose control over almost everything.    [MARCHAND] And it goes even further than that. My experience is that they even want to control the way you die,   [ARSHY] At one point, when Jonathan was in the hospital, he wanted to just go home, whether or not he got the care he needed, even if it put his life in danger. But Jonathan was told that he couldn’t.   [MARCHAND] But he told me, “No, it’s dangerous. You can’t do that. We need to ensure your safety and we’ll go to court to stop you from going out.”   [ARSHY] This was coming from the same people who were pressuring him to end his own life. But they wouldn’t let him choose how.   [MARCHAND] So even in death, they want to control the way you die. So that’s… That’s messed up. You become an object to them that they have to keep track of. And an object doesn’t have any kind of rights whatsoever. You got to be this passive thing. I think it’s incredibly dehumanizing, and I don’t want to be part of that system anymore. I want to get out. I want to be able to live my own life according to my own values and be able to contribute to society like everyone else. I don’t see how anyone can live in a place like that. Frankly, I think humans are not made to live inside institutions.   PART THREE [ARSHY] In his first few years in long-term care, Jonathan Marchand considered acting on the advice so many medical professionals were giving him. Euthanasia.    [MARCHAND] Most people were pushing me toward euthanasia. You know, that conversation was coming up over and over again. So I started to get really depressed at that time. Um, and I was seeking, uh, ways, uh, to end my life. So, I was in this mindset that there was so way out, and death was my escape. But something happened. Eventually on the Internet, I met on Facebook… I met with other people with disabilities outside of, uh, Quebec. In Canada, in the United States, in Europe and in Australia, who had needs similar to mine, who were using ventilators or needed 24 hour assistance. And they had that assistance in their own home. And they were working. They had partners. They are… They had a normal life. So I was like, what the hell? Why can’t I get that in Quebec?   [ARSHY] Before long-term care, Jonathan had never been an activist. He didn’t think much about disability rights or liberation before he was trapped in this home. Once he started to connect with other people like him around the world, Jonathan realized he wasn’t the problem. His disability didn’t mean he had to live in long-term care. There are lots of people, just like him, living in their communities, having a normal life. And he saw how other people had gotten those changes made. Disabled people themselves have to demand it.    [MARCHAND] That’s the key. Because when you rely on third parties to do the work for you, oftentimes you end up with, uh, crumbs or, you know, things that, um, don’t respect your rights and don’t lead to your emancipation.   [ARSHY] He co-founded a cooperative with some friends to lobby the Quebec government to provide funding so people like him could live at home. And he argues that it’s actually cheaper to do that, than house people in long-term care.   [MARCHAND] There are no economic arguments against that proposition. Actually, you are throwing money away by continuing to invest in institutions.   [ARSHY] Throughout this season of Commons, we’ve been telling you about how underfunded and understaffed the long-term care system is. How we need higher standards of care, more resources, better training. But Jonathan thinks all of that is bullshit.    [MARCHAND] I think long-term care facilities should not exist. Um… It’s, um, something that’s been put in place to exclude and eliminate people with disabilities from society.   [ARSHY] Jonathan is in favour of abolition.   [MARCHAND] The idea that we can have good institutions is false. These places are designed to deprive the, the freedom of people with disabilities and the elderly. It’s incompatible with life.   [ARSHY] Jonathan believes that all institutions, whether it was an asylum 150 years ago, or long-term care today, are dehumanizing by their very nature, that more money isn’t going to fix this, that reform isn’t going make people’s lives better. Instead, we need to burn it all down. Let disabled people live in their own homes. Give them the money they need to hire caregivers that will come to them. Jonathan’s still fighting to get out of long-term care. He’s done dozens of interviews with the press. He’s tried to reach out to Quebec’s premier, François Legault, but all his calls have gone unanswered. And even if he does get out, he’s worried.    [MARCHAND] I’ve been inside for 10 years now and I’m starting to forget how it’s like to be living in the community like everyone else. When you enter a Long-Term Care Facility, it’s like your world shrinks from day-to-day, week-to-week, month-to-month, year-to-year, until your world becomes your–your room or the, the hallway, or the staff that surrounds you. If  I think too much about the future, when I have no future right now, I mean, it’s incredibly demoralizing. It’s, uh.. It can even be dangerous because, when you suffer a setback, then you can lose hope. And so I try to live day-by-day as much as I can. But I want to expand my world.   OUTRO For a century and a half, we have put disabled people in institutions against their will. Long-term care is just the latest iteration of that. For Jonathan, it all comes down to discrimination.   [MARCHAND] It’s a big cultural and systemic issue. People with disabilities are discriminated against every day, at all levels. And it goes even as far as to the idea that our lives are not worth treating and it’s better to be dead than to be disabled.   [ARSHY] Even as the pandemic has killed thousands of people in long-term care, he doesn’t expect things to get better.    [MARCHAND] So, there’s no political will that I see to really change things. And that’s what makes me very angry. There are solutions. We can do better. But it’s off the table, even now with thousands of people dead. What has been announced to change things, turn things around? Next to nothing. And if we don’t do something collectedly, they’re going to get away with it.   [ARSHY] The debate over the future of long-term care is just beginning. But maybe it shouldn’t have any future at all.    END CREDITS That’s your episode of Commons for the week. If you want to support us, click on the link in your show notes or go to commonspodcast.com This episode relied on work done by Sharon Riley at The Walrus, Kenneth Jackson at APTN, Dustin Galer, Madeline Burghardt, the team behind Hope is Not a Plan, and many, many others I want to give a special shout-out to Aimee Louw at The Walrus for all of her help.  If you want to get in touch with us, you can tweet at us at @COMMONSpod. You can also email me, Arshy@canadalandshow.com This episode was produced by me and Jordan Cornish, with additional production by Tiffany Lam. Our managing editor is Andréa Schmidt. And our music is by Nathan Burley.  If you like what we do, please help us make this show. Click on the link in your show notes or go to commonspodcast.com   I think you should be getting our newsletterGet a weekly note about our top stories.This is a good thing that we do. 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May 2, 2017
74
Cultural Appropriation Is An Inherently Political Act
Support us at commonspodcast.com Jonathan Marchand is one of the thousands of young disabled people living in long-term care. But Marchand doesn’t want to fix the system. He doesn’t think it can be reformed. Marchand is an abolitionist. For a century and a half, Canada has hidden away disabled people in institutions where they were neglected and abused. Is long-term care just the latest incarnation of this dark history?   COMMONS: Pandemic is currently focusing on how COVID-19 is affecting long-term care in Canada. Featured in this episode: Jonathan Marchand, Sharon J. Riley (The Walrus), Kenneth Jackson (APTN News), Madeline Burghardt, Dustin Galer To learn more: “When Is a Senior No Longer Capable of Making Their Own Decisions?” by Sharon J. Riley in The Walrus “‘Sitting duck’: Disabled woman, 27, lives in Toronto seniors home with COVID-19 outbreak” by Kenneth Jackson in APTN News Working Towards Equity: Disability Rights Activism and Employment in Late Twentieth-Century by Dustin Galer Broken: Institutions, Families, and the Construction of Intellectual Disability by Madeline Burghardt  Hope Is Not a Plan   This episode is sponsored by Freshbooks Additional music from Audio Network   TRANSCRIPT:    EPISODE 10 – “BURN IT DOWN”   COLD OPEN [ARSHY] Until 2010, Jonathan Marchand had a pretty normal life. He has muscular dystrophy, but that hadn’t been too much of an impediment for him.     [JONATHAN MARCHAND] I always had a disability. It’s a degenerative disability, so I walked until the age of 15. After that, I started to use a wheelchair and I didn’t need much help in my daily living.   [ARSHY] Jonathan’s a senior network engineer. He’s worked for different internet service providers in Quebec and in Australia. He has a partner he’s been with now for 18 years.   [MARCHAND] I was working. I had an active normal life, I had lots of projects for the future.   [ARSHY] And that’s how Jonathan expected things to go. But he didn’t really understand what his condition could do to him.   [MARCHAND] I was ill-advised by my doctors as well. I didn’t know what was in store for me. No one neither ever told me. So I was pretty ignorant about what could happen.   [ARSHY] And in 2010, it happened. He wasn’t feeling well, so he went to see a doctor. They discovered he had a bad case of pneumonia. Jonathan got sent to the ICU.   [MARCHAND] In the ICU there’s two weeks I don’t remember what happened.   [ARSHY] All he remembers are the terrifying hallucinations he experienced.   [MARCHAND] The only recollections of those two weeks are hallucinations, where people are torturing me, basically setting on fires, stabbing me, and, you know, all kinds of horrific experiences like that.   [ARSHY] When he finally came to, the doctors spoke to him.   [MARCHAND] And what they told me is that I would never come out of the– of the hospital because I was dependent now on a ventilator to breathe and there was no option to go back home.   [ARSHY] It was devastating news. And according to Jonathan, his doctors said that the best thing for him would be to refuse further treatment, and that would mean certain death.   [MARCHAND] And what they were pressuring me, pressuring me to accept these euthanasia, three different doctors had that talk with me and tried to pressure me into accepting that. And I spent a few weeks just looking at the ceiling, trying to work out what I was going to do, if I was going to indeed accept to, to be euthanized. Eventually, I refused because I wasn’t ready to die.    [ARSHY] Jonathan wanted to live. He had adapted to major life changes before. He could make his way through this, too. And for two years he tried to get out of the hospital and back to his own home. But the government insisted that his care needs were too high. They weren’t willing to pay for it. So Jonathan had to take the only option that was left on the table. At the age of 35, Jonathan Marchand moved into a long-term care home. I’m Arshy Mann and from Canadaland, this is Commons.   PART ONE [ARSHY] From the minute he moved into his long-term care home outside of Quebec City, Jonathan Marchand knew he didn’t belong there.   [MARCHAND] The first time I entered here, I was shocked. Really shocked. I got really depressed when I entered. And I stayed in my room for about three years and a half. I never went out of my room. I just stayed inside.    [ARSHY] Jonathan was promised that the CHSLD would be a place where he would have more autonomy and personal space. But he says it was just another hospital.  Many people would be surprised to find out that younger people like Jonathan Marchand end up in long-term care homes. We think of them as seniors homes, places where elderly people go at the end of their lives. But that’s the wrong way to look at it. These aren’t old age homes. These are places that house disabled people. They’re asylums. Now, that might seem like an odd claim because, of course, the vast majority of people who live in long-term care are quite elderly. But you don’t end up in long-term care just because you’re old. We know that 70 percent of people in long-term care have some form of dementia or other cognitive issue. The rest need help with some kind of physical ailment. Almost everyone who lives in long-term care is disabled, or perceived by the government to be disabled. And when Jonathan Marchand sees how differently the pandemic has affected people in long-term care, compared to the rest of the population, he sees it as a legacy of generations of discrimination against disabled people.   [MARCHAND] On one side you got the old and the disabled, living in long-term care facilities, dying by the thousands. And on the other side, you got the real citizens who contribute to society.   [ARSHY] And the institutionalization of disabled people has a long and dark history in this country. And it goes back all the way to the founding of the nation. The first institutions for disabled people in this country were founded shortly after confederation.   [DUSTIN GALER] These institutions, they were all part of the state-building process in the late 19th century, just as much, I think, as residential schools.   [ARSHY] That’s Dustin Galer, a historian and the author of Working Towards Equity, which covers the Canadian disability movement.    [MADELINE BURGHART] The first total institution for people with intellectual disabilities was opened in Canada, just outside Orillia, in Ontario, on the shores of Lake Simcoe in 1876. And the first name of that institution was the Orillia Asylum for Idiots. So that really demonstrates the kind of language that was used at the time. My name is Madeleine Burckhardt and I am an instructor in the School of Health Policy and Management at York University.    [ARSHY] The initial idea was to provide rehabilitation and training. And then people would then be sent back to their communities.    [BURGHART] Well, that sort of rehabilitative model shifted pretty quickly into what I call an “incarcerative model,” where people were not really receiving education or training very much. It was more just being housed.   [ARSHY] From the beginning, these places were overcrowded and underfunded. Abuse of all kinds was rampant. And people who were seen as deviant or non-conforming often ended up being housed there. Children from poor families, or women who were deemed unfit to raise a family, all ended up in these institutions.   [GALER] And particularly, they would treat adults with physical and intellectual disabilities and mental health issues with whatever the latest treatments were at the time. And of course, this often involved hard physical labor, isolation, electroshock therapy, all under the supervision of doctors.  And often, you know, it’s important to remember that disabled people were deposited here by families, often under the sincere belief they would be better off.    [ARSHY] By the turn of the century, a new perfidious idea was making its way through the Canadian medical and political establishments — eugenics.   [BURGHART] This was really being promoted as sound, good health policy. You know, that this was going to be good for the general population if we could rid the population of people who were considered feeble minded. And this was absolutely believed and absolutely promoted and institutions were a tool for that movement.   [ARSHY] The epicentre of this movement was Alberta. In 1928 the Albertan government passed the Sexual Sterilization Act. Children with disabilities in these institutions were amongst the many undesirables who were forcibly sterilized, usually without their knowledge. The law wasn’t repealed until 1972. But by the middle of the century, the tide had begun to turn against routine institutionalization.  Journalist Pierre Berton exposed the conditions inside the Orillia asylum in 1960.    [GALER] And people were just horrified by what they saw. People were just flocking around in diapers, and no, no semblance of care being had. Or, you know, overmedication, these types of things. And this actually helped start a movement to deinstitutionalize people with physical disability, intellectual developmental disabilities, and mental health issues.   [ARSHY] Mothers of disabled children pushed back against efforts to have their kids institutionalized. They argued that they should be supported at home, instead. And the arguments resonated. The institutions began to close.    [GALER] But the problem with the response to deinstitutionalization was that governments… They didn’t really commit enough resources to build out an adequate network of community services. So, a lot of the time, it was… It was almost seen as a cost-saving measure, like this movement to deinstitutionalize people kind of overlapped with the desire to reduce budgets.    [ARSHY] Many disabled Canadians ended up homeless, living in shelters, in chronic care in hospitals, and of course, in nursing homes in long-term care. But it was around this time that disabled Canadians found new avenues to advocate for themselves. Disability was becoming an identity.   [GALER] So there were different disability movements. But a big one that emerged in the 70s and 80s were consumer activists. So, these are people with disabilities, themselves, pushing back, demanding greater rights to protect them.    [ARSHY] And an important part of these movements was confronting the caregivers who once claimed to speak for disabled people. Disabled people made it clear that they are their own best advocates. By the 2000s, disability rights and liberation movements were widespread. But many disabled Canadians continue to live in institutions that don’t serve their needs, where they’re abused and neglected. The Huronia Regional Centre, first known as the Orillia Asylum for Idiots, only closed down in 2009.   PART TWO [ARSHY] So what makes long-term care different from these earlier institutions for disabled people? I think if we’re being honest, it’s not much. And a major reason why is that there are specific processes that happen when you’re institutionalized. By their very nature, they’re dehumanizing. Let’s start out with how you end up in long-term care.   [SHARON RILEY] We have seen surveys coming out of provinces like B.C. where advocates have surveyed nursing home residents and found that at least half of them say they don’t want to be there.   [ARSHY] That’s Sharon J. Riley, an investigative journalist, and a longtime friend of the show. She recently tackled this very question in a big feature she wrote and reported for The Walrus. There are some people who plan for long-term care, but that’s not the majority. For a lot of the people who are deemed to have dementia or another intellectual disability, it starts with a capacity test.   [RILEY] A capacity test is a tool that’s used to assess someone’s mental capacity. It’s important to note that mental capacity is not about how smart you are. It’s about your ability to make decisions, taking into account the implications of those decisions. When an assessor who’s measuring capacity is trying to make that determination, they can ask you all sorts of questions. They can ask you questions about your living situation. So say, “What would happen to you if you fell at home,” or ask you questions about how you pay your bills. “What would happen if you continue living at home?” “What would happen if you moved to a nursing home,” and sort of assess whether you understand the implications of each of those things. Not whether you want it or not, but whether you understand what it means. But an assessor can also look at cognitive abilities as sort of a way to feed into this determination. And that’s where things get a little bit tricky. ‘Cause there are many different cognitive tests out there. They can ask you kind of jarring and weird questions. Being asked, “Can you draw a clock face? Can you name as many words as you can think of that start with the letter ‘F’?” Can you say ifs, ands and buts three times and given a time limit on each of these things? So you might be very flustered. You might have 30 seconds to name as many words as you can think of that start with the letter F. Also, another test that can feed into a capacity assessment, though it is not measuring capacity itself, is measuring depression. So you might be asked questions like, “Do you feel pretty worthless right now, or is it wonderful to be alive?” These are, like, word for word questions on a depression scale assessment. And those answers can also feed into an assessor’s determination of whether or not you have mental capacity.   [ARSHY] These tests often last only 30 or 45 minutes. If the assessor decides that you don’t have the capacity to make your own decisions, from that one interview, the state can take over life. You can lose control of your finances, and they can force you to leave your home and go live in long-term care.   [RILEY] So the implications of the capacity tests can be enormous. Even though it can be short and the questions can seem strange, in the end, the assessor can decide to take away some pretty huge liberties that we enjoy as adults.    [ARSHY] For the majority of Canadians, there are few ways to fight the decision. Ontario is the only province that even has an appeals process. But that’s not the only way that people end up in the system. Many, like Jonathan Marchand, are forced into it because the government says that there’s nowhere else they can get the level of care that they require.   [JONATHAN MARCHAND] They could not give me enough hours of assistance the whole day. There are hard caps on the hours that you can get in Quebec. It’s around 44 hours a week and I needed 168 hours a week.   [ARSHY] Or take the case of Cayleah Lamarsh.    [KENNETH JACKSON]  He’s a nice person to speak to. She’s very helpful. Always available.   [ARSHY] That’s Kenneth Jackson, a reporter with Aboriginal People’s Television Network. He’s been reporting on Cayleah’s situation from the beginning of the pandemic. Cayleah was abandoned by her mother at a very young age. By four, she was a Crown ward. And by eight she was in a group home.     [JACKSON] So you can just imagine at that age, eight. By then, that’s almost pure hell. For the most part, right? Like, that’s a lot of damage, you know, on a young developing mind.   [ARSHY] She was abused in various homes and, by 18, she aged out of the system. And by 21, she was homeless.   [JACKSON] She was on a Toronto bus. The freak accident, and she got flung forward and smashed her neck or shoulder off one of the poles, and she’s paralyzed from the waist down. And there was nowhere for her to go. So she went into a long-term care home. And she knows that she doesn’t want to be there. She’s been trying to get out. Even the doctor that first saw her says, “You don’t belong here. We can’t care for you. There’s nothing here for you.”   [ARSHY] Cayleah doesn’t need care 24/7. She just needs some help with things like getting out of bed or bathing. But long-term care was the only option presented to her.   [JACKSON] Caylee was abandoned in a child welfare system. Now she’s abandoned in a long-term care system. The long-term care one, that’s for life. She has a life sentence in that home.   [ARSHY] And Jonathan Marchand says that, once you’re inside, you’re simply not treated like a person.   [MARCHAND] Basically, you’ll lose your citizenship when you enter a long-term care facility. You become an object that we warehouse away. An object of care and profit.   [ARSHY] You become an object of care. Something to be managed. Something that has to fit into a schedule and a routine. And when Jonathan describes what that’s like, it sounds exactly like what people with intellectual disabilities had to face in places like the Orillia Asylum for Idiots.  Here’s Madeline Burkhart again, talking about what life in that institution was like decades ago.    [BURKHART] There’s so many thousands of little decisions that we make for ourselves every day that we’re just taking away from people. So there’s that whole dehumanization, as well. Like even just deciding what clothes to wear, or when to turn the lights off, when to get up in the morning, when to go to bed at night. What you are going to eat, how long you would take to eat your meal… All those things were controlled. All aspects of your daily life was organized and imposed from above, from the administration of the institution.   [ARSHY] And here’s Jonathan Marchand talking about what life is like today in long-term care.   [MARCHAND] It’s incredibly difficult because when you enter, you lose control over your life in all aspects. You don’t have any choice over who touches your body to provide you assistance. You’ve got no choice or control. At what time are you gonna get up? When you go to bed, what time are you gonna eat? What you gonna eat? Um, what time are you gonna go to the toilet? Basically everything is managed for you.   [ARSHY] And in these institutions, both past and present, the residents or patients or inmates, are forced to conform to the needs of the staff.   [BURKHART] And you can understand it when you think about… If there were hundreds, sometimes thousands of people living together, you can’t organize that many people in a way that allows individual choice and freedom. And so the administrative needs of the institution always superseded the individual desires and needs of the residents.    [MARCHAND] Whenever there’s a conflict between your well-being, your rights and the rules, the law and the way the services are organized, it’s, it’s always the latter that wins.  In an institution, you need to keep the peace here and you need to stay in your lane, to stay quiet. They want you to be obedient. They want you to be kind at all times. You got to be a good cripple, right? You got to do what they say.   [ARSHY] If you’re not obedient, if you don’t stay quiet, you can be restrained. In Ontario in 2010, 16 per cent of long-term care residents were physically restrained on a daily basis. That number is now down to around four per cent.  Often, this is done because people are violent or a danger to themselves. But it’s still undeniably inhumane.  And then there’s the use of chemical restraints. Long-term care residents are often given anti-psychotic drugs, even if they have not been diagnosed with psychosis.   [RILEY] You can imagine that an antipsychotic drug has a lot of the same side-effects symptoms of waning mental capacity. So if you administered an antipsychotic drug, you can become very lethargic, you can become very confused. You can seem less interested in life in general. It’s… It’s a pacifier, essentially. It might make it much more difficult for you to manage your daily tasks.  So even if you went into a nursing home with mental capacity that was quite robust, if you were making a big fuss, if you’re complaining all the time and becoming a real disruption to all the other residents, it’s not out of the realm of possibility that you might be administered antipsychotic drugs just to calm you down, which could then further the case against you that your mental capacity is waning.   [ARSHY] A 2011 investigation by the BC government found that over 50 per cent of people in long-term care were on some kind of anti-psychotic medication. Many of them did not have any kind of documented diagnosis for psychosis. It’s true that historically, abusers have been attracted to the power that working in these kinds of institutions gives them. But that’s not the majority of people.   [BURGHART] We are horrified when we hear stories about staff doing terrible things in institutions, but we don’t make that easy.   [ARSHY] The systems that are set up almost demand that the residents are treated in these awful ways.    [BURGHART] It’s just harder, plain and simple, to be kind when you are looking after that many people and being asked to help 10 people to have a bath, or asked to help 20 people to eat their dinner, or whatever it may be, it takes away the opportunity for–for real care, I think. Institutions do not make it easy for people to be really kind and provide the care that we all are entitled to.    [ARSHY] If you’re in an institution, you lose control over almost everything.    [MARCHAND] And it goes even further than that. My experience is that they even want to control the way you die,   [ARSHY] At one point, when Jonathan was in the hospital, he wanted to just go home, whether or not he got the care he needed, even if it put his life in danger. But Jonathan was told that he couldn’t.   [MARCHAND] But he told me, “No, it’s dangerous. You can’t do that. We need to ensure your safety and we’ll go to court to stop you from going out.”   [ARSHY] This was coming from the same people who were pressuring him to end his own life. But they wouldn’t let him choose how.   [MARCHAND] So even in death, they want to control the way you die. So that’s… That’s messed up. You become an object to them that they have to keep track of. And an object doesn’t have any kind of rights whatsoever. You got to be this passive thing. I think it’s incredibly dehumanizing, and I don’t want to be part of that system anymore. I want to get out. I want to be able to live my own life according to my own values and be able to contribute to society like everyone else. I don’t see how anyone can live in a place like that. Frankly, I think humans are not made to live inside institutions.   PART THREE [ARSHY] In his first few years in long-term care, Jonathan Marchand considered acting on the advice so many medical professionals were giving him. Euthanasia.    [MARCHAND] Most people were pushing me toward euthanasia. You know, that conversation was coming up over and over again. So I started to get really depressed at that time. Um, and I was seeking, uh, ways, uh, to end my life. So, I was in this mindset that there was so way out, and death was my escape. But something happened. Eventually on the Internet, I met on Facebook… I met with other people with disabilities outside of, uh, Quebec. In Canada, in the United States, in Europe and in Australia, who had needs similar to mine, who were using ventilators or needed 24 hour assistance. And they had that assistance in their own home. And they were working. They had partners. They are… They had a normal life. So I was like, what the hell? Why can’t I get that in Quebec?   [ARSHY] Before long-term care, Jonathan had never been an activist. He didn’t think much about disability rights or liberation before he was trapped in this home. Once he started to connect with other people like him around the world, Jonathan realized he wasn’t the problem. His disability didn’t mean he had to live in long-term care. There are lots of people, just like him, living in their communities, having a normal life. And he saw how other people had gotten those changes made. Disabled people themselves have to demand it.    [MARCHAND] That’s the key. Because when you rely on third parties to do the work for you, oftentimes you end up with, uh, crumbs or, you know, things that, um, don’t respect your rights and don’t lead to your emancipation.   [ARSHY] He co-founded a cooperative with some friends to lobby the Quebec government to provide funding so people like him could live at home. And he argues that it’s actually cheaper to do that, than house people in long-term care.   [MARCHAND] There are no economic arguments against that proposition. Actually, you are throwing money away by continuing to invest in institutions.   [ARSHY] Throughout this season of Commons, we’ve been telling you about how underfunded and understaffed the long-term care system is. How we need higher standards of care, more resources, better training. But Jonathan thinks all of that is bullshit.    [MARCHAND] I think long-term care facilities should not exist. Um… It’s, um, something that’s been put in place to exclude and eliminate people with disabilities from society.   [ARSHY] Jonathan is in favour of abolition.   [MARCHAND] The idea that we can have good institutions is false. These places are designed to deprive the, the freedom of people with disabilities and the elderly. It’s incompatible with life.   [ARSHY] Jonathan believes that all institutions, whether it was an asylum 150 years ago, or long-term care today, are dehumanizing by their very nature, that more money isn’t going to fix this, that reform isn’t going make people’s lives better. Instead, we need to burn it all down. Let disabled people live in their own homes. Give them the money they need to hire caregivers that will come to them. Jonathan’s still fighting to get out of long-term care. He’s done dozens of interviews with the press. He’s tried to reach out to Quebec’s premier, François Legault, but all his calls have gone unanswered. And even if he does get out, he’s worried.    [MARCHAND] I’ve been inside for 10 years now and I’m starting to forget how it’s like to be living in the community like everyone else. When you enter a Long-Term Care Facility, it’s like your world shrinks from day-to-day, week-to-week, month-to-month, year-to-year, until your world becomes your–your room or the, the hallway, or the staff that surrounds you. If  I think too much about the future, when I have no future right now, I mean, it’s incredibly demoralizing. It’s, uh.. It can even be dangerous because, when you suffer a setback, then you can lose hope. And so I try to live day-by-day as much as I can. But I want to expand my world.   OUTRO For a century and a half, we have put disabled people in institutions against their will. Long-term care is just the latest iteration of that. For Jonathan, it all comes down to discrimination.   [MARCHAND] It’s a big cultural and systemic issue. People with disabilities are discriminated against every day, at all levels. And it goes even as far as to the idea that our lives are not worth treating and it’s better to be dead than to be disabled.   [ARSHY] Even as the pandemic has killed thousands of people in long-term care, he doesn’t expect things to get better.    [MARCHAND] So, there’s no political will that I see to really change things. And that’s what makes me very angry. There are solutions. We can do better. But it’s off the table, even now with thousands of people dead. What has been announced to change things, turn things around? Next to nothing. And if we don’t do something collectedly, they’re going to get away with it.   [ARSHY] The debate over the future of long-term care is just beginning. But maybe it shouldn’t have any future at all.    END CREDITS That’s your episode of Commons for the week. If you want to support us, click on the link in your show notes or go to commonspodcast.com This episode relied on work done by Sharon Riley at The Walrus, Kenneth Jackson at APTN, Dustin Galer, Madeline Burghardt, the team behind Hope is Not a Plan, and many, many others I want to give a special shout-out to Aimee Louw at The Walrus for all of her help.  If you want to get in touch with us, you can tweet at us at @COMMONSpod. You can also email me, Arshy@canadalandshow.com This episode was produced by me and Jordan Cornish, with additional production by Tiffany Lam. Our managing editor is Andréa Schmidt. And our music is by Nathan Burley.  If you like what we do, please help us make this show. Click on the link in your show notes or go to commonspodcast.com   I think you should be getting our newsletterGet a weekly note about our top stories.This is a good thing that we do. 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May 16, 2017
75
Drink Like A Conservative
Support us at commonspodcast.com Jonathan Marchand is one of the thousands of young disabled people living in long-term care. But Marchand doesn’t want to fix the system. He doesn’t think it can be reformed. Marchand is an abolitionist. For a century and a half, Canada has hidden away disabled people in institutions where they were neglected and abused. Is long-term care just the latest incarnation of this dark history?   COMMONS: Pandemic is currently focusing on how COVID-19 is affecting long-term care in Canada. Featured in this episode: Jonathan Marchand, Sharon J. Riley (The Walrus), Kenneth Jackson (APTN News), Madeline Burghardt, Dustin Galer To learn more: “When Is a Senior No Longer Capable of Making Their Own Decisions?” by Sharon J. Riley in The Walrus “‘Sitting duck’: Disabled woman, 27, lives in Toronto seniors home with COVID-19 outbreak” by Kenneth Jackson in APTN News Working Towards Equity: Disability Rights Activism and Employment in Late Twentieth-Century by Dustin Galer Broken: Institutions, Families, and the Construction of Intellectual Disability by Madeline Burghardt  Hope Is Not a Plan   This episode is sponsored by Freshbooks Additional music from Audio Network   TRANSCRIPT:    EPISODE 10 – “BURN IT DOWN”   COLD OPEN [ARSHY] Until 2010, Jonathan Marchand had a pretty normal life. He has muscular dystrophy, but that hadn’t been too much of an impediment for him.     [JONATHAN MARCHAND] I always had a disability. It’s a degenerative disability, so I walked until the age of 15. After that, I started to use a wheelchair and I didn’t need much help in my daily living.   [ARSHY] Jonathan’s a senior network engineer. He’s worked for different internet service providers in Quebec and in Australia. He has a partner he’s been with now for 18 years.   [MARCHAND] I was working. I had an active normal life, I had lots of projects for the future.   [ARSHY] And that’s how Jonathan expected things to go. But he didn’t really understand what his condition could do to him.   [MARCHAND] I was ill-advised by my doctors as well. I didn’t know what was in store for me. No one neither ever told me. So I was pretty ignorant about what could happen.   [ARSHY] And in 2010, it happened. He wasn’t feeling well, so he went to see a doctor. They discovered he had a bad case of pneumonia. Jonathan got sent to the ICU.   [MARCHAND] In the ICU there’s two weeks I don’t remember what happened.   [ARSHY] All he remembers are the terrifying hallucinations he experienced.   [MARCHAND] The only recollections of those two weeks are hallucinations, where people are torturing me, basically setting on fires, stabbing me, and, you know, all kinds of horrific experiences like that.   [ARSHY] When he finally came to, the doctors spoke to him.   [MARCHAND] And what they told me is that I would never come out of the– of the hospital because I was dependent now on a ventilator to breathe and there was no option to go back home.   [ARSHY] It was devastating news. And according to Jonathan, his doctors said that the best thing for him would be to refuse further treatment, and that would mean certain death.   [MARCHAND] And what they were pressuring me, pressuring me to accept these euthanasia, three different doctors had that talk with me and tried to pressure me into accepting that. And I spent a few weeks just looking at the ceiling, trying to work out what I was going to do, if I was going to indeed accept to, to be euthanized. Eventually, I refused because I wasn’t ready to die.    [ARSHY] Jonathan wanted to live. He had adapted to major life changes before. He could make his way through this, too. And for two years he tried to get out of the hospital and back to his own home. But the government insisted that his care needs were too high. They weren’t willing to pay for it. So Jonathan had to take the only option that was left on the table. At the age of 35, Jonathan Marchand moved into a long-term care home. I’m Arshy Mann and from Canadaland, this is Commons.   PART ONE [ARSHY] From the minute he moved into his long-term care home outside of Quebec City, Jonathan Marchand knew he didn’t belong there.   [MARCHAND] The first time I entered here, I was shocked. Really shocked. I got really depressed when I entered. And I stayed in my room for about three years and a half. I never went out of my room. I just stayed inside.    [ARSHY] Jonathan was promised that the CHSLD would be a place where he would have more autonomy and personal space. But he says it was just another hospital.  Many people would be surprised to find out that younger people like Jonathan Marchand end up in long-term care homes. We think of them as seniors homes, places where elderly people go at the end of their lives. But that’s the wrong way to look at it. These aren’t old age homes. These are places that house disabled people. They’re asylums. Now, that might seem like an odd claim because, of course, the vast majority of people who live in long-term care are quite elderly. But you don’t end up in long-term care just because you’re old. We know that 70 percent of people in long-term care have some form of dementia or other cognitive issue. The rest need help with some kind of physical ailment. Almost everyone who lives in long-term care is disabled, or perceived by the government to be disabled. And when Jonathan Marchand sees how differently the pandemic has affected people in long-term care, compared to the rest of the population, he sees it as a legacy of generations of discrimination against disabled people.   [MARCHAND] On one side you got the old and the disabled, living in long-term care facilities, dying by the thousands. And on the other side, you got the real citizens who contribute to society.   [ARSHY] And the institutionalization of disabled people has a long and dark history in this country. And it goes back all the way to the founding of the nation. The first institutions for disabled people in this country were founded shortly after confederation.   [DUSTIN GALER] These institutions, they were all part of the state-building process in the late 19th century, just as much, I think, as residential schools.   [ARSHY] That’s Dustin Galer, a historian and the author of Working Towards Equity, which covers the Canadian disability movement.    [MADELINE BURGHART] The first total institution for people with intellectual disabilities was opened in Canada, just outside Orillia, in Ontario, on the shores of Lake Simcoe in 1876. And the first name of that institution was the Orillia Asylum for Idiots. So that really demonstrates the kind of language that was used at the time. My name is Madeleine Burckhardt and I am an instructor in the School of Health Policy and Management at York University.    [ARSHY] The initial idea was to provide rehabilitation and training. And then people would then be sent back to their communities.    [BURGHART] Well, that sort of rehabilitative model shifted pretty quickly into what I call an “incarcerative model,” where people were not really receiving education or training very much. It was more just being housed.   [ARSHY] From the beginning, these places were overcrowded and underfunded. Abuse of all kinds was rampant. And people who were seen as deviant or non-conforming often ended up being housed there. Children from poor families, or women who were deemed unfit to raise a family, all ended up in these institutions.   [GALER] And particularly, they would treat adults with physical and intellectual disabilities and mental health issues with whatever the latest treatments were at the time. And of course, this often involved hard physical labor, isolation, electroshock therapy, all under the supervision of doctors.  And often, you know, it’s important to remember that disabled people were deposited here by families, often under the sincere belief they would be better off.    [ARSHY] By the turn of the century, a new perfidious idea was making its way through the Canadian medical and political establishments — eugenics.   [BURGHART] This was really being promoted as sound, good health policy. You know, that this was going to be good for the general population if we could rid the population of people who were considered feeble minded. And this was absolutely believed and absolutely promoted and institutions were a tool for that movement.   [ARSHY] The epicentre of this movement was Alberta. In 1928 the Albertan government passed the Sexual Sterilization Act. Children with disabilities in these institutions were amongst the many undesirables who were forcibly sterilized, usually without their knowledge. The law wasn’t repealed until 1972. But by the middle of the century, the tide had begun to turn against routine institutionalization.  Journalist Pierre Berton exposed the conditions inside the Orillia asylum in 1960.    [GALER] And people were just horrified by what they saw. People were just flocking around in diapers, and no, no semblance of care being had. Or, you know, overmedication, these types of things. And this actually helped start a movement to deinstitutionalize people with physical disability, intellectual developmental disabilities, and mental health issues.   [ARSHY] Mothers of disabled children pushed back against efforts to have their kids institutionalized. They argued that they should be supported at home, instead. And the arguments resonated. The institutions began to close.    [GALER] But the problem with the response to deinstitutionalization was that governments… They didn’t really commit enough resources to build out an adequate network of community services. So, a lot of the time, it was… It was almost seen as a cost-saving measure, like this movement to deinstitutionalize people kind of overlapped with the desire to reduce budgets.    [ARSHY] Many disabled Canadians ended up homeless, living in shelters, in chronic care in hospitals, and of course, in nursing homes in long-term care. But it was around this time that disabled Canadians found new avenues to advocate for themselves. Disability was becoming an identity.   [GALER] So there were different disability movements. But a big one that emerged in the 70s and 80s were consumer activists. So, these are people with disabilities, themselves, pushing back, demanding greater rights to protect them.    [ARSHY] And an important part of these movements was confronting the caregivers who once claimed to speak for disabled people. Disabled people made it clear that they are their own best advocates. By the 2000s, disability rights and liberation movements were widespread. But many disabled Canadians continue to live in institutions that don’t serve their needs, where they’re abused and neglected. The Huronia Regional Centre, first known as the Orillia Asylum for Idiots, only closed down in 2009.   PART TWO [ARSHY] So what makes long-term care different from these earlier institutions for disabled people? I think if we’re being honest, it’s not much. And a major reason why is that there are specific processes that happen when you’re institutionalized. By their very nature, they’re dehumanizing. Let’s start out with how you end up in long-term care.   [SHARON RILEY] We have seen surveys coming out of provinces like B.C. where advocates have surveyed nursing home residents and found that at least half of them say they don’t want to be there.   [ARSHY] That’s Sharon J. Riley, an investigative journalist, and a longtime friend of the show. She recently tackled this very question in a big feature she wrote and reported for The Walrus. There are some people who plan for long-term care, but that’s not the majority. For a lot of the people who are deemed to have dementia or another intellectual disability, it starts with a capacity test.   [RILEY] A capacity test is a tool that’s used to assess someone’s mental capacity. It’s important to note that mental capacity is not about how smart you are. It’s about your ability to make decisions, taking into account the implications of those decisions. When an assessor who’s measuring capacity is trying to make that determination, they can ask you all sorts of questions. They can ask you questions about your living situation. So say, “What would happen to you if you fell at home,” or ask you questions about how you pay your bills. “What would happen if you continue living at home?” “What would happen if you moved to a nursing home,” and sort of assess whether you understand the implications of each of those things. Not whether you want it or not, but whether you understand what it means. But an assessor can also look at cognitive abilities as sort of a way to feed into this determination. And that’s where things get a little bit tricky. ‘Cause there are many different cognitive tests out there. They can ask you kind of jarring and weird questions. Being asked, “Can you draw a clock face? Can you name as many words as you can think of that start with the letter ‘F’?” Can you say ifs, ands and buts three times and given a time limit on each of these things? So you might be very flustered. You might have 30 seconds to name as many words as you can think of that start with the letter F. Also, another test that can feed into a capacity assessment, though it is not measuring capacity itself, is measuring depression. So you might be asked questions like, “Do you feel pretty worthless right now, or is it wonderful to be alive?” These are, like, word for word questions on a depression scale assessment. And those answers can also feed into an assessor’s determination of whether or not you have mental capacity.   [ARSHY] These tests often last only 30 or 45 minutes. If the assessor decides that you don’t have the capacity to make your own decisions, from that one interview, the state can take over life. You can lose control of your finances, and they can force you to leave your home and go live in long-term care.   [RILEY] So the implications of the capacity tests can be enormous. Even though it can be short and the questions can seem strange, in the end, the assessor can decide to take away some pretty huge liberties that we enjoy as adults.    [ARSHY] For the majority of Canadians, there are few ways to fight the decision. Ontario is the only province that even has an appeals process. But that’s not the only way that people end up in the system. Many, like Jonathan Marchand, are forced into it because the government says that there’s nowhere else they can get the level of care that they require.   [JONATHAN MARCHAND] They could not give me enough hours of assistance the whole day. There are hard caps on the hours that you can get in Quebec. It’s around 44 hours a week and I needed 168 hours a week.   [ARSHY] Or take the case of Cayleah Lamarsh.    [KENNETH JACKSON]  He’s a nice person to speak to. She’s very helpful. Always available.   [ARSHY] That’s Kenneth Jackson, a reporter with Aboriginal People’s Television Network. He’s been reporting on Cayleah’s situation from the beginning of the pandemic. Cayleah was abandoned by her mother at a very young age. By four, she was a Crown ward. And by eight she was in a group home.     [JACKSON] So you can just imagine at that age, eight. By then, that’s almost pure hell. For the most part, right? Like, that’s a lot of damage, you know, on a young developing mind.   [ARSHY] She was abused in various homes and, by 18, she aged out of the system. And by 21, she was homeless.   [JACKSON] She was on a Toronto bus. The freak accident, and she got flung forward and smashed her neck or shoulder off one of the poles, and she’s paralyzed from the waist down. And there was nowhere for her to go. So she went into a long-term care home. And she knows that she doesn’t want to be there. She’s been trying to get out. Even the doctor that first saw her says, “You don’t belong here. We can’t care for you. There’s nothing here for you.”   [ARSHY] Cayleah doesn’t need care 24/7. She just needs some help with things like getting out of bed or bathing. But long-term care was the only option presented to her.   [JACKSON] Caylee was abandoned in a child welfare system. Now she’s abandoned in a long-term care system. The long-term care one, that’s for life. She has a life sentence in that home.   [ARSHY] And Jonathan Marchand says that, once you’re inside, you’re simply not treated like a person.   [MARCHAND] Basically, you’ll lose your citizenship when you enter a long-term care facility. You become an object that we warehouse away. An object of care and profit.   [ARSHY] You become an object of care. Something to be managed. Something that has to fit into a schedule and a routine. And when Jonathan describes what that’s like, it sounds exactly like what people with intellectual disabilities had to face in places like the Orillia Asylum for Idiots.  Here’s Madeline Burkhart again, talking about what life in that institution was like decades ago.    [BURKHART] There’s so many thousands of little decisions that we make for ourselves every day that we’re just taking away from people. So there’s that whole dehumanization, as well. Like even just deciding what clothes to wear, or when to turn the lights off, when to get up in the morning, when to go to bed at night. What you are going to eat, how long you would take to eat your meal… All those things were controlled. All aspects of your daily life was organized and imposed from above, from the administration of the institution.   [ARSHY] And here’s Jonathan Marchand talking about what life is like today in long-term care.   [MARCHAND] It’s incredibly difficult because when you enter, you lose control over your life in all aspects. You don’t have any choice over who touches your body to provide you assistance. You’ve got no choice or control. At what time are you gonna get up? When you go to bed, what time are you gonna eat? What you gonna eat? Um, what time are you gonna go to the toilet? Basically everything is managed for you.   [ARSHY] And in these institutions, both past and present, the residents or patients or inmates, are forced to conform to the needs of the staff.   [BURKHART] And you can understand it when you think about… If there were hundreds, sometimes thousands of people living together, you can’t organize that many people in a way that allows individual choice and freedom. And so the administrative needs of the institution always superseded the individual desires and needs of the residents.    [MARCHAND] Whenever there’s a conflict between your well-being, your rights and the rules, the law and the way the services are organized, it’s, it’s always the latter that wins.  In an institution, you need to keep the peace here and you need to stay in your lane, to stay quiet. They want you to be obedient. They want you to be kind at all times. You got to be a good cripple, right? You got to do what they say.   [ARSHY] If you’re not obedient, if you don’t stay quiet, you can be restrained. In Ontario in 2010, 16 per cent of long-term care residents were physically restrained on a daily basis. That number is now down to around four per cent.  Often, this is done because people are violent or a danger to themselves. But it’s still undeniably inhumane.  And then there’s the use of chemical restraints. Long-term care residents are often given anti-psychotic drugs, even if they have not been diagnosed with psychosis.   [RILEY] You can imagine that an antipsychotic drug has a lot of the same side-effects symptoms of waning mental capacity. So if you administered an antipsychotic drug, you can become very lethargic, you can become very confused. You can seem less interested in life in general. It’s… It’s a pacifier, essentially. It might make it much more difficult for you to manage your daily tasks.  So even if you went into a nursing home with mental capacity that was quite robust, if you were making a big fuss, if you’re complaining all the time and becoming a real disruption to all the other residents, it’s not out of the realm of possibility that you might be administered antipsychotic drugs just to calm you down, which could then further the case against you that your mental capacity is waning.   [ARSHY] A 2011 investigation by the BC government found that over 50 per cent of people in long-term care were on some kind of anti-psychotic medication. Many of them did not have any kind of documented diagnosis for psychosis. It’s true that historically, abusers have been attracted to the power that working in these kinds of institutions gives them. But that’s not the majority of people.   [BURGHART] We are horrified when we hear stories about staff doing terrible things in institutions, but we don’t make that easy.   [ARSHY] The systems that are set up almost demand that the residents are treated in these awful ways.    [BURGHART] It’s just harder, plain and simple, to be kind when you are looking after that many people and being asked to help 10 people to have a bath, or asked to help 20 people to eat their dinner, or whatever it may be, it takes away the opportunity for–for real care, I think. Institutions do not make it easy for people to be really kind and provide the care that we all are entitled to.    [ARSHY] If you’re in an institution, you lose control over almost everything.    [MARCHAND] And it goes even further than that. My experience is that they even want to control the way you die,   [ARSHY] At one point, when Jonathan was in the hospital, he wanted to just go home, whether or not he got the care he needed, even if it put his life in danger. But Jonathan was told that he couldn’t.   [MARCHAND] But he told me, “No, it’s dangerous. You can’t do that. We need to ensure your safety and we’ll go to court to stop you from going out.”   [ARSHY] This was coming from the same people who were pressuring him to end his own life. But they wouldn’t let him choose how.   [MARCHAND] So even in death, they want to control the way you die. So that’s… That’s messed up. You become an object to them that they have to keep track of. And an object doesn’t have any kind of rights whatsoever. You got to be this passive thing. I think it’s incredibly dehumanizing, and I don’t want to be part of that system anymore. I want to get out. I want to be able to live my own life according to my own values and be able to contribute to society like everyone else. I don’t see how anyone can live in a place like that. Frankly, I think humans are not made to live inside institutions.   PART THREE [ARSHY] In his first few years in long-term care, Jonathan Marchand considered acting on the advice so many medical professionals were giving him. Euthanasia.    [MARCHAND] Most people were pushing me toward euthanasia. You know, that conversation was coming up over and over again. So I started to get really depressed at that time. Um, and I was seeking, uh, ways, uh, to end my life. So, I was in this mindset that there was so way out, and death was my escape. But something happened. Eventually on the Internet, I met on Facebook… I met with other people with disabilities outside of, uh, Quebec. In Canada, in the United States, in Europe and in Australia, who had needs similar to mine, who were using ventilators or needed 24 hour assistance. And they had that assistance in their own home. And they were working. They had partners. They are… They had a normal life. So I was like, what the hell? Why can’t I get that in Quebec?   [ARSHY] Before long-term care, Jonathan had never been an activist. He didn’t think much about disability rights or liberation before he was trapped in this home. Once he started to connect with other people like him around the world, Jonathan realized he wasn’t the problem. His disability didn’t mean he had to live in long-term care. There are lots of people, just like him, living in their communities, having a normal life. And he saw how other people had gotten those changes made. Disabled people themselves have to demand it.    [MARCHAND] That’s the key. Because when you rely on third parties to do the work for you, oftentimes you end up with, uh, crumbs or, you know, things that, um, don’t respect your rights and don’t lead to your emancipation.   [ARSHY] He co-founded a cooperative with some friends to lobby the Quebec government to provide funding so people like him could live at home. And he argues that it’s actually cheaper to do that, than house people in long-term care.   [MARCHAND] There are no economic arguments against that proposition. Actually, you are throwing money away by continuing to invest in institutions.   [ARSHY] Throughout this season of Commons, we’ve been telling you about how underfunded and understaffed the long-term care system is. How we need higher standards of care, more resources, better training. But Jonathan thinks all of that is bullshit.    [MARCHAND] I think long-term care facilities should not exist. Um… It’s, um, something that’s been put in place to exclude and eliminate people with disabilities from society.   [ARSHY] Jonathan is in favour of abolition.   [MARCHAND] The idea that we can have good institutions is false. These places are designed to deprive the, the freedom of people with disabilities and the elderly. It’s incompatible with life.   [ARSHY] Jonathan believes that all institutions, whether it was an asylum 150 years ago, or long-term care today, are dehumanizing by their very nature, that more money isn’t going to fix this, that reform isn’t going make people’s lives better. Instead, we need to burn it all down. Let disabled people live in their own homes. Give them the money they need to hire caregivers that will come to them. Jonathan’s still fighting to get out of long-term care. He’s done dozens of interviews with the press. He’s tried to reach out to Quebec’s premier, François Legault, but all his calls have gone unanswered. And even if he does get out, he’s worried.    [MARCHAND] I’ve been inside for 10 years now and I’m starting to forget how it’s like to be living in the community like everyone else. When you enter a Long-Term Care Facility, it’s like your world shrinks from day-to-day, week-to-week, month-to-month, year-to-year, until your world becomes your–your room or the, the hallway, or the staff that surrounds you. If  I think too much about the future, when I have no future right now, I mean, it’s incredibly demoralizing. It’s, uh.. It can even be dangerous because, when you suffer a setback, then you can lose hope. And so I try to live day-by-day as much as I can. But I want to expand my world.   OUTRO For a century and a half, we have put disabled people in institutions against their will. Long-term care is just the latest iteration of that. For Jonathan, it all comes down to discrimination.   [MARCHAND] It’s a big cultural and systemic issue. People with disabilities are discriminated against every day, at all levels. And it goes even as far as to the idea that our lives are not worth treating and it’s better to be dead than to be disabled.   [ARSHY] Even as the pandemic has killed thousands of people in long-term care, he doesn’t expect things to get better.    [MARCHAND] So, there’s no political will that I see to really change things. And that’s what makes me very angry. There are solutions. We can do better. But it’s off the table, even now with thousands of people dead. What has been announced to change things, turn things around? Next to nothing. And if we don’t do something collectedly, they’re going to get away with it.   [ARSHY] The debate over the future of long-term care is just beginning. But maybe it shouldn’t have any future at all.    END CREDITS That’s your episode of Commons for the week. If you want to support us, click on the link in your show notes or go to commonspodcast.com This episode relied on work done by Sharon Riley at The Walrus, Kenneth Jackson at APTN, Dustin Galer, Madeline Burghardt, the team behind Hope is Not a Plan, and many, many others I want to give a special shout-out to Aimee Louw at The Walrus for all of her help.  If you want to get in touch with us, you can tweet at us at @COMMONSpod. You can also email me, Arshy@canadalandshow.com This episode was produced by me and Jordan Cornish, with additional production by Tiffany Lam. Our managing editor is Andréa Schmidt. And our music is by Nathan Burley.  If you like what we do, please help us make this show. Click on the link in your show notes or go to commonspodcast.com   I think you should be getting our newsletterGet a weekly note about our top stories.This is a good thing that we do. 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May 30, 2017
76
Amy Goodman/The Constitutional Clusterf**k
Support us at commonspodcast.com Jonathan Marchand is one of the thousands of young disabled people living in long-term care. But Marchand doesn’t want to fix the system. He doesn’t think it can be reformed. Marchand is an abolitionist. For a century and a half, Canada has hidden away disabled people in institutions where they were neglected and abused. Is long-term care just the latest incarnation of this dark history?   COMMONS: Pandemic is currently focusing on how COVID-19 is affecting long-term care in Canada. Featured in this episode: Jonathan Marchand, Sharon J. Riley (The Walrus), Kenneth Jackson (APTN News), Madeline Burghardt, Dustin Galer To learn more: “When Is a Senior No Longer Capable of Making Their Own Decisions?” by Sharon J. Riley in The Walrus “‘Sitting duck’: Disabled woman, 27, lives in Toronto seniors home with COVID-19 outbreak” by Kenneth Jackson in APTN News Working Towards Equity: Disability Rights Activism and Employment in Late Twentieth-Century by Dustin Galer Broken: Institutions, Families, and the Construction of Intellectual Disability by Madeline Burghardt  Hope Is Not a Plan   This episode is sponsored by Freshbooks Additional music from Audio Network   TRANSCRIPT:    EPISODE 10 – “BURN IT DOWN”   COLD OPEN [ARSHY] Until 2010, Jonathan Marchand had a pretty normal life. He has muscular dystrophy, but that hadn’t been too much of an impediment for him.     [JONATHAN MARCHAND] I always had a disability. It’s a degenerative disability, so I walked until the age of 15. After that, I started to use a wheelchair and I didn’t need much help in my daily living.   [ARSHY] Jonathan’s a senior network engineer. He’s worked for different internet service providers in Quebec and in Australia. He has a partner he’s been with now for 18 years.   [MARCHAND] I was working. I had an active normal life, I had lots of projects for the future.   [ARSHY] And that’s how Jonathan expected things to go. But he didn’t really understand what his condition could do to him.   [MARCHAND] I was ill-advised by my doctors as well. I didn’t know what was in store for me. No one neither ever told me. So I was pretty ignorant about what could happen.   [ARSHY] And in 2010, it happened. He wasn’t feeling well, so he went to see a doctor. They discovered he had a bad case of pneumonia. Jonathan got sent to the ICU.   [MARCHAND] In the ICU there’s two weeks I don’t remember what happened.   [ARSHY] All he remembers are the terrifying hallucinations he experienced.   [MARCHAND] The only recollections of those two weeks are hallucinations, where people are torturing me, basically setting on fires, stabbing me, and, you know, all kinds of horrific experiences like that.   [ARSHY] When he finally came to, the doctors spoke to him.   [MARCHAND] And what they told me is that I would never come out of the– of the hospital because I was dependent now on a ventilator to breathe and there was no option to go back home.   [ARSHY] It was devastating news. And according to Jonathan, his doctors said that the best thing for him would be to refuse further treatment, and that would mean certain death.   [MARCHAND] And what they were pressuring me, pressuring me to accept these euthanasia, three different doctors had that talk with me and tried to pressure me into accepting that. And I spent a few weeks just looking at the ceiling, trying to work out what I was going to do, if I was going to indeed accept to, to be euthanized. Eventually, I refused because I wasn’t ready to die.    [ARSHY] Jonathan wanted to live. He had adapted to major life changes before. He could make his way through this, too. And for two years he tried to get out of the hospital and back to his own home. But the government insisted that his care needs were too high. They weren’t willing to pay for it. So Jonathan had to take the only option that was left on the table. At the age of 35, Jonathan Marchand moved into a long-term care home. I’m Arshy Mann and from Canadaland, this is Commons.   PART ONE [ARSHY] From the minute he moved into his long-term care home outside of Quebec City, Jonathan Marchand knew he didn’t belong there.   [MARCHAND] The first time I entered here, I was shocked. Really shocked. I got really depressed when I entered. And I stayed in my room for about three years and a half. I never went out of my room. I just stayed inside.    [ARSHY] Jonathan was promised that the CHSLD would be a place where he would have more autonomy and personal space. But he says it was just another hospital.  Many people would be surprised to find out that younger people like Jonathan Marchand end up in long-term care homes. We think of them as seniors homes, places where elderly people go at the end of their lives. But that’s the wrong way to look at it. These aren’t old age homes. These are places that house disabled people. They’re asylums. Now, that might seem like an odd claim because, of course, the vast majority of people who live in long-term care are quite elderly. But you don’t end up in long-term care just because you’re old. We know that 70 percent of people in long-term care have some form of dementia or other cognitive issue. The rest need help with some kind of physical ailment. Almost everyone who lives in long-term care is disabled, or perceived by the government to be disabled. And when Jonathan Marchand sees how differently the pandemic has affected people in long-term care, compared to the rest of the population, he sees it as a legacy of generations of discrimination against disabled people.   [MARCHAND] On one side you got the old and the disabled, living in long-term care facilities, dying by the thousands. And on the other side, you got the real citizens who contribute to society.   [ARSHY] And the institutionalization of disabled people has a long and dark history in this country. And it goes back all the way to the founding of the nation. The first institutions for disabled people in this country were founded shortly after confederation.   [DUSTIN GALER] These institutions, they were all part of the state-building process in the late 19th century, just as much, I think, as residential schools.   [ARSHY] That’s Dustin Galer, a historian and the author of Working Towards Equity, which covers the Canadian disability movement.    [MADELINE BURGHART] The first total institution for people with intellectual disabilities was opened in Canada, just outside Orillia, in Ontario, on the shores of Lake Simcoe in 1876. And the first name of that institution was the Orillia Asylum for Idiots. So that really demonstrates the kind of language that was used at the time. My name is Madeleine Burckhardt and I am an instructor in the School of Health Policy and Management at York University.    [ARSHY] The initial idea was to provide rehabilitation and training. And then people would then be sent back to their communities.    [BURGHART] Well, that sort of rehabilitative model shifted pretty quickly into what I call an “incarcerative model,” where people were not really receiving education or training very much. It was more just being housed.   [ARSHY] From the beginning, these places were overcrowded and underfunded. Abuse of all kinds was rampant. And people who were seen as deviant or non-conforming often ended up being housed there. Children from poor families, or women who were deemed unfit to raise a family, all ended up in these institutions.   [GALER] And particularly, they would treat adults with physical and intellectual disabilities and mental health issues with whatever the latest treatments were at the time. And of course, this often involved hard physical labor, isolation, electroshock therapy, all under the supervision of doctors.  And often, you know, it’s important to remember that disabled people were deposited here by families, often under the sincere belief they would be better off.    [ARSHY] By the turn of the century, a new perfidious idea was making its way through the Canadian medical and political establishments — eugenics.   [BURGHART] This was really being promoted as sound, good health policy. You know, that this was going to be good for the general population if we could rid the population of people who were considered feeble minded. And this was absolutely believed and absolutely promoted and institutions were a tool for that movement.   [ARSHY] The epicentre of this movement was Alberta. In 1928 the Albertan government passed the Sexual Sterilization Act. Children with disabilities in these institutions were amongst the many undesirables who were forcibly sterilized, usually without their knowledge. The law wasn’t repealed until 1972. But by the middle of the century, the tide had begun to turn against routine institutionalization.  Journalist Pierre Berton exposed the conditions inside the Orillia asylum in 1960.    [GALER] And people were just horrified by what they saw. People were just flocking around in diapers, and no, no semblance of care being had. Or, you know, overmedication, these types of things. And this actually helped start a movement to deinstitutionalize people with physical disability, intellectual developmental disabilities, and mental health issues.   [ARSHY] Mothers of disabled children pushed back against efforts to have their kids institutionalized. They argued that they should be supported at home, instead. And the arguments resonated. The institutions began to close.    [GALER] But the problem with the response to deinstitutionalization was that governments… They didn’t really commit enough resources to build out an adequate network of community services. So, a lot of the time, it was… It was almost seen as a cost-saving measure, like this movement to deinstitutionalize people kind of overlapped with the desire to reduce budgets.    [ARSHY] Many disabled Canadians ended up homeless, living in shelters, in chronic care in hospitals, and of course, in nursing homes in long-term care. But it was around this time that disabled Canadians found new avenues to advocate for themselves. Disability was becoming an identity.   [GALER] So there were different disability movements. But a big one that emerged in the 70s and 80s were consumer activists. So, these are people with disabilities, themselves, pushing back, demanding greater rights to protect them.    [ARSHY] And an important part of these movements was confronting the caregivers who once claimed to speak for disabled people. Disabled people made it clear that they are their own best advocates. By the 2000s, disability rights and liberation movements were widespread. But many disabled Canadians continue to live in institutions that don’t serve their needs, where they’re abused and neglected. The Huronia Regional Centre, first known as the Orillia Asylum for Idiots, only closed down in 2009.   PART TWO [ARSHY] So what makes long-term care different from these earlier institutions for disabled people? I think if we’re being honest, it’s not much. And a major reason why is that there are specific processes that happen when you’re institutionalized. By their very nature, they’re dehumanizing. Let’s start out with how you end up in long-term care.   [SHARON RILEY] We have seen surveys coming out of provinces like B.C. where advocates have surveyed nursing home residents and found that at least half of them say they don’t want to be there.   [ARSHY] That’s Sharon J. Riley, an investigative journalist, and a longtime friend of the show. She recently tackled this very question in a big feature she wrote and reported for The Walrus. There are some people who plan for long-term care, but that’s not the majority. For a lot of the people who are deemed to have dementia or another intellectual disability, it starts with a capacity test.   [RILEY] A capacity test is a tool that’s used to assess someone’s mental capacity. It’s important to note that mental capacity is not about how smart you are. It’s about your ability to make decisions, taking into account the implications of those decisions. When an assessor who’s measuring capacity is trying to make that determination, they can ask you all sorts of questions. They can ask you questions about your living situation. So say, “What would happen to you if you fell at home,” or ask you questions about how you pay your bills. “What would happen if you continue living at home?” “What would happen if you moved to a nursing home,” and sort of assess whether you understand the implications of each of those things. Not whether you want it or not, but whether you understand what it means. But an assessor can also look at cognitive abilities as sort of a way to feed into this determination. And that’s where things get a little bit tricky. ‘Cause there are many different cognitive tests out there. They can ask you kind of jarring and weird questions. Being asked, “Can you draw a clock face? Can you name as many words as you can think of that start with the letter ‘F’?” Can you say ifs, ands and buts three times and given a time limit on each of these things? So you might be very flustered. You might have 30 seconds to name as many words as you can think of that start with the letter F. Also, another test that can feed into a capacity assessment, though it is not measuring capacity itself, is measuring depression. So you might be asked questions like, “Do you feel pretty worthless right now, or is it wonderful to be alive?” These are, like, word for word questions on a depression scale assessment. And those answers can also feed into an assessor’s determination of whether or not you have mental capacity.   [ARSHY] These tests often last only 30 or 45 minutes. If the assessor decides that you don’t have the capacity to make your own decisions, from that one interview, the state can take over life. You can lose control of your finances, and they can force you to leave your home and go live in long-term care.   [RILEY] So the implications of the capacity tests can be enormous. Even though it can be short and the questions can seem strange, in the end, the assessor can decide to take away some pretty huge liberties that we enjoy as adults.    [ARSHY] For the majority of Canadians, there are few ways to fight the decision. Ontario is the only province that even has an appeals process. But that’s not the only way that people end up in the system. Many, like Jonathan Marchand, are forced into it because the government says that there’s nowhere else they can get the level of care that they require.   [JONATHAN MARCHAND] They could not give me enough hours of assistance the whole day. There are hard caps on the hours that you can get in Quebec. It’s around 44 hours a week and I needed 168 hours a week.   [ARSHY] Or take the case of Cayleah Lamarsh.    [KENNETH JACKSON]  He’s a nice person to speak to. She’s very helpful. Always available.   [ARSHY] That’s Kenneth Jackson, a reporter with Aboriginal People’s Television Network. He’s been reporting on Cayleah’s situation from the beginning of the pandemic. Cayleah was abandoned by her mother at a very young age. By four, she was a Crown ward. And by eight she was in a group home.     [JACKSON] So you can just imagine at that age, eight. By then, that’s almost pure hell. For the most part, right? Like, that’s a lot of damage, you know, on a young developing mind.   [ARSHY] She was abused in various homes and, by 18, she aged out of the system. And by 21, she was homeless.   [JACKSON] She was on a Toronto bus. The freak accident, and she got flung forward and smashed her neck or shoulder off one of the poles, and she’s paralyzed from the waist down. And there was nowhere for her to go. So she went into a long-term care home. And she knows that she doesn’t want to be there. She’s been trying to get out. Even the doctor that first saw her says, “You don’t belong here. We can’t care for you. There’s nothing here for you.”   [ARSHY] Cayleah doesn’t need care 24/7. She just needs some help with things like getting out of bed or bathing. But long-term care was the only option presented to her.   [JACKSON] Caylee was abandoned in a child welfare system. Now she’s abandoned in a long-term care system. The long-term care one, that’s for life. She has a life sentence in that home.   [ARSHY] And Jonathan Marchand says that, once you’re inside, you’re simply not treated like a person.   [MARCHAND] Basically, you’ll lose your citizenship when you enter a long-term care facility. You become an object that we warehouse away. An object of care and profit.   [ARSHY] You become an object of care. Something to be managed. Something that has to fit into a schedule and a routine. And when Jonathan describes what that’s like, it sounds exactly like what people with intellectual disabilities had to face in places like the Orillia Asylum for Idiots.  Here’s Madeline Burkhart again, talking about what life in that institution was like decades ago.    [BURKHART] There’s so many thousands of little decisions that we make for ourselves every day that we’re just taking away from people. So there’s that whole dehumanization, as well. Like even just deciding what clothes to wear, or when to turn the lights off, when to get up in the morning, when to go to bed at night. What you are going to eat, how long you would take to eat your meal… All those things were controlled. All aspects of your daily life was organized and imposed from above, from the administration of the institution.   [ARSHY] And here’s Jonathan Marchand talking about what life is like today in long-term care.   [MARCHAND] It’s incredibly difficult because when you enter, you lose control over your life in all aspects. You don’t have any choice over who touches your body to provide you assistance. You’ve got no choice or control. At what time are you gonna get up? When you go to bed, what time are you gonna eat? What you gonna eat? Um, what time are you gonna go to the toilet? Basically everything is managed for you.   [ARSHY] And in these institutions, both past and present, the residents or patients or inmates, are forced to conform to the needs of the staff.   [BURKHART] And you can understand it when you think about… If there were hundreds, sometimes thousands of people living together, you can’t organize that many people in a way that allows individual choice and freedom. And so the administrative needs of the institution always superseded the individual desires and needs of the residents.    [MARCHAND] Whenever there’s a conflict between your well-being, your rights and the rules, the law and the way the services are organized, it’s, it’s always the latter that wins.  In an institution, you need to keep the peace here and you need to stay in your lane, to stay quiet. They want you to be obedient. They want you to be kind at all times. You got to be a good cripple, right? You got to do what they say.   [ARSHY] If you’re not obedient, if you don’t stay quiet, you can be restrained. In Ontario in 2010, 16 per cent of long-term care residents were physically restrained on a daily basis. That number is now down to around four per cent.  Often, this is done because people are violent or a danger to themselves. But it’s still undeniably inhumane.  And then there’s the use of chemical restraints. Long-term care residents are often given anti-psychotic drugs, even if they have not been diagnosed with psychosis.   [RILEY] You can imagine that an antipsychotic drug has a lot of the same side-effects symptoms of waning mental capacity. So if you administered an antipsychotic drug, you can become very lethargic, you can become very confused. You can seem less interested in life in general. It’s… It’s a pacifier, essentially. It might make it much more difficult for you to manage your daily tasks.  So even if you went into a nursing home with mental capacity that was quite robust, if you were making a big fuss, if you’re complaining all the time and becoming a real disruption to all the other residents, it’s not out of the realm of possibility that you might be administered antipsychotic drugs just to calm you down, which could then further the case against you that your mental capacity is waning.   [ARSHY] A 2011 investigation by the BC government found that over 50 per cent of people in long-term care were on some kind of anti-psychotic medication. Many of them did not have any kind of documented diagnosis for psychosis. It’s true that historically, abusers have been attracted to the power that working in these kinds of institutions gives them. But that’s not the majority of people.   [BURGHART] We are horrified when we hear stories about staff doing terrible things in institutions, but we don’t make that easy.   [ARSHY] The systems that are set up almost demand that the residents are treated in these awful ways.    [BURGHART] It’s just harder, plain and simple, to be kind when you are looking after that many people and being asked to help 10 people to have a bath, or asked to help 20 people to eat their dinner, or whatever it may be, it takes away the opportunity for–for real care, I think. Institutions do not make it easy for people to be really kind and provide the care that we all are entitled to.    [ARSHY] If you’re in an institution, you lose control over almost everything.    [MARCHAND] And it goes even further than that. My experience is that they even want to control the way you die,   [ARSHY] At one point, when Jonathan was in the hospital, he wanted to just go home, whether or not he got the care he needed, even if it put his life in danger. But Jonathan was told that he couldn’t.   [MARCHAND] But he told me, “No, it’s dangerous. You can’t do that. We need to ensure your safety and we’ll go to court to stop you from going out.”   [ARSHY] This was coming from the same people who were pressuring him to end his own life. But they wouldn’t let him choose how.   [MARCHAND] So even in death, they want to control the way you die. So that’s… That’s messed up. You become an object to them that they have to keep track of. And an object doesn’t have any kind of rights whatsoever. You got to be this passive thing. I think it’s incredibly dehumanizing, and I don’t want to be part of that system anymore. I want to get out. I want to be able to live my own life according to my own values and be able to contribute to society like everyone else. I don’t see how anyone can live in a place like that. Frankly, I think humans are not made to live inside institutions.   PART THREE [ARSHY] In his first few years in long-term care, Jonathan Marchand considered acting on the advice so many medical professionals were giving him. Euthanasia.    [MARCHAND] Most people were pushing me toward euthanasia. You know, that conversation was coming up over and over again. So I started to get really depressed at that time. Um, and I was seeking, uh, ways, uh, to end my life. So, I was in this mindset that there was so way out, and death was my escape. But something happened. Eventually on the Internet, I met on Facebook… I met with other people with disabilities outside of, uh, Quebec. In Canada, in the United States, in Europe and in Australia, who had needs similar to mine, who were using ventilators or needed 24 hour assistance. And they had that assistance in their own home. And they were working. They had partners. They are… They had a normal life. So I was like, what the hell? Why can’t I get that in Quebec?   [ARSHY] Before long-term care, Jonathan had never been an activist. He didn’t think much about disability rights or liberation before he was trapped in this home. Once he started to connect with other people like him around the world, Jonathan realized he wasn’t the problem. His disability didn’t mean he had to live in long-term care. There are lots of people, just like him, living in their communities, having a normal life. And he saw how other people had gotten those changes made. Disabled people themselves have to demand it.    [MARCHAND] That’s the key. Because when you rely on third parties to do the work for you, oftentimes you end up with, uh, crumbs or, you know, things that, um, don’t respect your rights and don’t lead to your emancipation.   [ARSHY] He co-founded a cooperative with some friends to lobby the Quebec government to provide funding so people like him could live at home. And he argues that it’s actually cheaper to do that, than house people in long-term care.   [MARCHAND] There are no economic arguments against that proposition. Actually, you are throwing money away by continuing to invest in institutions.   [ARSHY] Throughout this season of Commons, we’ve been telling you about how underfunded and understaffed the long-term care system is. How we need higher standards of care, more resources, better training. But Jonathan thinks all of that is bullshit.    [MARCHAND] I think long-term care facilities should not exist. Um… It’s, um, something that’s been put in place to exclude and eliminate people with disabilities from society.   [ARSHY] Jonathan is in favour of abolition.   [MARCHAND] The idea that we can have good institutions is false. These places are designed to deprive the, the freedom of people with disabilities and the elderly. It’s incompatible with life.   [ARSHY] Jonathan believes that all institutions, whether it was an asylum 150 years ago, or long-term care today, are dehumanizing by their very nature, that more money isn’t going to fix this, that reform isn’t going make people’s lives better. Instead, we need to burn it all down. Let disabled people live in their own homes. Give them the money they need to hire caregivers that will come to them. Jonathan’s still fighting to get out of long-term care. He’s done dozens of interviews with the press. He’s tried to reach out to Quebec’s premier, François Legault, but all his calls have gone unanswered. And even if he does get out, he’s worried.    [MARCHAND] I’ve been inside for 10 years now and I’m starting to forget how it’s like to be living in the community like everyone else. When you enter a Long-Term Care Facility, it’s like your world shrinks from day-to-day, week-to-week, month-to-month, year-to-year, until your world becomes your–your room or the, the hallway, or the staff that surrounds you. If  I think too much about the future, when I have no future right now, I mean, it’s incredibly demoralizing. It’s, uh.. It can even be dangerous because, when you suffer a setback, then you can lose hope. And so I try to live day-by-day as much as I can. But I want to expand my world.   OUTRO For a century and a half, we have put disabled people in institutions against their will. Long-term care is just the latest iteration of that. For Jonathan, it all comes down to discrimination.   [MARCHAND] It’s a big cultural and systemic issue. People with disabilities are discriminated against every day, at all levels. And it goes even as far as to the idea that our lives are not worth treating and it’s better to be dead than to be disabled.   [ARSHY] Even as the pandemic has killed thousands of people in long-term care, he doesn’t expect things to get better.    [MARCHAND] So, there’s no political will that I see to really change things. And that’s what makes me very angry. There are solutions. We can do better. But it’s off the table, even now with thousands of people dead. What has been announced to change things, turn things around? Next to nothing. And if we don’t do something collectedly, they’re going to get away with it.   [ARSHY] The debate over the future of long-term care is just beginning. But maybe it shouldn’t have any future at all.    END CREDITS That’s your episode of Commons for the week. If you want to support us, click on the link in your show notes or go to commonspodcast.com This episode relied on work done by Sharon Riley at The Walrus, Kenneth Jackson at APTN, Dustin Galer, Madeline Burghardt, the team behind Hope is Not a Plan, and many, many others I want to give a special shout-out to Aimee Louw at The Walrus for all of her help.  If you want to get in touch with us, you can tweet at us at @COMMONSpod. You can also email me, Arshy@canadalandshow.com This episode was produced by me and Jordan Cornish, with additional production by Tiffany Lam. Our managing editor is Andréa Schmidt. And our music is by Nathan Burley.  If you like what we do, please help us make this show. Click on the link in your show notes or go to commonspodcast.com   I think you should be getting our newsletterGet a weekly note about our top stories.This is a good thing that we do. 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June 13, 2017
77
The Rise Of The Right
Support us at commonspodcast.com Jonathan Marchand is one of the thousands of young disabled people living in long-term care. But Marchand doesn’t want to fix the system. He doesn’t think it can be reformed. Marchand is an abolitionist. For a century and a half, Canada has hidden away disabled people in institutions where they were neglected and abused. Is long-term care just the latest incarnation of this dark history?   COMMONS: Pandemic is currently focusing on how COVID-19 is affecting long-term care in Canada. Featured in this episode: Jonathan Marchand, Sharon J. Riley (The Walrus), Kenneth Jackson (APTN News), Madeline Burghardt, Dustin Galer To learn more: “When Is a Senior No Longer Capable of Making Their Own Decisions?” by Sharon J. Riley in The Walrus “‘Sitting duck’: Disabled woman, 27, lives in Toronto seniors home with COVID-19 outbreak” by Kenneth Jackson in APTN News Working Towards Equity: Disability Rights Activism and Employment in Late Twentieth-Century by Dustin Galer Broken: Institutions, Families, and the Construction of Intellectual Disability by Madeline Burghardt  Hope Is Not a Plan   This episode is sponsored by Freshbooks Additional music from Audio Network   TRANSCRIPT:    EPISODE 10 – “BURN IT DOWN”   COLD OPEN [ARSHY] Until 2010, Jonathan Marchand had a pretty normal life. He has muscular dystrophy, but that hadn’t been too much of an impediment for him.     [JONATHAN MARCHAND] I always had a disability. It’s a degenerative disability, so I walked until the age of 15. After that, I started to use a wheelchair and I didn’t need much help in my daily living.   [ARSHY] Jonathan’s a senior network engineer. He’s worked for different internet service providers in Quebec and in Australia. He has a partner he’s been with now for 18 years.   [MARCHAND] I was working. I had an active normal life, I had lots of projects for the future.   [ARSHY] And that’s how Jonathan expected things to go. But he didn’t really understand what his condition could do to him.   [MARCHAND] I was ill-advised by my doctors as well. I didn’t know what was in store for me. No one neither ever told me. So I was pretty ignorant about what could happen.   [ARSHY] And in 2010, it happened. He wasn’t feeling well, so he went to see a doctor. They discovered he had a bad case of pneumonia. Jonathan got sent to the ICU.   [MARCHAND] In the ICU there’s two weeks I don’t remember what happened.   [ARSHY] All he remembers are the terrifying hallucinations he experienced.   [MARCHAND] The only recollections of those two weeks are hallucinations, where people are torturing me, basically setting on fires, stabbing me, and, you know, all kinds of horrific experiences like that.   [ARSHY] When he finally came to, the doctors spoke to him.   [MARCHAND] And what they told me is that I would never come out of the– of the hospital because I was dependent now on a ventilator to breathe and there was no option to go back home.   [ARSHY] It was devastating news. And according to Jonathan, his doctors said that the best thing for him would be to refuse further treatment, and that would mean certain death.   [MARCHAND] And what they were pressuring me, pressuring me to accept these euthanasia, three different doctors had that talk with me and tried to pressure me into accepting that. And I spent a few weeks just looking at the ceiling, trying to work out what I was going to do, if I was going to indeed accept to, to be euthanized. Eventually, I refused because I wasn’t ready to die.    [ARSHY] Jonathan wanted to live. He had adapted to major life changes before. He could make his way through this, too. And for two years he tried to get out of the hospital and back to his own home. But the government insisted that his care needs were too high. They weren’t willing to pay for it. So Jonathan had to take the only option that was left on the table. At the age of 35, Jonathan Marchand moved into a long-term care home. I’m Arshy Mann and from Canadaland, this is Commons.   PART ONE [ARSHY] From the minute he moved into his long-term care home outside of Quebec City, Jonathan Marchand knew he didn’t belong there.   [MARCHAND] The first time I entered here, I was shocked. Really shocked. I got really depressed when I entered. And I stayed in my room for about three years and a half. I never went out of my room. I just stayed inside.    [ARSHY] Jonathan was promised that the CHSLD would be a place where he would have more autonomy and personal space. But he says it was just another hospital.  Many people would be surprised to find out that younger people like Jonathan Marchand end up in long-term care homes. We think of them as seniors homes, places where elderly people go at the end of their lives. But that’s the wrong way to look at it. These aren’t old age homes. These are places that house disabled people. They’re asylums. Now, that might seem like an odd claim because, of course, the vast majority of people who live in long-term care are quite elderly. But you don’t end up in long-term care just because you’re old. We know that 70 percent of people in long-term care have some form of dementia or other cognitive issue. The rest need help with some kind of physical ailment. Almost everyone who lives in long-term care is disabled, or perceived by the government to be disabled. And when Jonathan Marchand sees how differently the pandemic has affected people in long-term care, compared to the rest of the population, he sees it as a legacy of generations of discrimination against disabled people.   [MARCHAND] On one side you got the old and the disabled, living in long-term care facilities, dying by the thousands. And on the other side, you got the real citizens who contribute to society.   [ARSHY] And the institutionalization of disabled people has a long and dark history in this country. And it goes back all the way to the founding of the nation. The first institutions for disabled people in this country were founded shortly after confederation.   [DUSTIN GALER] These institutions, they were all part of the state-building process in the late 19th century, just as much, I think, as residential schools.   [ARSHY] That’s Dustin Galer, a historian and the author of Working Towards Equity, which covers the Canadian disability movement.    [MADELINE BURGHART] The first total institution for people with intellectual disabilities was opened in Canada, just outside Orillia, in Ontario, on the shores of Lake Simcoe in 1876. And the first name of that institution was the Orillia Asylum for Idiots. So that really demonstrates the kind of language that was used at the time. My name is Madeleine Burckhardt and I am an instructor in the School of Health Policy and Management at York University.    [ARSHY] The initial idea was to provide rehabilitation and training. And then people would then be sent back to their communities.    [BURGHART] Well, that sort of rehabilitative model shifted pretty quickly into what I call an “incarcerative model,” where people were not really receiving education or training very much. It was more just being housed.   [ARSHY] From the beginning, these places were overcrowded and underfunded. Abuse of all kinds was rampant. And people who were seen as deviant or non-conforming often ended up being housed there. Children from poor families, or women who were deemed unfit to raise a family, all ended up in these institutions.   [GALER] And particularly, they would treat adults with physical and intellectual disabilities and mental health issues with whatever the latest treatments were at the time. And of course, this often involved hard physical labor, isolation, electroshock therapy, all under the supervision of doctors.  And often, you know, it’s important to remember that disabled people were deposited here by families, often under the sincere belief they would be better off.    [ARSHY] By the turn of the century, a new perfidious idea was making its way through the Canadian medical and political establishments — eugenics.   [BURGHART] This was really being promoted as sound, good health policy. You know, that this was going to be good for the general population if we could rid the population of people who were considered feeble minded. And this was absolutely believed and absolutely promoted and institutions were a tool for that movement.   [ARSHY] The epicentre of this movement was Alberta. In 1928 the Albertan government passed the Sexual Sterilization Act. Children with disabilities in these institutions were amongst the many undesirables who were forcibly sterilized, usually without their knowledge. The law wasn’t repealed until 1972. But by the middle of the century, the tide had begun to turn against routine institutionalization.  Journalist Pierre Berton exposed the conditions inside the Orillia asylum in 1960.    [GALER] And people were just horrified by what they saw. People were just flocking around in diapers, and no, no semblance of care being had. Or, you know, overmedication, these types of things. And this actually helped start a movement to deinstitutionalize people with physical disability, intellectual developmental disabilities, and mental health issues.   [ARSHY] Mothers of disabled children pushed back against efforts to have their kids institutionalized. They argued that they should be supported at home, instead. And the arguments resonated. The institutions began to close.    [GALER] But the problem with the response to deinstitutionalization was that governments… They didn’t really commit enough resources to build out an adequate network of community services. So, a lot of the time, it was… It was almost seen as a cost-saving measure, like this movement to deinstitutionalize people kind of overlapped with the desire to reduce budgets.    [ARSHY] Many disabled Canadians ended up homeless, living in shelters, in chronic care in hospitals, and of course, in nursing homes in long-term care. But it was around this time that disabled Canadians found new avenues to advocate for themselves. Disability was becoming an identity.   [GALER] So there were different disability movements. But a big one that emerged in the 70s and 80s were consumer activists. So, these are people with disabilities, themselves, pushing back, demanding greater rights to protect them.    [ARSHY] And an important part of these movements was confronting the caregivers who once claimed to speak for disabled people. Disabled people made it clear that they are their own best advocates. By the 2000s, disability rights and liberation movements were widespread. But many disabled Canadians continue to live in institutions that don’t serve their needs, where they’re abused and neglected. The Huronia Regional Centre, first known as the Orillia Asylum for Idiots, only closed down in 2009.   PART TWO [ARSHY] So what makes long-term care different from these earlier institutions for disabled people? I think if we’re being honest, it’s not much. And a major reason why is that there are specific processes that happen when you’re institutionalized. By their very nature, they’re dehumanizing. Let’s start out with how you end up in long-term care.   [SHARON RILEY] We have seen surveys coming out of provinces like B.C. where advocates have surveyed nursing home residents and found that at least half of them say they don’t want to be there.   [ARSHY] That’s Sharon J. Riley, an investigative journalist, and a longtime friend of the show. She recently tackled this very question in a big feature she wrote and reported for The Walrus. There are some people who plan for long-term care, but that’s not the majority. For a lot of the people who are deemed to have dementia or another intellectual disability, it starts with a capacity test.   [RILEY] A capacity test is a tool that’s used to assess someone’s mental capacity. It’s important to note that mental capacity is not about how smart you are. It’s about your ability to make decisions, taking into account the implications of those decisions. When an assessor who’s measuring capacity is trying to make that determination, they can ask you all sorts of questions. They can ask you questions about your living situation. So say, “What would happen to you if you fell at home,” or ask you questions about how you pay your bills. “What would happen if you continue living at home?” “What would happen if you moved to a nursing home,” and sort of assess whether you understand the implications of each of those things. Not whether you want it or not, but whether you understand what it means. But an assessor can also look at cognitive abilities as sort of a way to feed into this determination. And that’s where things get a little bit tricky. ‘Cause there are many different cognitive tests out there. They can ask you kind of jarring and weird questions. Being asked, “Can you draw a clock face? Can you name as many words as you can think of that start with the letter ‘F’?” Can you say ifs, ands and buts three times and given a time limit on each of these things? So you might be very flustered. You might have 30 seconds to name as many words as you can think of that start with the letter F. Also, another test that can feed into a capacity assessment, though it is not measuring capacity itself, is measuring depression. So you might be asked questions like, “Do you feel pretty worthless right now, or is it wonderful to be alive?” These are, like, word for word questions on a depression scale assessment. And those answers can also feed into an assessor’s determination of whether or not you have mental capacity.   [ARSHY] These tests often last only 30 or 45 minutes. If the assessor decides that you don’t have the capacity to make your own decisions, from that one interview, the state can take over life. You can lose control of your finances, and they can force you to leave your home and go live in long-term care.   [RILEY] So the implications of the capacity tests can be enormous. Even though it can be short and the questions can seem strange, in the end, the assessor can decide to take away some pretty huge liberties that we enjoy as adults.    [ARSHY] For the majority of Canadians, there are few ways to fight the decision. Ontario is the only province that even has an appeals process. But that’s not the only way that people end up in the system. Many, like Jonathan Marchand, are forced into it because the government says that there’s nowhere else they can get the level of care that they require.   [JONATHAN MARCHAND] They could not give me enough hours of assistance the whole day. There are hard caps on the hours that you can get in Quebec. It’s around 44 hours a week and I needed 168 hours a week.   [ARSHY] Or take the case of Cayleah Lamarsh.    [KENNETH JACKSON]  He’s a nice person to speak to. She’s very helpful. Always available.   [ARSHY] That’s Kenneth Jackson, a reporter with Aboriginal People’s Television Network. He’s been reporting on Cayleah’s situation from the beginning of the pandemic. Cayleah was abandoned by her mother at a very young age. By four, she was a Crown ward. And by eight she was in a group home.     [JACKSON] So you can just imagine at that age, eight. By then, that’s almost pure hell. For the most part, right? Like, that’s a lot of damage, you know, on a young developing mind.   [ARSHY] She was abused in various homes and, by 18, she aged out of the system. And by 21, she was homeless.   [JACKSON] She was on a Toronto bus. The freak accident, and she got flung forward and smashed her neck or shoulder off one of the poles, and she’s paralyzed from the waist down. And there was nowhere for her to go. So she went into a long-term care home. And she knows that she doesn’t want to be there. She’s been trying to get out. Even the doctor that first saw her says, “You don’t belong here. We can’t care for you. There’s nothing here for you.”   [ARSHY] Cayleah doesn’t need care 24/7. She just needs some help with things like getting out of bed or bathing. But long-term care was the only option presented to her.   [JACKSON] Caylee was abandoned in a child welfare system. Now she’s abandoned in a long-term care system. The long-term care one, that’s for life. She has a life sentence in that home.   [ARSHY] And Jonathan Marchand says that, once you’re inside, you’re simply not treated like a person.   [MARCHAND] Basically, you’ll lose your citizenship when you enter a long-term care facility. You become an object that we warehouse away. An object of care and profit.   [ARSHY] You become an object of care. Something to be managed. Something that has to fit into a schedule and a routine. And when Jonathan describes what that’s like, it sounds exactly like what people with intellectual disabilities had to face in places like the Orillia Asylum for Idiots.  Here’s Madeline Burkhart again, talking about what life in that institution was like decades ago.    [BURKHART] There’s so many thousands of little decisions that we make for ourselves every day that we’re just taking away from people. So there’s that whole dehumanization, as well. Like even just deciding what clothes to wear, or when to turn the lights off, when to get up in the morning, when to go to bed at night. What you are going to eat, how long you would take to eat your meal… All those things were controlled. All aspects of your daily life was organized and imposed from above, from the administration of the institution.   [ARSHY] And here’s Jonathan Marchand talking about what life is like today in long-term care.   [MARCHAND] It’s incredibly difficult because when you enter, you lose control over your life in all aspects. You don’t have any choice over who touches your body to provide you assistance. You’ve got no choice or control. At what time are you gonna get up? When you go to bed, what time are you gonna eat? What you gonna eat? Um, what time are you gonna go to the toilet? Basically everything is managed for you.   [ARSHY] And in these institutions, both past and present, the residents or patients or inmates, are forced to conform to the needs of the staff.   [BURKHART] And you can understand it when you think about… If there were hundreds, sometimes thousands of people living together, you can’t organize that many people in a way that allows individual choice and freedom. And so the administrative needs of the institution always superseded the individual desires and needs of the residents.    [MARCHAND] Whenever there’s a conflict between your well-being, your rights and the rules, the law and the way the services are organized, it’s, it’s always the latter that wins.  In an institution, you need to keep the peace here and you need to stay in your lane, to stay quiet. They want you to be obedient. They want you to be kind at all times. You got to be a good cripple, right? You got to do what they say.   [ARSHY] If you’re not obedient, if you don’t stay quiet, you can be restrained. In Ontario in 2010, 16 per cent of long-term care residents were physically restrained on a daily basis. That number is now down to around four per cent.  Often, this is done because people are violent or a danger to themselves. But it’s still undeniably inhumane.  And then there’s the use of chemical restraints. Long-term care residents are often given anti-psychotic drugs, even if they have not been diagnosed with psychosis.   [RILEY] You can imagine that an antipsychotic drug has a lot of the same side-effects symptoms of waning mental capacity. So if you administered an antipsychotic drug, you can become very lethargic, you can become very confused. You can seem less interested in life in general. It’s… It’s a pacifier, essentially. It might make it much more difficult for you to manage your daily tasks.  So even if you went into a nursing home with mental capacity that was quite robust, if you were making a big fuss, if you’re complaining all the time and becoming a real disruption to all the other residents, it’s not out of the realm of possibility that you might be administered antipsychotic drugs just to calm you down, which could then further the case against you that your mental capacity is waning.   [ARSHY] A 2011 investigation by the BC government found that over 50 per cent of people in long-term care were on some kind of anti-psychotic medication. Many of them did not have any kind of documented diagnosis for psychosis. It’s true that historically, abusers have been attracted to the power that working in these kinds of institutions gives them. But that’s not the majority of people.   [BURGHART] We are horrified when we hear stories about staff doing terrible things in institutions, but we don’t make that easy.   [ARSHY] The systems that are set up almost demand that the residents are treated in these awful ways.    [BURGHART] It’s just harder, plain and simple, to be kind when you are looking after that many people and being asked to help 10 people to have a bath, or asked to help 20 people to eat their dinner, or whatever it may be, it takes away the opportunity for–for real care, I think. Institutions do not make it easy for people to be really kind and provide the care that we all are entitled to.    [ARSHY] If you’re in an institution, you lose control over almost everything.    [MARCHAND] And it goes even further than that. My experience is that they even want to control the way you die,   [ARSHY] At one point, when Jonathan was in the hospital, he wanted to just go home, whether or not he got the care he needed, even if it put his life in danger. But Jonathan was told that he couldn’t.   [MARCHAND] But he told me, “No, it’s dangerous. You can’t do that. We need to ensure your safety and we’ll go to court to stop you from going out.”   [ARSHY] This was coming from the same people who were pressuring him to end his own life. But they wouldn’t let him choose how.   [MARCHAND] So even in death, they want to control the way you die. So that’s… That’s messed up. You become an object to them that they have to keep track of. And an object doesn’t have any kind of rights whatsoever. You got to be this passive thing. I think it’s incredibly dehumanizing, and I don’t want to be part of that system anymore. I want to get out. I want to be able to live my own life according to my own values and be able to contribute to society like everyone else. I don’t see how anyone can live in a place like that. Frankly, I think humans are not made to live inside institutions.   PART THREE [ARSHY] In his first few years in long-term care, Jonathan Marchand considered acting on the advice so many medical professionals were giving him. Euthanasia.    [MARCHAND] Most people were pushing me toward euthanasia. You know, that conversation was coming up over and over again. So I started to get really depressed at that time. Um, and I was seeking, uh, ways, uh, to end my life. So, I was in this mindset that there was so way out, and death was my escape. But something happened. Eventually on the Internet, I met on Facebook… I met with other people with disabilities outside of, uh, Quebec. In Canada, in the United States, in Europe and in Australia, who had needs similar to mine, who were using ventilators or needed 24 hour assistance. And they had that assistance in their own home. And they were working. They had partners. They are… They had a normal life. So I was like, what the hell? Why can’t I get that in Quebec?   [ARSHY] Before long-term care, Jonathan had never been an activist. He didn’t think much about disability rights or liberation before he was trapped in this home. Once he started to connect with other people like him around the world, Jonathan realized he wasn’t the problem. His disability didn’t mean he had to live in long-term care. There are lots of people, just like him, living in their communities, having a normal life. And he saw how other people had gotten those changes made. Disabled people themselves have to demand it.    [MARCHAND] That’s the key. Because when you rely on third parties to do the work for you, oftentimes you end up with, uh, crumbs or, you know, things that, um, don’t respect your rights and don’t lead to your emancipation.   [ARSHY] He co-founded a cooperative with some friends to lobby the Quebec government to provide funding so people like him could live at home. And he argues that it’s actually cheaper to do that, than house people in long-term care.   [MARCHAND] There are no economic arguments against that proposition. Actually, you are throwing money away by continuing to invest in institutions.   [ARSHY] Throughout this season of Commons, we’ve been telling you about how underfunded and understaffed the long-term care system is. How we need higher standards of care, more resources, better training. But Jonathan thinks all of that is bullshit.    [MARCHAND] I think long-term care facilities should not exist. Um… It’s, um, something that’s been put in place to exclude and eliminate people with disabilities from society.   [ARSHY] Jonathan is in favour of abolition.   [MARCHAND] The idea that we can have good institutions is false. These places are designed to deprive the, the freedom of people with disabilities and the elderly. It’s incompatible with life.   [ARSHY] Jonathan believes that all institutions, whether it was an asylum 150 years ago, or long-term care today, are dehumanizing by their very nature, that more money isn’t going to fix this, that reform isn’t going make people’s lives better. Instead, we need to burn it all down. Let disabled people live in their own homes. Give them the money they need to hire caregivers that will come to them. Jonathan’s still fighting to get out of long-term care. He’s done dozens of interviews with the press. He’s tried to reach out to Quebec’s premier, François Legault, but all his calls have gone unanswered. And even if he does get out, he’s worried.    [MARCHAND] I’ve been inside for 10 years now and I’m starting to forget how it’s like to be living in the community like everyone else. When you enter a Long-Term Care Facility, it’s like your world shrinks from day-to-day, week-to-week, month-to-month, year-to-year, until your world becomes your–your room or the, the hallway, or the staff that surrounds you. If  I think too much about the future, when I have no future right now, I mean, it’s incredibly demoralizing. It’s, uh.. It can even be dangerous because, when you suffer a setback, then you can lose hope. And so I try to live day-by-day as much as I can. But I want to expand my world.   OUTRO For a century and a half, we have put disabled people in institutions against their will. Long-term care is just the latest iteration of that. For Jonathan, it all comes down to discrimination.   [MARCHAND] It’s a big cultural and systemic issue. People with disabilities are discriminated against every day, at all levels. And it goes even as far as to the idea that our lives are not worth treating and it’s better to be dead than to be disabled.   [ARSHY] Even as the pandemic has killed thousands of people in long-term care, he doesn’t expect things to get better.    [MARCHAND] So, there’s no political will that I see to really change things. And that’s what makes me very angry. There are solutions. We can do better. But it’s off the table, even now with thousands of people dead. What has been announced to change things, turn things around? Next to nothing. And if we don’t do something collectedly, they’re going to get away with it.   [ARSHY] The debate over the future of long-term care is just beginning. But maybe it shouldn’t have any future at all.    END CREDITS That’s your episode of Commons for the week. If you want to support us, click on the link in your show notes or go to commonspodcast.com This episode relied on work done by Sharon Riley at The Walrus, Kenneth Jackson at APTN, Dustin Galer, Madeline Burghardt, the team behind Hope is Not a Plan, and many, many others I want to give a special shout-out to Aimee Louw at The Walrus for all of her help.  If you want to get in touch with us, you can tweet at us at @COMMONSpod. You can also email me, Arshy@canadalandshow.com This episode was produced by me and Jordan Cornish, with additional production by Tiffany Lam. Our managing editor is Andréa Schmidt. And our music is by Nathan Burley.  If you like what we do, please help us make this show. Click on the link in your show notes or go to commonspodcast.com   I think you should be getting our newsletterGet a weekly note about our top stories.This is a good thing that we do. 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July 4, 2017
78
Guy Caron, Guaranteed Income And Climate Refugees
Support us at commonspodcast.com Jonathan Marchand is one of the thousands of young disabled people living in long-term care. But Marchand doesn’t want to fix the system. He doesn’t think it can be reformed. Marchand is an abolitionist. For a century and a half, Canada has hidden away disabled people in institutions where they were neglected and abused. Is long-term care just the latest incarnation of this dark history?   COMMONS: Pandemic is currently focusing on how COVID-19 is affecting long-term care in Canada. Featured in this episode: Jonathan Marchand, Sharon J. Riley (The Walrus), Kenneth Jackson (APTN News), Madeline Burghardt, Dustin Galer To learn more: “When Is a Senior No Longer Capable of Making Their Own Decisions?” by Sharon J. Riley in The Walrus “‘Sitting duck’: Disabled woman, 27, lives in Toronto seniors home with COVID-19 outbreak” by Kenneth Jackson in APTN News Working Towards Equity: Disability Rights Activism and Employment in Late Twentieth-Century by Dustin Galer Broken: Institutions, Families, and the Construction of Intellectual Disability by Madeline Burghardt  Hope Is Not a Plan   This episode is sponsored by Freshbooks Additional music from Audio Network   TRANSCRIPT:    EPISODE 10 – “BURN IT DOWN”   COLD OPEN [ARSHY] Until 2010, Jonathan Marchand had a pretty normal life. He has muscular dystrophy, but that hadn’t been too much of an impediment for him.     [JONATHAN MARCHAND] I always had a disability. It’s a degenerative disability, so I walked until the age of 15. After that, I started to use a wheelchair and I didn’t need much help in my daily living.   [ARSHY] Jonathan’s a senior network engineer. He’s worked for different internet service providers in Quebec and in Australia. He has a partner he’s been with now for 18 years.   [MARCHAND] I was working. I had an active normal life, I had lots of projects for the future.   [ARSHY] And that’s how Jonathan expected things to go. But he didn’t really understand what his condition could do to him.   [MARCHAND] I was ill-advised by my doctors as well. I didn’t know what was in store for me. No one neither ever told me. So I was pretty ignorant about what could happen.   [ARSHY] And in 2010, it happened. He wasn’t feeling well, so he went to see a doctor. They discovered he had a bad case of pneumonia. Jonathan got sent to the ICU.   [MARCHAND] In the ICU there’s two weeks I don’t remember what happened.   [ARSHY] All he remembers are the terrifying hallucinations he experienced.   [MARCHAND] The only recollections of those two weeks are hallucinations, where people are torturing me, basically setting on fires, stabbing me, and, you know, all kinds of horrific experiences like that.   [ARSHY] When he finally came to, the doctors spoke to him.   [MARCHAND] And what they told me is that I would never come out of the– of the hospital because I was dependent now on a ventilator to breathe and there was no option to go back home.   [ARSHY] It was devastating news. And according to Jonathan, his doctors said that the best thing for him would be to refuse further treatment, and that would mean certain death.   [MARCHAND] And what they were pressuring me, pressuring me to accept these euthanasia, three different doctors had that talk with me and tried to pressure me into accepting that. And I spent a few weeks just looking at the ceiling, trying to work out what I was going to do, if I was going to indeed accept to, to be euthanized. Eventually, I refused because I wasn’t ready to die.    [ARSHY] Jonathan wanted to live. He had adapted to major life changes before. He could make his way through this, too. And for two years he tried to get out of the hospital and back to his own home. But the government insisted that his care needs were too high. They weren’t willing to pay for it. So Jonathan had to take the only option that was left on the table. At the age of 35, Jonathan Marchand moved into a long-term care home. I’m Arshy Mann and from Canadaland, this is Commons.   PART ONE [ARSHY] From the minute he moved into his long-term care home outside of Quebec City, Jonathan Marchand knew he didn’t belong there.   [MARCHAND] The first time I entered here, I was shocked. Really shocked. I got really depressed when I entered. And I stayed in my room for about three years and a half. I never went out of my room. I just stayed inside.    [ARSHY] Jonathan was promised that the CHSLD would be a place where he would have more autonomy and personal space. But he says it was just another hospital.  Many people would be surprised to find out that younger people like Jonathan Marchand end up in long-term care homes. We think of them as seniors homes, places where elderly people go at the end of their lives. But that’s the wrong way to look at it. These aren’t old age homes. These are places that house disabled people. They’re asylums. Now, that might seem like an odd claim because, of course, the vast majority of people who live in long-term care are quite elderly. But you don’t end up in long-term care just because you’re old. We know that 70 percent of people in long-term care have some form of dementia or other cognitive issue. The rest need help with some kind of physical ailment. Almost everyone who lives in long-term care is disabled, or perceived by the government to be disabled. And when Jonathan Marchand sees how differently the pandemic has affected people in long-term care, compared to the rest of the population, he sees it as a legacy of generations of discrimination against disabled people.   [MARCHAND] On one side you got the old and the disabled, living in long-term care facilities, dying by the thousands. And on the other side, you got the real citizens who contribute to society.   [ARSHY] And the institutionalization of disabled people has a long and dark history in this country. And it goes back all the way to the founding of the nation. The first institutions for disabled people in this country were founded shortly after confederation.   [DUSTIN GALER] These institutions, they were all part of the state-building process in the late 19th century, just as much, I think, as residential schools.   [ARSHY] That’s Dustin Galer, a historian and the author of Working Towards Equity, which covers the Canadian disability movement.    [MADELINE BURGHART] The first total institution for people with intellectual disabilities was opened in Canada, just outside Orillia, in Ontario, on the shores of Lake Simcoe in 1876. And the first name of that institution was the Orillia Asylum for Idiots. So that really demonstrates the kind of language that was used at the time. My name is Madeleine Burckhardt and I am an instructor in the School of Health Policy and Management at York University.    [ARSHY] The initial idea was to provide rehabilitation and training. And then people would then be sent back to their communities.    [BURGHART] Well, that sort of rehabilitative model shifted pretty quickly into what I call an “incarcerative model,” where people were not really receiving education or training very much. It was more just being housed.   [ARSHY] From the beginning, these places were overcrowded and underfunded. Abuse of all kinds was rampant. And people who were seen as deviant or non-conforming often ended up being housed there. Children from poor families, or women who were deemed unfit to raise a family, all ended up in these institutions.   [GALER] And particularly, they would treat adults with physical and intellectual disabilities and mental health issues with whatever the latest treatments were at the time. And of course, this often involved hard physical labor, isolation, electroshock therapy, all under the supervision of doctors.  And often, you know, it’s important to remember that disabled people were deposited here by families, often under the sincere belief they would be better off.    [ARSHY] By the turn of the century, a new perfidious idea was making its way through the Canadian medical and political establishments — eugenics.   [BURGHART] This was really being promoted as sound, good health policy. You know, that this was going to be good for the general population if we could rid the population of people who were considered feeble minded. And this was absolutely believed and absolutely promoted and institutions were a tool for that movement.   [ARSHY] The epicentre of this movement was Alberta. In 1928 the Albertan government passed the Sexual Sterilization Act. Children with disabilities in these institutions were amongst the many undesirables who were forcibly sterilized, usually without their knowledge. The law wasn’t repealed until 1972. But by the middle of the century, the tide had begun to turn against routine institutionalization.  Journalist Pierre Berton exposed the conditions inside the Orillia asylum in 1960.    [GALER] And people were just horrified by what they saw. People were just flocking around in diapers, and no, no semblance of care being had. Or, you know, overmedication, these types of things. And this actually helped start a movement to deinstitutionalize people with physical disability, intellectual developmental disabilities, and mental health issues.   [ARSHY] Mothers of disabled children pushed back against efforts to have their kids institutionalized. They argued that they should be supported at home, instead. And the arguments resonated. The institutions began to close.    [GALER] But the problem with the response to deinstitutionalization was that governments… They didn’t really commit enough resources to build out an adequate network of community services. So, a lot of the time, it was… It was almost seen as a cost-saving measure, like this movement to deinstitutionalize people kind of overlapped with the desire to reduce budgets.    [ARSHY] Many disabled Canadians ended up homeless, living in shelters, in chronic care in hospitals, and of course, in nursing homes in long-term care. But it was around this time that disabled Canadians found new avenues to advocate for themselves. Disability was becoming an identity.   [GALER] So there were different disability movements. But a big one that emerged in the 70s and 80s were consumer activists. So, these are people with disabilities, themselves, pushing back, demanding greater rights to protect them.    [ARSHY] And an important part of these movements was confronting the caregivers who once claimed to speak for disabled people. Disabled people made it clear that they are their own best advocates. By the 2000s, disability rights and liberation movements were widespread. But many disabled Canadians continue to live in institutions that don’t serve their needs, where they’re abused and neglected. The Huronia Regional Centre, first known as the Orillia Asylum for Idiots, only closed down in 2009.   PART TWO [ARSHY] So what makes long-term care different from these earlier institutions for disabled people? I think if we’re being honest, it’s not much. And a major reason why is that there are specific processes that happen when you’re institutionalized. By their very nature, they’re dehumanizing. Let’s start out with how you end up in long-term care.   [SHARON RILEY] We have seen surveys coming out of provinces like B.C. where advocates have surveyed nursing home residents and found that at least half of them say they don’t want to be there.   [ARSHY] That’s Sharon J. Riley, an investigative journalist, and a longtime friend of the show. She recently tackled this very question in a big feature she wrote and reported for The Walrus. There are some people who plan for long-term care, but that’s not the majority. For a lot of the people who are deemed to have dementia or another intellectual disability, it starts with a capacity test.   [RILEY] A capacity test is a tool that’s used to assess someone’s mental capacity. It’s important to note that mental capacity is not about how smart you are. It’s about your ability to make decisions, taking into account the implications of those decisions. When an assessor who’s measuring capacity is trying to make that determination, they can ask you all sorts of questions. They can ask you questions about your living situation. So say, “What would happen to you if you fell at home,” or ask you questions about how you pay your bills. “What would happen if you continue living at home?” “What would happen if you moved to a nursing home,” and sort of assess whether you understand the implications of each of those things. Not whether you want it or not, but whether you understand what it means. But an assessor can also look at cognitive abilities as sort of a way to feed into this determination. And that’s where things get a little bit tricky. ‘Cause there are many different cognitive tests out there. They can ask you kind of jarring and weird questions. Being asked, “Can you draw a clock face? Can you name as many words as you can think of that start with the letter ‘F’?” Can you say ifs, ands and buts three times and given a time limit on each of these things? So you might be very flustered. You might have 30 seconds to name as many words as you can think of that start with the letter F. Also, another test that can feed into a capacity assessment, though it is not measuring capacity itself, is measuring depression. So you might be asked questions like, “Do you feel pretty worthless right now, or is it wonderful to be alive?” These are, like, word for word questions on a depression scale assessment. And those answers can also feed into an assessor’s determination of whether or not you have mental capacity.   [ARSHY] These tests often last only 30 or 45 minutes. If the assessor decides that you don’t have the capacity to make your own decisions, from that one interview, the state can take over life. You can lose control of your finances, and they can force you to leave your home and go live in long-term care.   [RILEY] So the implications of the capacity tests can be enormous. Even though it can be short and the questions can seem strange, in the end, the assessor can decide to take away some pretty huge liberties that we enjoy as adults.    [ARSHY] For the majority of Canadians, there are few ways to fight the decision. Ontario is the only province that even has an appeals process. But that’s not the only way that people end up in the system. Many, like Jonathan Marchand, are forced into it because the government says that there’s nowhere else they can get the level of care that they require.   [JONATHAN MARCHAND] They could not give me enough hours of assistance the whole day. There are hard caps on the hours that you can get in Quebec. It’s around 44 hours a week and I needed 168 hours a week.   [ARSHY] Or take the case of Cayleah Lamarsh.    [KENNETH JACKSON]  He’s a nice person to speak to. She’s very helpful. Always available.   [ARSHY] That’s Kenneth Jackson, a reporter with Aboriginal People’s Television Network. He’s been reporting on Cayleah’s situation from the beginning of the pandemic. Cayleah was abandoned by her mother at a very young age. By four, she was a Crown ward. And by eight she was in a group home.     [JACKSON] So you can just imagine at that age, eight. By then, that’s almost pure hell. For the most part, right? Like, that’s a lot of damage, you know, on a young developing mind.   [ARSHY] She was abused in various homes and, by 18, she aged out of the system. And by 21, she was homeless.   [JACKSON] She was on a Toronto bus. The freak accident, and she got flung forward and smashed her neck or shoulder off one of the poles, and she’s paralyzed from the waist down. And there was nowhere for her to go. So she went into a long-term care home. And she knows that she doesn’t want to be there. She’s been trying to get out. Even the doctor that first saw her says, “You don’t belong here. We can’t care for you. There’s nothing here for you.”   [ARSHY] Cayleah doesn’t need care 24/7. She just needs some help with things like getting out of bed or bathing. But long-term care was the only option presented to her.   [JACKSON] Caylee was abandoned in a child welfare system. Now she’s abandoned in a long-term care system. The long-term care one, that’s for life. She has a life sentence in that home.   [ARSHY] And Jonathan Marchand says that, once you’re inside, you’re simply not treated like a person.   [MARCHAND] Basically, you’ll lose your citizenship when you enter a long-term care facility. You become an object that we warehouse away. An object of care and profit.   [ARSHY] You become an object of care. Something to be managed. Something that has to fit into a schedule and a routine. And when Jonathan describes what that’s like, it sounds exactly like what people with intellectual disabilities had to face in places like the Orillia Asylum for Idiots.  Here’s Madeline Burkhart again, talking about what life in that institution was like decades ago.    [BURKHART] There’s so many thousands of little decisions that we make for ourselves every day that we’re just taking away from people. So there’s that whole dehumanization, as well. Like even just deciding what clothes to wear, or when to turn the lights off, when to get up in the morning, when to go to bed at night. What you are going to eat, how long you would take to eat your meal… All those things were controlled. All aspects of your daily life was organized and imposed from above, from the administration of the institution.   [ARSHY] And here’s Jonathan Marchand talking about what life is like today in long-term care.   [MARCHAND] It’s incredibly difficult because when you enter, you lose control over your life in all aspects. You don’t have any choice over who touches your body to provide you assistance. You’ve got no choice or control. At what time are you gonna get up? When you go to bed, what time are you gonna eat? What you gonna eat? Um, what time are you gonna go to the toilet? Basically everything is managed for you.   [ARSHY] And in these institutions, both past and present, the residents or patients or inmates, are forced to conform to the needs of the staff.   [BURKHART] And you can understand it when you think about… If there were hundreds, sometimes thousands of people living together, you can’t organize that many people in a way that allows individual choice and freedom. And so the administrative needs of the institution always superseded the individual desires and needs of the residents.    [MARCHAND] Whenever there’s a conflict between your well-being, your rights and the rules, the law and the way the services are organized, it’s, it’s always the latter that wins.  In an institution, you need to keep the peace here and you need to stay in your lane, to stay quiet. They want you to be obedient. They want you to be kind at all times. You got to be a good cripple, right? You got to do what they say.   [ARSHY] If you’re not obedient, if you don’t stay quiet, you can be restrained. In Ontario in 2010, 16 per cent of long-term care residents were physically restrained on a daily basis. That number is now down to around four per cent.  Often, this is done because people are violent or a danger to themselves. But it’s still undeniably inhumane.  And then there’s the use of chemical restraints. Long-term care residents are often given anti-psychotic drugs, even if they have not been diagnosed with psychosis.   [RILEY] You can imagine that an antipsychotic drug has a lot of the same side-effects symptoms of waning mental capacity. So if you administered an antipsychotic drug, you can become very lethargic, you can become very confused. You can seem less interested in life in general. It’s… It’s a pacifier, essentially. It might make it much more difficult for you to manage your daily tasks.  So even if you went into a nursing home with mental capacity that was quite robust, if you were making a big fuss, if you’re complaining all the time and becoming a real disruption to all the other residents, it’s not out of the realm of possibility that you might be administered antipsychotic drugs just to calm you down, which could then further the case against you that your mental capacity is waning.   [ARSHY] A 2011 investigation by the BC government found that over 50 per cent of people in long-term care were on some kind of anti-psychotic medication. Many of them did not have any kind of documented diagnosis for psychosis. It’s true that historically, abusers have been attracted to the power that working in these kinds of institutions gives them. But that’s not the majority of people.   [BURGHART] We are horrified when we hear stories about staff doing terrible things in institutions, but we don’t make that easy.   [ARSHY] The systems that are set up almost demand that the residents are treated in these awful ways.    [BURGHART] It’s just harder, plain and simple, to be kind when you are looking after that many people and being asked to help 10 people to have a bath, or asked to help 20 people to eat their dinner, or whatever it may be, it takes away the opportunity for–for real care, I think. Institutions do not make it easy for people to be really kind and provide the care that we all are entitled to.    [ARSHY] If you’re in an institution, you lose control over almost everything.    [MARCHAND] And it goes even further than that. My experience is that they even want to control the way you die,   [ARSHY] At one point, when Jonathan was in the hospital, he wanted to just go home, whether or not he got the care he needed, even if it put his life in danger. But Jonathan was told that he couldn’t.   [MARCHAND] But he told me, “No, it’s dangerous. You can’t do that. We need to ensure your safety and we’ll go to court to stop you from going out.”   [ARSHY] This was coming from the same people who were pressuring him to end his own life. But they wouldn’t let him choose how.   [MARCHAND] So even in death, they want to control the way you die. So that’s… That’s messed up. You become an object to them that they have to keep track of. And an object doesn’t have any kind of rights whatsoever. You got to be this passive thing. I think it’s incredibly dehumanizing, and I don’t want to be part of that system anymore. I want to get out. I want to be able to live my own life according to my own values and be able to contribute to society like everyone else. I don’t see how anyone can live in a place like that. Frankly, I think humans are not made to live inside institutions.   PART THREE [ARSHY] In his first few years in long-term care, Jonathan Marchand considered acting on the advice so many medical professionals were giving him. Euthanasia.    [MARCHAND] Most people were pushing me toward euthanasia. You know, that conversation was coming up over and over again. So I started to get really depressed at that time. Um, and I was seeking, uh, ways, uh, to end my life. So, I was in this mindset that there was so way out, and death was my escape. But something happened. Eventually on the Internet, I met on Facebook… I met with other people with disabilities outside of, uh, Quebec. In Canada, in the United States, in Europe and in Australia, who had needs similar to mine, who were using ventilators or needed 24 hour assistance. And they had that assistance in their own home. And they were working. They had partners. They are… They had a normal life. So I was like, what the hell? Why can’t I get that in Quebec?   [ARSHY] Before long-term care, Jonathan had never been an activist. He didn’t think much about disability rights or liberation before he was trapped in this home. Once he started to connect with other people like him around the world, Jonathan realized he wasn’t the problem. His disability didn’t mean he had to live in long-term care. There are lots of people, just like him, living in their communities, having a normal life. And he saw how other people had gotten those changes made. Disabled people themselves have to demand it.    [MARCHAND] That’s the key. Because when you rely on third parties to do the work for you, oftentimes you end up with, uh, crumbs or, you know, things that, um, don’t respect your rights and don’t lead to your emancipation.   [ARSHY] He co-founded a cooperative with some friends to lobby the Quebec government to provide funding so people like him could live at home. And he argues that it’s actually cheaper to do that, than house people in long-term care.   [MARCHAND] There are no economic arguments against that proposition. Actually, you are throwing money away by continuing to invest in institutions.   [ARSHY] Throughout this season of Commons, we’ve been telling you about how underfunded and understaffed the long-term care system is. How we need higher standards of care, more resources, better training. But Jonathan thinks all of that is bullshit.    [MARCHAND] I think long-term care facilities should not exist. Um… It’s, um, something that’s been put in place to exclude and eliminate people with disabilities from society.   [ARSHY] Jonathan is in favour of abolition.   [MARCHAND] The idea that we can have good institutions is false. These places are designed to deprive the, the freedom of people with disabilities and the elderly. It’s incompatible with life.   [ARSHY] Jonathan believes that all institutions, whether it was an asylum 150 years ago, or long-term care today, are dehumanizing by their very nature, that more money isn’t going to fix this, that reform isn’t going make people’s lives better. Instead, we need to burn it all down. Let disabled people live in their own homes. Give them the money they need to hire caregivers that will come to them. Jonathan’s still fighting to get out of long-term care. He’s done dozens of interviews with the press. He’s tried to reach out to Quebec’s premier, François Legault, but all his calls have gone unanswered. And even if he does get out, he’s worried.    [MARCHAND] I’ve been inside for 10 years now and I’m starting to forget how it’s like to be living in the community like everyone else. When you enter a Long-Term Care Facility, it’s like your world shrinks from day-to-day, week-to-week, month-to-month, year-to-year, until your world becomes your–your room or the, the hallway, or the staff that surrounds you. If  I think too much about the future, when I have no future right now, I mean, it’s incredibly demoralizing. It’s, uh.. It can even be dangerous because, when you suffer a setback, then you can lose hope. And so I try to live day-by-day as much as I can. But I want to expand my world.   OUTRO For a century and a half, we have put disabled people in institutions against their will. Long-term care is just the latest iteration of that. For Jonathan, it all comes down to discrimination.   [MARCHAND] It’s a big cultural and systemic issue. People with disabilities are discriminated against every day, at all levels. And it goes even as far as to the idea that our lives are not worth treating and it’s better to be dead than to be disabled.   [ARSHY] Even as the pandemic has killed thousands of people in long-term care, he doesn’t expect things to get better.    [MARCHAND] So, there’s no political will that I see to really change things. And that’s what makes me very angry. There are solutions. We can do better. But it’s off the table, even now with thousands of people dead. What has been announced to change things, turn things around? Next to nothing. And if we don’t do something collectedly, they’re going to get away with it.   [ARSHY] The debate over the future of long-term care is just beginning. But maybe it shouldn’t have any future at all.    END CREDITS That’s your episode of Commons for the week. If you want to support us, click on the link in your show notes or go to commonspodcast.com This episode relied on work done by Sharon Riley at The Walrus, Kenneth Jackson at APTN, Dustin Galer, Madeline Burghardt, the team behind Hope is Not a Plan, and many, many others I want to give a special shout-out to Aimee Louw at The Walrus for all of her help.  If you want to get in touch with us, you can tweet at us at @COMMONSpod. You can also email me, Arshy@canadalandshow.com This episode was produced by me and Jordan Cornish, with additional production by Tiffany Lam. Our managing editor is Andréa Schmidt. And our music is by Nathan Burley.  If you like what we do, please help us make this show. Click on the link in your show notes or go to commonspodcast.com   I think you should be getting our newsletterGet a weekly note about our top stories.This is a good thing that we do. 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September 12, 2017
79
Ashton, Angus & Singh – Oh My!
Support us at commonspodcast.com Jonathan Marchand is one of the thousands of young disabled people living in long-term care. But Marchand doesn’t want to fix the system. He doesn’t think it can be reformed. Marchand is an abolitionist. For a century and a half, Canada has hidden away disabled people in institutions where they were neglected and abused. Is long-term care just the latest incarnation of this dark history?   COMMONS: Pandemic is currently focusing on how COVID-19 is affecting long-term care in Canada. Featured in this episode: Jonathan Marchand, Sharon J. Riley (The Walrus), Kenneth Jackson (APTN News), Madeline Burghardt, Dustin Galer To learn more: “When Is a Senior No Longer Capable of Making Their Own Decisions?” by Sharon J. Riley in The Walrus “‘Sitting duck’: Disabled woman, 27, lives in Toronto seniors home with COVID-19 outbreak” by Kenneth Jackson in APTN News Working Towards Equity: Disability Rights Activism and Employment in Late Twentieth-Century by Dustin Galer Broken: Institutions, Families, and the Construction of Intellectual Disability by Madeline Burghardt  Hope Is Not a Plan   This episode is sponsored by Freshbooks Additional music from Audio Network   TRANSCRIPT:    EPISODE 10 – “BURN IT DOWN”   COLD OPEN [ARSHY] Until 2010, Jonathan Marchand had a pretty normal life. He has muscular dystrophy, but that hadn’t been too much of an impediment for him.     [JONATHAN MARCHAND] I always had a disability. It’s a degenerative disability, so I walked until the age of 15. After that, I started to use a wheelchair and I didn’t need much help in my daily living.   [ARSHY] Jonathan’s a senior network engineer. He’s worked for different internet service providers in Quebec and in Australia. He has a partner he’s been with now for 18 years.   [MARCHAND] I was working. I had an active normal life, I had lots of projects for the future.   [ARSHY] And that’s how Jonathan expected things to go. But he didn’t really understand what his condition could do to him.   [MARCHAND] I was ill-advised by my doctors as well. I didn’t know what was in store for me. No one neither ever told me. So I was pretty ignorant about what could happen.   [ARSHY] And in 2010, it happened. He wasn’t feeling well, so he went to see a doctor. They discovered he had a bad case of pneumonia. Jonathan got sent to the ICU.   [MARCHAND] In the ICU there’s two weeks I don’t remember what happened.   [ARSHY] All he remembers are the terrifying hallucinations he experienced.   [MARCHAND] The only recollections of those two weeks are hallucinations, where people are torturing me, basically setting on fires, stabbing me, and, you know, all kinds of horrific experiences like that.   [ARSHY] When he finally came to, the doctors spoke to him.   [MARCHAND] And what they told me is that I would never come out of the– of the hospital because I was dependent now on a ventilator to breathe and there was no option to go back home.   [ARSHY] It was devastating news. And according to Jonathan, his doctors said that the best thing for him would be to refuse further treatment, and that would mean certain death.   [MARCHAND] And what they were pressuring me, pressuring me to accept these euthanasia, three different doctors had that talk with me and tried to pressure me into accepting that. And I spent a few weeks just looking at the ceiling, trying to work out what I was going to do, if I was going to indeed accept to, to be euthanized. Eventually, I refused because I wasn’t ready to die.    [ARSHY] Jonathan wanted to live. He had adapted to major life changes before. He could make his way through this, too. And for two years he tried to get out of the hospital and back to his own home. But the government insisted that his care needs were too high. They weren’t willing to pay for it. So Jonathan had to take the only option that was left on the table. At the age of 35, Jonathan Marchand moved into a long-term care home. I’m Arshy Mann and from Canadaland, this is Commons.   PART ONE [ARSHY] From the minute he moved into his long-term care home outside of Quebec City, Jonathan Marchand knew he didn’t belong there.   [MARCHAND] The first time I entered here, I was shocked. Really shocked. I got really depressed when I entered. And I stayed in my room for about three years and a half. I never went out of my room. I just stayed inside.    [ARSHY] Jonathan was promised that the CHSLD would be a place where he would have more autonomy and personal space. But he says it was just another hospital.  Many people would be surprised to find out that younger people like Jonathan Marchand end up in long-term care homes. We think of them as seniors homes, places where elderly people go at the end of their lives. But that’s the wrong way to look at it. These aren’t old age homes. These are places that house disabled people. They’re asylums. Now, that might seem like an odd claim because, of course, the vast majority of people who live in long-term care are quite elderly. But you don’t end up in long-term care just because you’re old. We know that 70 percent of people in long-term care have some form of dementia or other cognitive issue. The rest need help with some kind of physical ailment. Almost everyone who lives in long-term care is disabled, or perceived by the government to be disabled. And when Jonathan Marchand sees how differently the pandemic has affected people in long-term care, compared to the rest of the population, he sees it as a legacy of generations of discrimination against disabled people.   [MARCHAND] On one side you got the old and the disabled, living in long-term care facilities, dying by the thousands. And on the other side, you got the real citizens who contribute to society.   [ARSHY] And the institutionalization of disabled people has a long and dark history in this country. And it goes back all the way to the founding of the nation. The first institutions for disabled people in this country were founded shortly after confederation.   [DUSTIN GALER] These institutions, they were all part of the state-building process in the late 19th century, just as much, I think, as residential schools.   [ARSHY] That’s Dustin Galer, a historian and the author of Working Towards Equity, which covers the Canadian disability movement.    [MADELINE BURGHART] The first total institution for people with intellectual disabilities was opened in Canada, just outside Orillia, in Ontario, on the shores of Lake Simcoe in 1876. And the first name of that institution was the Orillia Asylum for Idiots. So that really demonstrates the kind of language that was used at the time. My name is Madeleine Burckhardt and I am an instructor in the School of Health Policy and Management at York University.    [ARSHY] The initial idea was to provide rehabilitation and training. And then people would then be sent back to their communities.    [BURGHART] Well, that sort of rehabilitative model shifted pretty quickly into what I call an “incarcerative model,” where people were not really receiving education or training very much. It was more just being housed.   [ARSHY] From the beginning, these places were overcrowded and underfunded. Abuse of all kinds was rampant. And people who were seen as deviant or non-conforming often ended up being housed there. Children from poor families, or women who were deemed unfit to raise a family, all ended up in these institutions.   [GALER] And particularly, they would treat adults with physical and intellectual disabilities and mental health issues with whatever the latest treatments were at the time. And of course, this often involved hard physical labor, isolation, electroshock therapy, all under the supervision of doctors.  And often, you know, it’s important to remember that disabled people were deposited here by families, often under the sincere belief they would be better off.    [ARSHY] By the turn of the century, a new perfidious idea was making its way through the Canadian medical and political establishments — eugenics.   [BURGHART] This was really being promoted as sound, good health policy. You know, that this was going to be good for the general population if we could rid the population of people who were considered feeble minded. And this was absolutely believed and absolutely promoted and institutions were a tool for that movement.   [ARSHY] The epicentre of this movement was Alberta. In 1928 the Albertan government passed the Sexual Sterilization Act. Children with disabilities in these institutions were amongst the many undesirables who were forcibly sterilized, usually without their knowledge. The law wasn’t repealed until 1972. But by the middle of the century, the tide had begun to turn against routine institutionalization.  Journalist Pierre Berton exposed the conditions inside the Orillia asylum in 1960.    [GALER] And people were just horrified by what they saw. People were just flocking around in diapers, and no, no semblance of care being had. Or, you know, overmedication, these types of things. And this actually helped start a movement to deinstitutionalize people with physical disability, intellectual developmental disabilities, and mental health issues.   [ARSHY] Mothers of disabled children pushed back against efforts to have their kids institutionalized. They argued that they should be supported at home, instead. And the arguments resonated. The institutions began to close.    [GALER] But the problem with the response to deinstitutionalization was that governments… They didn’t really commit enough resources to build out an adequate network of community services. So, a lot of the time, it was… It was almost seen as a cost-saving measure, like this movement to deinstitutionalize people kind of overlapped with the desire to reduce budgets.    [ARSHY] Many disabled Canadians ended up homeless, living in shelters, in chronic care in hospitals, and of course, in nursing homes in long-term care. But it was around this time that disabled Canadians found new avenues to advocate for themselves. Disability was becoming an identity.   [GALER] So there were different disability movements. But a big one that emerged in the 70s and 80s were consumer activists. So, these are people with disabilities, themselves, pushing back, demanding greater rights to protect them.    [ARSHY] And an important part of these movements was confronting the caregivers who once claimed to speak for disabled people. Disabled people made it clear that they are their own best advocates. By the 2000s, disability rights and liberation movements were widespread. But many disabled Canadians continue to live in institutions that don’t serve their needs, where they’re abused and neglected. The Huronia Regional Centre, first known as the Orillia Asylum for Idiots, only closed down in 2009.   PART TWO [ARSHY] So what makes long-term care different from these earlier institutions for disabled people? I think if we’re being honest, it’s not much. And a major reason why is that there are specific processes that happen when you’re institutionalized. By their very nature, they’re dehumanizing. Let’s start out with how you end up in long-term care.   [SHARON RILEY] We have seen surveys coming out of provinces like B.C. where advocates have surveyed nursing home residents and found that at least half of them say they don’t want to be there.   [ARSHY] That’s Sharon J. Riley, an investigative journalist, and a longtime friend of the show. She recently tackled this very question in a big feature she wrote and reported for The Walrus. There are some people who plan for long-term care, but that’s not the majority. For a lot of the people who are deemed to have dementia or another intellectual disability, it starts with a capacity test.   [RILEY] A capacity test is a tool that’s used to assess someone’s mental capacity. It’s important to note that mental capacity is not about how smart you are. It’s about your ability to make decisions, taking into account the implications of those decisions. When an assessor who’s measuring capacity is trying to make that determination, they can ask you all sorts of questions. They can ask you questions about your living situation. So say, “What would happen to you if you fell at home,” or ask you questions about how you pay your bills. “What would happen if you continue living at home?” “What would happen if you moved to a nursing home,” and sort of assess whether you understand the implications of each of those things. Not whether you want it or not, but whether you understand what it means. But an assessor can also look at cognitive abilities as sort of a way to feed into this determination. And that’s where things get a little bit tricky. ‘Cause there are many different cognitive tests out there. They can ask you kind of jarring and weird questions. Being asked, “Can you draw a clock face? Can you name as many words as you can think of that start with the letter ‘F’?” Can you say ifs, ands and buts three times and given a time limit on each of these things? So you might be very flustered. You might have 30 seconds to name as many words as you can think of that start with the letter F. Also, another test that can feed into a capacity assessment, though it is not measuring capacity itself, is measuring depression. So you might be asked questions like, “Do you feel pretty worthless right now, or is it wonderful to be alive?” These are, like, word for word questions on a depression scale assessment. And those answers can also feed into an assessor’s determination of whether or not you have mental capacity.   [ARSHY] These tests often last only 30 or 45 minutes. If the assessor decides that you don’t have the capacity to make your own decisions, from that one interview, the state can take over life. You can lose control of your finances, and they can force you to leave your home and go live in long-term care.   [RILEY] So the implications of the capacity tests can be enormous. Even though it can be short and the questions can seem strange, in the end, the assessor can decide to take away some pretty huge liberties that we enjoy as adults.    [ARSHY] For the majority of Canadians, there are few ways to fight the decision. Ontario is the only province that even has an appeals process. But that’s not the only way that people end up in the system. Many, like Jonathan Marchand, are forced into it because the government says that there’s nowhere else they can get the level of care that they require.   [JONATHAN MARCHAND] They could not give me enough hours of assistance the whole day. There are hard caps on the hours that you can get in Quebec. It’s around 44 hours a week and I needed 168 hours a week.   [ARSHY] Or take the case of Cayleah Lamarsh.    [KENNETH JACKSON]  He’s a nice person to speak to. She’s very helpful. Always available.   [ARSHY] That’s Kenneth Jackson, a reporter with Aboriginal People’s Television Network. He’s been reporting on Cayleah’s situation from the beginning of the pandemic. Cayleah was abandoned by her mother at a very young age. By four, she was a Crown ward. And by eight she was in a group home.     [JACKSON] So you can just imagine at that age, eight. By then, that’s almost pure hell. For the most part, right? Like, that’s a lot of damage, you know, on a young developing mind.   [ARSHY] She was abused in various homes and, by 18, she aged out of the system. And by 21, she was homeless.   [JACKSON] She was on a Toronto bus. The freak accident, and she got flung forward and smashed her neck or shoulder off one of the poles, and she’s paralyzed from the waist down. And there was nowhere for her to go. So she went into a long-term care home. And she knows that she doesn’t want to be there. She’s been trying to get out. Even the doctor that first saw her says, “You don’t belong here. We can’t care for you. There’s nothing here for you.”   [ARSHY] Cayleah doesn’t need care 24/7. She just needs some help with things like getting out of bed or bathing. But long-term care was the only option presented to her.   [JACKSON] Caylee was abandoned in a child welfare system. Now she’s abandoned in a long-term care system. The long-term care one, that’s for life. She has a life sentence in that home.   [ARSHY] And Jonathan Marchand says that, once you’re inside, you’re simply not treated like a person.   [MARCHAND] Basically, you’ll lose your citizenship when you enter a long-term care facility. You become an object that we warehouse away. An object of care and profit.   [ARSHY] You become an object of care. Something to be managed. Something that has to fit into a schedule and a routine. And when Jonathan describes what that’s like, it sounds exactly like what people with intellectual disabilities had to face in places like the Orillia Asylum for Idiots.  Here’s Madeline Burkhart again, talking about what life in that institution was like decades ago.    [BURKHART] There’s so many thousands of little decisions that we make for ourselves every day that we’re just taking away from people. So there’s that whole dehumanization, as well. Like even just deciding what clothes to wear, or when to turn the lights off, when to get up in the morning, when to go to bed at night. What you are going to eat, how long you would take to eat your meal… All those things were controlled. All aspects of your daily life was organized and imposed from above, from the administration of the institution.   [ARSHY] And here’s Jonathan Marchand talking about what life is like today in long-term care.   [MARCHAND] It’s incredibly difficult because when you enter, you lose control over your life in all aspects. You don’t have any choice over who touches your body to provide you assistance. You’ve got no choice or control. At what time are you gonna get up? When you go to bed, what time are you gonna eat? What you gonna eat? Um, what time are you gonna go to the toilet? Basically everything is managed for you.   [ARSHY] And in these institutions, both past and present, the residents or patients or inmates, are forced to conform to the needs of the staff.   [BURKHART] And you can understand it when you think about… If there were hundreds, sometimes thousands of people living together, you can’t organize that many people in a way that allows individual choice and freedom. And so the administrative needs of the institution always superseded the individual desires and needs of the residents.    [MARCHAND] Whenever there’s a conflict between your well-being, your rights and the rules, the law and the way the services are organized, it’s, it’s always the latter that wins.  In an institution, you need to keep the peace here and you need to stay in your lane, to stay quiet. They want you to be obedient. They want you to be kind at all times. You got to be a good cripple, right? You got to do what they say.   [ARSHY] If you’re not obedient, if you don’t stay quiet, you can be restrained. In Ontario in 2010, 16 per cent of long-term care residents were physically restrained on a daily basis. That number is now down to around four per cent.  Often, this is done because people are violent or a danger to themselves. But it’s still undeniably inhumane.  And then there’s the use of chemical restraints. Long-term care residents are often given anti-psychotic drugs, even if they have not been diagnosed with psychosis.   [RILEY] You can imagine that an antipsychotic drug has a lot of the same side-effects symptoms of waning mental capacity. So if you administered an antipsychotic drug, you can become very lethargic, you can become very confused. You can seem less interested in life in general. It’s… It’s a pacifier, essentially. It might make it much more difficult for you to manage your daily tasks.  So even if you went into a nursing home with mental capacity that was quite robust, if you were making a big fuss, if you’re complaining all the time and becoming a real disruption to all the other residents, it’s not out of the realm of possibility that you might be administered antipsychotic drugs just to calm you down, which could then further the case against you that your mental capacity is waning.   [ARSHY] A 2011 investigation by the BC government found that over 50 per cent of people in long-term care were on some kind of anti-psychotic medication. Many of them did not have any kind of documented diagnosis for psychosis. It’s true that historically, abusers have been attracted to the power that working in these kinds of institutions gives them. But that’s not the majority of people.   [BURGHART] We are horrified when we hear stories about staff doing terrible things in institutions, but we don’t make that easy.   [ARSHY] The systems that are set up almost demand that the residents are treated in these awful ways.    [BURGHART] It’s just harder, plain and simple, to be kind when you are looking after that many people and being asked to help 10 people to have a bath, or asked to help 20 people to eat their dinner, or whatever it may be, it takes away the opportunity for–for real care, I think. Institutions do not make it easy for people to be really kind and provide the care that we all are entitled to.    [ARSHY] If you’re in an institution, you lose control over almost everything.    [MARCHAND] And it goes even further than that. My experience is that they even want to control the way you die,   [ARSHY] At one point, when Jonathan was in the hospital, he wanted to just go home, whether or not he got the care he needed, even if it put his life in danger. But Jonathan was told that he couldn’t.   [MARCHAND] But he told me, “No, it’s dangerous. You can’t do that. We need to ensure your safety and we’ll go to court to stop you from going out.”   [ARSHY] This was coming from the same people who were pressuring him to end his own life. But they wouldn’t let him choose how.   [MARCHAND] So even in death, they want to control the way you die. So that’s… That’s messed up. You become an object to them that they have to keep track of. And an object doesn’t have any kind of rights whatsoever. You got to be this passive thing. I think it’s incredibly dehumanizing, and I don’t want to be part of that system anymore. I want to get out. I want to be able to live my own life according to my own values and be able to contribute to society like everyone else. I don’t see how anyone can live in a place like that. Frankly, I think humans are not made to live inside institutions.   PART THREE [ARSHY] In his first few years in long-term care, Jonathan Marchand considered acting on the advice so many medical professionals were giving him. Euthanasia.    [MARCHAND] Most people were pushing me toward euthanasia. You know, that conversation was coming up over and over again. So I started to get really depressed at that time. Um, and I was seeking, uh, ways, uh, to end my life. So, I was in this mindset that there was so way out, and death was my escape. But something happened. Eventually on the Internet, I met on Facebook… I met with other people with disabilities outside of, uh, Quebec. In Canada, in the United States, in Europe and in Australia, who had needs similar to mine, who were using ventilators or needed 24 hour assistance. And they had that assistance in their own home. And they were working. They had partners. They are… They had a normal life. So I was like, what the hell? Why can’t I get that in Quebec?   [ARSHY] Before long-term care, Jonathan had never been an activist. He didn’t think much about disability rights or liberation before he was trapped in this home. Once he started to connect with other people like him around the world, Jonathan realized he wasn’t the problem. His disability didn’t mean he had to live in long-term care. There are lots of people, just like him, living in their communities, having a normal life. And he saw how other people had gotten those changes made. Disabled people themselves have to demand it.    [MARCHAND] That’s the key. Because when you rely on third parties to do the work for you, oftentimes you end up with, uh, crumbs or, you know, things that, um, don’t respect your rights and don’t lead to your emancipation.   [ARSHY] He co-founded a cooperative with some friends to lobby the Quebec government to provide funding so people like him could live at home. And he argues that it’s actually cheaper to do that, than house people in long-term care.   [MARCHAND] There are no economic arguments against that proposition. Actually, you are throwing money away by continuing to invest in institutions.   [ARSHY] Throughout this season of Commons, we’ve been telling you about how underfunded and understaffed the long-term care system is. How we need higher standards of care, more resources, better training. But Jonathan thinks all of that is bullshit.    [MARCHAND] I think long-term care facilities should not exist. Um… It’s, um, something that’s been put in place to exclude and eliminate people with disabilities from society.   [ARSHY] Jonathan is in favour of abolition.   [MARCHAND] The idea that we can have good institutions is false. These places are designed to deprive the, the freedom of people with disabilities and the elderly. It’s incompatible with life.   [ARSHY] Jonathan believes that all institutions, whether it was an asylum 150 years ago, or long-term care today, are dehumanizing by their very nature, that more money isn’t going to fix this, that reform isn’t going make people’s lives better. Instead, we need to burn it all down. Let disabled people live in their own homes. Give them the money they need to hire caregivers that will come to them. Jonathan’s still fighting to get out of long-term care. He’s done dozens of interviews with the press. He’s tried to reach out to Quebec’s premier, François Legault, but all his calls have gone unanswered. And even if he does get out, he’s worried.    [MARCHAND] I’ve been inside for 10 years now and I’m starting to forget how it’s like to be living in the community like everyone else. When you enter a Long-Term Care Facility, it’s like your world shrinks from day-to-day, week-to-week, month-to-month, year-to-year, until your world becomes your–your room or the, the hallway, or the staff that surrounds you. If  I think too much about the future, when I have no future right now, I mean, it’s incredibly demoralizing. It’s, uh.. It can even be dangerous because, when you suffer a setback, then you can lose hope. And so I try to live day-by-day as much as I can. But I want to expand my world.   OUTRO For a century and a half, we have put disabled people in institutions against their will. Long-term care is just the latest iteration of that. For Jonathan, it all comes down to discrimination.   [MARCHAND] It’s a big cultural and systemic issue. People with disabilities are discriminated against every day, at all levels. And it goes even as far as to the idea that our lives are not worth treating and it’s better to be dead than to be disabled.   [ARSHY] Even as the pandemic has killed thousands of people in long-term care, he doesn’t expect things to get better.    [MARCHAND] So, there’s no political will that I see to really change things. And that’s what makes me very angry. There are solutions. We can do better. But it’s off the table, even now with thousands of people dead. What has been announced to change things, turn things around? Next to nothing. And if we don’t do something collectedly, they’re going to get away with it.   [ARSHY] The debate over the future of long-term care is just beginning. But maybe it shouldn’t have any future at all.    END CREDITS That’s your episode of Commons for the week. If you want to support us, click on the link in your show notes or go to commonspodcast.com This episode relied on work done by Sharon Riley at The Walrus, Kenneth Jackson at APTN, Dustin Galer, Madeline Burghardt, the team behind Hope is Not a Plan, and many, many others I want to give a special shout-out to Aimee Louw at The Walrus for all of her help.  If you want to get in touch with us, you can tweet at us at @COMMONSpod. You can also email me, Arshy@canadalandshow.com This episode was produced by me and Jordan Cornish, with additional production by Tiffany Lam. Our managing editor is Andréa Schmidt. And our music is by Nathan Burley.  If you like what we do, please help us make this show. Click on the link in your show notes or go to commonspodcast.com   I think you should be getting our newsletterGet a weekly note about our top stories.This is a good thing that we do. You'll like this.johnsmith@example.comSign UpForm is being submitted, please wait a bit.Please fill out all required fields.
September 26, 2017
80
Why We Need Higher Taxes, A Canadian Mt. Rushmore And A Population Of 100 Million
Support us at commonspodcast.com Jonathan Marchand is one of the thousands of young disabled people living in long-term care. But Marchand doesn’t want to fix the system. He doesn’t think it can be reformed. Marchand is an abolitionist. For a century and a half, Canada has hidden away disabled people in institutions where they were neglected and abused. Is long-term care just the latest incarnation of this dark history?   COMMONS: Pandemic is currently focusing on how COVID-19 is affecting long-term care in Canada. Featured in this episode: Jonathan Marchand, Sharon J. Riley (The Walrus), Kenneth Jackson (APTN News), Madeline Burghardt, Dustin Galer To learn more: “When Is a Senior No Longer Capable of Making Their Own Decisions?” by Sharon J. Riley in The Walrus “‘Sitting duck’: Disabled woman, 27, lives in Toronto seniors home with COVID-19 outbreak” by Kenneth Jackson in APTN News Working Towards Equity: Disability Rights Activism and Employment in Late Twentieth-Century by Dustin Galer Broken: Institutions, Families, and the Construction of Intellectual Disability by Madeline Burghardt  Hope Is Not a Plan   This episode is sponsored by Freshbooks Additional music from Audio Network   TRANSCRIPT:    EPISODE 10 – “BURN IT DOWN”   COLD OPEN [ARSHY] Until 2010, Jonathan Marchand had a pretty normal life. He has muscular dystrophy, but that hadn’t been too much of an impediment for him.     [JONATHAN MARCHAND] I always had a disability. It’s a degenerative disability, so I walked until the age of 15. After that, I started to use a wheelchair and I didn’t need much help in my daily living.   [ARSHY] Jonathan’s a senior network engineer. He’s worked for different internet service providers in Quebec and in Australia. He has a partner he’s been with now for 18 years.   [MARCHAND] I was working. I had an active normal life, I had lots of projects for the future.   [ARSHY] And that’s how Jonathan expected things to go. But he didn’t really understand what his condition could do to him.   [MARCHAND] I was ill-advised by my doctors as well. I didn’t know what was in store for me. No one neither ever told me. So I was pretty ignorant about what could happen.   [ARSHY] And in 2010, it happened. He wasn’t feeling well, so he went to see a doctor. They discovered he had a bad case of pneumonia. Jonathan got sent to the ICU.   [MARCHAND] In the ICU there’s two weeks I don’t remember what happened.   [ARSHY] All he remembers are the terrifying hallucinations he experienced.   [MARCHAND] The only recollections of those two weeks are hallucinations, where people are torturing me, basically setting on fires, stabbing me, and, you know, all kinds of horrific experiences like that.   [ARSHY] When he finally came to, the doctors spoke to him.   [MARCHAND] And what they told me is that I would never come out of the– of the hospital because I was dependent now on a ventilator to breathe and there was no option to go back home.   [ARSHY] It was devastating news. And according to Jonathan, his doctors said that the best thing for him would be to refuse further treatment, and that would mean certain death.   [MARCHAND] And what they were pressuring me, pressuring me to accept these euthanasia, three different doctors had that talk with me and tried to pressure me into accepting that. And I spent a few weeks just looking at the ceiling, trying to work out what I was going to do, if I was going to indeed accept to, to be euthanized. Eventually, I refused because I wasn’t ready to die.    [ARSHY] Jonathan wanted to live. He had adapted to major life changes before. He could make his way through this, too. And for two years he tried to get out of the hospital and back to his own home. But the government insisted that his care needs were too high. They weren’t willing to pay for it. So Jonathan had to take the only option that was left on the table. At the age of 35, Jonathan Marchand moved into a long-term care home. I’m Arshy Mann and from Canadaland, this is Commons.   PART ONE [ARSHY] From the minute he moved into his long-term care home outside of Quebec City, Jonathan Marchand knew he didn’t belong there.   [MARCHAND] The first time I entered here, I was shocked. Really shocked. I got really depressed when I entered. And I stayed in my room for about three years and a half. I never went out of my room. I just stayed inside.    [ARSHY] Jonathan was promised that the CHSLD would be a place where he would have more autonomy and personal space. But he says it was just another hospital.  Many people would be surprised to find out that younger people like Jonathan Marchand end up in long-term care homes. We think of them as seniors homes, places where elderly people go at the end of their lives. But that’s the wrong way to look at it. These aren’t old age homes. These are places that house disabled people. They’re asylums. Now, that might seem like an odd claim because, of course, the vast majority of people who live in long-term care are quite elderly. But you don’t end up in long-term care just because you’re old. We know that 70 percent of people in long-term care have some form of dementia or other cognitive issue. The rest need help with some kind of physical ailment. Almost everyone who lives in long-term care is disabled, or perceived by the government to be disabled. And when Jonathan Marchand sees how differently the pandemic has affected people in long-term care, compared to the rest of the population, he sees it as a legacy of generations of discrimination against disabled people.   [MARCHAND] On one side you got the old and the disabled, living in long-term care facilities, dying by the thousands. And on the other side, you got the real citizens who contribute to society.   [ARSHY] And the institutionalization of disabled people has a long and dark history in this country. And it goes back all the way to the founding of the nation. The first institutions for disabled people in this country were founded shortly after confederation.   [DUSTIN GALER] These institutions, they were all part of the state-building process in the late 19th century, just as much, I think, as residential schools.   [ARSHY] That’s Dustin Galer, a historian and the author of Working Towards Equity, which covers the Canadian disability movement.    [MADELINE BURGHART] The first total institution for people with intellectual disabilities was opened in Canada, just outside Orillia, in Ontario, on the shores of Lake Simcoe in 1876. And the first name of that institution was the Orillia Asylum for Idiots. So that really demonstrates the kind of language that was used at the time. My name is Madeleine Burckhardt and I am an instructor in the School of Health Policy and Management at York University.    [ARSHY] The initial idea was to provide rehabilitation and training. And then people would then be sent back to their communities.    [BURGHART] Well, that sort of rehabilitative model shifted pretty quickly into what I call an “incarcerative model,” where people were not really receiving education or training very much. It was more just being housed.   [ARSHY] From the beginning, these places were overcrowded and underfunded. Abuse of all kinds was rampant. And people who were seen as deviant or non-conforming often ended up being housed there. Children from poor families, or women who were deemed unfit to raise a family, all ended up in these institutions.   [GALER] And particularly, they would treat adults with physical and intellectual disabilities and mental health issues with whatever the latest treatments were at the time. And of course, this often involved hard physical labor, isolation, electroshock therapy, all under the supervision of doctors.  And often, you know, it’s important to remember that disabled people were deposited here by families, often under the sincere belief they would be better off.    [ARSHY] By the turn of the century, a new perfidious idea was making its way through the Canadian medical and political establishments — eugenics.   [BURGHART] This was really being promoted as sound, good health policy. You know, that this was going to be good for the general population if we could rid the population of people who were considered feeble minded. And this was absolutely believed and absolutely promoted and institutions were a tool for that movement.   [ARSHY] The epicentre of this movement was Alberta. In 1928 the Albertan government passed the Sexual Sterilization Act. Children with disabilities in these institutions were amongst the many undesirables who were forcibly sterilized, usually without their knowledge. The law wasn’t repealed until 1972. But by the middle of the century, the tide had begun to turn against routine institutionalization.  Journalist Pierre Berton exposed the conditions inside the Orillia asylum in 1960.    [GALER] And people were just horrified by what they saw. People were just flocking around in diapers, and no, no semblance of care being had. Or, you know, overmedication, these types of things. And this actually helped start a movement to deinstitutionalize people with physical disability, intellectual developmental disabilities, and mental health issues.   [ARSHY] Mothers of disabled children pushed back against efforts to have their kids institutionalized. They argued that they should be supported at home, instead. And the arguments resonated. The institutions began to close.    [GALER] But the problem with the response to deinstitutionalization was that governments… They didn’t really commit enough resources to build out an adequate network of community services. So, a lot of the time, it was… It was almost seen as a cost-saving measure, like this movement to deinstitutionalize people kind of overlapped with the desire to reduce budgets.    [ARSHY] Many disabled Canadians ended up homeless, living in shelters, in chronic care in hospitals, and of course, in nursing homes in long-term care. But it was around this time that disabled Canadians found new avenues to advocate for themselves. Disability was becoming an identity.   [GALER] So there were different disability movements. But a big one that emerged in the 70s and 80s were consumer activists. So, these are people with disabilities, themselves, pushing back, demanding greater rights to protect them.    [ARSHY] And an important part of these movements was confronting the caregivers who once claimed to speak for disabled people. Disabled people made it clear that they are their own best advocates. By the 2000s, disability rights and liberation movements were widespread. But many disabled Canadians continue to live in institutions that don’t serve their needs, where they’re abused and neglected. The Huronia Regional Centre, first known as the Orillia Asylum for Idiots, only closed down in 2009.   PART TWO [ARSHY] So what makes long-term care different from these earlier institutions for disabled people? I think if we’re being honest, it’s not much. And a major reason why is that there are specific processes that happen when you’re institutionalized. By their very nature, they’re dehumanizing. Let’s start out with how you end up in long-term care.   [SHARON RILEY] We have seen surveys coming out of provinces like B.C. where advocates have surveyed nursing home residents and found that at least half of them say they don’t want to be there.   [ARSHY] That’s Sharon J. Riley, an investigative journalist, and a longtime friend of the show. She recently tackled this very question in a big feature she wrote and reported for The Walrus. There are some people who plan for long-term care, but that’s not the majority. For a lot of the people who are deemed to have dementia or another intellectual disability, it starts with a capacity test.   [RILEY] A capacity test is a tool that’s used to assess someone’s mental capacity. It’s important to note that mental capacity is not about how smart you are. It’s about your ability to make decisions, taking into account the implications of those decisions. When an assessor who’s measuring capacity is trying to make that determination, they can ask you all sorts of questions. They can ask you questions about your living situation. So say, “What would happen to you if you fell at home,” or ask you questions about how you pay your bills. “What would happen if you continue living at home?” “What would happen if you moved to a nursing home,” and sort of assess whether you understand the implications of each of those things. Not whether you want it or not, but whether you understand what it means. But an assessor can also look at cognitive abilities as sort of a way to feed into this determination. And that’s where things get a little bit tricky. ‘Cause there are many different cognitive tests out there. They can ask you kind of jarring and weird questions. Being asked, “Can you draw a clock face? Can you name as many words as you can think of that start with the letter ‘F’?” Can you say ifs, ands and buts three times and given a time limit on each of these things? So you might be very flustered. You might have 30 seconds to name as many words as you can think of that start with the letter F. Also, another test that can feed into a capacity assessment, though it is not measuring capacity itself, is measuring depression. So you might be asked questions like, “Do you feel pretty worthless right now, or is it wonderful to be alive?” These are, like, word for word questions on a depression scale assessment. And those answers can also feed into an assessor’s determination of whether or not you have mental capacity.   [ARSHY] These tests often last only 30 or 45 minutes. If the assessor decides that you don’t have the capacity to make your own decisions, from that one interview, the state can take over life. You can lose control of your finances, and they can force you to leave your home and go live in long-term care.   [RILEY] So the implications of the capacity tests can be enormous. Even though it can be short and the questions can seem strange, in the end, the assessor can decide to take away some pretty huge liberties that we enjoy as adults.    [ARSHY] For the majority of Canadians, there are few ways to fight the decision. Ontario is the only province that even has an appeals process. But that’s not the only way that people end up in the system. Many, like Jonathan Marchand, are forced into it because the government says that there’s nowhere else they can get the level of care that they require.   [JONATHAN MARCHAND] They could not give me enough hours of assistance the whole day. There are hard caps on the hours that you can get in Quebec. It’s around 44 hours a week and I needed 168 hours a week.   [ARSHY] Or take the case of Cayleah Lamarsh.    [KENNETH JACKSON]  He’s a nice person to speak to. She’s very helpful. Always available.   [ARSHY] That’s Kenneth Jackson, a reporter with Aboriginal People’s Television Network. He’s been reporting on Cayleah’s situation from the beginning of the pandemic. Cayleah was abandoned by her mother at a very young age. By four, she was a Crown ward. And by eight she was in a group home.     [JACKSON] So you can just imagine at that age, eight. By then, that’s almost pure hell. For the most part, right? Like, that’s a lot of damage, you know, on a young developing mind.   [ARSHY] She was abused in various homes and, by 18, she aged out of the system. And by 21, she was homeless.   [JACKSON] She was on a Toronto bus. The freak accident, and she got flung forward and smashed her neck or shoulder off one of the poles, and she’s paralyzed from the waist down. And there was nowhere for her to go. So she went into a long-term care home. And she knows that she doesn’t want to be there. She’s been trying to get out. Even the doctor that first saw her says, “You don’t belong here. We can’t care for you. There’s nothing here for you.”   [ARSHY] Cayleah doesn’t need care 24/7. She just needs some help with things like getting out of bed or bathing. But long-term care was the only option presented to her.   [JACKSON] Caylee was abandoned in a child welfare system. Now she’s abandoned in a long-term care system. The long-term care one, that’s for life. She has a life sentence in that home.   [ARSHY] And Jonathan Marchand says that, once you’re inside, you’re simply not treated like a person.   [MARCHAND] Basically, you’ll lose your citizenship when you enter a long-term care facility. You become an object that we warehouse away. An object of care and profit.   [ARSHY] You become an object of care. Something to be managed. Something that has to fit into a schedule and a routine. And when Jonathan describes what that’s like, it sounds exactly like what people with intellectual disabilities had to face in places like the Orillia Asylum for Idiots.  Here’s Madeline Burkhart again, talking about what life in that institution was like decades ago.    [BURKHART] There’s so many thousands of little decisions that we make for ourselves every day that we’re just taking away from people. So there’s that whole dehumanization, as well. Like even just deciding what clothes to wear, or when to turn the lights off, when to get up in the morning, when to go to bed at night. What you are going to eat, how long you would take to eat your meal… All those things were controlled. All aspects of your daily life was organized and imposed from above, from the administration of the institution.   [ARSHY] And here’s Jonathan Marchand talking about what life is like today in long-term care.   [MARCHAND] It’s incredibly difficult because when you enter, you lose control over your life in all aspects. You don’t have any choice over who touches your body to provide you assistance. You’ve got no choice or control. At what time are you gonna get up? When you go to bed, what time are you gonna eat? What you gonna eat? Um, what time are you gonna go to the toilet? Basically everything is managed for you.   [ARSHY] And in these institutions, both past and present, the residents or patients or inmates, are forced to conform to the needs of the staff.   [BURKHART] And you can understand it when you think about… If there were hundreds, sometimes thousands of people living together, you can’t organize that many people in a way that allows individual choice and freedom. And so the administrative needs of the institution always superseded the individual desires and needs of the residents.    [MARCHAND] Whenever there’s a conflict between your well-being, your rights and the rules, the law and the way the services are organized, it’s, it’s always the latter that wins.  In an institution, you need to keep the peace here and you need to stay in your lane, to stay quiet. They want you to be obedient. They want you to be kind at all times. You got to be a good cripple, right? You got to do what they say.   [ARSHY] If you’re not obedient, if you don’t stay quiet, you can be restrained. In Ontario in 2010, 16 per cent of long-term care residents were physically restrained on a daily basis. That number is now down to around four per cent.  Often, this is done because people are violent or a danger to themselves. But it’s still undeniably inhumane.  And then there’s the use of chemical restraints. Long-term care residents are often given anti-psychotic drugs, even if they have not been diagnosed with psychosis.   [RILEY] You can imagine that an antipsychotic drug has a lot of the same side-effects symptoms of waning mental capacity. So if you administered an antipsychotic drug, you can become very lethargic, you can become very confused. You can seem less interested in life in general. It’s… It’s a pacifier, essentially. It might make it much more difficult for you to manage your daily tasks.  So even if you went into a nursing home with mental capacity that was quite robust, if you were making a big fuss, if you’re complaining all the time and becoming a real disruption to all the other residents, it’s not out of the realm of possibility that you might be administered antipsychotic drugs just to calm you down, which could then further the case against you that your mental capacity is waning.   [ARSHY] A 2011 investigation by the BC government found that over 50 per cent of people in long-term care were on some kind of anti-psychotic medication. Many of them did not have any kind of documented diagnosis for psychosis. It’s true that historically, abusers have been attracted to the power that working in these kinds of institutions gives them. But that’s not the majority of people.   [BURGHART] We are horrified when we hear stories about staff doing terrible things in institutions, but we don’t make that easy.   [ARSHY] The systems that are set up almost demand that the residents are treated in these awful ways.    [BURGHART] It’s just harder, plain and simple, to be kind when you are looking after that many people and being asked to help 10 people to have a bath, or asked to help 20 people to eat their dinner, or whatever it may be, it takes away the opportunity for–for real care, I think. Institutions do not make it easy for people to be really kind and provide the care that we all are entitled to.    [ARSHY] If you’re in an institution, you lose control over almost everything.    [MARCHAND] And it goes even further than that. My experience is that they even want to control the way you die,   [ARSHY] At one point, when Jonathan was in the hospital, he wanted to just go home, whether or not he got the care he needed, even if it put his life in danger. But Jonathan was told that he couldn’t.   [MARCHAND] But he told me, “No, it’s dangerous. You can’t do that. We need to ensure your safety and we’ll go to court to stop you from going out.”   [ARSHY] This was coming from the same people who were pressuring him to end his own life. But they wouldn’t let him choose how.   [MARCHAND] So even in death, they want to control the way you die. So that’s… That’s messed up. You become an object to them that they have to keep track of. And an object doesn’t have any kind of rights whatsoever. You got to be this passive thing. I think it’s incredibly dehumanizing, and I don’t want to be part of that system anymore. I want to get out. I want to be able to live my own life according to my own values and be able to contribute to society like everyone else. I don’t see how anyone can live in a place like that. Frankly, I think humans are not made to live inside institutions.   PART THREE [ARSHY] In his first few years in long-term care, Jonathan Marchand considered acting on the advice so many medical professionals were giving him. Euthanasia.    [MARCHAND] Most people were pushing me toward euthanasia. You know, that conversation was coming up over and over again. So I started to get really depressed at that time. Um, and I was seeking, uh, ways, uh, to end my life. So, I was in this mindset that there was so way out, and death was my escape. But something happened. Eventually on the Internet, I met on Facebook… I met with other people with disabilities outside of, uh, Quebec. In Canada, in the United States, in Europe and in Australia, who had needs similar to mine, who were using ventilators or needed 24 hour assistance. And they had that assistance in their own home. And they were working. They had partners. They are… They had a normal life. So I was like, what the hell? Why can’t I get that in Quebec?   [ARSHY] Before long-term care, Jonathan had never been an activist. He didn’t think much about disability rights or liberation before he was trapped in this home. Once he started to connect with other people like him around the world, Jonathan realized he wasn’t the problem. His disability didn’t mean he had to live in long-term care. There are lots of people, just like him, living in their communities, having a normal life. And he saw how other people had gotten those changes made. Disabled people themselves have to demand it.    [MARCHAND] That’s the key. Because when you rely on third parties to do the work for you, oftentimes you end up with, uh, crumbs or, you know, things that, um, don’t respect your rights and don’t lead to your emancipation.   [ARSHY] He co-founded a cooperative with some friends to lobby the Quebec government to provide funding so people like him could live at home. And he argues that it’s actually cheaper to do that, than house people in long-term care.   [MARCHAND] There are no economic arguments against that proposition. Actually, you are throwing money away by continuing to invest in institutions.   [ARSHY] Throughout this season of Commons, we’ve been telling you about how underfunded and understaffed the long-term care system is. How we need higher standards of care, more resources, better training. But Jonathan thinks all of that is bullshit.    [MARCHAND] I think long-term care facilities should not exist. Um… It’s, um, something that’s been put in place to exclude and eliminate people with disabilities from society.   [ARSHY] Jonathan is in favour of abolition.   [MARCHAND] The idea that we can have good institutions is false. These places are designed to deprive the, the freedom of people with disabilities and the elderly. It’s incompatible with life.   [ARSHY] Jonathan believes that all institutions, whether it was an asylum 150 years ago, or long-term care today, are dehumanizing by their very nature, that more money isn’t going to fix this, that reform isn’t going make people’s lives better. Instead, we need to burn it all down. Let disabled people live in their own homes. Give them the money they need to hire caregivers that will come to them. Jonathan’s still fighting to get out of long-term care. He’s done dozens of interviews with the press. He’s tried to reach out to Quebec’s premier, François Legault, but all his calls have gone unanswered. And even if he does get out, he’s worried.    [MARCHAND] I’ve been inside for 10 years now and I’m starting to forget how it’s like to be living in the community like everyone else. When you enter a Long-Term Care Facility, it’s like your world shrinks from day-to-day, week-to-week, month-to-month, year-to-year, until your world becomes your–your room or the, the hallway, or the staff that surrounds you. If  I think too much about the future, when I have no future right now, I mean, it’s incredibly demoralizing. It’s, uh.. It can even be dangerous because, when you suffer a setback, then you can lose hope. And so I try to live day-by-day as much as I can. But I want to expand my world.   OUTRO For a century and a half, we have put disabled people in institutions against their will. Long-term care is just the latest iteration of that. For Jonathan, it all comes down to discrimination.   [MARCHAND] It’s a big cultural and systemic issue. People with disabilities are discriminated against every day, at all levels. And it goes even as far as to the idea that our lives are not worth treating and it’s better to be dead than to be disabled.   [ARSHY] Even as the pandemic has killed thousands of people in long-term care, he doesn’t expect things to get better.    [MARCHAND] So, there’s no political will that I see to really change things. And that’s what makes me very angry. There are solutions. We can do better. But it’s off the table, even now with thousands of people dead. What has been announced to change things, turn things around? Next to nothing. And if we don’t do something collectedly, they’re going to get away with it.   [ARSHY] The debate over the future of long-term care is just beginning. But maybe it shouldn’t have any future at all.    END CREDITS That’s your episode of Commons for the week. If you want to support us, click on the link in your show notes or go to commonspodcast.com This episode relied on work done by Sharon Riley at The Walrus, Kenneth Jackson at APTN, Dustin Galer, Madeline Burghardt, the team behind Hope is Not a Plan, and many, many others I want to give a special shout-out to Aimee Louw at The Walrus for all of her help.  If you want to get in touch with us, you can tweet at us at @COMMONSpod. You can also email me, Arshy@canadalandshow.com This episode was produced by me and Jordan Cornish, with additional production by Tiffany Lam. Our managing editor is Andréa Schmidt. And our music is by Nathan Burley.  If you like what we do, please help us make this show. Click on the link in your show notes or go to commonspodcast.com   I think you should be getting our newsletterGet a weekly note about our top stories.This is a good thing that we do. You'll like this.johnsmith@example.comSign UpForm is being submitted, please wait a bit.Please fill out all required fields.
October 10, 2017
81
Niqabs & Nafta
Support us at commonspodcast.com Jonathan Marchand is one of the thousands of young disabled people living in long-term care. But Marchand doesn’t want to fix the system. He doesn’t think it can be reformed. Marchand is an abolitionist. For a century and a half, Canada has hidden away disabled people in institutions where they were neglected and abused. Is long-term care just the latest incarnation of this dark history?   COMMONS: Pandemic is currently focusing on how COVID-19 is affecting long-term care in Canada. Featured in this episode: Jonathan Marchand, Sharon J. Riley (The Walrus), Kenneth Jackson (APTN News), Madeline Burghardt, Dustin Galer To learn more: “When Is a Senior No Longer Capable of Making Their Own Decisions?” by Sharon J. Riley in The Walrus “‘Sitting duck’: Disabled woman, 27, lives in Toronto seniors home with COVID-19 outbreak” by Kenneth Jackson in APTN News Working Towards Equity: Disability Rights Activism and Employment in Late Twentieth-Century by Dustin Galer Broken: Institutions, Families, and the Construction of Intellectual Disability by Madeline Burghardt  Hope Is Not a Plan   This episode is sponsored by Freshbooks Additional music from Audio Network   TRANSCRIPT:    EPISODE 10 – “BURN IT DOWN”   COLD OPEN [ARSHY] Until 2010, Jonathan Marchand had a pretty normal life. He has muscular dystrophy, but that hadn’t been too much of an impediment for him.     [JONATHAN MARCHAND] I always had a disability. It’s a degenerative disability, so I walked until the age of 15. After that, I started to use a wheelchair and I didn’t need much help in my daily living.   [ARSHY] Jonathan’s a senior network engineer. He’s worked for different internet service providers in Quebec and in Australia. He has a partner he’s been with now for 18 years.   [MARCHAND] I was working. I had an active normal life, I had lots of projects for the future.   [ARSHY] And that’s how Jonathan expected things to go. But he didn’t really understand what his condition could do to him.   [MARCHAND] I was ill-advised by my doctors as well. I didn’t know what was in store for me. No one neither ever told me. So I was pretty ignorant about what could happen.   [ARSHY] And in 2010, it happened. He wasn’t feeling well, so he went to see a doctor. They discovered he had a bad case of pneumonia. Jonathan got sent to the ICU.   [MARCHAND] In the ICU there’s two weeks I don’t remember what happened.   [ARSHY] All he remembers are the terrifying hallucinations he experienced.   [MARCHAND] The only recollections of those two weeks are hallucinations, where people are torturing me, basically setting on fires, stabbing me, and, you know, all kinds of horrific experiences like that.   [ARSHY] When he finally came to, the doctors spoke to him.   [MARCHAND] And what they told me is that I would never come out of the– of the hospital because I was dependent now on a ventilator to breathe and there was no option to go back home.   [ARSHY] It was devastating news. And according to Jonathan, his doctors said that the best thing for him would be to refuse further treatment, and that would mean certain death.   [MARCHAND] And what they were pressuring me, pressuring me to accept these euthanasia, three different doctors had that talk with me and tried to pressure me into accepting that. And I spent a few weeks just looking at the ceiling, trying to work out what I was going to do, if I was going to indeed accept to, to be euthanized. Eventually, I refused because I wasn’t ready to die.    [ARSHY] Jonathan wanted to live. He had adapted to major life changes before. He could make his way through this, too. And for two years he tried to get out of the hospital and back to his own home. But the government insisted that his care needs were too high. They weren’t willing to pay for it. So Jonathan had to take the only option that was left on the table. At the age of 35, Jonathan Marchand moved into a long-term care home. I’m Arshy Mann and from Canadaland, this is Commons.   PART ONE [ARSHY] From the minute he moved into his long-term care home outside of Quebec City, Jonathan Marchand knew he didn’t belong there.   [MARCHAND] The first time I entered here, I was shocked. Really shocked. I got really depressed when I entered. And I stayed in my room for about three years and a half. I never went out of my room. I just stayed inside.    [ARSHY] Jonathan was promised that the CHSLD would be a place where he would have more autonomy and personal space. But he says it was just another hospital.  Many people would be surprised to find out that younger people like Jonathan Marchand end up in long-term care homes. We think of them as seniors homes, places where elderly people go at the end of their lives. But that’s the wrong way to look at it. These aren’t old age homes. These are places that house disabled people. They’re asylums. Now, that might seem like an odd claim because, of course, the vast majority of people who live in long-term care are quite elderly. But you don’t end up in long-term care just because you’re old. We know that 70 percent of people in long-term care have some form of dementia or other cognitive issue. The rest need help with some kind of physical ailment. Almost everyone who lives in long-term care is disabled, or perceived by the government to be disabled. And when Jonathan Marchand sees how differently the pandemic has affected people in long-term care, compared to the rest of the population, he sees it as a legacy of generations of discrimination against disabled people.   [MARCHAND] On one side you got the old and the disabled, living in long-term care facilities, dying by the thousands. And on the other side, you got the real citizens who contribute to society.   [ARSHY] And the institutionalization of disabled people has a long and dark history in this country. And it goes back all the way to the founding of the nation. The first institutions for disabled people in this country were founded shortly after confederation.   [DUSTIN GALER] These institutions, they were all part of the state-building process in the late 19th century, just as much, I think, as residential schools.   [ARSHY] That’s Dustin Galer, a historian and the author of Working Towards Equity, which covers the Canadian disability movement.    [MADELINE BURGHART] The first total institution for people with intellectual disabilities was opened in Canada, just outside Orillia, in Ontario, on the shores of Lake Simcoe in 1876. And the first name of that institution was the Orillia Asylum for Idiots. So that really demonstrates the kind of language that was used at the time. My name is Madeleine Burckhardt and I am an instructor in the School of Health Policy and Management at York University.    [ARSHY] The initial idea was to provide rehabilitation and training. And then people would then be sent back to their communities.    [BURGHART] Well, that sort of rehabilitative model shifted pretty quickly into what I call an “incarcerative model,” where people were not really receiving education or training very much. It was more just being housed.   [ARSHY] From the beginning, these places were overcrowded and underfunded. Abuse of all kinds was rampant. And people who were seen as deviant or non-conforming often ended up being housed there. Children from poor families, or women who were deemed unfit to raise a family, all ended up in these institutions.   [GALER] And particularly, they would treat adults with physical and intellectual disabilities and mental health issues with whatever the latest treatments were at the time. And of course, this often involved hard physical labor, isolation, electroshock therapy, all under the supervision of doctors.  And often, you know, it’s important to remember that disabled people were deposited here by families, often under the sincere belief they would be better off.    [ARSHY] By the turn of the century, a new perfidious idea was making its way through the Canadian medical and political establishments — eugenics.   [BURGHART] This was really being promoted as sound, good health policy. You know, that this was going to be good for the general population if we could rid the population of people who were considered feeble minded. And this was absolutely believed and absolutely promoted and institutions were a tool for that movement.   [ARSHY] The epicentre of this movement was Alberta. In 1928 the Albertan government passed the Sexual Sterilization Act. Children with disabilities in these institutions were amongst the many undesirables who were forcibly sterilized, usually without their knowledge. The law wasn’t repealed until 1972. But by the middle of the century, the tide had begun to turn against routine institutionalization.  Journalist Pierre Berton exposed the conditions inside the Orillia asylum in 1960.    [GALER] And people were just horrified by what they saw. People were just flocking around in diapers, and no, no semblance of care being had. Or, you know, overmedication, these types of things. And this actually helped start a movement to deinstitutionalize people with physical disability, intellectual developmental disabilities, and mental health issues.   [ARSHY] Mothers of disabled children pushed back against efforts to have their kids institutionalized. They argued that they should be supported at home, instead. And the arguments resonated. The institutions began to close.    [GALER] But the problem with the response to deinstitutionalization was that governments… They didn’t really commit enough resources to build out an adequate network of community services. So, a lot of the time, it was… It was almost seen as a cost-saving measure, like this movement to deinstitutionalize people kind of overlapped with the desire to reduce budgets.    [ARSHY] Many disabled Canadians ended up homeless, living in shelters, in chronic care in hospitals, and of course, in nursing homes in long-term care. But it was around this time that disabled Canadians found new avenues to advocate for themselves. Disability was becoming an identity.   [GALER] So there were different disability movements. But a big one that emerged in the 70s and 80s were consumer activists. So, these are people with disabilities, themselves, pushing back, demanding greater rights to protect them.    [ARSHY] And an important part of these movements was confronting the caregivers who once claimed to speak for disabled people. Disabled people made it clear that they are their own best advocates. By the 2000s, disability rights and liberation movements were widespread. But many disabled Canadians continue to live in institutions that don’t serve their needs, where they’re abused and neglected. The Huronia Regional Centre, first known as the Orillia Asylum for Idiots, only closed down in 2009.   PART TWO [ARSHY] So what makes long-term care different from these earlier institutions for disabled people? I think if we’re being honest, it’s not much. And a major reason why is that there are specific processes that happen when you’re institutionalized. By their very nature, they’re dehumanizing. Let’s start out with how you end up in long-term care.   [SHARON RILEY] We have seen surveys coming out of provinces like B.C. where advocates have surveyed nursing home residents and found that at least half of them say they don’t want to be there.   [ARSHY] That’s Sharon J. Riley, an investigative journalist, and a longtime friend of the show. She recently tackled this very question in a big feature she wrote and reported for The Walrus. There are some people who plan for long-term care, but that’s not the majority. For a lot of the people who are deemed to have dementia or another intellectual disability, it starts with a capacity test.   [RILEY] A capacity test is a tool that’s used to assess someone’s mental capacity. It’s important to note that mental capacity is not about how smart you are. It’s about your ability to make decisions, taking into account the implications of those decisions. When an assessor who’s measuring capacity is trying to make that determination, they can ask you all sorts of questions. They can ask you questions about your living situation. So say, “What would happen to you if you fell at home,” or ask you questions about how you pay your bills. “What would happen if you continue living at home?” “What would happen if you moved to a nursing home,” and sort of assess whether you understand the implications of each of those things. Not whether you want it or not, but whether you understand what it means. But an assessor can also look at cognitive abilities as sort of a way to feed into this determination. And that’s where things get a little bit tricky. ‘Cause there are many different cognitive tests out there. They can ask you kind of jarring and weird questions. Being asked, “Can you draw a clock face? Can you name as many words as you can think of that start with the letter ‘F’?” Can you say ifs, ands and buts three times and given a time limit on each of these things? So you might be very flustered. You might have 30 seconds to name as many words as you can think of that start with the letter F. Also, another test that can feed into a capacity assessment, though it is not measuring capacity itself, is measuring depression. So you might be asked questions like, “Do you feel pretty worthless right now, or is it wonderful to be alive?” These are, like, word for word questions on a depression scale assessment. And those answers can also feed into an assessor’s determination of whether or not you have mental capacity.   [ARSHY] These tests often last only 30 or 45 minutes. If the assessor decides that you don’t have the capacity to make your own decisions, from that one interview, the state can take over life. You can lose control of your finances, and they can force you to leave your home and go live in long-term care.   [RILEY] So the implications of the capacity tests can be enormous. Even though it can be short and the questions can seem strange, in the end, the assessor can decide to take away some pretty huge liberties that we enjoy as adults.    [ARSHY] For the majority of Canadians, there are few ways to fight the decision. Ontario is the only province that even has an appeals process. But that’s not the only way that people end up in the system. Many, like Jonathan Marchand, are forced into it because the government says that there’s nowhere else they can get the level of care that they require.   [JONATHAN MARCHAND] They could not give me enough hours of assistance the whole day. There are hard caps on the hours that you can get in Quebec. It’s around 44 hours a week and I needed 168 hours a week.   [ARSHY] Or take the case of Cayleah Lamarsh.    [KENNETH JACKSON]  He’s a nice person to speak to. She’s very helpful. Always available.   [ARSHY] That’s Kenneth Jackson, a reporter with Aboriginal People’s Television Network. He’s been reporting on Cayleah’s situation from the beginning of the pandemic. Cayleah was abandoned by her mother at a very young age. By four, she was a Crown ward. And by eight she was in a group home.     [JACKSON] So you can just imagine at that age, eight. By then, that’s almost pure hell. For the most part, right? Like, that’s a lot of damage, you know, on a young developing mind.   [ARSHY] She was abused in various homes and, by 18, she aged out of the system. And by 21, she was homeless.   [JACKSON] She was on a Toronto bus. The freak accident, and she got flung forward and smashed her neck or shoulder off one of the poles, and she’s paralyzed from the waist down. And there was nowhere for her to go. So she went into a long-term care home. And she knows that she doesn’t want to be there. She’s been trying to get out. Even the doctor that first saw her says, “You don’t belong here. We can’t care for you. There’s nothing here for you.”   [ARSHY] Cayleah doesn’t need care 24/7. She just needs some help with things like getting out of bed or bathing. But long-term care was the only option presented to her.   [JACKSON] Caylee was abandoned in a child welfare system. Now she’s abandoned in a long-term care system. The long-term care one, that’s for life. She has a life sentence in that home.   [ARSHY] And Jonathan Marchand says that, once you’re inside, you’re simply not treated like a person.   [MARCHAND] Basically, you’ll lose your citizenship when you enter a long-term care facility. You become an object that we warehouse away. An object of care and profit.   [ARSHY] You become an object of care. Something to be managed. Something that has to fit into a schedule and a routine. And when Jonathan describes what that’s like, it sounds exactly like what people with intellectual disabilities had to face in places like the Orillia Asylum for Idiots.  Here’s Madeline Burkhart again, talking about what life in that institution was like decades ago.    [BURKHART] There’s so many thousands of little decisions that we make for ourselves every day that we’re just taking away from people. So there’s that whole dehumanization, as well. Like even just deciding what clothes to wear, or when to turn the lights off, when to get up in the morning, when to go to bed at night. What you are going to eat, how long you would take to eat your meal… All those things were controlled. All aspects of your daily life was organized and imposed from above, from the administration of the institution.   [ARSHY] And here’s Jonathan Marchand talking about what life is like today in long-term care.   [MARCHAND] It’s incredibly difficult because when you enter, you lose control over your life in all aspects. You don’t have any choice over who touches your body to provide you assistance. You’ve got no choice or control. At what time are you gonna get up? When you go to bed, what time are you gonna eat? What you gonna eat? Um, what time are you gonna go to the toilet? Basically everything is managed for you.   [ARSHY] And in these institutions, both past and present, the residents or patients or inmates, are forced to conform to the needs of the staff.   [BURKHART] And you can understand it when you think about… If there were hundreds, sometimes thousands of people living together, you can’t organize that many people in a way that allows individual choice and freedom. And so the administrative needs of the institution always superseded the individual desires and needs of the residents.    [MARCHAND] Whenever there’s a conflict between your well-being, your rights and the rules, the law and the way the services are organized, it’s, it’s always the latter that wins.  In an institution, you need to keep the peace here and you need to stay in your lane, to stay quiet. They want you to be obedient. They want you to be kind at all times. You got to be a good cripple, right? You got to do what they say.   [ARSHY] If you’re not obedient, if you don’t stay quiet, you can be restrained. In Ontario in 2010, 16 per cent of long-term care residents were physically restrained on a daily basis. That number is now down to around four per cent.  Often, this is done because people are violent or a danger to themselves. But it’s still undeniably inhumane.  And then there’s the use of chemical restraints. Long-term care residents are often given anti-psychotic drugs, even if they have not been diagnosed with psychosis.   [RILEY] You can imagine that an antipsychotic drug has a lot of the same side-effects symptoms of waning mental capacity. So if you administered an antipsychotic drug, you can become very lethargic, you can become very confused. You can seem less interested in life in general. It’s… It’s a pacifier, essentially. It might make it much more difficult for you to manage your daily tasks.  So even if you went into a nursing home with mental capacity that was quite robust, if you were making a big fuss, if you’re complaining all the time and becoming a real disruption to all the other residents, it’s not out of the realm of possibility that you might be administered antipsychotic drugs just to calm you down, which could then further the case against you that your mental capacity is waning.   [ARSHY] A 2011 investigation by the BC government found that over 50 per cent of people in long-term care were on some kind of anti-psychotic medication. Many of them did not have any kind of documented diagnosis for psychosis. It’s true that historically, abusers have been attracted to the power that working in these kinds of institutions gives them. But that’s not the majority of people.   [BURGHART] We are horrified when we hear stories about staff doing terrible things in institutions, but we don’t make that easy.   [ARSHY] The systems that are set up almost demand that the residents are treated in these awful ways.    [BURGHART] It’s just harder, plain and simple, to be kind when you are looking after that many people and being asked to help 10 people to have a bath, or asked to help 20 people to eat their dinner, or whatever it may be, it takes away the opportunity for–for real care, I think. Institutions do not make it easy for people to be really kind and provide the care that we all are entitled to.    [ARSHY] If you’re in an institution, you lose control over almost everything.    [MARCHAND] And it goes even further than that. My experience is that they even want to control the way you die,   [ARSHY] At one point, when Jonathan was in the hospital, he wanted to just go home, whether or not he got the care he needed, even if it put his life in danger. But Jonathan was told that he couldn’t.   [MARCHAND] But he told me, “No, it’s dangerous. You can’t do that. We need to ensure your safety and we’ll go to court to stop you from going out.”   [ARSHY] This was coming from the same people who were pressuring him to end his own life. But they wouldn’t let him choose how.   [MARCHAND] So even in death, they want to control the way you die. So that’s… That’s messed up. You become an object to them that they have to keep track of. And an object doesn’t have any kind of rights whatsoever. You got to be this passive thing. I think it’s incredibly dehumanizing, and I don’t want to be part of that system anymore. I want to get out. I want to be able to live my own life according to my own values and be able to contribute to society like everyone else. I don’t see how anyone can live in a place like that. Frankly, I think humans are not made to live inside institutions.   PART THREE [ARSHY] In his first few years in long-term care, Jonathan Marchand considered acting on the advice so many medical professionals were giving him. Euthanasia.    [MARCHAND] Most people were pushing me toward euthanasia. You know, that conversation was coming up over and over again. So I started to get really depressed at that time. Um, and I was seeking, uh, ways, uh, to end my life. So, I was in this mindset that there was so way out, and death was my escape. But something happened. Eventually on the Internet, I met on Facebook… I met with other people with disabilities outside of, uh, Quebec. In Canada, in the United States, in Europe and in Australia, who had needs similar to mine, who were using ventilators or needed 24 hour assistance. And they had that assistance in their own home. And they were working. They had partners. They are… They had a normal life. So I was like, what the hell? Why can’t I get that in Quebec?   [ARSHY] Before long-term care, Jonathan had never been an activist. He didn’t think much about disability rights or liberation before he was trapped in this home. Once he started to connect with other people like him around the world, Jonathan realized he wasn’t the problem. His disability didn’t mean he had to live in long-term care. There are lots of people, just like him, living in their communities, having a normal life. And he saw how other people had gotten those changes made. Disabled people themselves have to demand it.    [MARCHAND] That’s the key. Because when you rely on third parties to do the work for you, oftentimes you end up with, uh, crumbs or, you know, things that, um, don’t respect your rights and don’t lead to your emancipation.   [ARSHY] He co-founded a cooperative with some friends to lobby the Quebec government to provide funding so people like him could live at home. And he argues that it’s actually cheaper to do that, than house people in long-term care.   [MARCHAND] There are no economic arguments against that proposition. Actually, you are throwing money away by continuing to invest in institutions.   [ARSHY] Throughout this season of Commons, we’ve been telling you about how underfunded and understaffed the long-term care system is. How we need higher standards of care, more resources, better training. But Jonathan thinks all of that is bullshit.    [MARCHAND] I think long-term care facilities should not exist. Um… It’s, um, something that’s been put in place to exclude and eliminate people with disabilities from society.   [ARSHY] Jonathan is in favour of abolition.   [MARCHAND] The idea that we can have good institutions is false. These places are designed to deprive the, the freedom of people with disabilities and the elderly. It’s incompatible with life.   [ARSHY] Jonathan believes that all institutions, whether it was an asylum 150 years ago, or long-term care today, are dehumanizing by their very nature, that more money isn’t going to fix this, that reform isn’t going make people’s lives better. Instead, we need to burn it all down. Let disabled people live in their own homes. Give them the money they need to hire caregivers that will come to them. Jonathan’s still fighting to get out of long-term care. He’s done dozens of interviews with the press. He’s tried to reach out to Quebec’s premier, François Legault, but all his calls have gone unanswered. And even if he does get out, he’s worried.    [MARCHAND] I’ve been inside for 10 years now and I’m starting to forget how it’s like to be living in the community like everyone else. When you enter a Long-Term Care Facility, it’s like your world shrinks from day-to-day, week-to-week, month-to-month, year-to-year, until your world becomes your–your room or the, the hallway, or the staff that surrounds you. If  I think too much about the future, when I have no future right now, I mean, it’s incredibly demoralizing. It’s, uh.. It can even be dangerous because, when you suffer a setback, then you can lose hope. And so I try to live day-by-day as much as I can. But I want to expand my world.   OUTRO For a century and a half, we have put disabled people in institutions against their will. Long-term care is just the latest iteration of that. For Jonathan, it all comes down to discrimination.   [MARCHAND] It’s a big cultural and systemic issue. People with disabilities are discriminated against every day, at all levels. And it goes even as far as to the idea that our lives are not worth treating and it’s better to be dead than to be disabled.   [ARSHY] Even as the pandemic has killed thousands of people in long-term care, he doesn’t expect things to get better.    [MARCHAND] So, there’s no political will that I see to really change things. And that’s what makes me very angry. There are solutions. We can do better. But it’s off the table, even now with thousands of people dead. What has been announced to change things, turn things around? Next to nothing. And if we don’t do something collectedly, they’re going to get away with it.   [ARSHY] The debate over the future of long-term care is just beginning. But maybe it shouldn’t have any future at all.    END CREDITS That’s your episode of Commons for the week. If you want to support us, click on the link in your show notes or go to commonspodcast.com This episode relied on work done by Sharon Riley at The Walrus, Kenneth Jackson at APTN, Dustin Galer, Madeline Burghardt, the team behind Hope is Not a Plan, and many, many others I want to give a special shout-out to Aimee Louw at The Walrus for all of her help.  If you want to get in touch with us, you can tweet at us at @COMMONSpod. You can also email me, Arshy@canadalandshow.com This episode was produced by me and Jordan Cornish, with additional production by Tiffany Lam. Our managing editor is Andréa Schmidt. And our music is by Nathan Burley.  If you like what we do, please help us make this show. Click on the link in your show notes or go to commonspodcast.com   I think you should be getting our newsletterGet a weekly note about our top stories.This is a good thing that we do. 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October 24, 2017
82
As If They Were Pets: The Sixties Scoop
Support us at commonspodcast.com Jonathan Marchand is one of the thousands of young disabled people living in long-term care. But Marchand doesn’t want to fix the system. He doesn’t think it can be reformed. Marchand is an abolitionist. For a century and a half, Canada has hidden away disabled people in institutions where they were neglected and abused. Is long-term care just the latest incarnation of this dark history?   COMMONS: Pandemic is currently focusing on how COVID-19 is affecting long-term care in Canada. Featured in this episode: Jonathan Marchand, Sharon J. Riley (The Walrus), Kenneth Jackson (APTN News), Madeline Burghardt, Dustin Galer To learn more: “When Is a Senior No Longer Capable of Making Their Own Decisions?” by Sharon J. Riley in The Walrus “‘Sitting duck’: Disabled woman, 27, lives in Toronto seniors home with COVID-19 outbreak” by Kenneth Jackson in APTN News Working Towards Equity: Disability Rights Activism and Employment in Late Twentieth-Century by Dustin Galer Broken: Institutions, Families, and the Construction of Intellectual Disability by Madeline Burghardt  Hope Is Not a Plan   This episode is sponsored by Freshbooks Additional music from Audio Network   TRANSCRIPT:    EPISODE 10 – “BURN IT DOWN”   COLD OPEN [ARSHY] Until 2010, Jonathan Marchand had a pretty normal life. He has muscular dystrophy, but that hadn’t been too much of an impediment for him.     [JONATHAN MARCHAND] I always had a disability. It’s a degenerative disability, so I walked until the age of 15. After that, I started to use a wheelchair and I didn’t need much help in my daily living.   [ARSHY] Jonathan’s a senior network engineer. He’s worked for different internet service providers in Quebec and in Australia. He has a partner he’s been with now for 18 years.   [MARCHAND] I was working. I had an active normal life, I had lots of projects for the future.   [ARSHY] And that’s how Jonathan expected things to go. But he didn’t really understand what his condition could do to him.   [MARCHAND] I was ill-advised by my doctors as well. I didn’t know what was in store for me. No one neither ever told me. So I was pretty ignorant about what could happen.   [ARSHY] And in 2010, it happened. He wasn’t feeling well, so he went to see a doctor. They discovered he had a bad case of pneumonia. Jonathan got sent to the ICU.   [MARCHAND] In the ICU there’s two weeks I don’t remember what happened.   [ARSHY] All he remembers are the terrifying hallucinations he experienced.   [MARCHAND] The only recollections of those two weeks are hallucinations, where people are torturing me, basically setting on fires, stabbing me, and, you know, all kinds of horrific experiences like that.   [ARSHY] When he finally came to, the doctors spoke to him.   [MARCHAND] And what they told me is that I would never come out of the– of the hospital because I was dependent now on a ventilator to breathe and there was no option to go back home.   [ARSHY] It was devastating news. And according to Jonathan, his doctors said that the best thing for him would be to refuse further treatment, and that would mean certain death.   [MARCHAND] And what they were pressuring me, pressuring me to accept these euthanasia, three different doctors had that talk with me and tried to pressure me into accepting that. And I spent a few weeks just looking at the ceiling, trying to work out what I was going to do, if I was going to indeed accept to, to be euthanized. Eventually, I refused because I wasn’t ready to die.    [ARSHY] Jonathan wanted to live. He had adapted to major life changes before. He could make his way through this, too. And for two years he tried to get out of the hospital and back to his own home. But the government insisted that his care needs were too high. They weren’t willing to pay for it. So Jonathan had to take the only option that was left on the table. At the age of 35, Jonathan Marchand moved into a long-term care home. I’m Arshy Mann and from Canadaland, this is Commons.   PART ONE [ARSHY] From the minute he moved into his long-term care home outside of Quebec City, Jonathan Marchand knew he didn’t belong there.   [MARCHAND] The first time I entered here, I was shocked. Really shocked. I got really depressed when I entered. And I stayed in my room for about three years and a half. I never went out of my room. I just stayed inside.    [ARSHY] Jonathan was promised that the CHSLD would be a place where he would have more autonomy and personal space. But he says it was just another hospital.  Many people would be surprised to find out that younger people like Jonathan Marchand end up in long-term care homes. We think of them as seniors homes, places where elderly people go at the end of their lives. But that’s the wrong way to look at it. These aren’t old age homes. These are places that house disabled people. They’re asylums. Now, that might seem like an odd claim because, of course, the vast majority of people who live in long-term care are quite elderly. But you don’t end up in long-term care just because you’re old. We know that 70 percent of people in long-term care have some form of dementia or other cognitive issue. The rest need help with some kind of physical ailment. Almost everyone who lives in long-term care is disabled, or perceived by the government to be disabled. And when Jonathan Marchand sees how differently the pandemic has affected people in long-term care, compared to the rest of the population, he sees it as a legacy of generations of discrimination against disabled people.   [MARCHAND] On one side you got the old and the disabled, living in long-term care facilities, dying by the thousands. And on the other side, you got the real citizens who contribute to society.   [ARSHY] And the institutionalization of disabled people has a long and dark history in this country. And it goes back all the way to the founding of the nation. The first institutions for disabled people in this country were founded shortly after confederation.   [DUSTIN GALER] These institutions, they were all part of the state-building process in the late 19th century, just as much, I think, as residential schools.   [ARSHY] That’s Dustin Galer, a historian and the author of Working Towards Equity, which covers the Canadian disability movement.    [MADELINE BURGHART] The first total institution for people with intellectual disabilities was opened in Canada, just outside Orillia, in Ontario, on the shores of Lake Simcoe in 1876. And the first name of that institution was the Orillia Asylum for Idiots. So that really demonstrates the kind of language that was used at the time. My name is Madeleine Burckhardt and I am an instructor in the School of Health Policy and Management at York University.    [ARSHY] The initial idea was to provide rehabilitation and training. And then people would then be sent back to their communities.    [BURGHART] Well, that sort of rehabilitative model shifted pretty quickly into what I call an “incarcerative model,” where people were not really receiving education or training very much. It was more just being housed.   [ARSHY] From the beginning, these places were overcrowded and underfunded. Abuse of all kinds was rampant. And people who were seen as deviant or non-conforming often ended up being housed there. Children from poor families, or women who were deemed unfit to raise a family, all ended up in these institutions.   [GALER] And particularly, they would treat adults with physical and intellectual disabilities and mental health issues with whatever the latest treatments were at the time. And of course, this often involved hard physical labor, isolation, electroshock therapy, all under the supervision of doctors.  And often, you know, it’s important to remember that disabled people were deposited here by families, often under the sincere belief they would be better off.    [ARSHY] By the turn of the century, a new perfidious idea was making its way through the Canadian medical and political establishments — eugenics.   [BURGHART] This was really being promoted as sound, good health policy. You know, that this was going to be good for the general population if we could rid the population of people who were considered feeble minded. And this was absolutely believed and absolutely promoted and institutions were a tool for that movement.   [ARSHY] The epicentre of this movement was Alberta. In 1928 the Albertan government passed the Sexual Sterilization Act. Children with disabilities in these institutions were amongst the many undesirables who were forcibly sterilized, usually without their knowledge. The law wasn’t repealed until 1972. But by the middle of the century, the tide had begun to turn against routine institutionalization.  Journalist Pierre Berton exposed the conditions inside the Orillia asylum in 1960.    [GALER] And people were just horrified by what they saw. People were just flocking around in diapers, and no, no semblance of care being had. Or, you know, overmedication, these types of things. And this actually helped start a movement to deinstitutionalize people with physical disability, intellectual developmental disabilities, and mental health issues.   [ARSHY] Mothers of disabled children pushed back against efforts to have their kids institutionalized. They argued that they should be supported at home, instead. And the arguments resonated. The institutions began to close.    [GALER] But the problem with the response to deinstitutionalization was that governments… They didn’t really commit enough resources to build out an adequate network of community services. So, a lot of the time, it was… It was almost seen as a cost-saving measure, like this movement to deinstitutionalize people kind of overlapped with the desire to reduce budgets.    [ARSHY] Many disabled Canadians ended up homeless, living in shelters, in chronic care in hospitals, and of course, in nursing homes in long-term care. But it was around this time that disabled Canadians found new avenues to advocate for themselves. Disability was becoming an identity.   [GALER] So there were different disability movements. But a big one that emerged in the 70s and 80s were consumer activists. So, these are people with disabilities, themselves, pushing back, demanding greater rights to protect them.    [ARSHY] And an important part of these movements was confronting the caregivers who once claimed to speak for disabled people. Disabled people made it clear that they are their own best advocates. By the 2000s, disability rights and liberation movements were widespread. But many disabled Canadians continue to live in institutions that don’t serve their needs, where they’re abused and neglected. The Huronia Regional Centre, first known as the Orillia Asylum for Idiots, only closed down in 2009.   PART TWO [ARSHY] So what makes long-term care different from these earlier institutions for disabled people? I think if we’re being honest, it’s not much. And a major reason why is that there are specific processes that happen when you’re institutionalized. By their very nature, they’re dehumanizing. Let’s start out with how you end up in long-term care.   [SHARON RILEY] We have seen surveys coming out of provinces like B.C. where advocates have surveyed nursing home residents and found that at least half of them say they don’t want to be there.   [ARSHY] That’s Sharon J. Riley, an investigative journalist, and a longtime friend of the show. She recently tackled this very question in a big feature she wrote and reported for The Walrus. There are some people who plan for long-term care, but that’s not the majority. For a lot of the people who are deemed to have dementia or another intellectual disability, it starts with a capacity test.   [RILEY] A capacity test is a tool that’s used to assess someone’s mental capacity. It’s important to note that mental capacity is not about how smart you are. It’s about your ability to make decisions, taking into account the implications of those decisions. When an assessor who’s measuring capacity is trying to make that determination, they can ask you all sorts of questions. They can ask you questions about your living situation. So say, “What would happen to you if you fell at home,” or ask you questions about how you pay your bills. “What would happen if you continue living at home?” “What would happen if you moved to a nursing home,” and sort of assess whether you understand the implications of each of those things. Not whether you want it or not, but whether you understand what it means. But an assessor can also look at cognitive abilities as sort of a way to feed into this determination. And that’s where things get a little bit tricky. ‘Cause there are many different cognitive tests out there. They can ask you kind of jarring and weird questions. Being asked, “Can you draw a clock face? Can you name as many words as you can think of that start with the letter ‘F’?” Can you say ifs, ands and buts three times and given a time limit on each of these things? So you might be very flustered. You might have 30 seconds to name as many words as you can think of that start with the letter F. Also, another test that can feed into a capacity assessment, though it is not measuring capacity itself, is measuring depression. So you might be asked questions like, “Do you feel pretty worthless right now, or is it wonderful to be alive?” These are, like, word for word questions on a depression scale assessment. And those answers can also feed into an assessor’s determination of whether or not you have mental capacity.   [ARSHY] These tests often last only 30 or 45 minutes. If the assessor decides that you don’t have the capacity to make your own decisions, from that one interview, the state can take over life. You can lose control of your finances, and they can force you to leave your home and go live in long-term care.   [RILEY] So the implications of the capacity tests can be enormous. Even though it can be short and the questions can seem strange, in the end, the assessor can decide to take away some pretty huge liberties that we enjoy as adults.    [ARSHY] For the majority of Canadians, there are few ways to fight the decision. Ontario is the only province that even has an appeals process. But that’s not the only way that people end up in the system. Many, like Jonathan Marchand, are forced into it because the government says that there’s nowhere else they can get the level of care that they require.   [JONATHAN MARCHAND] They could not give me enough hours of assistance the whole day. There are hard caps on the hours that you can get in Quebec. It’s around 44 hours a week and I needed 168 hours a week.   [ARSHY] Or take the case of Cayleah Lamarsh.    [KENNETH JACKSON]  He’s a nice person to speak to. She’s very helpful. Always available.   [ARSHY] That’s Kenneth Jackson, a reporter with Aboriginal People’s Television Network. He’s been reporting on Cayleah’s situation from the beginning of the pandemic. Cayleah was abandoned by her mother at a very young age. By four, she was a Crown ward. And by eight she was in a group home.     [JACKSON] So you can just imagine at that age, eight. By then, that’s almost pure hell. For the most part, right? Like, that’s a lot of damage, you know, on a young developing mind.   [ARSHY] She was abused in various homes and, by 18, she aged out of the system. And by 21, she was homeless.   [JACKSON] She was on a Toronto bus. The freak accident, and she got flung forward and smashed her neck or shoulder off one of the poles, and she’s paralyzed from the waist down. And there was nowhere for her to go. So she went into a long-term care home. And she knows that she doesn’t want to be there. She’s been trying to get out. Even the doctor that first saw her says, “You don’t belong here. We can’t care for you. There’s nothing here for you.”   [ARSHY] Cayleah doesn’t need care 24/7. She just needs some help with things like getting out of bed or bathing. But long-term care was the only option presented to her.   [JACKSON] Caylee was abandoned in a child welfare system. Now she’s abandoned in a long-term care system. The long-term care one, that’s for life. She has a life sentence in that home.   [ARSHY] And Jonathan Marchand says that, once you’re inside, you’re simply not treated like a person.   [MARCHAND] Basically, you’ll lose your citizenship when you enter a long-term care facility. You become an object that we warehouse away. An object of care and profit.   [ARSHY] You become an object of care. Something to be managed. Something that has to fit into a schedule and a routine. And when Jonathan describes what that’s like, it sounds exactly like what people with intellectual disabilities had to face in places like the Orillia Asylum for Idiots.  Here’s Madeline Burkhart again, talking about what life in that institution was like decades ago.    [BURKHART] There’s so many thousands of little decisions that we make for ourselves every day that we’re just taking away from people. So there’s that whole dehumanization, as well. Like even just deciding what clothes to wear, or when to turn the lights off, when to get up in the morning, when to go to bed at night. What you are going to eat, how long you would take to eat your meal… All those things were controlled. All aspects of your daily life was organized and imposed from above, from the administration of the institution.   [ARSHY] And here’s Jonathan Marchand talking about what life is like today in long-term care.   [MARCHAND] It’s incredibly difficult because when you enter, you lose control over your life in all aspects. You don’t have any choice over who touches your body to provide you assistance. You’ve got no choice or control. At what time are you gonna get up? When you go to bed, what time are you gonna eat? What you gonna eat? Um, what time are you gonna go to the toilet? Basically everything is managed for you.   [ARSHY] And in these institutions, both past and present, the residents or patients or inmates, are forced to conform to the needs of the staff.   [BURKHART] And you can understand it when you think about… If there were hundreds, sometimes thousands of people living together, you can’t organize that many people in a way that allows individual choice and freedom. And so the administrative needs of the institution always superseded the individual desires and needs of the residents.    [MARCHAND] Whenever there’s a conflict between your well-being, your rights and the rules, the law and the way the services are organized, it’s, it’s always the latter that wins.  In an institution, you need to keep the peace here and you need to stay in your lane, to stay quiet. They want you to be obedient. They want you to be kind at all times. You got to be a good cripple, right? You got to do what they say.   [ARSHY] If you’re not obedient, if you don’t stay quiet, you can be restrained. In Ontario in 2010, 16 per cent of long-term care residents were physically restrained on a daily basis. That number is now down to around four per cent.  Often, this is done because people are violent or a danger to themselves. But it’s still undeniably inhumane.  And then there’s the use of chemical restraints. Long-term care residents are often given anti-psychotic drugs, even if they have not been diagnosed with psychosis.   [RILEY] You can imagine that an antipsychotic drug has a lot of the same side-effects symptoms of waning mental capacity. So if you administered an antipsychotic drug, you can become very lethargic, you can become very confused. You can seem less interested in life in general. It’s… It’s a pacifier, essentially. It might make it much more difficult for you to manage your daily tasks.  So even if you went into a nursing home with mental capacity that was quite robust, if you were making a big fuss, if you’re complaining all the time and becoming a real disruption to all the other residents, it’s not out of the realm of possibility that you might be administered antipsychotic drugs just to calm you down, which could then further the case against you that your mental capacity is waning.   [ARSHY] A 2011 investigation by the BC government found that over 50 per cent of people in long-term care were on some kind of anti-psychotic medication. Many of them did not have any kind of documented diagnosis for psychosis. It’s true that historically, abusers have been attracted to the power that working in these kinds of institutions gives them. But that’s not the majority of people.   [BURGHART] We are horrified when we hear stories about staff doing terrible things in institutions, but we don’t make that easy.   [ARSHY] The systems that are set up almost demand that the residents are treated in these awful ways.    [BURGHART] It’s just harder, plain and simple, to be kind when you are looking after that many people and being asked to help 10 people to have a bath, or asked to help 20 people to eat their dinner, or whatever it may be, it takes away the opportunity for–for real care, I think. Institutions do not make it easy for people to be really kind and provide the care that we all are entitled to.    [ARSHY] If you’re in an institution, you lose control over almost everything.    [MARCHAND] And it goes even further than that. My experience is that they even want to control the way you die,   [ARSHY] At one point, when Jonathan was in the hospital, he wanted to just go home, whether or not he got the care he needed, even if it put his life in danger. But Jonathan was told that he couldn’t.   [MARCHAND] But he told me, “No, it’s dangerous. You can’t do that. We need to ensure your safety and we’ll go to court to stop you from going out.”   [ARSHY] This was coming from the same people who were pressuring him to end his own life. But they wouldn’t let him choose how.   [MARCHAND] So even in death, they want to control the way you die. So that’s… That’s messed up. You become an object to them that they have to keep track of. And an object doesn’t have any kind of rights whatsoever. You got to be this passive thing. I think it’s incredibly dehumanizing, and I don’t want to be part of that system anymore. I want to get out. I want to be able to live my own life according to my own values and be able to contribute to society like everyone else. I don’t see how anyone can live in a place like that. Frankly, I think humans are not made to live inside institutions.   PART THREE [ARSHY] In his first few years in long-term care, Jonathan Marchand considered acting on the advice so many medical professionals were giving him. Euthanasia.    [MARCHAND] Most people were pushing me toward euthanasia. You know, that conversation was coming up over and over again. So I started to get really depressed at that time. Um, and I was seeking, uh, ways, uh, to end my life. So, I was in this mindset that there was so way out, and death was my escape. But something happened. Eventually on the Internet, I met on Facebook… I met with other people with disabilities outside of, uh, Quebec. In Canada, in the United States, in Europe and in Australia, who had needs similar to mine, who were using ventilators or needed 24 hour assistance. And they had that assistance in their own home. And they were working. They had partners. They are… They had a normal life. So I was like, what the hell? Why can’t I get that in Quebec?   [ARSHY] Before long-term care, Jonathan had never been an activist. He didn’t think much about disability rights or liberation before he was trapped in this home. Once he started to connect with other people like him around the world, Jonathan realized he wasn’t the problem. His disability didn’t mean he had to live in long-term care. There are lots of people, just like him, living in their communities, having a normal life. And he saw how other people had gotten those changes made. Disabled people themselves have to demand it.    [MARCHAND] That’s the key. Because when you rely on third parties to do the work for you, oftentimes you end up with, uh, crumbs or, you know, things that, um, don’t respect your rights and don’t lead to your emancipation.   [ARSHY] He co-founded a cooperative with some friends to lobby the Quebec government to provide funding so people like him could live at home. And he argues that it’s actually cheaper to do that, than house people in long-term care.   [MARCHAND] There are no economic arguments against that proposition. Actually, you are throwing money away by continuing to invest in institutions.   [ARSHY] Throughout this season of Commons, we’ve been telling you about how underfunded and understaffed the long-term care system is. How we need higher standards of care, more resources, better training. But Jonathan thinks all of that is bullshit.    [MARCHAND] I think long-term care facilities should not exist. Um… It’s, um, something that’s been put in place to exclude and eliminate people with disabilities from society.   [ARSHY] Jonathan is in favour of abolition.   [MARCHAND] The idea that we can have good institutions is false. These places are designed to deprive the, the freedom of people with disabilities and the elderly. It’s incompatible with life.   [ARSHY] Jonathan believes that all institutions, whether it was an asylum 150 years ago, or long-term care today, are dehumanizing by their very nature, that more money isn’t going to fix this, that reform isn’t going make people’s lives better. Instead, we need to burn it all down. Let disabled people live in their own homes. Give them the money they need to hire caregivers that will come to them. Jonathan’s still fighting to get out of long-term care. He’s done dozens of interviews with the press. He’s tried to reach out to Quebec’s premier, François Legault, but all his calls have gone unanswered. And even if he does get out, he’s worried.    [MARCHAND] I’ve been inside for 10 years now and I’m starting to forget how it’s like to be living in the community like everyone else. When you enter a Long-Term Care Facility, it’s like your world shrinks from day-to-day, week-to-week, month-to-month, year-to-year, until your world becomes your–your room or the, the hallway, or the staff that surrounds you. If  I think too much about the future, when I have no future right now, I mean, it’s incredibly demoralizing. It’s, uh.. It can even be dangerous because, when you suffer a setback, then you can lose hope. And so I try to live day-by-day as much as I can. But I want to expand my world.   OUTRO For a century and a half, we have put disabled people in institutions against their will. Long-term care is just the latest iteration of that. For Jonathan, it all comes down to discrimination.   [MARCHAND] It’s a big cultural and systemic issue. People with disabilities are discriminated against every day, at all levels. And it goes even as far as to the idea that our lives are not worth treating and it’s better to be dead than to be disabled.   [ARSHY] Even as the pandemic has killed thousands of people in long-term care, he doesn’t expect things to get better.    [MARCHAND] So, there’s no political will that I see to really change things. And that’s what makes me very angry. There are solutions. We can do better. But it’s off the table, even now with thousands of people dead. What has been announced to change things, turn things around? Next to nothing. And if we don’t do something collectedly, they’re going to get away with it.   [ARSHY] The debate over the future of long-term care is just beginning. But maybe it shouldn’t have any future at all.    END CREDITS That’s your episode of Commons for the week. If you want to support us, click on the link in your show notes or go to commonspodcast.com This episode relied on work done by Sharon Riley at The Walrus, Kenneth Jackson at APTN, Dustin Galer, Madeline Burghardt, the team behind Hope is Not a Plan, and many, many others I want to give a special shout-out to Aimee Louw at The Walrus for all of her help.  If you want to get in touch with us, you can tweet at us at @COMMONSpod. You can also email me, Arshy@canadalandshow.com This episode was produced by me and Jordan Cornish, with additional production by Tiffany Lam. Our managing editor is Andréa Schmidt. And our music is by Nathan Burley.  If you like what we do, please help us make this show. Click on the link in your show notes or go to commonspodcast.com   I think you should be getting our newsletterGet a weekly note about our top stories.This is a good thing that we do. 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November 6, 2017
No Protest is Genteel: On Antifa
Live from Vancouver: We speak with organizers Garth Mullins and Annie Ohana to unpack what it means to resist fascism in BC. Featuring Hadiya Roderique and guest host Sandy Garossino.
November 21, 2017
Invisible Victims: How Police Botched the Robert Pickton Case
Support us at commonspodcast.com Jonathan Marchand is one of the thousands of young disabled people living in long-term care. But Marchand doesn’t want to fix the system. He doesn’t think it can be reformed. Marchand is an abolitionist. For a century and a half, Canada has hidden away disabled people in institutions where they were neglected and abused. Is long-term care just the latest incarnation of this dark history?   COMMONS: Pandemic is currently focusing on how COVID-19 is affecting long-term care in Canada. Featured in this episode: Jonathan Marchand, Sharon J. Riley (The Walrus), Kenneth Jackson (APTN News), Madeline Burghardt, Dustin Galer To learn more: “When Is a Senior No Longer Capable of Making Their Own Decisions?” by Sharon J. Riley in The Walrus “‘Sitting duck’: Disabled woman, 27, lives in Toronto seniors home with COVID-19 outbreak” by Kenneth Jackson in APTN News Working Towards Equity: Disability Rights Activism and Employment in Late Twentieth-Century by Dustin Galer Broken: Institutions, Families, and the Construction of Intellectual Disability by Madeline Burghardt  Hope Is Not a Plan   This episode is sponsored by Freshbooks Additional music from Audio Network   TRANSCRIPT:    EPISODE 10 – “BURN IT DOWN”   COLD OPEN [ARSHY] Until 2010, Jonathan Marchand had a pretty normal life. He has muscular dystrophy, but that hadn’t been too much of an impediment for him.     [JONATHAN MARCHAND] I always had a disability. It’s a degenerative disability, so I walked until the age of 15. After that, I started to use a wheelchair and I didn’t need much help in my daily living.   [ARSHY] Jonathan’s a senior network engineer. He’s worked for different internet service providers in Quebec and in Australia. He has a partner he’s been with now for 18 years.   [MARCHAND] I was working. I had an active normal life, I had lots of projects for the future.   [ARSHY] And that’s how Jonathan expected things to go. But he didn’t really understand what his condition could do to him.   [MARCHAND] I was ill-advised by my doctors as well. I didn’t know what was in store for me. No one neither ever told me. So I was pretty ignorant about what could happen.   [ARSHY] And in 2010, it happened. He wasn’t feeling well, so he went to see a doctor. They discovered he had a bad case of pneumonia. Jonathan got sent to the ICU.   [MARCHAND] In the ICU there’s two weeks I don’t remember what happened.   [ARSHY] All he remembers are the terrifying hallucinations he experienced.   [MARCHAND] The only recollections of those two weeks are hallucinations, where people are torturing me, basically setting on fires, stabbing me, and, you know, all kinds of horrific experiences like that.   [ARSHY] When he finally came to, the doctors spoke to him.   [MARCHAND] And what they told me is that I would never come out of the– of the hospital because I was dependent now on a ventilator to breathe and there was no option to go back home.   [ARSHY] It was devastating news. And according to Jonathan, his doctors said that the best thing for him would be to refuse further treatment, and that would mean certain death.   [MARCHAND] And what they were pressuring me, pressuring me to accept these euthanasia, three different doctors had that talk with me and tried to pressure me into accepting that. And I spent a few weeks just looking at the ceiling, trying to work out what I was going to do, if I was going to indeed accept to, to be euthanized. Eventually, I refused because I wasn’t ready to die.    [ARSHY] Jonathan wanted to live. He had adapted to major life changes before. He could make his way through this, too. And for two years he tried to get out of the hospital and back to his own home. But the government insisted that his care needs were too high. They weren’t willing to pay for it. So Jonathan had to take the only option that was left on the table. At the age of 35, Jonathan Marchand moved into a long-term care home. I’m Arshy Mann and from Canadaland, this is Commons.   PART ONE [ARSHY] From the minute he moved into his long-term care home outside of Quebec City, Jonathan Marchand knew he didn’t belong there.   [MARCHAND] The first time I entered here, I was shocked. Really shocked. I got really depressed when I entered. And I stayed in my room for about three years and a half. I never went out of my room. I just stayed inside.    [ARSHY] Jonathan was promised that the CHSLD would be a place where he would have more autonomy and personal space. But he says it was just another hospital.  Many people would be surprised to find out that younger people like Jonathan Marchand end up in long-term care homes. We think of them as seniors homes, places where elderly people go at the end of their lives. But that’s the wrong way to look at it. These aren’t old age homes. These are places that house disabled people. They’re asylums. Now, that might seem like an odd claim because, of course, the vast majority of people who live in long-term care are quite elderly. But you don’t end up in long-term care just because you’re old. We know that 70 percent of people in long-term care have some form of dementia or other cognitive issue. The rest need help with some kind of physical ailment. Almost everyone who lives in long-term care is disabled, or perceived by the government to be disabled. And when Jonathan Marchand sees how differently the pandemic has affected people in long-term care, compared to the rest of the population, he sees it as a legacy of generations of discrimination against disabled people.   [MARCHAND] On one side you got the old and the disabled, living in long-term care facilities, dying by the thousands. And on the other side, you got the real citizens who contribute to society.   [ARSHY] And the institutionalization of disabled people has a long and dark history in this country. And it goes back all the way to the founding of the nation. The first institutions for disabled people in this country were founded shortly after confederation.   [DUSTIN GALER] These institutions, they were all part of the state-building process in the late 19th century, just as much, I think, as residential schools.   [ARSHY] That’s Dustin Galer, a historian and the author of Working Towards Equity, which covers the Canadian disability movement.    [MADELINE BURGHART] The first total institution for people with intellectual disabilities was opened in Canada, just outside Orillia, in Ontario, on the shores of Lake Simcoe in 1876. And the first name of that institution was the Orillia Asylum for Idiots. So that really demonstrates the kind of language that was used at the time. My name is Madeleine Burckhardt and I am an instructor in the School of Health Policy and Management at York University.    [ARSHY] The initial idea was to provide rehabilitation and training. And then people would then be sent back to their communities.    [BURGHART] Well, that sort of rehabilitative model shifted pretty quickly into what I call an “incarcerative model,” where people were not really receiving education or training very much. It was more just being housed.   [ARSHY] From the beginning, these places were overcrowded and underfunded. Abuse of all kinds was rampant. And people who were seen as deviant or non-conforming often ended up being housed there. Children from poor families, or women who were deemed unfit to raise a family, all ended up in these institutions.   [GALER] And particularly, they would treat adults with physical and intellectual disabilities and mental health issues with whatever the latest treatments were at the time. And of course, this often involved hard physical labor, isolation, electroshock therapy, all under the supervision of doctors.  And often, you know, it’s important to remember that disabled people were deposited here by families, often under the sincere belief they would be better off.    [ARSHY] By the turn of the century, a new perfidious idea was making its way through the Canadian medical and political establishments — eugenics.   [BURGHART] This was really being promoted as sound, good health policy. You know, that this was going to be good for the general population if we could rid the population of people who were considered feeble minded. And this was absolutely believed and absolutely promoted and institutions were a tool for that movement.   [ARSHY] The epicentre of this movement was Alberta. In 1928 the Albertan government passed the Sexual Sterilization Act. Children with disabilities in these institutions were amongst the many undesirables who were forcibly sterilized, usually without their knowledge. The law wasn’t repealed until 1972. But by the middle of the century, the tide had begun to turn against routine institutionalization.  Journalist Pierre Berton exposed the conditions inside the Orillia asylum in 1960.    [GALER] And people were just horrified by what they saw. People were just flocking around in diapers, and no, no semblance of care being had. Or, you know, overmedication, these types of things. And this actually helped start a movement to deinstitutionalize people with physical disability, intellectual developmental disabilities, and mental health issues.   [ARSHY] Mothers of disabled children pushed back against efforts to have their kids institutionalized. They argued that they should be supported at home, instead. And the arguments resonated. The institutions began to close.    [GALER] But the problem with the response to deinstitutionalization was that governments… They didn’t really commit enough resources to build out an adequate network of community services. So, a lot of the time, it was… It was almost seen as a cost-saving measure, like this movement to deinstitutionalize people kind of overlapped with the desire to reduce budgets.    [ARSHY] Many disabled Canadians ended up homeless, living in shelters, in chronic care in hospitals, and of course, in nursing homes in long-term care. But it was around this time that disabled Canadians found new avenues to advocate for themselves. Disability was becoming an identity.   [GALER] So there were different disability movements. But a big one that emerged in the 70s and 80s were consumer activists. So, these are people with disabilities, themselves, pushing back, demanding greater rights to protect them.    [ARSHY] And an important part of these movements was confronting the caregivers who once claimed to speak for disabled people. Disabled people made it clear that they are their own best advocates. By the 2000s, disability rights and liberation movements were widespread. But many disabled Canadians continue to live in institutions that don’t serve their needs, where they’re abused and neglected. The Huronia Regional Centre, first known as the Orillia Asylum for Idiots, only closed down in 2009.   PART TWO [ARSHY] So what makes long-term care different from these earlier institutions for disabled people? I think if we’re being honest, it’s not much. And a major reason why is that there are specific processes that happen when you’re institutionalized. By their very nature, they’re dehumanizing. Let’s start out with how you end up in long-term care.   [SHARON RILEY] We have seen surveys coming out of provinces like B.C. where advocates have surveyed nursing home residents and found that at least half of them say they don’t want to be there.   [ARSHY] That’s Sharon J. Riley, an investigative journalist, and a longtime friend of the show. She recently tackled this very question in a big feature she wrote and reported for The Walrus. There are some people who plan for long-term care, but that’s not the majority. For a lot of the people who are deemed to have dementia or another intellectual disability, it starts with a capacity test.   [RILEY] A capacity test is a tool that’s used to assess someone’s mental capacity. It’s important to note that mental capacity is not about how smart you are. It’s about your ability to make decisions, taking into account the implications of those decisions. When an assessor who’s measuring capacity is trying to make that determination, they can ask you all sorts of questions. They can ask you questions about your living situation. So say, “What would happen to you if you fell at home,” or ask you questions about how you pay your bills. “What would happen if you continue living at home?” “What would happen if you moved to a nursing home,” and sort of assess whether you understand the implications of each of those things. Not whether you want it or not, but whether you understand what it means. But an assessor can also look at cognitive abilities as sort of a way to feed into this determination. And that’s where things get a little bit tricky. ‘Cause there are many different cognitive tests out there. They can ask you kind of jarring and weird questions. Being asked, “Can you draw a clock face? Can you name as many words as you can think of that start with the letter ‘F’?” Can you say ifs, ands and buts three times and given a time limit on each of these things? So you might be very flustered. You might have 30 seconds to name as many words as you can think of that start with the letter F. Also, another test that can feed into a capacity assessment, though it is not measuring capacity itself, is measuring depression. So you might be asked questions like, “Do you feel pretty worthless right now, or is it wonderful to be alive?” These are, like, word for word questions on a depression scale assessment. And those answers can also feed into an assessor’s determination of whether or not you have mental capacity.   [ARSHY] These tests often last only 30 or 45 minutes. If the assessor decides that you don’t have the capacity to make your own decisions, from that one interview, the state can take over life. You can lose control of your finances, and they can force you to leave your home and go live in long-term care.   [RILEY] So the implications of the capacity tests can be enormous. Even though it can be short and the questions can seem strange, in the end, the assessor can decide to take away some pretty huge liberties that we enjoy as adults.    [ARSHY] For the majority of Canadians, there are few ways to fight the decision. Ontario is the only province that even has an appeals process. But that’s not the only way that people end up in the system. Many, like Jonathan Marchand, are forced into it because the government says that there’s nowhere else they can get the level of care that they require.   [JONATHAN MARCHAND] They could not give me enough hours of assistance the whole day. There are hard caps on the hours that you can get in Quebec. It’s around 44 hours a week and I needed 168 hours a week.   [ARSHY] Or take the case of Cayleah Lamarsh.    [KENNETH JACKSON]  He’s a nice person to speak to. She’s very helpful. Always available.   [ARSHY] That’s Kenneth Jackson, a reporter with Aboriginal People’s Television Network. He’s been reporting on Cayleah’s situation from the beginning of the pandemic. Cayleah was abandoned by her mother at a very young age. By four, she was a Crown ward. And by eight she was in a group home.     [JACKSON] So you can just imagine at that age, eight. By then, that’s almost pure hell. For the most part, right? Like, that’s a lot of damage, you know, on a young developing mind.   [ARSHY] She was abused in various homes and, by 18, she aged out of the system. And by 21, she was homeless.   [JACKSON] She was on a Toronto bus. The freak accident, and she got flung forward and smashed her neck or shoulder off one of the poles, and she’s paralyzed from the waist down. And there was nowhere for her to go. So she went into a long-term care home. And she knows that she doesn’t want to be there. She’s been trying to get out. Even the doctor that first saw her says, “You don’t belong here. We can’t care for you. There’s nothing here for you.”   [ARSHY] Cayleah doesn’t need care 24/7. She just needs some help with things like getting out of bed or bathing. But long-term care was the only option presented to her.   [JACKSON] Caylee was abandoned in a child welfare system. Now she’s abandoned in a long-term care system. The long-term care one, that’s for life. She has a life sentence in that home.   [ARSHY] And Jonathan Marchand says that, once you’re inside, you’re simply not treated like a person.   [MARCHAND] Basically, you’ll lose your citizenship when you enter a long-term care facility. You become an object that we warehouse away. An object of care and profit.   [ARSHY] You become an object of care. Something to be managed. Something that has to fit into a schedule and a routine. And when Jonathan describes what that’s like, it sounds exactly like what people with intellectual disabilities had to face in places like the Orillia Asylum for Idiots.  Here’s Madeline Burkhart again, talking about what life in that institution was like decades ago.    [BURKHART] There’s so many thousands of little decisions that we make for ourselves every day that we’re just taking away from people. So there’s that whole dehumanization, as well. Like even just deciding what clothes to wear, or when to turn the lights off, when to get up in the morning, when to go to bed at night. What you are going to eat, how long you would take to eat your meal… All those things were controlled. All aspects of your daily life was organized and imposed from above, from the administration of the institution.   [ARSHY] And here’s Jonathan Marchand talking about what life is like today in long-term care.   [MARCHAND] It’s incredibly difficult because when you enter, you lose control over your life in all aspects. You don’t have any choice over who touches your body to provide you assistance. You’ve got no choice or control. At what time are you gonna get up? When you go to bed, what time are you gonna eat? What you gonna eat? Um, what time are you gonna go to the toilet? Basically everything is managed for you.   [ARSHY] And in these institutions, both past and present, the residents or patients or inmates, are forced to conform to the needs of the staff.   [BURKHART] And you can understand it when you think about… If there were hundreds, sometimes thousands of people living together, you can’t organize that many people in a way that allows individual choice and freedom. And so the administrative needs of the institution always superseded the individual desires and needs of the residents.    [MARCHAND] Whenever there’s a conflict between your well-being, your rights and the rules, the law and the way the services are organized, it’s, it’s always the latter that wins.  In an institution, you need to keep the peace here and you need to stay in your lane, to stay quiet. They want you to be obedient. They want you to be kind at all times. You got to be a good cripple, right? You got to do what they say.   [ARSHY] If you’re not obedient, if you don’t stay quiet, you can be restrained. In Ontario in 2010, 16 per cent of long-term care residents were physically restrained on a daily basis. That number is now down to around four per cent.  Often, this is done because people are violent or a danger to themselves. But it’s still undeniably inhumane.  And then there’s the use of chemical restraints. Long-term care residents are often given anti-psychotic drugs, even if they have not been diagnosed with psychosis.   [RILEY] You can imagine that an antipsychotic drug has a lot of the same side-effects symptoms of waning mental capacity. So if you administered an antipsychotic drug, you can become very lethargic, you can become very confused. You can seem less interested in life in general. It’s… It’s a pacifier, essentially. It might make it much more difficult for you to manage your daily tasks.  So even if you went into a nursing home with mental capacity that was quite robust, if you were making a big fuss, if you’re complaining all the time and becoming a real disruption to all the other residents, it’s not out of the realm of possibility that you might be administered antipsychotic drugs just to calm you down, which could then further the case against you that your mental capacity is waning.   [ARSHY] A 2011 investigation by the BC government found that over 50 per cent of people in long-term care were on some kind of anti-psychotic medication. Many of them did not have any kind of documented diagnosis for psychosis. It’s true that historically, abusers have been attracted to the power that working in these kinds of institutions gives them. But that’s not the majority of people.   [BURGHART] We are horrified when we hear stories about staff doing terrible things in institutions, but we don’t make that easy.   [ARSHY] The systems that are set up almost demand that the residents are treated in these awful ways.    [BURGHART] It’s just harder, plain and simple, to be kind when you are looking after that many people and being asked to help 10 people to have a bath, or asked to help 20 people to eat their dinner, or whatever it may be, it takes away the opportunity for–for real care, I think. Institutions do not make it easy for people to be really kind and provide the care that we all are entitled to.    [ARSHY] If you’re in an institution, you lose control over almost everything.    [MARCHAND] And it goes even further than that. My experience is that they even want to control the way you die,   [ARSHY] At one point, when Jonathan was in the hospital, he wanted to just go home, whether or not he got the care he needed, even if it put his life in danger. But Jonathan was told that he couldn’t.   [MARCHAND] But he told me, “No, it’s dangerous. You can’t do that. We need to ensure your safety and we’ll go to court to stop you from going out.”   [ARSHY] This was coming from the same people who were pressuring him to end his own life. But they wouldn’t let him choose how.   [MARCHAND] So even in death, they want to control the way you die. So that’s… That’s messed up. You become an object to them that they have to keep track of. And an object doesn’t have any kind of rights whatsoever. You got to be this passive thing. I think it’s incredibly dehumanizing, and I don’t want to be part of that system anymore. I want to get out. I want to be able to live my own life according to my own values and be able to contribute to society like everyone else. I don’t see how anyone can live in a place like that. Frankly, I think humans are not made to live inside institutions.   PART THREE [ARSHY] In his first few years in long-term care, Jonathan Marchand considered acting on the advice so many medical professionals were giving him. Euthanasia.    [MARCHAND] Most people were pushing me toward euthanasia. You know, that conversation was coming up over and over again. So I started to get really depressed at that time. Um, and I was seeking, uh, ways, uh, to end my life. So, I was in this mindset that there was so way out, and death was my escape. But something happened. Eventually on the Internet, I met on Facebook… I met with other people with disabilities outside of, uh, Quebec. In Canada, in the United States, in Europe and in Australia, who had needs similar to mine, who were using ventilators or needed 24 hour assistance. And they had that assistance in their own home. And they were working. They had partners. They are… They had a normal life. So I was like, what the hell? Why can’t I get that in Quebec?   [ARSHY] Before long-term care, Jonathan had never been an activist. He didn’t think much about disability rights or liberation before he was trapped in this home. Once he started to connect with other people like him around the world, Jonathan realized he wasn’t the problem. His disability didn’t mean he had to live in long-term care. There are lots of people, just like him, living in their communities, having a normal life. And he saw how other people had gotten those changes made. Disabled people themselves have to demand it.    [MARCHAND] That’s the key. Because when you rely on third parties to do the work for you, oftentimes you end up with, uh, crumbs or, you know, things that, um, don’t respect your rights and don’t lead to your emancipation.   [ARSHY] He co-founded a cooperative with some friends to lobby the Quebec government to provide funding so people like him could live at home. And he argues that it’s actually cheaper to do that, than house people in long-term care.   [MARCHAND] There are no economic arguments against that proposition. Actually, you are throwing money away by continuing to invest in institutions.   [ARSHY] Throughout this season of Commons, we’ve been telling you about how underfunded and understaffed the long-term care system is. How we need higher standards of care, more resources, better training. But Jonathan thinks all of that is bullshit.    [MARCHAND] I think long-term care facilities should not exist. Um… It’s, um, something that’s been put in place to exclude and eliminate people with disabilities from society.   [ARSHY] Jonathan is in favour of abolition.   [MARCHAND] The idea that we can have good institutions is false. These places are designed to deprive the, the freedom of people with disabilities and the elderly. It’s incompatible with life.   [ARSHY] Jonathan believes that all institutions, whether it was an asylum 150 years ago, or long-term care today, are dehumanizing by their very nature, that more money isn’t going to fix this, that reform isn’t going make people’s lives better. Instead, we need to burn it all down. Let disabled people live in their own homes. Give them the money they need to hire caregivers that will come to them. Jonathan’s still fighting to get out of long-term care. He’s done dozens of interviews with the press. He’s tried to reach out to Quebec’s premier, François Legault, but all his calls have gone unanswered. And even if he does get out, he’s worried.    [MARCHAND] I’ve been inside for 10 years now and I’m starting to forget how it’s like to be living in the community like everyone else. When you enter a Long-Term Care Facility, it’s like your world shrinks from day-to-day, week-to-week, month-to-month, year-to-year, until your world becomes your–your room or the, the hallway, or the staff that surrounds you. If  I think too much about the future, when I have no future right now, I mean, it’s incredibly demoralizing. It’s, uh.. It can even be dangerous because, when you suffer a setback, then you can lose hope. And so I try to live day-by-day as much as I can. But I want to expand my world.   OUTRO For a century and a half, we have put disabled people in institutions against their will. Long-term care is just the latest iteration of that. For Jonathan, it all comes down to discrimination.   [MARCHAND] It’s a big cultural and systemic issue. People with disabilities are discriminated against every day, at all levels. And it goes even as far as to the idea that our lives are not worth treating and it’s better to be dead than to be disabled.   [ARSHY] Even as the pandemic has killed thousands of people in long-term care, he doesn’t expect things to get better.    [MARCHAND] So, there’s no political will that I see to really change things. And that’s what makes me very angry. There are solutions. We can do better. But it’s off the table, even now with thousands of people dead. What has been announced to change things, turn things around? Next to nothing. And if we don’t do something collectedly, they’re going to get away with it.   [ARSHY] The debate over the future of long-term care is just beginning. But maybe it shouldn’t have any future at all.    END CREDITS That’s your episode of Commons for the week. If you want to support us, click on the link in your show notes or go to commonspodcast.com This episode relied on work done by Sharon Riley at The Walrus, Kenneth Jackson at APTN, Dustin Galer, Madeline Burghardt, the team behind Hope is Not a Plan, and many, many others I want to give a special shout-out to Aimee Louw at The Walrus for all of her help.  If you want to get in touch with us, you can tweet at us at @COMMONSpod. You can also email me, Arshy@canadalandshow.com This episode was produced by me and Jordan Cornish, with additional production by Tiffany Lam. Our managing editor is Andréa Schmidt. And our music is by Nathan Burley.  If you like what we do, please help us make this show. Click on the link in your show notes or go to commonspodcast.com   I think you should be getting our newsletterGet a weekly note about our top stories.This is a good thing that we do. 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December 11, 2019
DYNASTIES #7 – The Olands
For 150 years, the Olands have been one of Canada’s most prominent brewing dynasties, the makers of Moosehead Beer. But in the last decade, they’ve made the news for much darker reasons. Richard Oland was murdered in 2011. And police and prosecutors believe that he was killed by his only son.
January 8, 2020
DYNASTIES #8 – The Regans
Gerald Regan was the premier of Nova Scotia, the founder of a powerful political dynasty, and one of the most prolific sexual predators in Canadian political history. Even after his death last November, few in the establishment are willing to recognize, let alone reckon with, his crimes.
January 22, 2020
DYNASTIES #9 – The Harts
The Harts are Canada’s first family of professional wrestling and one of the most famous dynasties the country has ever produced. And sure, wrestling is scripted. But what happens when reality begins to invade that fiction? The story of the Harts is one of triumph and tragedy that transcends the world of pro wrestling.
February 5, 2020
Introducing: Cool Mules
A new investigative series about the cocaine smuggling ring inside Vice Media.
March 1, 2020
Our New Season: RADICALS
Our new season is about the people who go to extreme lengths for what they believe in.
March 12, 2020
RADICALS #1 – Nazi Island in the Sun
It’s one of the most audacious plots in North American history. Turn a Caribbean island nation into a criminal state — then use the money to fund Neo-Nazis and Klansmen across Canada, the US and Europe. The scariest part? They almost pulled it off.
March 18, 2020
RADICALS #2 – They Buried Her Heart at Wounded Knee
There have been books and songs and plays written about Anna Mae Aquash. But she was no folk hero — she was flesh and blood. A young Mi'kmaq woman who took up arms against the United States government, Anna Mae was a revolutionary. But when she was found murdered in the South Dakotan countryside, it tore her movement apart. It took thirty years to find out who pulled the trigger. But that’s not the same thing as knowing who’s responsible for her murder.
April 1, 2020
RADICALS #3 – The Last Pandemic
It began as a mysterious disease from a far off place. It turned into the deadliest plague humanity has faced since the Black Death. AIDS has ravaged and reshaped us in so many ways. But in Canada, the battle against AIDS wasn’t just a fight against a virus. It was a fight against a system that didn’t care if some people lived or died.
April 15, 2020
An emergency season: PANDEMIC
A new season of COMMONS
April 27, 2020
PANDEMIC #1 – 33 Dead in Dorval
They were found abandoned in the facility. The conditions were described as “akin to a concentration camp.” Within two weeks, over thirty of them would be dead. The story of the Résidence Herron in Dorval, Quebec is a national shame. And a preview of the carnage still to come.
April 29, 2020
PANDEMIC #2 – When the Plague Came
Why did Commons drop everything and focus in on long-term care? Because the vast majority of deaths are happening in those homes. Because we should have known that was going to be the case, but we let it happen anyways. And because the level of suffering, isolation and trauma happening in long-term care today is almost too much for us to face up to.
May 2, 2020
PANDEMIC #3 – McKenzie Towne
The McKenzie Towne Continuing Care Centre has experienced the deadliest COVID-19 outbreak in Alberta. But some people say that their loved ones were killed by neglect at McKenzie Towne long before the pandemic even began.
May 6, 2020
PANDEMIC #4 – Ontario Reaps its Dividends
Over 1700 Ontarians have already been killed by COVID-19. And the vast majority of them died in long-term care. But if you live in a private, for-profit home, you’re much more likely to die from this virus. The for-profit long-term care industry is politically powerful and deeply entrenched. Is this their moment of reckoning?
May 13, 2020
PANDEMIC #5 – Shirley and Tracy
Tracy Rowley lost her surrogate mother to COVID-19 in a long-term care facility. But she’s determined that Shirley Egerdeen doesn’t become just another statistic. Tracy’s suing the company that runs the home. But one of the strangest things in this story is exactly who owns them.
May 20, 2020
PANDEMIC #6 – Northwood
Over the last two months, Nova Scotians have endured tragedy upon tragedy. The worst mass murder in modern Canadian history. A helicopter crash and the death of a Snowbirds’ pilot. And all the while, COVID-19 ravaged the biggest long-term care home in Atlantic Canada.
May 27, 2020
PANDEMIC #7 – The Frontline
Long-term care workers are in the vanguard in the war against COVID-19. They’re not the kinds of workers who get movies or TV shows made about them. In fact, their stories are rarely told. But not only are they battling heroically against this pandemic. They’re fighting for recognition and respect within a system built to marginalize them.
June 3, 2020
BONUS: The Honest Fakery of Wrestling
Wrestling is very real and Stampede Wrestling helped build World Wrestling Entertainment. Damian Abraham, host and creator of The Wrestlers, explains in this week's bonus COMMONS episode.
June 10, 2020
PANDEMIC #8 – Hunger Strike
Innis Ingram’s mother is his hero. But today, she’s living in one of the worst hit long-term care homes in Ontario. She has a terminal illness. Dozens and dozens of people around her have died, including her friend and roommate. And she’s had minimal human contact for three months. But even though he can’t be there with her, Innis is determined to get her the care she needs.
June 17, 2020
PANDEMIC #9 – Mend the World
After a stroke left him locked in his own body, Rabbi Ronnie Cahana has found ways to lead an incredibly full life. Then the pandemic came. It swept through Quebec, leaving a trail of devastation. Today, Rabbi Cahana is one of the thousands of Quebeckers left stranded in the middle of one of the worst disasters in modern Canadian history.
June 24, 2020
PANDEMIC #10 – Burn It Down
Jonathan Marchand is one of the thousands of young disabled people living in long-term care. But Marchand doesn’t want to fix the system. He doesn’t think it can be reformed. Marchand is an abolitionist. For a century and a half, Canada has hidden away disabled people in institutions where they were neglected and abused. Is long-term care just the latest incarnation of this dark history?
July 8, 2020
PANDEMIC #11 – It Didn’t Have To Be Like This
Four months after the first outbreak in a Canadian nursing home, over 7000 long-term residents have died of COVID-19. But if you look at the news or social media or our political debates, it seems like we’ve already moved on. Maybe that’s because it feels like this kind of tragedy was inevitable during a pandemic. It wasn’t. And we know that because in some places in Canada, politicians and public health officials made decisions that saved hundreds, if not thousands of lives.
July 22, 2020
PANDEMIC #12 – The Most Dangerous Story
In the final episode in our series about the COVID-19 pandemic and the crisis in long-term care, we’re going to tell you a different kind of story. A story of hope. About how the people we treat as disposable, can have lives of joy and dignity. And about one place where they were given exactly that.
August 5, 2020
Introducing our new season…
Stories about the power the police wield in Canada, and about the lengths they’re willing to go to hold on to it.
October 7, 2020
THE POLICE #1 – Julian Fantino
Julian Fantino may be the most famous cop in Canadian history, but during his rise, people critical of the police had a way of finding themselves in the crosshairs.
October 14, 2020
We Need Your Support
We want to keep doing this work. So this week we’re reflecting on the year behind us and talking about our goals for the future.
October 20, 2020
THE POLICE #2 – The Secret History of the RCMP
The RCMP is one of the most famous police forces in the world — the red serge and stetson hat are practically synonymous with Canada. But that image obscures the profound power the Mounties have held throughout Canadian history. And the dark legacy of ethnic cleansing and genocide at their core.
October 28, 2020
THE POLICE #3 – Dirty Tricks
He called himself the General. And he was at the heart of the RCMP's biggest scandal.
November 11, 2020
THE POLICE #4 – Starlight Tours
Thirty years later, we know some of what happened to Neil Stonechild. But we still don’t have justice. 
November 25, 2020
THE POLICE #5 – Toronto’s Finest
A Toronto police officer shoots and kills two Black men and is accused of beating another, all within a five-year span. He’s never found guilty of committing a crime. And he continues to rise through the ranks.   
December 9, 2020
THE POLICE #6 – Who Killed Myles Gray?
Myles Gray was an unarmed man who died after seven Vancouver police officers beat him mercilessly. Half a decade after he died, not only does his family not have justice, they don’t even know the names of the people who killed him.
December 23, 2020
THE POLICE #7 – The G20: Conspiracy
In the first of a two-part series on the G20, two mysterious strangers start volunteering with activist networks in southern Ontario. It’s all part of one of the biggest undercover police operations in Canadian history
January 13, 2021
THE POLICE #8 – The G20: Fortress Toronto
When John and Susan Pruyn came to Toronto, they were hoping to protest against the G20 and then spend some time with their daughter. Instead, they would be caught up in a whirlwind of police misconduct with few precedents in Canadian history.
January 27, 2021
THE POLICE #9 – Northern Patrol
For three decades, much of Northern Ontario has been engaged in an unprecedented experiment in policing. It’s called the Nishnawbe-Aski Police Service. And the idea is simple: the old, colonial cops shouldn’t be policing Indigenous territory. Instead, Indigenous people should police themselves.
February 10, 2021
THE POLICE #10 – Portapique
Almost a year after the worst mass shooting in modern Canadian history, Nova Scotians are still in the dark about what exactly happened. A gunman, dressed in an RCMP uniform, driving an RCMP cruiser killed 22 people.
February 24, 2021
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