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Transcript

[The following text displays: “Consumer/Survivor” is a word that people with lived experience of the mental health system use to describe themselves. Consumer/Survivor initiatives are community-based, consumer/survivor-run organizations.]

[Music]

[Photographs start to fade into screen dividing the screen into four quarters. A old photo of a patient laying down wearing an old-fashioned apparatus affixed to his head. Scientific tools. A man outside a house holding a watering can and looking into the camera. A group of people with their arms around each other, dancing. A photo of a page of text titled “Lobotomies and Lobectomies”. A single bed in a small white room, presumably in a mental health facility. Two individuals at desks in front of computers. A number of people seated in a number of rows of chairs. A black and white photo of a woman seated at a table looking distraught with her hand on her forehead. The outside of a church. Three men standing in a kitchen and smiling at the camera. The following text zooms into view “From Mad House to Our House” and is overlaid over the photos.]

[A white building with green and red accents comes into view with the words “Whitby Psychiatric Hospital (buildings closed in 1960)” displays. A narrator speaks.]

For centuries, the response to mental illness was institutionalization - an out-of-sight out-of-mind approach.

Institutionalization wasn't a solution.

[A blue wooden door swings open with a creak revealing a small room with a single bed with a metal frame and a small side table and wooden chair]

People who experience mental health challenges were confined for long periods of time - some even for life in psychiatric institutions.

There were many reasons for this.

[An illustrated image displays of a sad looking female sitting in a single straw bed in a cinder block room with one window with bars on it]

Families often abandoned these patients because they were a great embarrassment, a financial burden and source of anxiety.

[Three dated photos, presumably from an institution, display. One is a lonely looking hallway painted white, one is a disheveled bed with thin mattress and damaged wall and one is the outside of two rooms with a simple wooden chair placed between the two doors.]

Drugs to treat and control mental disorders had not yet been developed and so release into the community with medication to control symptoms was not an option.

[A number of photos transition. The first is a bed that has bars along the sides and tops so when closed the person onside would be confined. Next is a photo of a scientist in front of a large window holding up a flask flask with yellow liquid inside. Next is a black and white photo of a woman seated at a table looking distraught with her hand on her forehead.]

There were other problems with this approach - prolonged periods of restraint and solitary confinement, sensory deprivation, being cut off from one's family and community.

[A photo of a person strapped into some sort of straight-jacket displays.]

[As the narrator reads the next portion the words scroll into view against a brick wall background ending with p.301 (Patricia Deegan, Spirit Breaking, 1990)]

“When we forget that people with disabilities share a common humanity with us, then the human is stripped from the human services and the stage is set for the emergence of the inhuman and the inhumane. “

[An illustration displays of a large concrete room with a man against a wall and another man holding a hose and spraying the first man with it. The screen zooms in on the image until the two men take up the full view.]

A culture of abuse sometimes existed amongst those who worked in the asylums.

[A man leaning on a wooden fence with a green vegetable garden behind him speaks]

“I lived in a situation where a number of the my fellow patients were abused both physically and psychologically and I think that's because in that kind of situation the power imbalance is really significant. That is to say the staff have all the power and the patients have none and in those situations abuse often occurs.”

[A photo displays of a group people. A person is laying on a bed surrounded by several nurses, one of which is holding the patient’s hands down, two men in white sleeveless shirts appear to be administering something into the patient’s mouth and a number of men in suits are in the room as onlookers.]

One of the assumptions of the medical model was that mental health services were operated by professionals who know best.

[A photo displays of two men in lab coats and a patient in a bed who appears to be asleep. The two men in lab coats are pouring something from a container into a funnel connected to a tube which goes into the patient’s nose.]

It was under this model that we saw the introduction of drug treatments - psychotropic drugs were used to treat the symptoms of mental illness.

[An photo of the side of a blue pharmaceutical bottle appears with the name SANDOZ PHARMACEUTICALS, Division of Sandoz (Canada) Limited, Dorval, P.Q. on it]

[A man with gray hair and glasses and wearing a white and black striped button down shirt in a park begins to speak. A blue box with the following white text appears on the screen reading: John Trainor, Co-Investigator and Director, Community Support and Research Unit, Centre for Addiction and Mental Health]

“The real heyday for drug treatment came in the 1950s and has continued to this day. That was the era when we saw the introduction of lithium for bipolar disorder, of the antipsychotics - the early anti-psychotic drugs and a bit later drugs for depression.”

[A video of two men displays. One of the men is holding a pharmaceutical bottle and the camera zoom in on the bottle. The man sets the bottle down on the desk and picks up another bottle, studying it.]

“So, drugs really became the main focus of treatment and in many cases were considered miracle drugs and as is the case with most drugs, the longer they're on the market the more you see that they they may be helpful but they also have some downsides.

[John Trainor comes back into view]

The other risk is a central focus on drugs when there are other important kinds of support and treatment. I think the system as a whole recognizes that but still the experience of many consumers is they largely get given the pills and sent home.“

[As a man reads the next portion the words scroll into view against a brick wall background]

“I was tied to the bed naked and then they left me in the dark with these drugs happening that they had injected in me and I was terrified.”

[As a woman reads the next portion the words scroll into view against a brick wall background ending with the words “mental health consumer”]

“Drugs are able to assist you and they are more an aid to help you through things. I learned that you have to change yourself, too.”

[as the narrator begin speaking again the camera zooms in on piece of electro shock therapy equipment with the words “Electro Shock Therapy Equipment, Lektra Laboratories, Inc., New York, New York” on it]

Electroconvulsive therapy and psychosurgery were also used to treat people with schizophrenia, depression and other severe and persistent mental illnesses.

[The outside of the same building from the start of the video - white building with green and red accents - comes into view and the date 1916 is painted near the top of the building. It transitions to a long building with a red root with the number 22 written in large numbers on the side. It transitions to a hallways with a glass door. Some of the windows are broken and it appears to be abandoned.]

Sociologist Erving Goffman claimed in his book Asylums that most people in mental hospitals exhibit psychotic symptoms and strange behaviour as a direct result of being hospitalized.

[The camera zooms in on a small room with one window and with a single metal-framed bed, small wooden chair and small table with a ceramic wash basic and jug on it. A photo of the movie poster with “One Flew Over The Cuckoo’s Nest” and with a photo of a young Jack Nicholson on it appears.

Counterculture author Ken Kesey's best-selling novel One Flew Over the Cuckoo's Nest is based on his experiences working in the psychiatric ward of a Veterans Administration Hospital.

[A photo displays of an illustrated image of a man sitting on the floor wearing a white robe and holding his knees and then transitions to two very old photos - one of a room with two beds with patients laying in them surrounded by 3 nurses and one of three women that appear to be locked in side-by-side wooden chests with cut outs for the heads to be outside while the rest of their bodies are inside the boxes.]

Kesey's view of the patients he saw didn't really have mental illnesses - they simply behaved in ways that society is unwilling to accept.

[The words Mid 1960’s appear in yellow text against a blue background following by the following bullet points: Civil Rights Movement, Professionals strive for change, Psychotropic Medicines, Cost of Asylum/Hospital system and finally on;y the word Deinstitutionalization appears]

In the mid-1960s, the pressures of the civil rights movement, the drive for change by professionals, the discovery of psychotropic medication and the cost of maintaining the asylum hospital system combined to lead to deinstitutionalization.

[John Trainor comes back into view and begins to speak as his name and title reappear on screen reading John Trainor, Co-Investigator and Director, Community Support and Research Unit, Centre for Addiction and Mental Health]

“Deinstitutionalization usually refers to a process of closing beds in the major psychiatric hospitals and moving people into the community. It started in Ontario and in most parts of Canada in the 1960s. It was very dramatic.”

[A old video of a white hallway appears and the cameraperson films as he walks down the hallway. The view changes to a close up of a man’s hand unlocking a door and as he opens it 7 beds with metal frames, all line up against the right wall appear and the video pans to all the beds as the cameraperson walks into the room. John Trainor comes back into view and continues to speak. A video of a man with long hair and wearing a ball cap comes into view showing him rooting in a large green mental garbage can as people walk by on the sidewalk then transitions to a view of the back of a man pushing a shopping cart down the sidewalk.]

“We've closed over 80% of the mental health beds in Canada even though the population has been growing since the 1960s and really the hope was that people with mental illness could be treated in general hospitals by their own family doctor and the mental hospitals could be for specialized and more complex cases. The problem was that there was a serious underestimation of the kind of support people needed in the community.”

[The narrator speaks as a video appears of two mattresses with sheets and pillows on the concrete ground then transitions to a video of a homeless person sitting on a small ledge by a tree on a sidewalk. The video transitions to a car driving past what appear to be low-income houses and then a closeup of a brick building with some broken and boarded up windows. Then to a man who appears homeless and is sitting against a tree in a park. Then to a man in a tie dye shirt sitting on a sidewalk in a shopping area as people walk past him. Then to a sidewalk covered in water with a plastic fork on it. Then to a homeless man with a long white beard stating in front of a brick building.]

Following discharge from hospital, people with mental health problems often lived in poverty, substandard housing and isolation. They did not have opportunities or support to lead a dignified life with a reasonable standard of living and they were frequently readmitted to hospital.

[A video displays showing a close up of three windows in a yellow and green building then switches to another part of the same building with a doorway and with overgrown grass and paint peeling seeming to indicate the building is no longer in use. Then switches to a video of a slightly beat up large gray apartment building with a stone exterior Then to a man with long hair and a baseball cap sitting on a bench smoking a cigarette. Then to a a man sitting in the grass with his back up against a tree.]

In Canada, 35,000 beds and psychiatric institutions were closed over a 16-year period.

Families were astounded to find forgotten relatives on their doorsteps.

Deinstitutionalization led to a new set of problems because there was insufficient support for people with mental illness in the community.

[A video displays of a close up of a sign reading “Centre for Addiction and Mental health / Centre de toxicomanie et de santé mentale”

The first community-based mental health services came into being in Ontario during the 1970s.

[Yellow text on a blue background displays as the narrator speaks. The title Treatments displays followed by the following bullet points: Encompass Institutional Services, Community Services & Rehabilitation Programs, Case Management & Assertive Community Treatment Teams. This transition to a black and white photo of faded out people walking down a wide hallway in what appears to be some sort of institution.]

Treatments began to expand to encompass institutional services, community services and rehabilitation programs.

With the introduction of case management and assertive community treatment teams came more services in the community, however these services were still operated by human service professionals with little or no input from consumers and little or no emphasis on peer support.

[A video appears of a homeless man sitting on the grass with his back up against a tree.]

Among the outcomes of deinstitutionalization was poverty.

[The video transition back to the man standing in the green vegetable garden and as he speaks the following text displays: David Reville, Psychiatric Survivor and Consultant.]

“I recall a friend of mine saying they don't tell you that when you get out you're gonna have no friends, no money, no job and you're gonna live in
this crummy place. One of the huge difficulties of getting out of hospital is, depending on how long your stay in the hospital has been, you're likely to be absolutely disconnected from anything you're going to meet on the outside of the hospital so your friends are gone, your family may be gone. You don't have a job, you're likely to be poor. “

[Yellow text on a blue background displays with the words “Consumer / Survivor Initiates (CSI’s): The Vision” as light music displays. The screen transitions to two videos - one in the upper left with several people sitting a table speaking and with a white board next to them and another video on the lower right of the screen of a man speaking, These transition to a video closeup of a man with a beard in a green ball cap and a closeup of a person holding some paper and a pencil. These transition back to the group sitting at the table on the left of the screen and then on the bottom right of the screen a closeup of a woman speaking.]

The 1970s and 1980s saw the beginning of a new vision of hope for recovery through community support.

Part of that vision included the belief that consumers could support one another and create changes in the community and the mental health system.

[A video appears of a man opening a door and walking into a building and as the door closes behind him the words “Mental Patient’s Association, 1733 West 4th Avenue “displays. The video transitions to a video from the 1970s of the outside of a house largely covered by a big tree and with a van and small sports car in front. Then to a group of people sitting on a couch and chair and floor, all dressed in 1970s-style clothing and all talking and smiling. The camera zooms in on a couple of the people then zooms out to reveal quite a large group of 10-12 people some of which raise their hands as if wanting to answer a question.]

British Columbia led the way with social movement organizations like the Vancouver Mental Patients Association or MPA for short.

This organization came into being when patients who found their day program inadequate and who were dissatisfied with established
psychiatric treatments developed an informal self-help network.

[An older video shows a logo with a closed first with the thumb and fingers facing out and reading Mental Patients Association Founded 1971 and the word “free” written on the palm of the hand. The view transitions to an older black and white photo of a protest with two signs reading “What about the golden rule” and “Support the therapy victims. Demand an open debate!”. Then transitions to a group of people sitting in what appears to be a living room.]

Calling for alternatives, Vancouver MPA members operated with little funding and a lot of mutual support circulating their phone numbers among members.

[Yellow text on a blue background displays with the title In Ontario… and then “Towards a Shard Direction for health in Ontario (1987)” and “Building Community Support for People (the Graham Report 1988)” and Consumer/Survivor Initiatives 1991. The screen transitions and reads “3.1 Million Dollars” and “Special Project Community Mental Health Branch, Ministry of Long-Term Care” and “Consumer/Survivor Development Initiative 1991” ]

In Ontario, as a result of report, such as Toward a Shared Direction for Health in Ontario (1987) and Building Community Support for
People, (the Graham Report, 1988) funding was directed to the first consumer/survivor initiatives in 1991.

3.1 million was to be committed to a Special Project of the Community Mental Health Branch.

With a staff of six - three consumers and three non-consumers, the Consumer/Survivor Development Initiative began its operations in the spring of 1991.

[ A woman with a ponytail and glasses and standing outside begins to speak]

“We were lucky in that after the first year we were able to secure some more money so that it went from being an employment program to a group development program and exists to this date.“

[A blue screen with a photo of Toronto’s old City Hall and the title Consumer/Survivor Initiatives of Ontario displays. On the left of the screen a number of location names appears as follows: Toronto, Ottawa, Simcoe, Sault Ste. Marie, Brantford, Guelph, Fort Frances, London, Chatham, Oshawa, Elliot Lake, Stratford, Sarnia, Owen Sound, Welland, Peterborough, Mississauga, Simcoe, St. Catharines, Wawa, Richmond Hill, Windsor, Collingwood, Hamilton, Belleville, Smith Falls Geraldton, Kitchener, Bracebridge, Alliston, North Bay, New Liskeard, Woodstock, Kingston, Sudbury, Thunder Bay, St. Thomas, Midland, Pembroke, Aylmer, Kenora, Lindsay, Timmins, Milton, Windsor]

By 1992, 81 full-time equivalent positions had been created by the projects with a total of 307 people employed.

Three quarters of this group had been on social assistance prior to this employment.

[A video appears of the side of a building with a large sign reading “Haldimand Norfolk Working Group of Simcoe “ABEI Enterprises Work Co-Operative Tel. 426-4590”]

In 1993, the Consumer/Survivor Development Initiative became fully operated by consumer/survivors.

[A video of a small warehouse displays where people are building wooden furniture and large wooden toys. The video transitions to three women who are varnishing or painting some wood. Then to one woman varnishing wood. Then back to the warehouse where a man is sanding a piece of wood. Then to another man sanding a dresser drawer which he then places into a dresser. The video transitions to a tall dark pink colour building with a sign reading “PEP People for Equal Partnership in Mental health”.]

In 1996, the newly elected government released 23.5 million dollars to enhance community mental health.

This community investment funding led to the formation of 24 additional consumer/survivor initiatives.

The consumer/survivor development initiatives role changed to support consumer/survivor initiatives and build the consumer/survivor sector.

[A video appears showing several people sitting a table painting individual artwork then to a close up of one woman painting. Then to a small room with two desks and three chairs with a man and a woman each seated at each desk and viewing an 1980s style computer screen. Then to a photo of a smiling woman seated at a large wooden office desk. Then to a photo of three men standing in a kitchen making sandwiches and smiling and facing the camera. Then to a grass lawn with two rows of people facing each other and appearing to toss an item back and forth. Then to a young boy holding a plate of whipped cream ready to throw at one of several people in costume who appear to have already been hit. Three costumes are visible: a banana, a devil with a pitchfork and a clown with balloons.]

This provided key support for the reform process underway at the Ontario Ministry of Health and Long-Term Care.

[A video appears showing 10 people sitting in a meeting room around an oval desk. The camera zoom in on man wearing glasses and speaking. Then back to the group. The zeroes in on man reading a file. Then back to the same man who continues to speak. Then to a cover of a file reading “Ontario Peer Development Initiative” and “Peer support is a lighthouse of caring friends. Celebrate Peer Support Day in Your Community During Mental Illness Awareness Week”.]

In 1998, the Consumer/Survivor Development Initiative started an advisory committee that in turn evolved into a board of directors and in 2001, the Consumer/Survivor Development Initiative changed its name to the Ontario Peer Development Initiative and incorporated.

[Soft music plays. A video displays showing a woman in a ponytail standing and speaking then to another woman wearing glasses then to a small meeting room where five people are seated around a table then to two of those people seated at the table. Then to a sign reading “Kenora on famous Lake of the Woods. Adventure starts here!”. Then to a room with a number of people seated around a table drinking coffee. Then to the outside of a large brick building on Toronto’s Queen St West. Then to an office where a woman is crouched down add papers to the bottom drawer of a filing cabinet and then the camera pans to a man sitting at a desk while speaking on the phone. Then to a close up of a woman sitting at a desk speaking on the phone and taking notes.]

There are now approximately 60 CSIs - each one different.

[Yellow text on a blue background displays as the narrator speaks. The title Consumer/Survivor Initiatives: The Reality” displays. Then a video of a man standing behind a desk which is filled with racks of pamphlets as the narrator speaks. The video changes to show two posters the wall reading “I’ve learned that it is never too late to improve yourself” and “I’ve l;earned that there are no unimportant acts of kindness.” Then to lounge with a man seated at a desk in front of a computer and another man sitting on a leather couch. Then to a video of a woman preparing lunch in a lounge including a tray of buns, meats and cheese, yogurt, bananas and grapes as a group sits around a table and a man sits on a couch. Then pans to the group seated around the table eating the lunch. Then back to the table with a closeup of a woman adding salt to a sandwich. Then to the outside of an interior glass door with a sign reading “Longitudinal Study of Consumers / Services Community Forum” as the camera pans to reveal a number of people seated in 7 rows of chairs as a woman speaks to the group and then pans to a closeup of several of the seated individuals. The video changes to another similar setting where a man is speaking and then the camera pans to a number of people seated at what appear to be school desks. The video changes to another male speaker then to a group of participants seated at a desk and taking notes as the speaker speaks. The video changes to another male speaker and then pans to a group of people seated and taking notes as the speaker continues to speak to the group. ]

In 1996, the Consumer/Survivor Development Initiative conducted a survey and ran focus groups with the newly formed consumer/survivor initiatives.

This research suggested that members were enjoying positive benefits as a result of this participation in these consumer-run organizations.

Then, in 1997, a call for proposals for a community mental health evaluation initiative was issued.

The research was to examine different types of services including crisis services, assertive community treatment, consumer/survivor initiatives and family initiatives using a common approach.

This community mental health initiative was coordinated by Dr. Paula Goering and colleagues from the Centre for Addiction and Mental Health in Toronto.

[The video changes to show side by side videos of John Trainor and Marnie Shepherd then expands to include videos of Jeff Nelson and Joanna Ochocka]

John Trainor invited Marnie Shepherd, coordinator of the Consumer/Survivor Development Initiative, Jeff Nelson of Wilfred Laurier University and Joanna Ochocka of the Centre for Research and Education to consider the potential of applying for a study of the consumer/survivor initiatives.

[The title “Evaluation of Consumer/Survivor Initiatives” overlays the 4 videos. The screen transitions to a woman speaking to a group approximately 20 seats individuals then to a closeup on some of the participants then to a wide view from the back of the participants facing the speaker.]

Even in the planning stages, the study of the consumer/survivor initiatives used a participatory action-research approach.

[Joanna Ochocka is seated at a desk and speaks. The following text displays on the screens as her video is minimized “Participatory action research is a research approach that involves active participation of stakeholders, those whose lives are affected by the issue being studied, in all phases of research for the purpose of producing useful results to make positive changes. (Nelson, Ochocka, Griffin & Lord, 1998”]

“In this evaluation, we did not want to have only rigorous methodology but we very much wanted a good process that itself was an outcome - and outcome of this evaluation. We utilized participatory action research and research approach which is different than conventional paradigm of doing research. participatory action research is rooted in the tradition of democratic pluralism of empowerment of social change and evidence-based research. Participatory action research consists of maximal participation of stakeholders of systematic - a collection of information and analysis of this information to inform future action and future change”