Advocacy & Activism
MPA: The Inmates' Utopia
- Understand the power of activism in mental health communities
- Appreciate the empowering attributes of democratic structure and shared accountability in grassroots mental health groups and projects
- Recognize that service users often know what they need and can play an active role in the provision of appropriate services
- Appreciate the contemporary relevance of history
Artefacts in Context:
Evaluating the Artefacts:
MPA: Self-Guided Learning 1
The 36-minute Canadian documentary The Inmates Are Running the Asylum: Stories from MPA, is an excellent learning tool for exploring advocacy, activism and promising mental health practice. Early MPA members still feel passionate about the group that they founded and wanted to make a film that would demonstrate the effectiveness of MPA and its continued relevance. They worked collaboratively with academic scholars and young artists and filmmakers to create this engaging documentary. The Inmates has been screened across Canada and in Britain.
Available online and in most college and university libraries, The Inmates can be viewed in class or independently and used as the basis for the Peer-Directed or Self-Directed Learning activities.
Additional MPA artefacts include the Democracy is a Very Radical Idea book chapter and the linked How MPA Re-formed Community Mental Health exhibit, both of which can be used as stand-alone learning resources or in combination with the film as a basis for a wider exploration of mental health advocacy and activism.
Have students use the following topics to guide their viewing of The Inmates and reflections about the film:
- Grassroots organizing, democratic structuring of mental health alternatives
- Implications of receiving government funding – the impacts on grassroots organizations
- Understanding madness as a social movement
- Housing and homelessness
MPA: Peer-Directed Learning
After your students have viewed the documentary, use the following questions as prompts for discussion. Set up different areas in the classroom (or on the course learning management system) as laid out below with questions on a large sheet of paper and markers for students to jot down thoughts, ideas and responses.
Allow students around 10 minutes for their first station, 7 minutes for the second station, 5 minutes for the third station, 3 minutes for their final station, working through as many questions as possible (quality of discussion over quantity). Once the students have worked their way through the different station, have them return to their first station to review and highlight the best 2 answers for a class report-back. Modify activity based on length of time available. This activity adapts well for online use. Activity timing does not include watching the film.
Station 1: Structure and influence (what it did for people) of the MPA
- How did someone become a member of MPA?
- MPA can be understood as a therapeutic community where people could function and be accommodated as needed for their mental health experiences. Describe the strengths of the MPA in creating supportive communities and how they made a difference in the lives of those involved.
- What were the different ways in which MPA enacted a democratic structure?
- Discuss the many ways in which the paid work at MPA worked against the common experience of being excluded from the labour force. Why is this significant in the lives of psychiatric consumer/survivors?
- Eventually MPA became a bureaucratic organization that organized under a top-down structure of power. What were the negative implications of this?
Station 2: Madness as a Social Movement
- How do you understand the concept of liberation or liberatory struggles? How does that relate to MPA? Have you ever thought of the concepts of mental health and liberatory struggles together?
- What is the difference between the MPA as a service and the MPA as an activist social movement/community.
- What was In a Nutshell? Discuss the significance of this publication.
- MPA experienced difficulties as a result of taking funding from the government? How can this inform mental health funding for consumer/survivor run programs of today?
Station 3: In the Context of Mental Health Professionals
- What does the historical context of deinstitutionalization have to do with the development of the MPA?
- What is the difference between top-down and bottom-up practice in the context of mental health work?
- What are some of the ways that the MPA counteract the possible negative implications of professionalism?
- What inspires you as future MH professional from watching this film – what do you take from it, and how might it inform your approaches and practice?
Station 4: Contemporary Relevance
- Poverty is a major issue for people diagnosed with mental illness. How was MPA able to address this issue?
- Is there still a need for services that are open beyond standard business hours? Would they be beneficial to how we approach mental health services, why or why not?
- Housing first is a contemporary approach to addressing the major social issues impacting people diagnosed with mental illness. How did the MPA set-up housing? What did the housing and living agreement look like? How could this practice be beneficial to housing first approaches to mental health?
- What do you think a modern or updated MPA would look like – what would you need to make this happen?
MPA: Self-Guided Learning 2
Customize the station exercise outlined in MPA: Peer-Directed Learning into a 4-point response sheet that reflects your learning goals for the film and the time which you have available for this exercise. Students watch the film, either in class or outside of class-time, and complete their worksheets. These worksheets then serve as the basis for a focussed Whole Group Discussion or online discussion board. Activity timing does not include watching the film.
Movie Making - Thinking about Process
Inmates filmmakers Lanny Beckman and Megan Davies wrote a book chapter about the process of creating the documentary. Use the following questions as the basis for a written or oral reflection on the book chapter. If they have not had personal experience in either role, ask them to reflect on the issues raised in the text. This works as an online or an in-class exercise.
- What are the implications of the different positions/identities/roles that the different stakeholders take up in terms of energy, contribution, compensation, confidence, power and access to things like technology?
- What is the value of collaborative academic-community projects like The Inmates?
The Toronto Scene: Advocacy & Activism
- Understand that mad activism is a social and cultural movement which fosters positive individual and community identity
- Appreciate that advocacy and activism function differently to promote social change
Artefacts in Context:
Evaluating the Artefacts:
The Toronto Scene: Visualizing Ideas
Use the Learning Lens and Artefacts in Context sections of this unit to introduce this artefact to your students and to discuss the difference between advocacy and activism. Then have students view the Toronto Activists video either in-class or online, instructing them to watch it purposefully for examples of advocacy and activism.
Taking the definitions of advocacy and activism presented in the Learning Lens above, have your students further develop these definitions by visually depicting examples of advocacy and activism found in the film and their impacts on the lives of the people they see on the screen. They can do this by creating a mind map, illustrating written thoughts or developing an infographic.
Making Madness Political, by David Reville
- Understand activism as pragmatic and strategic rather than just ideological and/or dogmatic
- Appreciate the personally transformative impact of community change work
- Explain between the role of media and popular culture inside marginalized groups and outside the mad movement as shaping broader societal attitudes
Project community expert David Reville wrote a 6,000-word political autobiography for History in Practice, making an argument that mental health must be understood as political. He then worked with secondary student Bryn Coates-Davies and historian Megan Davies to turn his essay into a dynamic archival scrapbook of audio and video-taped oral history excerpts, photographs and political ephemera. The result is a rich set of documents, photographs and spoken memories that are excellent lecture or project materials, helping students appreciate community change work as multi-faceted and as transformative – both for individuals and for groups of people. This unit also speaks to what allows people like Reville to emerge as strong community leaders and to stay active: education, community, institutional support, key allies and mentors.
Artefacts in Context:
Born in 1943, David Reville’s psychiatric history dates back to the mid 1960s, when he spent two years in the Kingston Psychiatric Hospital. His post-asylum life story is a history of the rise of a national mad movement in Canada, but it is also the tale of a remarkable and inspirational individual who has refused to accept the stigmatizing labels associated with a mental health diagnosis. “Crazy like a fox,” Reville is a former plumber and politician, a “mad” scholar, teacher and activist, community consultant for organizations like CMHA and CAMH, and an important and influential elder on the Canadian and international mad scene. In 2015 Queen’s University awarded him an honorary doctorate. Reville’s activism maps onto major mental health issues and events on the national and local scene.
Evaluating the Artefacts:
Reflecting on Context
Biographies help us link individual accounts of advocacy and activism with the larger movements they tie into. Have students reflect on activists that they are familiar with from other social movements and compare or contrast these stories with the narrative of David Reville. Use the questions below as a guide to frame a discussion or oral reflection about madness as a social movement.
- What are the different political issues that Reville raises as relevant to the consumer/survivor/ex-patient/Mad community?
- What role did the political climate of the 60’s and 70’s play in organizing around patients’ rights?
- David mentions a number of other key people in the development of the consumer/survivor/ex-patient/Mad movement. Who were they and what did they contribute?
One Document / One Photograph
Have students read Making Madness Political at home and bring to the class 1 document and 1 photograph from Reville’s scrapbook that illustrate his evolution from patient to activist. Students present their documents in small discussion groups or through using the course learning management system and use them as an opening for considering how Reville’s memoir supports the argument that madness is political.
Order of Canada
The Order of Canada, one of the highest honours that a Canadian citizen can receive, is awarded in recognition of outstanding achievement, dedication to the community and service to Canada. The Order’s motto Desiderantes meliorem patriam (“They desire a better country”) underscores the fact that it is an award for people who enrich the lives of others and make a real difference. David Reville has received recognition from the Canadian Mental Health Association, the ARCH Disability Law Centre, the Council of Canadians with Disabilities, an Honorary Doctorate from Queen’s University and a Queen Elizabeth II Golden Jubilee Medal. The Order of Canada seems like the next logical step.
Using information from his Making Madness Political text and making reference to specific items from his scrapbook as evidence of Reville’s community change work, have students write a 250-300 word Order of Canada nomination statement.
Making Madness Political: Self-Guided Learning
David Reville's 6,000 word autobiography is linked to audio clips, documents, letters, photos and other memorabilia which can be used in a variety of ways including: a flipped classroom resource, lecture material, a source for student presentations or research papers. Students can work online to prepare for evaluating the artefacts in this section by reading Reville's autobiography and sampling the items in his scrapbook before class.
Instructors can use one of more of the following unit takeaways to guide student learning:
- Understand activism as pragmatic and strategic rather than just ideological and/or dogmatic
- Appreciate the personally transformative impact of community change work
- Explain between the role of media and popular culture inside marginalized groups and outside the mad movement as shaping broader societal attitudes
Making Madness Political - An Activist Autobiography by David Reville
It's Christmas, 1965 and I'm an involuntary patient on Ward 16 of the Ontario Hospital, Kingston, one of the province's 10 mental hospitals. There's a Christmas party. I am observing, sourly. I take up my pen and make an entry – the first – in my hospital journal.
In the beginning...Christ our Saviour is born.
This is not your average mockery. The Kiwanis Club is
here en masse dispensing cigarette lighters and hard candies.
Gordie is trying to eat his new lighter. We even get a Santa.
The guy is half in the bag but I guess that helps with the ho-ho-ho.
There's a present for me under the fake tree – a book from my brother-
In-law Robert. My parents have overlooked Christmas this year; perhaps
they don't feel like celebrating. Funny, neither do I.
It's my own fault. Two weeks ago, I made a drug-and-alcohol-fueled speech about the inalienable rights we have to take our own lives. Trouble was I made the speech to two psychiatrists who promptly certified me as dangerous to myself and, perhaps, others.
Note #1 - An early reader reported confusion about my romantic entanglements. Which wife was that? She wanted to know. This might help straighten out some of the tangles:
|1968-1972||Katrina||One son, one daughter|
|1972-present||Cathy Jones||Step mother of the children from 1968-1972; grandmother of the daughter of my daughter|
I should have known better. After all, it was my third appearance in a mental hospital. I made the speech anyway and here I am, sourly observing a Christmas party on Ward 16. My situation is about as bad as it could get: my wife has bundled up our son and moved back to Kitchener [See Note #1]; the hospital authorities have convinced her that it would be best for me if there were no contact between us for at least six months. I am facing criminal charges. And, of course, I am certified insane.
I feel insane, watching the Christmas party. I know that I am being observed and that a negative entry will be made on my chart at the end of the shift.
Patient refuses to enjoy Christmas party. Paranoid. Not well oriented as to time and place. Exhibiting writing behaviour.
Some months from now, I will be making an entry in my journal and it will occur to me that the journal should be published. When people learn what`s going on in here, they will be outraged, they will rise up and demand sweeping changes. I shall be vindicated and awarded a medal.
The journal is packaged up, smuggled out and mailed to a major Canadian publisher. Soon, they will know. Except that I never hear back from the publisher. Undaunted, I make contact with a local printer and begin discussing the cost of printing. Within days, I am called to the nurses` station: did you send this to the printer? So much for the vanity press.
When I am finally discharged from hospital--16 months later--I buy a used IBM Selectric typewriter, sit down, do a re-write, add a top and a bottom and send the result off to a major Canadian publisher. This time, I do get a response: "we are sorry that we cannot make you an offer to publish at this time."
Now I am daunted. How am I going to tell the world? The world will wait, innocent, for a long, long time.
The journal was published, eventually, four different times. The first was in 1981 and the publisher was the editorial collective of Phoenix Rising, the Voice of the Psychiatrized. Here I am on the cover, standing behind an embarrassing overcoming narrative headline – from Kingston Psychiatric to City Hall. And get a load of the shoes.
But I'm getting way ahead of myself.
On April 18, 1967, I was discharged from the hospital and, as fate would have it, I emerged directly into the Summer of Love. And, in Kingston, the SoL was to be found at Queen`s University to which I immediately repaired. There, I was adopted as a sort of folk hero by a band of university students of artistic temperament. We quickly became a family – the Torpor Family named after the torpor that seemed to overcome us when we had drunk enough London Red Table Wine or smoked quite a lot of dope. It turned out that many members of the Torpor Family had had encounters with madness, though none quite as dramatically as I.
I soon found a way to tell the world what was wrong with our mental health system. I submitted an article to the Queen's Graduate Quarterly and – blammo! – there it was, out there at last.
Except nobody noticed.
I began to write short stories instead. And poetry.
I got myself a poet's outfit – a leather cap, Mexican cowboy boots, some green plaid pants. A friend and I published There come aknockin on my head, my collected poems. I sold my slim volume on the corner; the bookstore in Brantford, my home town, bought 30 copies, not on consignment, but outright. Woohoo! I was delighted to learn that the Canada Council would buy 6 copies of any book of poetry, regardless of its merit. Hot dog!
I became a best-selling poet, 1000 copies of Aknockin were sold. Today I can visit my poems in the Ryerson University Library, should I be so inclined.
A few of the poems were "mad" poems. Something had been begun.
Note #2 - For a wonderful biography of Gwendolyn MacEwan , see Sullivan, Rosemary. (1995) Shadow Maker: The Life of Gwendolyn MacEwan. Toronto. Harper Collins.
Those of you who know your CanLit appreciate the amazing poets we have here in Canada. The allstars - Margaret Atwood, the Shadowmaker - Gwendolyn MacEwen [See Note #2] and Leonard Cohen.
But Kingston, in those years, was replete with poets – Michael Ondaatje, David Helwig, Tom Marshall, Tom Eadie, Colin Norman, Doug Fetherling. Maggie Helwig was 6 years old but already you just knew she'd be an incredible poet, novelist, activist and essayist when she grew up.
Shameless, I took my poetry book to some "real" poets; they were kind. One of them especially liked "a hail of golden lancets," which is what happens when you throw away a lighted cigarette.
But I had not yet learned that I needed to make madness political.
Instead, my girlfriend and I moved back to Toronto and, after a couple of weeks living in the house of Danny Drache, Marxist, soon-to-be York U professor, we moved into a rooming house at 40 Homewood, just across the street from Allan Gardens. This was not just a rooming house; it was a bolt-hole for failed revolutionaries, artists and draft dodgers.
Again, a high percentage of the residents of 40 Homewood had had encounters with madness. Go figure. However, all we managed to achieve was a lot of chat about how fucked up it all was. We were pre-occupied with how to eat without giving in to The Man. It wasn't easy.
And so it went, for five years. I'd married a young woman I met in the mental hospital and we had two children. I went off to several entry-level clerical jobs and I didn't do well. I didn't get it. What was required was to arrive on time and look busy. This sounds simple but it wasn't simple to me. I kept getting fired and, eventually, I had such a terrible c.v. that no employer would take a chance on me.
And then, a miracle happened. I moved my family into a communal house and I met a bunch of people who were managing to survive, notwithstanding they claimed to have rejected the premises of capitalism. And there I met a woman who would later become my life partner, Cathy Jones. She was a feminist, a socialist and an artist. She didn't care that I had been in a mental hospital.
Did she anticipate what would happen when I got some validation? Maybe. She was already a community activist. She was a pioneer in the campaign to allow parents to be involved in their children's education. She was a community organizer in a hot and progressive community in Toronto in the early 70s. She hooked me up with all of the people who were working for change in the east end of Toronto.
The first person she introduced me to was Barry Morris. He was a street minister for the United Church`s Christian Resource Centre. Barry, in his turn, introduced me to Don Weitz and Allan McChesney. And these two introductions would change the course of my life.
Note #3 - To learn more about self-labelling, see my webdoc "self-labelling and identity"; it's available on YouTube.
Note #4 - Beam, Alex. (2001) Gracefully Insane: Life and Death Inside America's Premier Mental Hospital. New York. Public Affairs.
Note #5 - See "Schizophrenic Shit-Disturber." Burstow and Weitz (Eds.) (1988) Vancouver, New Star Books. p. 285.
Note #6 - Reaume, G. (2000) Remembrance of Patients Past: Patient Life at the Toronto Hospital for the Insane, 1870-1940. Toronto. University of Toronto Press.
Don Weitz I call the father of Canadian anti-psychiatry; Don rejects the title and, instead, describes himself as an anti-psychiatry activist [See Note #3]. Don had a horrific experience in the famous McLean Hospital [See Note #4] in the 50s. He was subjected to insulin shock; it damn near killed him [See Note #5]. Somehow he ended up in Toronto working as a psychologist in the Queen St. Mental Health Centre, Ontario's largest provincial mental hospital [See Note #6]. In 1972, Don quit his job in protest against what he called "barbaric treatments", among them, cold wet packs; a patient would be wrapped in cold wet sheets and "chilled" for hours at a time.
Note #7 - I was delighted to be part of the solution to this problem, a dozen years later. Hansard. Ontario Legislature. 1985/10/21. See Appendix #1.
When I met Don, he was looking for ways to attack psychiatry; that sounded good to me. Not long after that, Don and I went up to Queen's Park to meet with Stephen Lewis, then leader of the NDP; we wanted his help in ensuring that patients in mental hospitals were able to vote. The problem was that they weren't enumerated and were, therefore, ineligible to vote [See Note #7].
The next year Don took himself off to Vancouver. He wanted to see, first-hand, what the Mental Patients Association, established in early 1971, was up to. For 11 days, Don lived in one of MPA's five houses. He came back to Toronto determined to start a similar self-help group. In August, 1977, the Ontario Mental Patients Association was founded at All Saints Church at the corner of Dundas and Sherbourne in Toronto's east end.
Note #8 - Mr. Allan McChesney (LL.M. '89) has been selected as one of three Law Foundation of Ontario (LFO) Community Leadership in Justice Fellows for the 2009-10 academic year, and will partner with the University of Ottawa's Human Rights Research and Education Centre (HRREC). Mr. McChesney, Senior Legal Researcher at Reach Canada, will explore possibilities for cross-disciplinary research and education, professional training and public education on disability and law issues; he will contribute to efforts supporting "Barrier-free Access to Courts for Persons with Disabilities" in conjunction with Reach Canada, practicing lawyers, law students and other community stakeholders; and he will occasionally guest lecture on law and policy issues related to disabilities and disability accommodation in Canada and at the international level.
The other person to whom Barry Morris introduced me was R. Allan McChesney [See Note #8], a young lawyer who was looking to open a store-front law office. It was an idea with legs. In our search for funding, I got to meet the local MP and bureaucrats from the federal Department of Justice. Within a year, Neighbourhood Legal Services was up and running; our staff consisted of a lawyer, three community legal workers and Company of Young Canadians worker. The house we rented on Seaton Street was too large for NLS so we were able to give space to another fledging organization Operation Springboard whose mission was to help ex-cons re-integrate. I was NLS' first chair. My interest in ex-psych patients was reflected in NLS' workplan; we planned to teach ex-patients about their rights under the new (1968) Mental Health Act.
Note #9 - NLS was Ontario's first community legal clinic with a neighbourhood board. (Toronto's law schools had clinics but they had clinical objectives i.e. they were training lawyers in poverty law). Today there are 71 community legal clinics in Ontario.
I was to learn a whole lot about public policy from the NLS experience. And about the nature of grassroots groups [See Note #9].
Note #10 - Shorter, Edward & Healy, David. (2007) Shock Therapy: A History of Electroconvulsive Treatment in Mental Illness. Toronto. University of Toronto Press. The authors claim that because of the public revulsion at the shock scene in One Flew Over the Cuckoo's Nest, psychiatrists began to see ECT as a treatment of last resort; Shorter and Healy argue that it should be a treatment of first resort.
Back in the madness world, not much was happening in the early 70s. Then, in 1975, the whole world got a glimpse of life in a mental hospital. "One Flew Over the Cuckoo's Nest " starring a young Jack Nicholson won fistfuls of Oscars. Quite apart from the effect the Cuckoo's Nest had on public policy [See Note #10], the movie kickstarted my career as a public speaker. That's because I appeared on a national breakfast television show called Canada AM. The producers were looking for someone with two characteristics: he/she had been a patient in a mental hospital and he/she was prepared to talk about it on television.
So, early one morning, a limo arrived at my door and I was whisked off to a studio on the eastern edge of Toronto. By that afternoon, congratulations and offers were appearing on my answering machine.
Note #11 - Yes, it would. However, you'd need to be careful about the brick you chose; too soft and the brick would began to disintegrate and that would prevent the flapper valve from closing properly and you'd end up using more water. Too bad I didn't invent the dual-flush toilet just then.
A New York literary agent enthused about selling my journal to a BIG publisher. The CBC came calling; it was planning a show about downward mobility and a lawyer who had become a plumber was just what they were looking for. Within weeks, the mayor of St. John's, Newfoundland suggested that people could save money by putting a brick in the toilet tank; would the downwardly mobile plumber care to comment [See Note #11]?
Note #12 - Still called "aldermen" in those days.
In 1969, there was a sea change in municipal politics in Toronto. Two city councillors [See Note #12] were elected in east end on a platform of community inclusion in decision-making. Interested, I began canvassing for one of them in the 1972 election. Two years later, I was elected chair of the Winchester Community Council, a new form of parent-teacher association that saw the school as a community resource. Immediately, the school community came under attack by a developer who wanted to raze single-family houses and replace them with a forest of high rises. Off to City Hall, I went as a tribune of the people. I began to learn about zoning and density and planning and power politics.
Note #13 - Carla went on to become a leading mental health lawyer.
Don Weitz brought a new person into the mad activist community; a survivor of ECT, Carla McKague [See Note #13] was studying to become a lawyer. Later, she would later work in a specialty legal clinic called the Advocacy Resource Centre for the Handicapped. Don and Carla and I wanted to publish a book of survivors' tales. "Voices" began to solicit contributions; my "Don't Spyhole Me" piece was an early entry. In the end, the project failed – we just couldn't get enough material. Don would revive the project, this time with feminist therapist Bonnie Burstow as co-editor in the mid-80s. Shrink Resistant: the struggle against psychiatry in Canada was published by New Star Books in 1988.
A madman goes to City Hall
By 1980, I had become deeply involved in lefty politics in east Toronto – at the school board, at City Hall and at Queen's Park. I had worked my way up in the electoral politics ranks, initially as a canvasser and later as a member of election planning committees. I was the sign chairman for Gordon Cressy's almost successful provincial campaign in 1977. The following year I was the fundraiser for both Gordon Cressy who was running for City Council and for George Martell who was running for the school board. In the same year, I raised money for Bob Rae's lst federal campaign. In 1980, I was selected as Gord Cressy's running mate; we were hoping to keep both Ward 7 positions for what was then called the reform movement. Me, I wasn't a reformer; I was a New Democrat. At the time, the NDP was starting to nominate and/or endorse candidates for City Council and the School Board. Riding Gordon Cressy's formidable election machine, I was elected to City Council in the 1980 election.
For a mental health activist, I couldn't have picked a better time to get elected. The botched deinstitutionalization of psych patients was causing havoc in South Parkdale; the neglect of provincial mental hospitals was creating ever more dramatic news stories; the emerging mad movement was starting to make its presence felt. Over the next five years, mental health was always on the agenda; here are some of the items: the Heseltine Report, the Peat Marwick Report, OPSEU's Madness report, the campaign to stop electroshock, the Mayor's Action Task Force on Discharged Psychiatric Patients, the personal care bylaw, the rooming house bylaw, the as-of-right zoning for group homes, a threat by the Mayor to take over the Queen St. Mental Health Centre, the refusal of the Metro Toronto Housing Authority to accept mentally-ill tenants, the homelessness crisis, illegal boarding and lodging houses, the Back Wards to Back Streets conference, three inquests into the deaths of patients at Queen Street, the emergence of the Psychiatric Patient Advocacy Office, Tent City, the Boarding House Lunch, [post 1985 – the inquest into the death of Drina Joubert] Robert Dimun, [post 1985, the takeover of Channan Court, the Joseph Kendall inquest] a number of police shootings of people with mental health histories, Timbrell Town, Larry Grossman tours the boarding and lodging houses, the Supportive Housing Coalition, Pat Capponi and David Reville win Public Distinction Awards from CMHA Toronto in successive years, the funding of the Mad Market [post 1985 – the funding of Fresh Start Cleaning and Maintenance and the funding of AWAY Express; the opening of the Gerstein Centre.]
Note #14 - Later, Pat decided that she'd made a mistake by encouraging the growth of supportive housing. Her complaint was that supportive housing created lots of jobs for housing and support workers but left all sorts of psych survivors on the outside looking in.
Not long after I went to City Hall, I starting hearing about a woman in Parkdale who was raising a ruckus about the plight of roomers and boarders. In early 1981, I met Pat Capponi for the first time; she was receiving an award from CMHA Toronto. She told me her issue was decent housing for discharged psych patients. She said she had plans to bring the issue to public attention. Wow! Did she ever! There, on television, is the Minister of Health, dressed down, and totally unable to suppress his shock at seeing the conditions in which discharged psych patients were living. Pat didn't let up. The next thing we know a Toronto Star reporter has sneaked into a boarding house pretending to be poor and vulnerable and daily in the Star we read about the horrific lives her roommates are leading. Not to be oudone, City TV sends JoJo Chintoh out to pose as a homeless person; he, too, starts sending dispatches about life on the margins. The Minister of Health stands up in the Legislature and undertakes to take swift and effective action; the first money is found for supportive housing in Ontario. Pat and I become founding members of the board of the Supportive Housing Coalition [See Note #14].
Telling them doesn't do it; you gotta show 'em
What Pat knew was that it wasn't enough just to talk about it, you had to show the politicians what you were talking about and you had to invite the media along, especially TV cameras. My guess is that Pat learned this during her time at college in Montreal; students knew about the press. Yes, occupy the President's office but, if nobody saw you doing it, you might as well have stayed home. You call the press and tell them what time you're going in. Later, we both discovered that showing wasn't enough, either. We were going to need a much more sophisticated strategy. Trouble was, we couldn't get mad people to agree on what the issues were, let alone how to work them.
A madman goes to Queen's Park – and gets lucky
You can't count on luck but when you get some, you're lucky. I've been lucky a lot. When I showed up at the Ontario Legislature, I was on the brink of all sorts of luck. I'd been lucky before – lucky to be born into a middle-class family, lucky to get out of the mental hospital directly into the Summer of Love, lucky to be elected an MPP just after the Charter of Rights was causing provincial parliaments to review all of their legislation to bring it into compliance. One piece of legislation that was badly out of whack was the Mental Health Act [See Note #15]. And who better to have something to say about that than a person who would have been subject to it had there been one when he was in the mental hospital?
Note #15 - I had never been subject to the Mental Health Act. The first Ontario Mental Health Act was written by Barry Swadron in 1968, after I had been discharged. 45 years later, I am a member of the Coalition for Independent Psychiatric Patient Advocacy that includes Marshall Swadron, Barry's son. Live long enough…
And there he finds (or drafts) several bills – 7, 190, 10, 50 – and lots of opportunities to make speeches all over the place
By 1985, when I went into provincial politics, I had begun to practice what I would later describe as "interstitial politics", that is, you pick a public policy area which has been abandoned or neglected and you begin to work it. There is no competition and there are few vested interests. You can make headway quite quickly in such areas. So, I took on "user involvement"; it was something that only the most progressive mental health agencies supported but it was something that was an easy sell – of course, people who are receiving services should have some say in what those services are and how they are delivered. It was another form of citizen involvement except, in this case, the citizens in question were among the most marginalized in society.
A little-known opportunity that all back-benchers have is the private member's bill. Any member of the Legislature can table a private member's bill and some members use private member's bills as a way to bring attention to issues they care about. On a Thursday morning in the Legislature, at least in my day – 1985-90 – a private member's bill or resolution could be debated in the House. Who got to present was decided by a lottery and my number came up twice between 1985-90. So, I introduced Bill 10, an Act to Amend the Landlord and Tenant Act. Why? Because years before, when I was the chair of Neighbourhood Legal Services, I had discovered that the people on whose behalf I was advocating had no rights under the L&T Act; roomers and boarders were licensees, that is, they had a license to occupy their room and that license could be revoked without notice and without cause – leading to garbage bag evictions in which your stuff was put into garbage bags and left on the curb. So I introduced a bill that would make boarders and lodgers tenants. And, for some reason or other, the government decided not just to let my bill go through but to suggest some useful amendments. So, Bill 10 was passed into law. At that point, only 6 private member's bills had ever made it into law; I was in exclusive company and very, very chuffed about it.
Note #16 - Actually "re-introduced" is more accurate; Bill 50 was a collection of amendments I had moved in relation to Bill 7; they were ruled out of order at that time.
My number came up a second time so I introduced [See Note #16] Bill 50 An Act to Amend the Mental Health Act. I wanted to enact some community mental health legislation that would require the least restrictive alternative when caring for people with mental health issues. My bill passed on 2nd reading and was sent to committee for study. And there, alas, it died, as do most private members' bills. However, I am told that Bill 50 remains the most comprehensive, most progressive example of community mental health legislation ever. Hah!
I didn't write the two bills all by myself; I got advice and help from all parts of the mental health community, starting with mad people and moving on through mental health professionals and mental health lawyers.
Earlier I mentioned that provincial legislatures had to bring their legislation into compliance with the Charter of Rights and Freedoms. That's what Bill 7 was about. Bill 7 became famous because it spoke to same sex relationships but the bulk of the bill was about the Mental Health Act. Again, I got lucky. The NDP health critic, Evelyn Gigantes, MPP for Ottawa Centre knew I cared about the MHA and she invited me to help her carry that part of the bill. With the help of Carla McKague, we drafted amendments. And, because the luck was really going our way, we were in a minority government situation in which opposition members can be especially influential. We got our amendments and, for a while, Ontario had the most progressive mental health legislation in Canada. It wasn't long before the backlash occurred: the Ontario Psychiatric Association backed up by the Friends of Schizophrenics began to put pressure on the government to amend the MHA. The government introduced Bill 190 which, again, I was able to amend because of the minority situation. This time, I was able to write some amendments that improved the choice people had about whom they could choose to be their substitute decision maker should they become incompetent to make treatment decisions. Lucky me, lucky mad people. For a while, in Ontario, mad people had more rights than not-mad people – a nice turning-of-the-tables, if you ask me.
Something else happened during that period, something that was to change my life and my practice – as a provincial politician I had been "cleaned up" enough to be acceptable to the mental health system as a player. In April of 1985, hard on the heels of a provincial election, I was recruited by John Trainor and Kathryn Church to serve as the "consumer" – read "madman" – of the National Mental Health Services Committee of CMHA. CMHA had been funded by the federal government to run a project called The Framework for Support. It was a conceptual model of how to support a person with serious mental illness in the community. Trainor and Church had written the foundation document in 1984. CMHA was now seeking to market their document and to develop implementation schemes. I got to be part of that exercise. It was a stunning opportunity. At first mystified by the concept – it seemed too obvious to me – I began to learn that in most of the country, the concept was big news. A kind of mental health Johnny Appleseed, I travelled back and forth across Canada explaining the concept to audiences of mental health professionals, academics, government bureaucrats, family members and "consumers" themselves. On the Framework's dime, I also went to Egypt, England and the United States. I learned so much about how to develop and promote new public policy. And I met almost everybody who was anybody in mental health, not just in Canada, but all over the western world. The thing that made it all palatable was that a key concept of the Framework for Support was self-help. For a conference in 1988 at the University of Sussex in the UK, Kathryn Church wrote me a paper called User Involvement in Mental Health Services in Canada. To my surprise, the paper was seen as leading edge public policy. The paper was published several times, first by British Mind, CMHA's counterpart in the UK and subsequently by mental health journals here in Canada. Suddenly, I was on the map as a mental health policy maker. I served on the Mental Health Services Committee for three years. I also served a one year term on the board of CMHA National, just as it was beginning to accept consumers on its board.
A madman is appointed Special Advisor to the Premier and becomes ever more popular as a speaker and pundit
I had decided ten years in electoral politics was enough; I was fixing to retire when David Peterson, then premier of Ontario, called the next election, expected in 1990 or 1991. In the 1990 election, after a very slow start, the NDP campaign suddenly caught fire and the NDP won a majority government. The premier-elect Bob Rae asked me to stay on as one of his advisors.
One thing I wanted to use my new role to do was to close Oak Ridge, the maximum security mental hospital in Penetanguishene, Ontario. Oak Ridge had been haunting me ever since I had visited there in the late 80s. I thought it was a terribe place to put people, no matter what they were alleged to have done. The Minister of Health, Evelyn Gigantes, was in favour. We put together a work group and began to sort through the issues. In the end, we couldn't pull it off – a huge disappointment.
The other key thing I did happened almost by accident. In 1990, Ontario went into recession and the Rae government decided to try to stimulate the economy. The premier put the word out to his cabinet – bring me proposals that will create jobs. I picked up the phone and called an old friend in the Ministry of Health. "Now's the time," I said, "we can fund consumer/survivor groups". And that was how the Consumer Survivor Development Initiative took flight. In the first year, some 42 consumer/survivor groups were funded across the province. The next year, the funding was made permanent. Today in Ontario, some ten million dollars flows directly into the hands of mad people to support their initiatives that range from running businesses to publishing newsletters.
Of course, I carried a lot of non-mental health files. One of my most difficult was the basketball file. Several groups of Toronto businessmen put in bids for a National Basketball Association franchise in Toronto. Trouble was, the Ontario Lottery Corporation had an over-and-under game which invited gamblers to pick the margin of victory for, among other teams, basketball teams. The NBA, mindful of gambling scandals that had undermined college basketball, forbids gambling. From the point of view of the province, basketball betting brought in $8 million a year, non-tax revenue. Ontario wasn`t going to give that up for nothing. In the end, my team negotiated a package of benefits that the NBA and the Raptors would provide in exchange for the government giving up basketball gaming.
I spent four years in the Premier's Office. I learned a lot and I regretted a lot. However, when the call came for applications to chair the Advocacy Commission, I cobbled one together and put it in, not quite on a whim but not really expecting to win the competition. You may imagine my surprise when I was shortlisted.
Because of my location in the political environment, I got to be a B team pundit during the 1994 federal election. I did a weekly radio show and, towards the end of the campaign, a breakfast television wrap-up. My job was to be optimistic about the NDP's chances (slim); harder was remaining calm as the Tories plummeted to two seats in the House.
A madman is appointed Chair of the Ontario Advocacy Commission
Beginning in the early 80s, Ontario had developed a patchwork of advocacy services for vulnerable people. There was the Psychiatric Patient Advocacy Office that did rights advice and advocacy for patients in Ontario's psychiatric hospitals; there was the Adult Protective Service Worker program that did the same for people with developmental challenges who were living in the community. There remained hundreds of thousands of vulnerable people who had no advocacy services at all. The Rae government wanted to rectify that; early in its mandate, it brought in a bundle of legislation, the Consent to Treatment Act, the Substitute Decisions Act and the Advocacy Act. The Advocacy Act would establish a commission with broad powers to intervene on behalf of vulnerable people wherever they were. The Act set out a mechanism by which advocacy commissioners would be selected: the disability community would, in fact, elect a slate from which the Minister had to choose. In the result, I was appointed chair and Pat Capponi one of the 12 commissioners, the majority of which, by law, had to be people with disabilities. The story of the Advocacy Commission is beyond the scope of this paper and, in the end, it had a short life: the Harris government repealed the Advocacy Act and dismantled the Commission in March, 1996.
A madman, out of work, starts a consulting company
When I suddenly found myself out of work, I rented what had been the bathroom in an old industrial building. David Reville & Associates (DRA) was going to offer social research and community development.
After a slow start, DRA undertook contracts with consumer/survivor groups and governments including the Ontario Council of Alternative Businesses (now Working for Change), George Brown College, Parkdale Green Thumb Enterprises, Houselink Community Homes (a Toronto supportive housing provider) and the Bank Ombudsman. And I caught another stroke of luck. In 1998, the Queen St. Mental Health Centre, the Clarke Institute of Psychiatry, the Addiction Research Foundation and the Donwood Institute amalgamated, forming what would be called the Centre for Addiction and Mental Health. DRA was brought in to help the four organizations merge. When CAMH decided on a major renewal, DRA led the consultations that lead to an Official Plan Amendment and to the design of the first phase of construction.
I've got two maybe three more stories before I stop. If you're interested in knowing what I've been up to in the last decade, please read "Is mad studies emerging as a new field of inquiry?" Chapter 17. LeFrançois, B.A., Menzies, R. and Reaume, G. (Eds.). Mad Matters: A Critical Reader in Canadian Mad Studies. Toronto: Canadian Scholars Press Inc., 2013.
The revenge of the mad student and the emergence of high-knowledge crazies.
Something important happened at York University in 2005. Lucy Costa, a self-described lunatic, was enrolled as a student; she became increasingly irritated at having to take her professors on for making derogatory remarks about mad people. Lucy already knew some things about self-help; she had worked for the Queen St. Patient Council, the voice of patients in Canada's largest mental hospital. She decided to start a self-help group for mad university students - the Mad Students Society. The Mad Student Society eventually began to produce a new kind of activist; I call these new activists "high knowledge crazies". They have post-graduate educations and many of them are pursuing graduate work in which they start from mad knowledge. Already Ryerson University employs three high-knowledge crazies as instructors; two of them had been Mad Students as TAs and RAs.
Mad Movement shows its sophistication
Note #17 - The story of this action may be found in Costa, L. et al (2012). "Recovering our Stories: A Small Act of Resistance," Studies in Social Justice, 6, 1, 85-101.
A couple of things happened in the spring and summer of 2011 that I believe show the sophistication of the mad movement today and the way in which the existence of funded self-help groups has created a base for ongoing activism. In early 2011, when it became evident that the mental health system had begun to appropriate survivor stories and use them for its own ends, a collective drawn from the self-help movement and the mad-positive academy formed around what it called "hands off our stories" and the proliferation of what it termed "patient porn", the wholesaling of stories of mental illness, despair, treatment and recovery. Seeing this practice as privileging particular kinds of stories (read "recovery" stories) from particular kinds of storytellers (read "middle-class) telling only particular kinds of stories, the Recovering Our Stories collective called the mental health system on the practice [See Note #17].
Note #18 - The coalition quickly set up a facebook group and a website; it developed model letters that activists could send to their MPPs, the Minister and the Ministry. It developed alliances with progressive psychiatrists and with service providers. It got in touch with friendly journalists who wrote "what's going on" columns. As a veteran of many such battles, I have not seen such a quick victory. Mind you, it's not over yet.
In June of 2011, the Ministry of Health unilaterally and quietly announced that it was divesting the Psychiatric Patient Advocacy Office to the Ontario Division of the CMHA. While psych survivors had long criticized the PPAO's location within the Ministry of Health, it did not see CMHA Ontario as a good location for advocacy; after all, CMHA Ontario was the provincial arm of a network of service providers at the local level. By now, tech and media savvy [See Note #18], a group of activists quickly brought pressure to bear on the Ministry and the Minister and, within one month, the Minister announced that she was postponing the divestment pending broad consultation.
Note #19 - If this were a movie, there'd be a voiceover saying "this meeting sponsored by the History in Practice: Community-Informed Mental Health Curriculum project."
In the fall of 2011, three old mad activists bumped [See Note #19] into one another in front of an art gallery on East Cordova in Vancouver's Downtown Eastside. One of the old mad activists was me. There, across the street, a familiar figure. Lanny Beckman, the founder of the Mental Patients Association, looked exactly like himself plus 35 years. I'd been waiting to meet him for the longest time. As he reached my side of the street, a helmeted figure on a bicycle arrived. "OMG," cried Irit Shimrat, as she emerged from under her helmet. "My two favourite madmen." Between us, I calculate 114 years of mad activism. Who knew what would happen as we started to creep out from under psychiatry all those years before?
An Activist Scrapbook
Making Madness Political is based on the argument that politicizing mental health can lead to real gains for people living with mental health difficulties. Have your students use the archive of Reville’s personal scrapbook attached to his piece and visual thinking software to depict Reville’s evolution from patient to activist. What issues has Reville been involved with over time, and why did he put his energy into these actions? What tactics has he used? What does this have to do with identity? Close by giving students an opportunity to share their biographical maps, either online or in class. Instructors who wish to have students practice document analysis can pose questions that encourage students to interrogate items in Reville’s scrapbook as evidence of activism.
Go Nuts! by Irit Shimrat
- Appreciate the diversity of perspectives within the mad community
- Value a radical service user perspective which celebrates mental diversity, simple pleasures, and alternative treatment modalities
The dominant message in the mental health world is that the mad need to be made “normal.” Project community expert Irit Shimrat says sometimes it's great to be nuts; her short 4-minute video celebrates those times, but is also a comment on the need to reclaim and celebrate pleasures. Students can take this message into their mental health practice.
Evaluating the Artefacts:
Go Nuts! is an entertaining 4-minute homage to mad culture. Two unit learning activities explore different facets of community expert Irit Shimrat’s survival and coping strategies.
Go Nuts! Across the Modules
Project community expert Irit Shimrat also made Question Man, another short video for the History and Practice teaching resources. Students can view Go Nuts! and Question Man alongside one another and use them as a basis for an in-class or online discussion of the following questions:
- What are some of the examples of alternatives that Irit gives in place of medicalized treatments like medication and psychiatric intervention?
- (If you are teaching in a professional program) How could [social work / nursing / child and youth workers etc.] incorporate Shimrat’s message into our mental health practice?
Un militant et un universitaire
- Prendre conscience du potentiel pédagogique et des alliances réciproques transcendant les rapports de pouvoir
- Comprendre les différences entre les connaissances et les façons de voir les choses qu’ont les intellectuels et les gens ayant une expérience vécue
Les collaborations entre activistes et universitaires sont rares. Une exception : Eugène Leblanc, directeur d’un groupe de soutien innovateur à Moncton au Nouveau-Brunswick, et Nérée St-Amand, professeur de travail social à l’Université d’Ottawa. Les deux hommes ont mené des recherches et ont publié conjointement depuis leur rencontre en 1987. Des extraits sonores tirés d’entrevues réalisées avec eux présentent leurs projets et leurs opinions sur le système de santé mentale, mettant en relief plusieurs tensions nécessitant une perspective critique afin d’établir un partenariat authentique et significatif.
Les étudiants pourront découvrir les possibilités qu’offrent les collaborations égalitaires qui transcendent les rapports de pouvoir et les cloisons professionnelles ; ils pourront aussi réfléchir à la façon dont ils pourraient établir de telles collaborations dans leur propre pratique.
Artefacts in Context:
Les extraits sonores d’entrevues avec Leblanc et St-Amand démontrent leur vision commune et leur engagement passionné envers l’amélioration du bien-être des personnes ayant connu des problèmes de santé mentale. Leur relation et leur amitié constituent un modèle de collaboration ; ce sont de véritables alliés. L’espace qu’ils occupent est unique en son genre puisque chacun peut y apprendre et évoluer, tout en ayant la possibilité de s’autocritique et de se critiquer mutuellement.
Evaluating the Artefacts:
Des tensions saines dans l’établissement d’une collaboration authentique: Apprentissage autodirigé
Demandez aux étudiants d’écouter les extraits sonores d’entrevues réalisées auprès de Nérée St-Amand et d’Eugène Leblanc afin de prendre connaissance des tensions saines au sein de leur relation et des façons dont les différences entre leurs approches et leurs places enrichissent leur collaboration. Des questions accompagnent chaque extrait.
Extrait sonore 1
St-Amand évoque les reproches que Leblanc adresse aux intellectuels et aux experts, et fait part de sa situation délicate, faisant valoir qu’il partage les mêmes critiques, tout en étant lui-même chercheur.
- Pourquoi cette situation est-elle délicate ?
- Quels avantages réciproques voyez-vous dans cette collaboration ?
- En tant que futur praticien, comment contesteriez-vous les institutions pour lesquelles vous avez travaillé ?
Extrait sonore 2
St-Amand souligne qu’il trouve difficile de distinguer ses intérêts personnels de la cause. En tant qu’universitaire, il profite du travail de soutien mené par Leblanc et de l’expérience vécue par différentes personnes ayant été confrontées à des problèmes de santé mentale.
- Est-ce que la défense des droits ou le militantisme sont possibles sans intérêt personnel ?
- Quel rôle peuvent jouer les intérêts personnels dans la défense des droits et le militantisme ?
- De quelles façons constituent-ils un frein et de quelles façons offrent-ils des avantages?
Extrait sonore 3
À la tête du Groupe de support émotionnel inc., le groupe de soutien qu’il a fondé, Leblanc a constaté qu’il détenait trop de pouvoir. Bien qu’il soit lui-même psychiatrisé, après quelques années, il s’est senti mal à l’aise à l’idée de décider des différentes activités auxquelles les membres allaient être conviés.
- Comment le témoignage de Leblanc sur le pouvoir vous inciterait-il à repenser vos idées sur le pouvoir ?
- Comment pensez-vous que la relation de Leblanc avec St-Amand l’a-t-elle incité à porter un regard plus critique sur le pouvoir ?
- Comment les écarts de pouvoir non-analysées peuvent-elles entraver nos efforts les plus nobles pour établir des collaborations ?
- Quelles sont les mesures nécessaires pour atténuer les déséquilibres de pouvoir dans notre travail ?
Débat en classe ou en ligne
Pour donner suite aux extraits sonores, demandez aux étudiants d’émettre des arguments pour et contre en vue d’un débat en classe sur les questions suivantes :
- Pouvons-nous travailler à la fois pour une institution en santé mentale et dans le véritable intérêt des patients ?
La discussion peut avoir lieu en ligne en utilisant le forum de discussion. On divisera les en groupes et chacun établira ses argument et réfutera les opposants.
Appel à la responsabilisation : du militant à l’universitaire (Apprentissage autodirigé)
Lire le commentaire que St-Amand a soumis à Notre Voix, n° 8 (été 1990), dans lequel il réagit au nouveau logo, une oreille, et à tout ce que cela représente, et émet une critique des « professionnels de l’aide » face aux initiatives de soutien des pairs.
- Demandez aux étudiants de lire le commentaire et de répondre aux questions suivantes en prévision d’une discussion en classe ou en ligne.
- St-Amand critique les « professionnels de l’aide ». Identifiez deux de ses arguments qui vous interpellent et dites pourquoi.
- Pensez-vous qu’un point de vue comme celui de St-Amand soit répandu ? Pourquoi, selon vous, a-t-il adopté une telle position ?