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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
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
