Toronto Invitational Sessions

Toronto West / Toronto East / Brampton

Invitational Session in West Toronto
805 Bloor West
Toronto, ON
April 19, 2002

[9 people present]

[General discussion of ‘On the way to "Making it Happen"’ document]

Why is this happening now?

What kind of budget does the task force work with? I was afraid that they would have a strict budget, that services might be cut.

One of the things touched on a little bit in the document is housing. This is where the federal, provincial and all levels of government are sorely lacking. There aren’t enough dollars to create affordable housing. This is a reason for concern. The fact that people with a mental illness don’t even have a place to stay should be a priority.

Do you think that the downloading of housing from federal to municipal governments is going to affect this in any way?

Being able to maintain one’s housing is also important. This is hard when you can’t communicate at a sophisticated, academic level. I know, because I’ve been seriously mentally ill and unable to communicate well. Often, agency people don’t understand post-traumatic stress disorder. My experience of being a survivor is that its like a war zone. People are stressed — they’re engaged in too much self-disclosure; they can’t clear their minds enough to be able to talk about what’s wrong with the system that they’re in. I’m in a place now where I’d really prefer to try to solve my own problems. All the abuse in the past 10 years — I don’t want to go to any agency — I’d prefer to get help from my neighbour or my partner. I don’t want to have to go to agencies.

It was mentioned that there’s no money for housing. Should we just sit still or try to do something? We should have a task force like this every year until something is actually done. They have money — it’s a matter of whether they want to give it out or not. We should make noise to get them to listen.

The stigma of mental illness, particularily the way we are sensationalized in the media. — that makes it hard to get housing! Every time we try to get more housing we have to go to community meetings to defend ourselves. People there call us horrible things — murderers, rapists. People need to be educated. They really don’t understand anything about poverty and mental illness.

I’d like to see better staff. I’ve seen a lot of consumer/survivors evicted for behaviour that wasn’t acceptable to a particular staff member. That shouldn’t happen. Housing staff often have no understanding; they act more like security officers. Are they in the housing business or the eviction business? I don’t want to mention places. In my case, I’m tough and can take a lot. But there are others who behave in a way… well, they’re sick! But their behaviour is framed in such a way that they end up being evicted, instead of recognizing them as being sick. Housing providers probably need more funds to be able to provide appropriate services. They need ethical guidelines. Need flexibility — all c/s’s are different.

I agree with the need to educate people about mental illness from the ‘inside’. Consumer/survivors must do the educating with regard to stigma. Less than 1% are violent. Even I did not know anything about mental illness. I’m from China, where I had never heard about ‘consumer/survivors’. Now I’m aware; I learned. I used to work in a bank. I want to pursue my education, my dreams, live a normal life, not be on a fixed income forever. I’d like to see c/s’s have access to higher education if they wish.

I’ve been listening to the task force committee and I think that we really need a c/s initiative that is Toronto wide and that would be sort of the voice of consumers at things like the Regional Mental Health Authority and the local care management delivery systems. Consumers right now are not together in any coherant group. We don’t have real training or background or even people to bounce ideas off. We go out to these meetings and we’re isolated among all the service providers. They’ve been talking a lot about consumer/survivor representation, but there’s the question of needing an organization to keep the issues and advocacy moving on behalf of consumers. Such an organization could do independent research and consumer evaluations of the service system and where the gaps really are, etc. I don’t think service providers should be evaluating themselves.

[Do you think that presently, there are c/s run agencies that are mandated to do this?]

I don’t think that there is really anyone Toronto-wide, that is well known to be the one that service providers go to when they want to hear the consumer point of view. They just seem to grab isolated individuals that they happen to know when they want a consumer viewpoint for their board or committee or whatever. We don’t really have any group that we can go to to try to get some consensus about what we should be saying when we go to these meetings. I think that something that was actually funded and formally recognized would be good. I think that the Queen Street Outreach Society is doing pretty well — although you’re not that well funded.

If we try to tackle the world, we’re bound to fail. We should start with ourselves.

I see the bottleneck as being the job situation. No matter what training you get, if there are no jobs, that’s where it ends. I don’t know how you’re going to create a caring community if people can’t get jobs in the community.

[Playing devil’s advocate, what about the 150,000 jobs presently created in Canada because of its strong economy? That’s coming from the government of Canada]

Yeah, but if you go cold-calling for a job and say you have a mental illness — forget it! If you can go in with people knowing you and what you are, that’s fine. But if not…

In Canada, we are so dependant on the government. In the States, people aren’t so afraid to hire someone with a little bit of a handicap. We should create more companies such as Fresh Start. We aren’t going to change the mentality of an entire population. You aren’t going to change private landlord’s views about mental illness. It would be a lot more expensive to try to do that, than to build more subsidized housing.

I see ACT teams mentioned in the document. Are they the accepted thing now? Perhaps we should make it more apparent how we feel about ACT teams and CTOs. I think that ACT teams and CTOs have had a big effect on us. This should be reflected in the report. The medical system is big on pushing drugs which in many cases don’t help. ACT teams don’t give people a choice with regard to drugs.

With regard to recovery, as much as I’m in favour of Houselink and the idea of going into supportive housing as a way of recovering from a serious mental illness, a place like Houselink is too noisy for me. I’d prefer to live among senior citizens — but I don’t have enough money for this. I’d prefer to live in the community with regular people. I’ve seen a lot of people in the system including myself, deteriorate from regular mental illness to a more serious illness from lack of appropriate support and understanding from case managers, social workers with degrees, etc. I really need peer support — people who have been there, done that. We need some kind of clearing house where we can get real information — not just the information they give you at the agency’s doors. Look how much education psychiatrists have, just to give you a label. Awareness of cross disability issues is also important. I’ve been bounced back and forth from one professional to another. No one gets it. Sometime I don’t think they want to get it. That makes me feel isolated. There are survivors who sit on committees, who try to change things. But people are being burnt out. We’re getting older. There probably won’t even be a Survivor Pride day this year. People are tired. I need a community. The only community I’ve had is being defunded. If I had enough money, I’d take it and live in the community, take care of myself. Even the faith community has let me down — I had a minister say to me "Someone like you will disrupt my prayer process".

We need an ombudsman so we have some power to advocate.

We need more employment for consumers in the mainstream agencies. We should be challenging agencies, asking them how many consumers they employ and plan to employ. There’s a dichotomy between what the agencies say they want to do — ‘empower’ the consumer’- and what they actually do, which is often to refuse to hire consumers to work in their agencies.

Wallmart seems to be seeting a precedent for hiring physically disabled people.

We don’t have enough power within the system and we need something to counterbalance that. The States are 10 years ahead. They rely on powerful consumer groups that are outside the formal structure. It would be nice if we had this.

The Ontario Conservatives want to blame mentally ill people who don’t want to work, but they won’t hire us either. They don’t want to look at us.

With regard to employment: if I’m on welfare and want a job-if the job doesn’t work out, I’ll have a hell of a time getting back on. There should be an exceptional channel to support consumers who want to take a chance to get to work.

Most jobs have a three month period anyway, where they can fire you. What happens if it doesn’t work out? Are you out on the street?

A lot of jobs don’t pay sick days during that probation period either.

I applied for a part time job at Houselink. I figured with medication, I’d be working poor. This would incline me to want to try to make it without my medication. And if the job didn’t work out, I’d be destitute. They don’t make it worthwhile to take a part time job.

There are two standards when it comes to income supports to consumers. CPP which allows you to make 3800 per year and ODSP which allows only 160 per month. Both are disability pensions. But CPP is indexed slightly. We should at least index ODSP.

A lot of survivors out there aren’t on ODSP — they’re still on workfare. People can’t live on that. People don’t feel better when they live in poverty.

We need another review of the income support system.

I think that everyone is mentally ill to some extent. Its only at the extreme that people do things like pushing someone onto the subway tracks.

You’ll never have a caring community when the message comes right from the top that the mentally ill cause all the problems in society.

[You’d think that with all the great ideas we’ve heard, there would be more smiles around the table. Is it that we don’t really believe that we will be heard at a top level?]

We need a body with some clout, some resources. People have been abused out there and we don’t know where to cry. Everything comes down to money.

[Who would fund this body? Ministry of Health? The church?]

It should be part of the system design, recommended along with everything else that’s going into the implentation task force — that there needs to be a freestanding component.

[It may not be able to be freestanding; it may need to be connected to the mainstream system]

There could be a consumer council attached to the regional mental health authority body. But I think that there needs to be a focus on consumer survivor advocacy that’s separate. Maybe such a body could train and provide experienced advocates to sit on things like the regional authority and local care management delivery systems.

[If such an advisory body were established, should it be under the umbrella of the Ministry of Health? Are there other way to fund it?]

We may be a subculture, but we are part of the city, we have to mingle with others.

[But some would say that we aren’t a subculture — we simply have a medical condition]

That’s why we are a subculture — because no one understands us but ourselves.

The funding situation might be similar to the Psychiatric Patient Advocate Office. Its funded by the Ministry of Health yet they’re sort of held at arm’s length from the rest of the Ministry and are able to advise other parts of the Ministry. I don’t know how the Advocacy Commission was funded — it was supposed to be arm’s length.

[If such a thing was created by the Ministry and they invited you to go, what would motivate you?]

If I didn’t have anything else to do that day.

You must have something to sell to consumers to encourage them. Otherwise, we might think ‘whats the point, they won’t do anything for us anyway’. I would go.

I would have to be prepared to become a career patient. Something like Rick Hansen. I would be motivated because it might be the only way I could get quality of care. It would help me in my own process, my own survival; also, my isolation and the desire to be part of a community would drive me there.

[What about monetary incentives?]

I’ve worked voluntarily for about 9 years. I get benefits and sometimes, a few dollars. But I was isolated. If we could create a body that did something tangible, we would have people interested. And some people would also appreciate some pay on top of their ODSP.

In society, if you do something worthwhile, you should get paid, but most of us are on ODSP or welfare and would get our money clawed back anyway. There is something other than monetary value. If we had a well-co-ordinated group with expertise — if it was really given a chance and listened to-that recognition would be a reward in itself.

On the other hand, when you’re the only volunteer in a room full of service providers who you know are getting paid maybe, 50 or 80 thousand dollars a year, it gets to you.

You get what you pay for. Caring and devotion are something else.

It might not be allowed to pay c/s’s to sit on boards where membership is voluntary. But you could pay them to take part in doing research or to participate in leadership training courses.

[How should we research our own community?]

This body could also be responsible for compiling information about the system that could be given out to people right when they enter the system, before their situation deteriorates- information about jobs, housing, etc. — before they lose their housing, for e.g.

But isn’t that just when people are at their worst — not well enough to look at a lot of information?

Yeah, but I think that its best to catch them before they become too ill — to give them information about wellness, ways to cope with stress, overcoming symptoms, etc. One thing that this c/s group could do would be to compile this information in language and terms that can be understood by anyone coming into the system. C/s should do this because they know more than professionals about the system from the inside — and more about how we can help ourselves without always relying on professional perspectives.

Mental illness isn’t just hereditary. It’s caused by errors in society, the environment. Shouldn’t we try to change the society that has contributed to mental illness?

That would be broad mental health promotion to the whole population in order to improve the mental health of people who haven’t been diagnosed yet, public education to prevent mental illness, education to prevent stress in workplaces, education in the high schools; how to help people before they are labelled.

That should include information about the effects of becoming homeless. Homelessness should not be an option for anybody. It causes illnesses that are very difficult to recover from. People’s health is permanently altered from living out on the street.

Most people still don’t consider housing a human right, even in this society that prides itself on a belief in human rights.

We need a database for media people, journalists to go to to get information about mental health issues.

A lot of caseworkers have been around too long. They’ve begun to give up. How can we help them to do better?

[Let’ say that we are the Group, and we hire a consultant to ask people about the services. Let’s say that the consultant finds out that everything is ‘fine’ — but you know that’s not true. You need to find a way to get the real word. How can you do this?]

The Fred Victor Mission, Corner Drop in, have outreach workers; so do the boarding homes. They go out to the streets or the homes.

I see an ombudsperson as someone who would put the word out about mentally ill people not being evil.

How about providing people with a suggestion box?

After the suggestion box, I’d try to get some consensus to see what people felt was the real problem that should be included in our advocacy plan.

Most services that provide housing also do advocacy. Why can’t c/s’s do this?

[What about the people in Parkdale? What about the people in the forensic units? The elderly? The people who don’t want to talk? Even c/s groups who purport to be the voice of c/s’s don’t get to hear everyone. How do we get to them? How do we not just hear, but promote the voices of these people?]

You have to build a relationship with them. This takes time.

You have to offer a carrot.

You have to make people feel that its ok to be the way they are.

Outreach is a skill. You can’t just start asking questions. You have to be there, with people.

You have to let people know that you care. It’s the only gesture that you can make.

[But what if you have a good outreach worker — one who is caring and trustworthy and skilled. She still might not be able to get people to talk in say, the forensic unit, where the whole culture and code of the unit is to keep silent. How do you get to those people?]

We should do away with forensic units — and all institutions. We should have services in place to fully integrate people into the community.

[Last words?]

Coming here to this consultation is part of a learning process for me, a way to express my own point of view.

We need to strike while the iron is hot. I’m not going to get my hopes up.

We seem to have covered the important things — emloyment, housing. The document doesn’t fully explain what a recovery oriented system is.

Consumer’s opinions should be taken seriously. Education of society is important. We aren’t any more violent than anyone else.

I like the recovery concept, although I want more information

Its hard to get into things here. Its our first meeting, there are time constraints. But it was good for brainstorming, good ideas presented.

Thankyou for the opportunity to speak.

This has been a satisfying experience. I feel like a lot has been drawn out of me. I hope that this will be one of many sessions. I would like to review this material at another session.

Housing, housing, housing.

Every dollar that they put out, they get back threefold when people get out to work. They look after the dogs better than the human beings.

Toronto West / Toronto East / Brampton

Invitational Session in East Toronto
519 Community Centre
Toronto, ON
April 26^th, 2002

[10 people present]

For those without computers or TTC fare, the report could have been mailed out to make it more accessable.

I sat through the Graham Report. I’d like to express the anger of about 60 c/s’s who are skeptical about this report doing anything but ending up on a shelf.

Now that I’m technically homeless and in the shelter system, I see what they’re doing. Now that they’ve closed so many psych wards they seem to be almost turning some of the shelters into psychiatric hospitals — but they are even worse than psych wards —they have some really terrible rules. You have to give them your medication and they say when you get it, which contravenes the Canada Health Act right to consent. I refuse to stay at those places. I was sitting in the cafeteria at one shelter and some of the women who seemed seriously mentally ill were screaming and yelling; I have no problem with that; it just seems that at the shelters no one seems to know how to help these women without shooting them up with drugs. There needs to be at least 4 or 5 mental health workers in this system who have been consumer/survivors themselves. I’d rather sleep out on the streets than stay there. I’m sure its much worse for anyone who is severely mentally ill. Most of the people there have hair trigger tempers anyway, because of the overcrowding. I’m actually comparably calm and resourceful.

I’m in a constant state of trying to transcend my own anger at the mental health system. I’m trying to see both sides of things which is a difficult position to be in. I see a lot of angry people, some activists you may know, whom nobody’s listening to. I’m prepared to be more subtle. I’ve worked at Out of the Cold, I was the only volunteer who came every week. One woman thought the food was poisoned and I offered to eat a bite of every meal that she had; another guy started throwing a chair; but I found that you have to go by your gut with people — being calm and liking him worked — he put it down. But I’m also scared all the time. Recovery has to be self empowering. I’ve realized that if I present myself as out of control, I will be controlled — that’s just a rule of society. I see my job right now as being in control and trying to present myself as controlled all of the time And I’ll know that I did it — not a drug, not a doctor. . I don’t want to be angry and bitter about things- I don’t want to sit around and argue for hours and hours. I think that everybody has some gift or skill whether its being part of a think tank or being a system planner or being a friend to someone. I want to find other people, put people together. I want to tell people who are just about to enter, before they get crushed the way I felt crushed, I would have wanted someone to say to me-and I know you can’t say ‘fuck those guys’- but to say :remember, they are just one little brick in a massive house of recovery — even though they’re going to try to tell you that they’re the whole house. There’s other stuff — going out, spirituality, staying in school. There’s a lot more than somebody showing up and giving you a magic pill and saying "look what I did for you".

I’m a single mother. I’ve been in and out of psychiatric care most of my life. For the last 10 years I’ve been in supportive housing. It has helped immensely. Its created employment opportunities and skills for me. I’ve stayed in positive institutions such as the Gerstein Centre. I have a philosophy of what I think is helpful and not. I found a recent stay in hospital not helpful. I’d like to see more places like the Gerstein Centre. Places that are non-medical, compassionate. I will say that during my last hospital stay, the only positive thing was being around other people who had experienced mental illness. I found that they were more supportive in my recovery than doctors.

I’m really concerned with pharmacological treatment. I’m also concerned about the way police treat people in the emergency wards. They show no respect or understanding for any body with a mental illness.

I also live in supportive housing and I’ve become involved with the organization which provides the housing for about 10 years. I’m on the board. I’ve tried to interact with the system in a good way. A few years ago I was on a committee that actually tried to advise the police on their training methods. That seems to have gone by the wayside since the chief of police changed. I’ve also been involved as an anti-poverty activist on mainly housing issues. The last time I thought that being hospitalized might help me, I needed a place to go, I was refused any help there. I too worry that reports will just sit on shelves. I hear a lot of good ideas. Its about getting the politicians who hold the purse strings to allow these ideas to be put into practice.

The idea of recovery goes against everything I’ve been told. I was told by a psychiatrist that in the 22 years that he’s been practicing he never heard of anyone recovering from a mental illness without medication. But I’ve seen people living the lives they want to live — maybe not lives that I personally would choose, but lives that they want to live — without medication. So, I know that that psychiatrist was wrong.

With regard to the task force — will there be any new money for these reforms?

Traditionally, money hasn’t been available for recovery. Doctors always say that you can’t recover from a mental illness and as long as politicians believe that if you have a mental illness, you will never be a contributing member of society, they won’t think its worth putting money into it.

The biggest obstacle to recovery is that the MOH continues to fund ACT teams, drug therapy and other traditional services. Hospital psych. wards are nothing but holding pens run by people who’ve never been there. Alcohol and drug programs are peer run and have a much higher success rate. The value of peer support has not been recognized by the mental health industry. If they want to talk about recovery, they’ll have to start funding consumer/survivor designed, operated and evaluated programs.

I agree that cops know nothing about how to treat emotionally disturbed people.

ACT teams get all sorts of money, but they only work with 00.1% of the people because of the logistics behind them. Jails, shelters are being used as nut houses, places to lock people away.

A lot of us have recognized that in order to recover or even to live properly, people need housing. But the only housing the government is funding right now is prisons. I assume that the recovery approach means that people will be living in housing rather than hospitals.

Non-prescription drug use and self-medication — especially within the homeless population - should be recognized as a mental health issue. The system presently views this — especially the police — as a criminal issue. I’ve seen 51 division swarm a homeless individual with a little bit of crack; meanwhile, the guy in a suit on Bay St. gets to do his coke in peace. Doing drugs when you’re on the street is part of survival, coping.

Actually, most homeless people are not mentally ill. A small percentage are. The right wing wants to believe they are because then more ACT teams and CTOs can be justified and instituted to control homeless people. Rents have doubled in the past 5 years. What we have is a housing problem, not a mental illness problem.

Meanwhile, the Tories have been saying that they want to get out of the housing business.

We should be making the decisions. Not the nurses, not doctors, not housing workers and all the other poverty pimps. We should be running the system.

My supportive housing already does it. It builds incentives for consumers to get back into the work force. Most employers aren’t flexible enough for c/s’s. There should be more c/s run businesses in the city. We have so many skills that go unrecognized by employers. Recovery isn’t just about getting off medication.

Being employed isn’t just about making money. Its about being a useful part of society. A-Way, Raging Spoon, are successful, although they do have their bad points. Surely the government feels that putting money into this is more cost effective than throwing people into jail.

[What about cross-level services?]

There should be training institute where we train the so-called professionals.

One of the things that would make it possible is an employment service run by us. HRDC knows nothing. They told me to get a job cooking hamburgers. Its got to be run by us.

I don’t think that politicians look ahead. Demographically, 10, 15 years from now there will be an enormous need for skilled workers. This could be an argument to use for politicians.

As I get older I don’t want to be receiving services from a kid half my age.

In the future, the younger generation will be where we are now because of the poverty they are presently experiencing unless money is put into programs for them.

[What are current programs missing? What would you do differently?]

We need compassionate mental health services from someone who’s been there. You aren’t going to get that from someone with an MSW.

[But, playing devil’s advocate, what do you know about helping people become employed?]

I’ve been an employment counsellor for street youth. I have no education. I was hired based on my own experience with being on the streets.

I have degrees, a lot of us do. I’ve supervised people, I’m also an artist. I’m very adept at helping people get work.

I’m in the process of applying for a job in a consumer/survivor position as a volunteer co-ordinator. I can’t tell you what a relief it is not only not to have to hide my experience with the mental health system, but to actually have it valued!

[But don’t consumer/survivors need accommodations?]

CEO’s in the mainstream workforce get flexible hours, in house day care services; why can’t we have flexibility?

It’s the stigma

I was working with a marginalized group as an employment counsellor and the advice I often gave was to do volunteer work with an organization you want to work for. Its good experience.

The public needs to be educated. I’ve seen the police sitting there, picking their noses and laughing during presentations by consumer/survivors. They’re just happy to get the day off.

[What could have made the system more helpful for you?]

I go to a group run by Street Health. There’s no place to wait until the place opens. I’ve waited for over 40 minutes in the cold.

[How do they treat you?]

The speak to you, but then you have to leave.

[What do they speak to you about?]

They ask about my depression.

[What would you say is or was the best services you’ve received?]

I can’t see any service helping me. I’ve been to St. Mikes, Gerstein. They talk to me, but they don’t help me. Medication isn’t helping. I asked them to switch it but they wouldn’t.

Many c/s have expressed this: we are not served by mental health services that operate from 9 to 5. This serves the workers, not the people who use the services. Most c/s’s would prefer services that at least go from 1 to 8 in the evening. We’d really like services that are 24 hour, but that won’t happen. Most of my crises happen at about 3 in the morning, not 9 am.

One time I took some pills. I wanted to die. I went to the hospital. They let me out the next day.

[Did anyone refer you to c/s services?]

No.

Maybe the traditional service providers are afraid that if you start going to a c/s place you won’t come back and they’ll lose their jobs. You can’t tell me that they’re ignorant of places that have been around for years.

It’s the isolation that kills you. When you go to emerg and they determine that you aren’t going to hurt yourself or someone else, and they let you go, you still don’t want to be left all alone.

We need drop in centres open from 11 to midnight.

All I do is sit alone in my room.

I go to 24 hour coffee shops so I’m not alone.

Most of the helpful services that I’ve received from social workers or agencies were not in their job description. I’ve found alternative therapies helpful, but I can’t pay for it. I once lost all my belongings in a fire. I went to social services to ask for some money for clothing. I had a pair of rubber boots with a gash in the foot. They gave me some TTC tokens to go to Canadian Tire to buy some patches for the boots. Meanwhile, they spent $800 a day to keep me in the hospital.

If you have to strap someone down, you’re failing them.

Its like people believe if you have a mental health problem or are homeless, you must have done something wrong. Harris said that homelessness is a choice.

Doctors with FFCCP or whatever it is after their name, big pharma, make big bucks. They’re pushers. That’s why its not going to change. They’ll keep us in our little cubby holes. Maybe we’ll get a tiny bit of money from the government for our drop ins or our cool places, but nothing is essentially going to change. This reform process is bullshit. Recovery is a house of cards. All those people make their big bucks off of me. The pharmaceutical companies make billions of bucks feeding me Prozac or whatever, and the doctor will make $4000 a year at least, and I get the glorious $7850 a year to live in my shitty cubby hole room and use the c/s run drop in and its not going to change. I’m glad to be here, but it’s a farce.

[How can we change these ‘crumbs’ into morsels?]

We’ve got to start our own stuff. Alternatives.

[The only leverage we have is moral]

I disagree. We have a strong financial argument to make. Not only has the system been failing, its not at all effective in financial terms. The system isn’t cost effective. Recovery can save the government big money. We have moral leverage as well, but they’re more likely to listen to the financial argument.

We’ve got to convince the ‘haves’ that giving to the ‘have nots’ won’t affect what they have.

[How do we get ourselves to the point where we can train the professionals?]

Politicians like to save money. I think the cost effectiveness of recovery-based thinking does that. We could argue that when people get better, they are more productive, etc.

We should focus on children’s mental health system. a lot of people in our community are, I’m sorry, but lost causes, because of drugs, how long they’ve been on them, etc. They’re used to the shit — they don’t want accupuncture, art therapy, etc. On the other hand, there’s a lot of kids in CAS on ritalin, etc. We should start young. The CAS should be involved in this task force.

[How do we prove any of this? We aren’t economists.]

I don’t see why we always have to justify ourselves. Big business always takes risks with experimental money. But nobody is willing to take a risk with us. Money should be allotted every year to fund one year experimental projects.

Governments aren’t going to listen because their buddies are Big Pharma.

Diana Capponi was given a million dollars from the provincial government. How did she manage that?

I think that we’ll have to depend on people like that TD Bank guy who said that homelessness is impacting on business. The government of course, says that’s wrong. But wake up! When bankers are saying it — we should be going after that guy.

There are dot com millionaires who want to give money for social causes.

There are two ways to convince these people that recovery works. Create a drop in that is recovery based and look at the results. Or, we can look at other countries’ experience. They need hard evidence in order to loosen their pockets.

They’re stupid. I was in hospital. I thought everything was poison, so all I ate was Triskets. They just thought oh, he’s the guy who likes Triskets. I weighed 115 lbs. They didn’t clue in that maybe that was part of my problem. A 15 year old could’ve figured it out — hey, the dude’s only eating Triskets, he’s fucked up.

The MOH should fund political action groups for c/s’s just like political action groups are funded for people with AIDS, people with cancer and for business organizations — I think its called the Board of Trade. The Schizophrenic Society, Mood Disorders, get money from them. These groups have access to money that we don’t .

[Survivors often have difficulty getting along. That’s why its hard for us to stay the course…]

Have you ever been to a Board of Trade meeting?

{The Board of Trade makes money out of their activity, so they stay the course.]

I want to find individuals, to get along, not fight all the time. If anything is going to change at all, we’re going to have to at least pretend to be listening to each other. At all levels. Even people I hate. Even if I have to go under cover, I’ll put on a tie…

Why are we holding the c/s movement to standards that others don’t have to meet? Four out of five businesses fail.

Toronto West / Toronto East / Brampton

Invitational Session in Brampton
Friends and Advocates, Peel
Brampton, ON
April 15, 2002

[9 people present]

[General discussion about document ‘On the way to "Making it Happen"’]:

Didn’t understand it

Doubletalk

Should throw it all out and start from scratch

Seems like you’re trying to develop a system that is not about ‘us’

My doctor put me in hospital even though I told him not to. I knew I wouldn’t get better in a hospital. He released me after a week, I went home, and overdosed. This happened several times. I would have preferred a 24 hour crisis service. Recovery can’t take place in hospital. I agree that we need more natural, non-institutional settings and encouragement to take risks. My husband helped me, not the hospital. Talking to someone on the crisis line, even someone I hate, can be enough to make me want to fight and live another day.

I am under mental health on an ongoing basis. I live in a facility and go to a clinic. Whats the sense of the clinic? I’ve asked for help in anger management and been told there is none. They just feed you more pills. You have to help yourself.

I liked the document. It had a lot to say about us helping ourselves. Integration into a job, into the community is important — but it depends on what kind of job. Its going to take more than 3 steps to get people back into the community, back into a job. Lets say a guy loses his job because he’s mentally ill. Then he’s fine and tries to get his job back. He probably won’t be able to. Has to go to court. He’s on disability, has no money, no job. He’s got to tell everyone this.

I’ve been volunteering for 5-6 years. I want a job, but can’t find one.

Regarding the document, I want to say that I’m concerned about the labelling of individuals with mental health issues as ‘consumers’. It has become common for the masses, but it is still derogatory in nature. I don’t want to be known as a consumer; I am first and foremost, a human being. I want to equal to everybody else in this world. Eight years ago, ‘consumer/survivors’ became the greatest thing on earth. That was what you told people you were if you had a mental health issue. But its still a label. I prefer to just come out and say "I have mental health issues that I deal with every day". I’m not a consumer/survivor.

I have three points to make about page two. Under ‘Recovery’: ‘a concept, rather than a belief that people can recover from mental illness’. I personally, don’t wish to deal with a ‘concept’. That is what we already have had to deal with in the past. It doesn’t work. That’s why we’re looking for reform. I want to know if there is any other way of being more committed to the factual proof where studies have proven that people can and do recover from mental illness. Prior to Brian’s Law, we were trying to get people from the hospital into the community. We should be looking at is the true evidence that has been proven by documented research, that people can recover.

On page two under ‘a recovery-oriented approach focusses on…personal empowerment and autonomy’; I think that is patronizing. Personal autonomy is god-given- we shouldn’t need to ‘focus’ on it. This just encourages us to feel that we are given this by others.

Also on page two: ‘best practices’ I would feel better if I knew exactly what is meant by that. What is ‘best practices’ for one person, may not be for another.

In Caledon we have a shortage of services. [even compared to Brampton?] Yes. At the Peace Ranch, we have to come down to PAR every Tuesday to join the clubhouse. I was sexually assaulted by my mother and I went to get counselling in Caledon. The counsellor said it was too dangerous for me to get counselling. She was afraid that I might try suicide or something, if I brought up all the old feelings. So they wouldn’t give me counselling for that. There are buses to Brampton, but they’re few and far between. Services need to be extended to Caledon. There is no psychiatrist, no crisis line.

There is a crisis line. But they’re useless. They all know the routine, they have set questions. They ask you whether you want to go to hospital or not. I don’t want to go to hospital.

One time, when I was volunteering at Out of the Cold, a guy ran out of his meds, was really zoned out. I called the crisis line and they said that they couldn’t come because it was 11 pm. — this is a 24 hour crisis line! They said to call them tomorrow. They said that the guy could carry on a conversation, therefore he must be ok, and why were we calling them?

In Caledon, the closest service is in Orangeville. They have a psychiatrist come in once a month. There is no psychiatric ward at the hospital in Orangeville. But there is a lot of need. We do run a day program and we have a lot of people come in who suffer from schizophrenia or manic depression or whatever the diagnosis may be. We have 10 residents on Wednesdays, but we can get up to 30 people at our day program. They don’t have enough services for that many people. Some people have to go all the way to Guelph to see a psychiatrist. If someone at Peace Ranch is in crisis, there’s no hospital. We have to go to Brampton, an hour’s drive away.

I read the document carefully. I wasn’t impressed. Of course people can recover from mental illness. But certain mental illnesses rebound. Certain mental illnesses are permanent. Certain mental illnesses require that you take meds. You may recover enough to live an adequate life, but you can’t go back to the workplace. Such people shouldn’t feel inadequate.

I was dissatisfied with the document. I didn’t understand it. I see my psychiatrist every month. I have a mutual understanding with him. He doesn’t force meds on me. He is open. I feel that he does a good job diagnosing and medicating me.

[How about diversity-youth?]

How do you define youth?

Youth services kept me out of jail. I got into trouble, they did an assessment with me, gave me 3 years probation, and I had to stay on my meds. I was in Penetang before that. It was terrible.

[Do any services here know anything about forensics?]

No. Nobody knows anything about forensics here. They don’t have forensics here.

There is a staff person at the courthouse.

Court diversion

[Have you experienced discrimination?]

I’ve heard people talk about being discriminated against. Personally, if its there I’m not aware of it.

[Services for those with physical disabilities?]

My husband is supposed to be helping me, but he doesn’t. But the mental health worker said I didn’t need their support. There is transportation, but you have to pay. There aren’t any automatic doors at PAR. The hospital is ok.

[Learning disabilities?]

I can read some, but I have a learning disability. I find it hard to comphrehend things like this document. I’m in a building for special needs. Most of the people in the building — it’s a group home — are ok. But some will call us retarded or slow. I usually just walk away. But sometimes its hard. If we confront, we get into trouble. Police were called on us. We weren’t doing anything wrong.

Until about 5 years ago the PAR program officially couldn’t take anyone with learning disabilities. Now they can, but it actually isn’t a good fit. They are two different illnesses. There’s discrimination both ways.

[Back to general services]

I wanted to go to the funeral of someone in the group home who died. The staff didn’t want me to go. That upset me. I called the crisis line, and they told me it wasn’t a crisis. They referred me to the distress line, which was busy when I tried to call.

We were so upset at suicides that were happening at PAR — but nobody would talk about the fact that they were suicides. They tried to deny it. Finally, they called in a grief counsellor. He gave a workshop and grief counselling. The entire clubhouse turned right around. If it wasn’t for members demanding that, we’d still be all screwed up.

[Why aren’t staff providing that?]

Because that’s not their mandate, not what they’re qualified to do.

[But they’re mental health workers…]

Some of the people working used to sell cars. Some of these people have all sorts of degrees, but no experience with psychiatry. They come in here and work for a while and network and as soon as they get a better paying job, they’re gone.

[Shouldn’t training of staff be a mandate of mental health services?]

I’m better trained with my grade eight education than most of the staff here.

There is no training

[Regarding the document, page 9. Housing?]

That page is a disaster

We were promised 200 beds, we got 120.

We don’t get enough shelter allowance to pay for housing costs.

[More opportunities to go to school or work? Two alternative businesses?]

They had one, but outside interests stuck their noses into it and it went under.

I started a consumer-run coffee shop at the hospital. I went in twice a week to the patients in al the rooms, introduced myself. I did it for 6 months, but then the government cut the funds. This was more than 10 years ago.

There should be three alternative businesses in Peel.

We should start putting proposals together for a viable business. We shouldn’t let the bean-counters decide what kind of business it is.

[Who should it go through? CMHA?]

No, No. None of this umbrella crap. This should be funded entirely separately.

I think that A-Way Express is a good business. We could run it in downtown Brampton. But we need a subway system.

[Should you start networking with the alternative businesses in Toronto?]

No, we should get people together from here. Work from the ground up.

[What about educational supports?]

We do have upgrading courses here.

We shouldn’t be compelled to do anything

[Should people like yourselves be setting up a mental health program with counsellors, grieving processes, etc.?]

365 days a year I am doing just that, for no money. I’m on Mayor’s committees, for homelessness, I’m the vice president for Peel Mental Health Housing Coalition, etc. Its never ending.

[How would you determine whether you were doing a good job with any c/s initiative you might start? How would you measure that?]

Accessibility.

Number of people who attend.

Versatility. If you are able to have many different programs available. Agroup for whatever our needs are.

If I can make friends there. If I can come when I want — days or evenings — but I’m not forced to attend every day.

Should decrease number of hospitalizations

Should be a place (like Eden Place) where you can come and go, shoot the shit, sit in front of the computer, watch tv, not be judged.

A place to do art, music, writing.

We’d need incentives to attract more people

We could have a sign-in, head count, to see how many attend

[How could we attract people; especially from a diverse community?]

Its all hypothetical — we don’t have the money!

Presentations

Go out and shake hands

Tell people that a program exists, make introductions.

Put it in the Guardian (newspaper), radio. [Are you saying advertise in mainstream media?] If the gays and lesbians can come out, so can we!

I’d go to municipal, regional government; stand in front of reporters, challenge them face to face about mental health issues — they know nothing!

[What about people lying under the bed, afraid to come out? How do we reach them?]

Tell them to shake off the dust and come on out!

Tell them: if your life isn’t what you want, if you are hurting, you can’t get any more hurt than you already are, by coming out and trying it out with us.

There is fear in this region about losing funding. There is competition for clients among programs. There shouldn’t be competition — there are enough to go around.

[What is the most important thing for consumer/survivors to do together? If you could do only one thing, what would it be?]

Housing, psychiatrists

Talk to people

Share information, feelings, support, love. People need to be needed.

[Last words?]

Support, literacy, getting around

Not to be told how I feel. Just because I’m slow, doesn’t mean I’m stupid.

I hope the report doesn’t sit on a shelf and rot.

There are 25% of people with mental health issues. If we all stood up, people would have to listen.

We have to reach out further. Peel has a population of 1 million; 25% is 10,000. The groups in Peel aren’t reaching anywhere near that number.

Need education to minimize effects of stigma through the media

The general public has to be well-informed about menatl health issues. The system has to improve somehow. Crisis, Relinc and other services shouldn’t be allowed to keep pawning us off on each other.

I believe that ertain people recover and go back to the work force, but others can’t and shouldn’t fee guilty about it. These people make a contribution anyway.

If you look at the document and hear everything, reform is necessary. I could suggest changes but the funding situation has to become equal.

Creating committees and advisory groups for research, testing, etc. is a waste of money. There should be proper collection of data that is not intrusive to people. Programs already do research and collect statistics. We don’t need any ore task forces or committees. We need to give people understanding and go from there.

Need accessible and adequate knowledge and awareness.

home / recovery / rights / readings
/ links / feedback / QSOS
/ QSPC archive