Delivering Community Power CUPW 2022-2023

Making the invisible visible: an interview with Megan Linton about the harms of the institutional system, COVID-19, and disability justice

Exploring the past and present of institutions for people labelled with intellectual and developmental disabilities in Canada

Human RightsCOVID-19Social Movements

A ward at the Manitoba School for Mental Defectives, later named the Manitoba Developmental Centre. In the 1960s and 1970s, children as young as six were admitted to the centre. Image courtesy the Archives of Manitoba.

Invisible Institutions is one of the most important podcasts of recent years. Through extraordinary research, interviews, and production, the seven-part project interrogates the devastating and ongoing impacts of institutions for people labelled with intellectual and developmental disabilities in Canada, with episode topics including the history of institutionalization, sheltered workshops, disability and long-term care facilities, and medical assistance in dying (MAiD). It is truly essential and required listening.

Canadian Dimension spoke with Megan Q. Linton, a disabled and mad studies researcher and writer, and creator of Invisible Institutions. Megan’s research on institutionalization and disability has appeared in Canadian Dimension, Briarpatch magazine, the Disability Visibility Project and the CBC. Megan is a doctoral student at Carleton University where she is researching the political economy of intellectual disability, within the Disability Justice and Crip Culture Collaboratory.

Canadian Dimension (CD): How did you first come to be interested in institutions in Canada?

Megan Linton (ML): In my experience in queer, mad and disabled communities there was a few years where everyone around me was dying—killed by their experiences of psychiatrization, criminalization and institutionalization. This forged a really strong understanding that institutions are deadly places.

For those of us who survive these institutions a bit longer, it is difficult to experience institutionalization or hospitalization and not come out fighting like hell. If not by the conditions on the inside, then watching your community be killed in these settings. This isn’t a unique experience, disabled Marxists Marta Russell and Jean Stewart point to institutionalization as the forced historic reality rather than the exception for disabled people.

Growing up in Winnipeg, the reality of institutionalization is difficult to ignore because of the massive scale of institutionalization in the province. The Selkirk Mental Hospital is one of the largest psychiatric institutions that never really closed and has no plans on closing. Alongside Selkirk, the St. Amant Centre in downtown Winnipeg and the Manitoba Developmental Centre in Portage La Prairie are two of the last remaining large scale institutions in western Canada.

Lots of my interest in it came from being within the disability movement in Manitoba and recognizing that there’s still a huge gap between disability organizing and deinstitutionalization organizing and abolitionist work supporting people who are living in institutions.

CD: What was the process for coming up with the project of Invisible Institutions?

ML: The whole project came about during the second wave of COVID-19. I had been working on my master’s thesis, which was more broadly about access to sexuality within institutions. But one of the barriers to this research was a lack of centralized information on the scope or size of institutionalization in Ontario. This lack of centralized information is a huge and intentional barrier to obfuscate the violence and prevalence of institutions. So I set out to create this massive typology of institutions, with a lot of support to include and identify every form of institutionalization occurring.

Bringing these institutions together paints a really explicit portrait of institutionalization today, that of violence, abuse, neglect and ableism. Once I got all of that information, it became evident how urgent this information was. There was, and remains, this really intense urgency because people are dying in these institutions without public awareness or relevant data.

I did several months of grueling days where I was doing briefs for the press, government agencies, and meetings with relevant agencies and organizations. Through this I got connected with Inclusion Canada and People First of Canada’s Joint Task Force on Deinstitutionalization, which includes survivors of institutionalization and people who have been part of the deinstitutionalization movement for decades in Canada. They have done really important work of fighting institutionalization in Canada, and produced the documentary The Freedom Tour.

Through our meetings, we came to understand the need for a resurgence of deinstitutionalization organizing in Canada. Among the concerns was the amount of gaps in information that people need to understand the continuities, connect the dots of institutionalization from group homes to boarding houses to nursing homes. And once more was the theme of urgency—survivors of institutions have been dying at an alarming rate during the pandemic. We were determined that we needed survivors to share their stories with the public: witnessed, written down, and documented.

We sat down and made a plan with many different forms of mobilization tools—policy briefs, presentations, podcasts, and then this national report that hasn’t come out yet—that would document all of these. I think it’s challenging when there’s such a gap of any coverage and reporting to kind of pick people up on the many, many, many loose ends of institutionalization.

CD: What was the process of you personally trying to make sense of this? It seems incredibly overwhelming to do this immense amount of research on material that isn’t easily available. How did you manage to turn this into a coherent set of episodes within a season of a podcast, knowing there’s so much information out there?

There’s a real tension in telling the stories of disability institutionalization. Many of these histories are removed or obfuscated from public education and understanding of disability, and neoliberalism has done its best at depoliticizing disability. Often even within the Left, these institutions are not seen as political, despite being on the frontlines for austerity politics. There is a real need for knowledge building and anti-ableist political education.

At the same time, there is also an acute need for more information. We need to be agitating for more accountability from the state for its role in institutionalization. Provinces and the larger Canada state have a huge stake in keeping these stories hidden, after all, we are still engaged in the mass institutionalization of disabled people. During my undergraduate degree I found myself locked out of the archives of the Grey Nuns, the female religious order responsible for enacting colonial violences through genocidal assimilation schools (residential schools), and they were the creators of many of the foundations of institutions in Manitoba, northern Canada and Québec. I became increasingly concerned about the happenings in the institutions and the extensive history that remains obfuscated by current governmental and Catholic archives (for more on this, see Mary Horodyski’s work on MDC). This is an ongoing challenge in telling these stories.

Each episode’s themes, guests and institutions were chosen with consultation from the Joint Task Force advisory council. Each episode began with me going to the chaos corkboard with every single piece of information, interview, audio clips, newsreels and newspaper clippings that I found and talking to Helena, who’s the sound producer and co-conspirator about how we were going to tell the story soundwise.

The first episode focuses on two institutions in Smiths Falls, Ontario. The Rideau Regional Centre was one of the largest institutions in Canada and now operates as a mall. The class action settlement agreement didn’t have lots of provisions for document preservation. As a result, much of this was following all these bread crumb trails that survivors have left behind. A survivor wrote down that one of the cemeteries in Smith Falls has iron crosses in a back corner that represent the babies who were killed in the institution. There’s not really much information on that cemetery, but there was a trail, one that I had to follow to the corners of Smiths Falls cemeteries.

Across the street from the Rideau Regional Centre there’s another institution that makes the Regional Centre seem like they are forthcoming (they’re not). That institution, Shardon Manor, is private which means there’s no information at all. So in that instance it really is me digging through the municipal records trying to find when it opened and who applied for the occupancy licensing and how many people are part of that occupancy licensing and finding survivors who want to do interviews and are in a spot where they can do interviews. How many people died there? Where are they buried? Those answers are not easy to find.

Selkirk Mental Health Centre when it opened in 1886. Photo courtesy the Selkirk Museum.

CD: There are a lot of podcasts out there that are basically a person talking into the mic, which is totally fine. But what Invisible Institutions has done is a lot more than that. What was the thinking around including all these different types of sounds—interviews, field recordings, testimonies—and why was it important to include this range of audio?

ML: With every episode, we wanted to centre survivor testimonies and voices and stories. Many of these have been documented: there are many amazing people in the field of disability studies who have been gathering audio stories and putting together partial archives and that was really important to this. We’re so lucky to be able to use the Freedom Tour footage, which was made by People First of Canada and includes so many stories of survivors, many of whom are now no longer with us. Being able to carry those stories and those voices of people who were so involved in the movement and we haven’t heard from in a long time—or who have been shunted to the side.

In dreaming up the podcast, and in documenting and archiving all of these things, I definitely built up a collection of materials. One of the examples is that in the media, they never correctly identify institutions, and I just get so overwhelmed by that because it makes it so hard to tell this continuous story. A really big piece of this was bringing together some of that footage and giving it the time and space it needs and not being endowed with ableism in telling this story.

Working with Helena was really an amazing experience and I think so much of the depth of the podcast is a result of our collaboration. I remember the first time I heard one piece of the episode with the sound design in place. Lots of these stories are really, really, really hard and I’ve read them through millions of times and have kind of had to reach myself to grit my teeth through it. But every single time there’s a piece of sound design behind it, it completely transforms the story and brings an affect to it that I think is really critical in building movements and building understanding and calling the state on its violence in an affective way. I’m reading something Helena said, that they were “passionate about bringing in the poetic and narrative richness,” having the textures and adding the layers. That piece is so important.

A huge part of this is that institutions, when you’re in them, you’re completely familiar with the senses and the sounds. But for lots of people, they don’t have those experiences inside. Sometimes, I’ll forget that people don’t spend all their time at the hospital and I’ll be like “you know, the hospital sounds” and they’re like “I haven’t been to a doctor in 20 years, what?” It really is giving people an opportunity to feel. I think even the violence of sound, which is a really big piece of that: being locked into solitary confinement and having fluorescent lighting and all of those pieces that I think we flatten when we say they’re “tortuous” or “devastating.” Being able to add the auditory component just makes it so emotional and I think really anchors it in the reality of these places.

The sounds of institutions are important, but since we’ve been prevented from accessing institutions, it’s really critical for the story to be communicated in a really rich way to communicate the sounds, feelings and textures of institutionalization. It’s important for people to understand the complexity and wholeness of institutionalized and formerly institutionalized disabled people. Disabled people, for so long, have only been painted as one-dimensional. So we’re really trying to bring the wholeness through sound and through really rich design and intentional storytelling.

Megan Linton. Photo supplied.

CD: The project is also a lot more than the podcast itself: policy briefs, transcripts of episodes, links to resources, and so much more. Was this the plan from the start or did it snowball into these things over time?

ML: We definitely built it on multi-modal themes because I think we’re trying to hit very different groups and people with the different ways of understanding or ways of recommending. One of the pieces is the broadness of this and the level of exclusion that is present means that we’re trying to hit and effect a lot of people and a lot of changes.

What is evident in Canadian disability policy and social movements, is the efficacy of the exclusion of disabled people through institutions. For instance, in discussions on the violence of enforced poverty of disability assistance rates it is important to agitate against the differential stream of social assistance in institutions, where people are afforded just $149 per month.

There are just so many practical, really important changes that can be made right now to really improve people’s lives. The podcast really hits on lots of them but there’s also tactical movement-based demands and abolitionist reforms that aren’t reinstalling this system of institutionalization but are drastically improving the conditions inside—like air conditioning, shelter allowances, internet access and inclusion in data. All of those things, in themselves, aren’t necessarily going to solve this issue but we do need people to survive to get to the next stage of this.

All of these policy briefs were based on conversations with currently institutionalized people. I think to do service to people who are currently institutionalized, we did need some pieces that were practical. I think it would have been a disservice to just have put it in one format, so I did more.

CD: It’s in the title, Invisible Institutions, but I wanted to ask: now you’re done the first season of this and have put in all this time and energy, what are you reflections on the invisibility of these institutions. What is it that has rendered these institutions so invisible?

ML: Kelly Fritsch, a disability theorist (and my mentor, co-conspirator and supervisor) explains that an effective part of neoliberalism has been the inclusion of certain disabled people into the mainstream—disabled people who can be part of capitalism are included. That inclusion has come at the cost of removing and isolating and alienating the disabled people who can’t be rehabilitated into capitalism. Prison abolitionists Angela Davis and Ruth Wilson Gilmore both talk about the benefits for the state of the embeddedness of prisons and institutions as a form of invisibilizing, necessary to make it seem as if capitalism is working.

The state benefits from invisibility, they benefit when no-one knows about institutions. The state benefits from the alienation of disability from the left. I think that’s really the important piece of the invisibility: we’re rendering so much of this suffering invisible. There’s lot of different tactics underway for that to happen. Geographically, placing all these institutions out of town works really well. And then, also, now that we have created a society where disabled people can’t move at all through it because of a refusal to tackle the COVID-19 pandemic, we are seeing lots more alienation of disabled people.

I always feel a little bit disappointed and a little frustrated by the lack of solidarity with disabled people. But I gotta cut us some slack, it’s the fault of this really genius system that seeks to alienate so many people and that effectively kills disabled people and effectively maintains a profit off of people.

CD: What you were saying reminded me of reading some of Marta Russell’s writings in Capitalism and Disability—and how she theorizes the need to understand disability within capitalism and working-class struggle. Maybe something that contributes to lack of attention by non-disabled people in terms of solidarity is the sense that if you’re not working you’re not part of the labour movement and working-class, which Marta Russell’s work really challenges that and positions disability politics as so central to how the labour market is regulated and such?

God, Marta Russell’s so amazing. I think that she does a really great job of pointing to the depoliticization of disability and how powerful that is as a mechanism to tear apart the left when it should be a foundation on creating solidarity.

I feel like institutionalization has a really important piece to contribute to the conversation about the privatization of health care services. Those conversations often don’t happen because the conversation of health care services because we only think about health care in terms of healt care providers. So we think about it about as two diametrically opposed groups of patients and health care workers when we should be forming solidarity across those lines. As patients, we are the people being served and a political class being served. Who is institutionalized? Who is hospitalized at higher rates?

Everyone always says that “disability could happen to you, it’s the one thing that cuts across all lines.” But it doesn’t. That’s something that Liat Ben-Moshe and Marta Russell talk about really well: no, debilitation is a political process that then results in incarceration, that then amounts in institutionalization. In terms of health care conversations: the health care system has been privatized for disabled people since its foundation. It’s not about a beginning of privatization: people inside and the people receiving services know this has always been a foundational part to the health care system.

I think that’s really where lots of the challenges come up. We’re still going to hear to choose from people providing services before we speak to the people receiving them. We need what Artie Vierkant, Beatrice Adler-Bolton and the wonderful folks over at Death Panel call “health communism.” The politicization of disability will be really helpful with the mass debilitation of long COVID.

A ward at the Manitoba School for Mental Defectives. Image courtesy the Archives of Manitoba.

CD: How has institutionalization—and disability more broadly—become more visible during COVID-19? But how has it, potentially, been reconstituted as invisible since governments have seemingly decided that COVID is over? What’s changed or not changed?

ML: I think what has changed is some people are aware of long-term care facilities existing. Which makes no sense to me but I think there was this real, complete lack of consideration of this site as being political. Institutions are at the forefront of privatization, of neoliberalism, of experiencing the violence of austerity. I think in some ways, I’m glad that people started to care about what happened.

But then, I think it’s challenging right now because we think about the last Ontario election, which was so defeatist. The NDP’s promise was 50,000 beds by 2030 and Doug Ford’s solution was 30,000 beds by 2028. None of these are solutions. None of them are politically alluring or popular.

I think that the left needs to do some really critical work on what our plan is, what our strategy is, for these massive health system failures. It’s going to be complicated. This is a complicated issue we need to work though and find a left-populist solution that isn’t just focused on the workers but also the people doing the work of being a patient. A health care revolution is what we need, one that demands deinstitutionalization, free housing, free transit, nationalized home care,

In terms of where we’re at right now, at the end of the day I still don’t have any of the data for the impact of COVID-19 on any institutions across Canada. And we’ll never get that data. We’ll never know how many people this will have killed. We also don’t know how this fits in historically, because there’s been so little accountability on behalf of the government and so little accountability demanded.

I hope that now that we’ve seen some of the violence that’s come to light, some of the horrors, we can dig in and see what else is there. Because we know that this country is rotten to the core and its failures within these institutions are going to have generational impacts on our communities, on what our society looks like, what our social movements look like. I hope that people don’t see this as the crisis being over. The crisis is just beginning. Or the crisis has been 150 years in the making and the “normal” within these settings is violence. If that’s what you want to go back to, then you’re not on the same team.

I think what COVID has done is really bring together disability justice and prison abolition movements. That’s where our allies are and that’s where the fighting for deinstitutionalization has to come from. It’s all part of this broader colonial tactic of removal, confinement, and death. It’s bad. Worse than anyone thinks.

If you look at in Chile, where they signed in a new constitution, it has a massive section on neurodiversity. I think there are some really, really, really exciting pieces. In Canada, no leftist party will ever touch the violence of autism institutionalization because there’s such an alluring pull and so much funding from “big autism.”

But this new constitution in Chile really shows how powerful and revolutionary the disability movement and anti-institution movement and psychiatric liberation movement are, and what opportunities and changes they can bring. Because I think they can be at the front of deindustrializing the health care system and making it about people’s ability to survive rather than driving out their profits.

CD: Finally, what’s next for you and Invisible Institutions?

ML: We have so many more materials from this and full interviews that we’re working on tightening up and getting able to be released. I will be releasing material through the website, and the substack (Institutional Remains). In the next few months the national report will be released, and I am looking forward to bringing it into the world. I think paints a really grim but important picture of institutionalization in Canada that we really haven’t had since 1985. It’s an exciting opportunity for people to begin to reckon with the current realities of institutions.

Personally, I have been working with Briarpatch Magazine on their upcoming Disability Justice Special Issue with the Disability Justice Network of Ontario. I’m finalizing a book manuscript which is thick and clunky and I can already imagine its feeling in my hands someday. For now, I am enthusiastically working through my PhD and learning even more about institutions and their mechanics.

This interview has been edited for clarity and length.

James Wilt is a freelance journalist and graduate student based in Winnipeg. He is the author of Do Androids Dream of Electric Cars? Public Transit in the Age of Google, Uber, and Elon Musk (Between the Lines Books) and Drinking Up the Revolution: How to Smash Big Alcohol and Reclaim Working-Class Joy (Repeater Books). You can follow him on Twitter @james_m_wilt.


URP leaderboard June 2024

Browse the Archive