Workshop 5A - Under high surveillance or the PACT model
Jennifer Chambers
Activist
Ontario, Canada
I will talk about the assertive community treatment teams in Ontario.
So, in Ontario, assertive community treatment, much like community treatment orders, we’re introduced at a time of clinical conservatism. So, it’s a time when the social welfare is being cut, half way houses are being eliminated, so prisoners are being sent back to prison. The protection for tenants is being gutted and, then after having on all that, the government then turns to us and sees what kind of control they can put on us.
There’s actually a history of imposing case management in Ontario. About ten years ago, there was a parliamentary subcommittee that tore the province and it listened to people from all different segments of society including consumers survivors talking about their experience of the mental health system. When they concluded, they found that four main deficiencies were identified in the system in Ontario. One was a lack of appropriate housing. Another was limited employment opportunities. Insufficient income and inadequate crises services were the others. Then the minister of health drafted its policy, supposedly with these four ideas in mind. As priorities were housing, alternatives ran by consumer survivors in families which meant a little bit of employment for some, twenty four-hour crisis services in case management. The issue of insufficient income turned into case management. Maybe they thought we meant insufficient income for case managers. I’m not sure how that happened exactly.
The Ontario public on the whole has been fooled into believing that there’s a need for greater control of dangerous mental patients. And also that the main cause of homelessness is lack of mental health services. So people had been motivated into thinking that the majority of us are violent and this has happened by a lot of media attention to a very few violent crimes that been committed by people with a psychiatric history. Whenever the crime is mentioned, the person’s psychiatric label is also mentioned. What’s not mentioned is all the people who share the same label, who never commit acts of violence, or the fact that the vast majority, 96%, of violence in society is done by people without a major label.
The family groups, politicians and the media have often openly stated or employed the false assertion, if someone had just been taking their medication, this violent act never would have happened. This explains the fact that there’s no evidence that there is any medication that eliminates violence.
One of the cases that was used a lot … one was a woman in Hamilton who killed a neighbour’s child. And she was used as an example of the need to expand involuntary hospitalization and to expand force, introduce forced treatment into the community and forced medication. She’s not actually a good example of any of these things, because she qualified under the old legislation for being admitted to the hospital. They didn’t need to invent new legislation. And she is also not someone who has responded in any way to psychiatric medication. But in spite these facts, she’s nonetheless used as a poster girl for the need for this new legislation that the government introduced here. And then the government went so far as to actually name its legislation after a man who was killed in Ottawa by a man with a psychiatric history, named Brian Smith. So, the government denies that they in any way think that most people in the psychiatric system are violent. And yet, despite this, they’ve named their piece of legislation. It affects almost all of us after a man who was killed by someone from the psychiatric system. So, it’s not a subtle association that they’re making. And in connecting somewhat the use of ACT teams with community treatment orders, because in Ontario, at least, there one of the means of delivering the community treatment orders. People here are familiar with the idea of community treatment orders.
Community treatment orders are an act of legislation that allows people to be medicated possibly against their will even when living in the community. So, it’s actually a plan of treatment and, it can now be consented to by the persons themselves or it can be consented to by a substitute decision maker. And, then, in Ontario, if you don’t follow the plan, then the police can come and pick you up and take you to your doctor to be assisted. And, when people do consent, it’s often because they were told “this is the only way you’re going to be released to the community if you consent to this plan”. I’ll talk a little more about the connection with ACT teams.
So, the other way that ACT teams are justified in the mind of the public is the idea that they needed to help all the mentally ill homeless people. In this case, that comes before the government. I made a presentation to the government about forced treatment to a community and I pointed out that there’s a confusion of cause and effect in the public’s mind. In that, there’s a belief that mental illness causes homelessness. When in fact the research says that the cause and effect relationship is usually the other way, people become homeless because they have a major loss usually. It’s not trigged by what people call mental illness. And then, when people become homeless, they then extremely value living on the street. There’s no safety, people are often victimized, victims of crime and than they certainly becoming emotionally and mentally upset. And, then, people see this and they think, they make their own conclusions about what needs to happen. They conclude that all these people on the street, what they really need are mental health services. What research shows is that no mental health service will help until somebody as a stable home. It’s more important then anything else.
So, at two inquests and at two parliamentary hearings, I testified that well conducted research, so far, has not supported ACT teams or community treatment orders. And I make the distinction between the research in general and well conducted research, because a lot of time the research is done by the people who are the ones using the community treatment orders or members of the assertive community treatment team. And it’s often by us in its methodology and it’s by us in how it’s interpreted. And I recommended that before anybody… anything else – people’s basic human needs should be met, adequate income, adequate housing and before, treatment is talked about being… people have been coerced into treatment, why not delivered all the supports that we’ve been saying that we want for years. Why not deliver the non-medical crisis centres that we’ve been asking for ? Why not give us the kind of emotional support that we’ve been needing when we want it ? Why not the housing, the decent housing, yeah, the supportive housing, the peer counselling ? What sense does it makes to force unwanted treatment when people are asking for things and not getting it ? The mental health system is the only service in the world where, if people don’t want to use it, if they deliver a bad service, that people don’t want to use it, the government can actually force people to use the service.
I tease the police once a week at their police college and I point out to them that their life would be easier if people were provided with the supports that we want. They wouldn’t have to be parking people against their will to places they don’t want to go and to places that people wanted to go in when they are having a crisis. And the police agree with this. In fact, the chief of police in Toronto ended up speaking out against community treatment orders. And it’s not because he’s some real left wing guy either, I’ll tell you. He could see the logic.
When I was talking to the government back there, they were getting the tenant protection legislation. It actually costs a lot more to keep someone homeless that it does to just give somebody some place to live. It costs something like 1600 $ a month for someone to use a shelter, you get some decent housing for that. The cost on average is more to keep somebody in a psychiatric hospital. In Queenstreet, the largest psychiatric hospital in Toronto, the cost on average is 350 $ a day to keep someone there, with that amount of money you can get some really fine housing and 24-hour support of your choice.
I’ll talk a little bit about the ACT teams. And a thing that I was talking to the government, I mentioned that there’s a belief that ACT teams will be enforcing community treatment orders … and the government vehemently denied that this is true. And then later, I’ll give you some examples of them doing that.
There is some research coming out of the United States, a review of the literature on PACT teams in the U.S., which is what ACT teams here are based on. And, there’s one large rate of my study of 200 homeless people who are labelled here, you see, mentally ill living in urban jails. It looked at the effectiveness of ACT teams compared to case management and to nothing. They found that there was a higher recidivism rate, that people were more likely to end up in jail. If you are an ACT team, compared to a regular case management, so 56% with a PACT team, 22%, case management, and 36%, didn’t give anything. So, sure, it increased the crime rate.
It suggests that coercive case management might actually defeat the goal of increased independence. And so, actually, ACT goes against the principal of self-determination. A second negative effect possibly related to the coercive aspects of PACT is that it increased incidents of suicide in PACT settings. One study reports eight clear cut and one possible suicide that took place with people who were studied. It was a long-term study and it was conducted by some of the originators of PACT. So these are even people who are in favour of the model. It was hard to determine.
Then there is another study that look at eight months at the hospital, where none of the people who didn’t get PACT or report or just having attempted suicide. But 10% of the people who did get PACT didn’t. For several of the people who attempted suicide, they had been access by a psychiatrist immediately before. It’s having benefit greatly from PACT. So it should points little problems with the all notion of psychiatric assessment as well. These three PACT suicidal people had been given an usually persisting and coercive treatment. We’re suggesting that big surprise, this can be 80 therapeutic.
So, it’s quite possible, there’s a lot of research studies that are being done in Canada right now, now that assertive community treatment had been introduced, and I wouldn’t be surprised if the research turns out much the same way as with the community treatment orders which shows that it also has a negative effect because of the coercive aspect to it. It’s harder. It doesn’t really promote your ability to take care of yourself and to live in the community if you have other people around you telling you how to live.
When were they be putting in crisis centres ? In Quebec, I don’t know. In Ontario, we’ve only managed to get one. In Ontario, we only have one non-medical crisis centre and that’s in Toronto. There is other crisis centres primarily in Toronto. But they’re more medical models. One of them is in between and one of them is a highly medical model. And it’s far less popular with people. People call it far less and… because it tends to curb them off to the hospital. I think what might happen if there’s any beneficial effects from ACT teams and I think it might be along the same lines, when they find a limited beneficial effect from community treatment orders which is… it’s because that there’s some services that are required to be provided. Like requiring to some therapeutic housings and things like that. Things that could also be delivered, you know, in a way that it isn’t so coercive and pushy and probably would be better.
That was a very interesting process. The question was “What do I do to get the police to accept the idea that psychiatric survivors could teach them ?” It actually started. I was on a committee with the police and they were talking about the need for training with what they call emotionally disturbed people. We had a bit of pushing on the committee about who would do the training. I was the only survivor at the time on the committee and my perspective was it’s a program, it’s part of the police training for arguments, it’s about communities, and no other community has somebody coming to talk about them. They have members of the community coming to talk about themselves and that was insulting to suggest that we couldn’t do that for ourselves. And surprisingly, there was an officer at the police college and she backed me a hundred percent. So it was partly because of her (lucky to get her), but then it was also because I was involved with two inquests into police shootings. I testified and I also got a standing for a group. And, I think the police, they’re very sensitive to power issues and public relations and I think when they saw that we had a voice and the media were paying attention and they were potentially going to be questioned by lawyers in court, they were pretty into it. That made them more motivated to work with us.
And, also, in the inquests, my primarily target was not the police. It was the mental health system. Because I think in those cases the person has become completely failed by the mental health system and by society at large, especially the first person. And this is my main thinking that I was there to point out, so they didn’t see me as an enemy in that way, because they also feel… they suffer for the failures of the mental health system to some extent. They feel like having crisis services, because they aren’t enough support for people. I actually brought a copy of a summary of what we teach the police.
In Ontario, the guidelines for ACT teams about how to operate were more detailed than any guidelines that I’ve ever seen come from the minister of health to our community team. They’re actually telling what time in the morning to hold their meetings, how many staff to hire… it’s very detailed, and I think it’s because they wanted it to be just like those wonderful PACT programs in the U.S. that they heard so much about.
One of the requirements that is actually good sometimes in Ontario is that they have at least the half time position for peer support worker. Now, of course, whether this is good or bad depends somewhat on the rest of the team, there’s some peer support workers who’ve felt very isolated. They got paid less than other people, they’re only working half time, they are drop in a bucket. So, in those cases, it’s just a window dressing.
With the same rate of pay. Because they knew we didn’t like their idea. I actually… when I was testifying at the inquest, I was actually quoted in one of the newspapers saying that they should take some of the millions of dollars that they’re putting into a sort of community treatment teams and put it into services that people really want. So it really pisses them off. I was really pleased. So, in order to receive the services of an ACT team, you’re supposed to be someone with, they consider, severe and persistent mental illness. That interferes with your ability to live in the community. And this is shown by little things like not maintaining personal hygiene or meeting nutritional needs. I guess it never occurred to them that people with a few hundred dollars a month might have other reasons for having trouble meeting nutritional needs.
If you have trouble with keeping your housing or with washing your cloths or getting along with your friends and family, all these things are indications that you may need an ACT team. Poverty does not seem to occur to them as another way of addressing the same problem.
On welfare, I think the total is about 750 $ for a single person, but there’s also for people who’ve been in a psychiatric system a lot, they potentially might be on something called “the Ontario Disability Support Program”, which gives you a few hundred dollars more.
Someone is saying it’s hard for people to get on an ACT team in Quebec. It’s fairly difficult. They changed some things recently and they said that it wasn’t going to lead to there being people cut off the disability, but in fact, they are re-evaluating people and cutting some people off. I’m sure you have the same kind… some people may feel that their main trouble, for example, is having had a lot of trauma in your life and you might reject the idea that it’s an illness, but rather than you’re recovering from trauma and get an adequate income you have to say you haven’t illnesses. It’s a lousy system...
You just have to show that you can’t do a single damn thing. It’s the contradiction of the system. If you try working and then you try working part time, you do some volunteer work, you can lose your benefits. You can do that to some extent in Ontario as well. In Ontario, you can earn an extra 1600 $ a month and keep stay on disability. But people are always afraid that this is going to lead them to being reassessed. So, they fear what the government is actually going to do with them. It’s a tough call for people. Now the ACT teams in Ontario are permanently voluntary unless they have you on a community treatment order.
However, this doesn’t mean that they won’t pursue you even if you’re saying that you want them to go away. So, it’s kind of a fear. It’s voluntary, because it’s a community service and you have the right to say “I don’t want it”, but in practice, I know people who the ACT teams just kept showing up, showing up and showing up !
Supposedly, the minister of Health found ACT teams in Ontario with the idea that 50% of them will come from… it was called the Centre for Addiction of Mental Health, the place where I’m currently being facilitator. Fifty percent of them are supposed to be people who’ve been in an institution for a very long period of time in order to ease them into the community. This is not what is actually happening.
Lets go over some more of what the ACT teams are actually supposed to do. They’re supposed to have 80 to 100 clients and their staffing requirements are that they have a psychiatrist and 8 to 10 mental health professionals. I’ll talk about the urban teams... Some of them need two registered nurses, one trained in vocational rehab and there has be some addiction counselling experience. The remaining staff can be peer professionals, they call it “mental health workers”. There’s needs for an administrative person.
In the city, they’re supposed to be available seven days a week and have crisis workers available 24-hour a day to respond to calls. Seventy five percent of what they do is supposed to be in the community and not in the hospital. They have all these details about how often they met, and they met every day, they go over the plans and many procedures. They also have what they talk about “how they assess people for the ACT teams” and for example, one of the things they say they do is they use reports from family members and some friends when conducting assessment some people, which seems rather intrusive.
They also use psychiatric histories, these include medication compliance and then they look at all sorts of other things like social functioning, medical dental and other health needs, stuff like that. Following all that, they’re supposed to develop a treatment plan. Then they look at the short-term goals and the long-term goals someone might have. I had a conversation in a community meeting not too long ago with someone who wasn’t an ACT team person and he was given a report, a case study on someone on community treatment order, and he was saying this guy had been on a community treatment order for six months and it was a great success. And they reached their objectives. And I said “well, what was the goal for the person, you know, what was your goal for them, what was their goals for themselves reached by this community treatment order ?” He said he completely complied with the community treatment order. I said “yeah, but what was the goal, you know, what was to be accomplished ?” He said “well, he complied with all of his medication”. I said “yeah, but what was the purpose ?” It was like we were talking and I just… no connection on what we were saying, couldn’t understand the goal of the treatment itself for the person.
With the permission of the person, the person is part of the ACT team. The ACT team member will keep in touch with everybody in their life, basically family, friends and other services. This in fact is one of the criticism of the ACT team, that they become the person, they surround the person so their connection with other people in their lives often gets diminish.
I’ve known the ACT teams to do all sorts of different things including blood tests to be sure that people are compliant with their medication. Often, the ACT team will deliver the personal medication every single day and watch them swallow it. Or sometimes they’ll take them to the doctor and the nurse will come to give them an injection.
The law in Ontario is that you can only be forcibly medicated if you’re in a hospital and you’re creating a disturbance, you’re causing, you’re threatening violence on yourself or someone else. Then they don’t call it a treatment, they call it “restraint”, “chemical restraint”. So, that can happen then. It could also happen if you’re considered to be incapable of consenting to your own treatment because you don’t understand it, and then somebody else is appointed, your substitute decision maker, so that’s another way and the community treatment orders are now, because your substitute decision maker can consent to a community treatment order, this could now happen at home as well as in a hospital more easily. Even with more subtle ways of coercion, so when you’re in a hospital and you think I’m not to get out unless I do what they want, so you take your medication. The ACT team can do helpful things that keep your housing, help you get… say back on welfare if you’re cut off, things like that. So, it can sometimes seem I get a trade off if I do things I don’t want to do, so I can have this stuff that I do want. It’s a tough call and some people do want it, do want medication; for them, it works fine.
Some of the things that the ACT teams are supposed to do are evaluate symptoms of mental illness, educate the person about their mental illness and about their medication. I don’t know, but I would be surprised if they were gaining education about things like… well, actually, psychiatric diagnosis are very scientifically unreliable. And medication only works for a minority of people to treat exactly what they’re designed to do. I don’t see the information that they’re getting despite the fact that there is a great deal of research to suggest that these things are true. One of the things that the ACT teams are required to do is arrange for all clients medications to be organized by the team and integrated into the person’s schedule and to administer medications.
It’s different for everybody. Some people find the medication to be helpful and they like to continue taking it. I think, people here are more familiar than anyone else with David Cohen, professor at University of Montreal. He did a review on the effectiveness of neuroleptics. He looked at all the different research literature and found that for neuroleptics, which is usually used to treat what’s called schizophrenia. They have about a 34% rate, what’s called in that research “relapse”, which means return to the hospital. So, it seems like maybe for about the third of people they do use this antidepressant. There’s actually a summary of studies on antidepressants if anyone wants it. I was even surprised to learn how ineffective they are. If you look at the well conducted studies, the ones that use control groups and all those things that said that they’re supposed to do, the effectiveness of antidepressants is between zero and twenty-five percent, and the zero is more from the rating of the effectiveness by the persons themselves. Twenty-five percent is more by the rating of the clinician.
In Toronto, there’s about 24 ACT teams, people who were there for a very long time. There’s one ACT team better than the others, which shows that you can do a better job with a community treatment service if you decide to. This ACT team does not require that other consumer survivor be on medication. It has a full time peer support worker who gets paid at the same rate as the other people. It also employs at least two other survivors on the team. It will not administer community treatment orders and it has some success with people who’ve been in the institution 20 or 30 years and gradually introduce them into living in the community.
On the other hand, I also know an other ACT team, a hospital-based ACT team, that pursues this woman constantly although she tells them to leave her alone and they managed to get her own money taken away. So, for the first time, she then started engaging prostitution in order to have some spending money. And as for the ACT teams in community treatment orders, you may recall me telling you that when I raised that possibility with the government they said…
At no time, the government proposed that the service community treatment teams might play a role or component in providing service for a patient for a CTO. So, here’s some cases I know about. There’s an ACT team that had the police a system which treated someone in the community who was on the community treatment order. So, the police would go with the… initially they would go to the guy’s house and they were taking him to his doctor to get an injection. Then they decided that was very time-consuming, so instead they went with the nurse in order to inject the guy in his home. He didn’t want to get this injection, he was very intimidating to have the police there. Once, he said they even pulled off his belt to help the nurse get his pants down in order to get the injection. I told the police that what they were doing was illegal, there was no… they might have been told that they could do it in the new legislation, but they can’t and that they should be careful because they could be charged with assault. So they stopped doing it.
Another ACT team I know that was involved with a woman on a community treatment order. She was put on the drug Clozapine. It’s a drug that was first introduced in the 1960’s, but it was withdrawn because of its tendency to kill people. It depletes your white blood cell count potentially to a dangerous level. So you have to have weekly or every two-week blood tests to be sure this isn’t happening to you. So there’s a woman that I met who is in the hospital and she was being put on Clozapine and she was feeling very sick and she didn’t want to be on it. So she asked me to look at her records and I did. And I found out that she had been on the Clozapine before and it had lowered her white blood cell count to dangerously low levels. Now, in the compendium of materials on pharmaceutical drugs this means that the person should not be put back on this medication. Also, she is Asian and research shows people who are Asian are more sensitive to neuroleptics medication. So, there were a few things I took to her psychiatrist and said that she really shouldn’t be on this medication. He didn’t agree.
So I went to the psychiatrist in chief and asked him to evaluate it. And he didn’t agree. So she was then put on the community treatment order, where she was required to get this medication in the community. So she was discharged to a homeless shelter where the ACT team sort of, once a day, ground up her Clozapine in an apple sauce, watch her eat it and this is the great comprehensive case management service that she was getting in the community. Finally, her blood work showed that she did indeed her immune system had once again been depleted and they finally took her off the medication and didn’t renew the community treatment order.
I’ve been told that the main treatment for fibromyalgia is antidepressant and I’ve been given antidepressant to help me sleep, but instead they gave me a headache. So, what I do for fibromyalgia is all different physical things : exercise program, massage and lots of alternatives health care things, and… as you know about alternatives health care, it costs more then the publicly funded health care. So, I don’t think a doctor could forced medicate you for fibromyalgia. So, I don’t think it’s considered a psychiatric condition. It’s not in the DSM.
As far as health care rationing in Canada goes, I’d said that one of the ways that it’s… in Ontario anyway, our conservative government depleted our health care system by firing a lot of nurses when it came in to power. It’s rationed in terms of you’re lucky if you can get to see someone in an emergency ward within about six hours. I think that in mental health care, the fact that medical services are covered under the Ontario health insurance, but alternative services are not. So, for instance, it will cover for the most part of seeing a psychiatrist, but not so much for seeing, lets say, a psychologist or alternative physical health care, things like that. So I think that creates a reel bias in the system.
One of the justifications the Ontario government used or one of the stepping stone to justify ACT teams in Ontario is they referred to having a very successful experience in Brockville. And I found this particularly upsetting because I have been recommending that they try what was done in Brockville, which is actually not at all like an assertive community treatment team. What had happened in Brockville, about ten years ago, which they didn’t experiment and which there’s people who are going into the hospital a lot every year. And some of them, they just remained as they were; some of them, they just gave more money; and some, they gave more money plus supports in the community that were available when they wanted. So, they would call and they want them supporting the community. Well, they found that the people who just got more money stopped using the hospitals quite a bit to an extend that it actually save the government vast amounts of money because it’s much too far expensive to someone to be in the hospital then just to give the money directly. And they found that there’s even less use of the hospital and the people who had the money and the support they wanted in the community when they wanted it. So, they totally misrepresented it to say that this is a basis for developing the program.
There are some alternatives to ACT teams that you might have read about. The National Empowerment Centre has developed something called “personal assistance in community existence”, which takes a very different perspective on people as ACT teams do. It says that people should have control on choice, they should be responsible for their own development, they believe in recovery not just symptoms management, they have support from peers, they have an underlying perspective that problems are a complexe interaction of the physical, emotional and mental to spiritual in a way that unites every individual. And, they suggest that the solutions should be holistic and defined by the persons themselves. That’s very different than the symptoms management described in the ACT team models.
And on a brighter level, I was described by an author…. the difference between ACT teams and empowerment is that we need to look at addressing the social condition that causes people’s suffering, not just the management of people’s pain through medication.
Scientific diagnosis are actually quite scientifically unreliable. I mean, you’re probably knowing, yourself, you see three different psychiatrists, you get, at least, two different major labels and with that different medications. They found a lot of different influences that affect the diagnosis people get… for example, they did a study in England and they found that they wrote out all the characteristics of an individual. And they gave exactly the same things to a psychiatrist that one had a name that suggested that was a working class person and the other was given a name that suggested he was from middle class. They got different diagnosis, based on their class level. As you know, they tend to hand out the schizophrenia label more easily to people who are poor and the mood disorder label more often to people who are on same level class. Not all the time, but a lot of the time it works that way.
And even things like psychological tests. Originally, there is something call the MMPI, the Minister of Multiphase-act Personality Inventory. Which someone said “I guess if I don’t have a personality, they’re going to assign me one !” They had part of it for example, for femininity and masculinity, and the way they came up with these is : for femininity they introduced a whole bunch of diseases to see what they were like and this is a MMPI femininity. And for masculine they used guys in the army. So, help us, dividing from these two things, there is something wrong with you.
Psychiatric assessments are also incredibly unreliable. The best scale that exists in Canada right now is called “the violence risk of assessment guide”. That was developed partly in Ontario. It’s a really detailed family history, they look at your behavior, they look at your personality, they give you tests and it has on an individual level a 20% accuracy rate in predicting. I heard a psychiatric quote that apparently New York city cab drivers have a higher rate of dangerousness…
Alcohol is a depressant for everyone. “Depression” is used to actually describe a great variety of feelings. I’d say in general it’s dangerous to mix strong medication with alcohol for anybody. And actually no antidepressants are the drug most commonly used to commit suicide.
There’s a question about the difference in the response of people who are Asian to psychiatric medications. I don’t know what the source is, I just know that in some research, people of Asian descent have a greater sensitivity to the neuroleptics medications and they should be given lower doses.
So, we told a lot of different things, not all of which were here. Empowered because we speak somewhat for our personal experience and were sort of a like exhibits. Exhibit of a person... So, we suggest that they remain calm, that they basically diffuse themselves before they do anything else. They interact with people, they set the tone that they want by being courteous and respectful, they communicate, they ask questions, they listen and they don’t argue about what’s real. Because that really doesn’t help anything. And it’s actually better for the person not to be argue with, because she has probably been argued with a lot. Don’t assume that the problem is that someone is not taking their medication, then you talk somewhat about the research in the area of medication, that even if someone can be suffering from some withdrawal and this can indeed make somebody very agitated, so they could suggest to the person instead that they withdraw very, very slowly if they’re going to withdraw. But don’t go on assuming “why aren’t you taking your medication ?”
Allow the person space, because they like to have response time between them and the individual. And we can tell that most people who has been in the psychiatrist system are survivors of abuse. Research suggests we are 80%, so we are more likely to be intimidated by authority then even most people are. Mostly we are intimidated by police but… and they should know that most of the time, the person that they’re seeing, even if she seems aggressive, is primarily scared. Anything they can do to reduce the person’s fear will likely calm the situation. Some of the usual methods are sort of immediately taking control and exhorting authority over the situation can just make it worse for the person whose acting out of fear. So we suggest saying “what’s wrong ? Is there something that I can do to help you ?” Try to give the person some amount of choice, even if it’s a tiny choice. It helps to know if you aren’t completely powerless. Explain clearly what they are doing and why, don’t assume that they can’t talk about someone if they’re not there. Sometimes, if the person won’t respond at all to what they say, he will often remember every single word they say later on. Those are the main things to talk about.
Well, you know, it also is helpful. I was just reading an article on empowerment. And that was pretty amazing that barely there’s an article that’s written, that says, let’s see, by someone called Christine, that “some clients fall victim to abuse by professionals in an attempt to avoid feelings of loneliness and anxiety”. So, apparently, this is talking about the client that makes the professional abuse them. And I’ve read an article, I’ve got another guy saying that being a borderline personality makes psychiatrists sexually abuse you. You know it’s…
Plénière interactive 1A - La résistance aux instruments de contrôle
Jennifer Chambers
Militante
Ontario, Canada
Empowerment. Le mot anglais empowerment est une dilution du mot « pouvoir ». L’expression française est beaucoup plus spécifique : l’appropriation du pouvoir. L’appropriation du pouvoir ne laisse aucun doute à propos de ce qui doit se produire, que nous devons changer les relations de pouvoir entre les gens. Essayez de faire valoir que les survivants de la psychiatrie peuvent obtenir du pouvoir pendant que les professionnels de la santé mentale n’ont pas à en perdre aucun. Ça ressemble à l’époque où l’on disait aux filles : « Sois bonne en classe, mais ne sois pas meilleure que les garçons ». Cela pouvait nous rendre folles juste à essayer de le mettre en pratique. En fait, j’aimerais prendre le temps consacré à mon travail à faciliter mon appropriation du pouvoir. Je me demande comment les gens pour qui je travaille percevraient cela.
La communauté des survivants psychiatriques est un étendard dans le sens de changer le monde du contrôle et de la résistance sociale. Je veux parler des façons que nous utilisons pour faire cela et comment reconnaitre chacun la façon dont nous le faisons. Certains d’entre nous essaient de changer le monde en étant idéalistes. Nous avons une vision de ce que le monde devrait être, nous travaillons dans ce sens, nous ne nous contenterons de rien de moins en ripostant à la relation entre le système de la santé et les agitateurs de l’extérieur. Nous nous opposons vigoureusement à ce que nos connaissances soient erronées et nous utilisons notre indignation pour faire face au changement. Il est parfois difficile de déterminer ce que cela comprend, l’effet de cette approche, parce que les gens au pouvoir ne veulent pas laisser voir ce qui peut en résulter.
Voici quelques exemples de méthodes utilisées à l’extérieur du système pour provoquer du changement. En Ontario, lorsqu’ils ont permis les démonstrations contre les électrochocs, le psychiatre en chef du département de la santé mentale a dit qu’ils les avaient suspendus pour une période. Faire des exposés dans les médias est une autre façon de contrôler le système de la santé mentale de l’extérieur. Il y a un exposé d’un psychiatre torontois qui fait mention de deux personnes qui furent négligées et qui sont décédées. Ce fut surprenant, il y eut un résultat.
Ce noyau de notre association travaille d’une certaine façon en embarrassant et en insistant auprès du système de santé mentale. Il en résulte parfois des changements directs. Parfois, il en résulte que le système de santé mentale doive travailler avec un groupe. Et c’est notre groupe qui essaie de travailler dans le système ou qui travaille de l’intérieur. Nous essayons de faire avancer les politiques et les services en santé mentale un peu plus et parfois avant leur temps. Nous tentons de limiter l’oppression quand nous la découvrons. Nous essayons de donner une voix aux gens qui sont encore pris dans le système. Un exemple de ce genre de succès est comment des alternatives se sont formées (alternatives au système de santé mentale par des ateliers protégés). Ce qui signifie que beaucoup de gens qui étaient à l’intérieur et à l’extérieur des hôpitaux travaillent maintenant ensemble et se soutiennent mutuellement. En voici un par lequel les personnes vivant ou ayant vécu un problème de santé mentale peuvent approcher le problème de la psychiatrie. À Toronto, il y a un groupe alternatif. C’est une compagnie de nettoyage dirigée et menée par des personnes vivant ou ayant vécu un problème de santé mentale. Il y a là une femme qui pense que des personnes vivent sur son divan. Et quand cela se produit, les psychiatres augmentent ou changent sa médication. Ses collègues changent simplement son divan. Et tout va bien pour quelques mois jusqu’à ce qu’ils doivent changer son divan de nouveau.
Une autre façon d’influencer le système est d’inviter quelqu’un diner à l’extérieur à l’occasion. Cela signifie que nous avons changé quelques-unes des façons les plus conservatrices du système de santé mentale. Nous demandons aux services de la communauté en santé mentale d’agir à titre de services de crise. Il en existe un comme celui-là à Toronto.
Présentement, j’ai un contrat à court terme avec la plus grande infrastructure spécialisée en santé mentale et en dépendance aux drogues. Nous avons des ententes d’extension sur nos droits au centre de recherche auquel nous participons. Nous agissons à titre de personnel d’information. Nous évaluons du personnel ainsi que le centre. Nous commençons à comprendre de quelle façon ça fonctionne. Jusqu’à maintenant, les promesses de réussite sont meilleures que ce que nous n’avons jamais obtenu de l’institution en Ontario.
Nous sommes heureux de célébrer des victoires, comme sauver une simple vie. Vous devez rire de l’absurdité d’un système ou vous en porterez le fardeau.
Il est également stratégique et bénéfique de combiner les deux approches de travail, de l’extérieur et de l’intérieur du système, en travaillant à l’intérieur du système légal pour forcer le changement du système de santé mentale. Ceci peut être très appréciable parce que le système légal est une forme dans laquelle la vérité a une chance de l’emporter et de se faire entendre. Par contre, il faut beaucoup de travail pour rassembler le matériel nécessaire pour finalement se rendre jusqu’à la présentation de votre cas. Une façon d’y arriver est d’être simplement présent et aux aguets, il faut surveiller et enquêter. J’ai facilité la tâche à un survivant qui a subi deux enquêtes. Il y a eu un premier signe qui est arrivé en Ontario où je siégeais à une audience pour confirmer les failles du système de santé mentale, les failles de la société et l’écart entre nous et la police. À Toronto, un homme fut incendié par des gens. Le journal relata l’incident en mentionnant que si l’homme avait pris sa médication, cela ne lui serait jamais arrivé.
Une autre façon de travailler avec le système légal est d’obtenir ce qu’on appelle un statut d’intervenant pour les cas légaux de cours. Cela signifie que les survivants peuvent actuellement assister aux cas de cours. Nous pouvons y participer à titre de membres d’un parti, interviewer des témoins et nous pouvons y présenter des faits et des preuves. À cet effet, j’ai organisé un groupe au cours de l’année 1999 au sujet de nos droits sous la Charte canadienne des droits et libertés pour étudier un cas s’étant rendu devant la Cour suprême du Canada. Et nous avons gagné quand la Cour suprême a décrit comment la loi dans le système de santé mentale doit être appliquée dans le système judiciaire au Canada. Maintenant, c’est un point sur lequel nous devons porter toute notre attention et continuer de veiller parce que ça ne fonctionne pas de la manière dont la Cour suprême l’a établi. En fait, la totalité du système de justice, qui est un autre instrument de contrôle social auquel plusieurs d’entre nous sommes reliés, est ouverte au changement. J’ai parlé à des juges et j’ai organisé des rencontres à Toronto de façon à ce que nous allions parler à l’École de police de Toronto durant la semaine où il est question des relations avec les citoyens. Eux appellent parfois les personnes des « gens émotionnellement dérangés ». On y utilise des expressions comme « N’argumente pas avec les gens à propos de ce qui est réel ». Oui, mais nous ne sommes pas tous dangereux. La majorité de nous ne le sommes pas. Je connais un cas exemplaire où un officier a pu maitriser quelqu’un verbalement et convenablement plutôt que de l’insulter ou de lui tirer dessus.
D’autre part, certains membres de notre communauté ne veulent pas vraiment de changement substantiel. Ils veulent simplement avoir un meilleur accès à tout service disponible. Et cela peut être restreint dans une communauté où les gens approchent le système de santé mentale de façons différentes. Mais cela compte aussi parce que gagner du pouvoir commence par la connaissance de ce que vous voulez pour vous-même. Et chaque individu est un monde en soi et doit être perçu comme tel.
En dernier lieu, je parlerai de la résistance au contrôle social dans laquelle j’ai été impliquée, utilisant toutes mes ressources, anciennes et nouvelles, apprenant et enseignant. La connaissance est réellement le pouvoir !
Avec le pouvoir, on peut faire des choix et influencer les preneurs de décisions; du moins, les embarrasser. On peut apprendre aux autres les succès acquis et construire à partir d’eux. Un bon exemple de connaissance pratique est de tenter de démontrer que les gens qui ont été étiquetés schizophrènes n’ont pas la chance substantielle de se sortir complètement de ce que peu importe ce qu’on leur a mis comme étiquette à l’origine; un résultat qui n’est pas relié à la médication. La connaissance pratique est de savoir ce que signifie l’utilisation d’antidépresseurs. Le haut niveau d’efficacité d’un antidépresseur se situe entre 0 et 25% selon la littérature de recherche. C’est surprenant lorsque vous voyez toutes les réclames qui les présentent comme étant la réponse pour les gens malheureux. Et, comme vous devez également le savoir, il n’y a rien jusqu’à maintenant dans les recherches qui mentionne les effets positifs et bénéfiques des traitements recommandés.
Chacun a besoin d’éducation pour s’ajuster aux stéréotypes des autres. Ça peut être un choc de constater que c’est tout le langage du corps qui absorbe notre expérience personnelle. Il y a beaucoup à faire, mais beaucoup également que nous ayons déjà accompli. Notre libération nécessite chacun de nous avec chacune de nos démarches pour générer du pouvoir. Pour être plus solide, la communauté a besoin des différences de chacun, des valeurs et des batailles de chacun. Il est important de considérer nos différents points de vue sur ce que devrait être le système de santé mentale. À une certaine période, nos communautés pouvaient être affaiblies par un manque de reconnaissance réciproque des unes envers les autres. Notre pouvoir d’accomplissement comprend la valorisation de la perspective de chacun comme alternative à un diagnostic. Comme Gandhi a dit : « Nous devons être le changement que nous voulons dans le monde. »
Alors, aussi bien combattre l’oppression et le contrôle social qui tente de nous diminuer; célébrons-nous. Avons-nous déjà vu un groupe de survivants à la psychiatrie, ensemble, dans une pièce pour célébrer ? C’est un grand évènement !
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