Workshop 9A - Let’s end prejudices !
Paul Reeve
Coordinator, Mutual Aid Psychiatric Survivors
Alberta, Canada
Reflecting a bit about why I’m here takes me back about one year ago. I’ve lived in Ontario and it was about this time, last year, that I was introduce to Bill 68, which was a new mental health act.
My first hospitalization was 35 years ago. My most recent was in January this year. And it was a forced hospitalization. The new mental health act, in Bill 68 last year, brought in a very coercive… it’s a very coercive piece of legislation. Took away, what I believed, a lot of my basic civil rights and I was directly impacted by the legislation.
The strongest reaction I had to that in the Spring was to go away and hide. I was afraid of it. And I felt a lot of sadness to live in a place that wouldn’t honour me just as I am. They wanted me to respond in a way that they taught was best. And I remember it was April and the advertisement for the symposium came out and it was called “madly empowered”. I had a reaction to that. I said “Oh, that’s great ! It’s about power, it’s about standing my ground.” And then my reaction was more about “wait a second, that’s a label too”… I will talk quite a bit about labels, the prejudice, the statement that is attached to labels. So, I was very hesitant, but I wrote and said this is what I wanted to explore.
It was important to me for two reasons. Actually, I guess there are three points. One was about the label that was being put on me, a diagnosis. And what that meant to how I could function in my community. The other was about organizations, both the mental health system and consumer system, because I had some strict calls with the consumer survivor system as well as organizations.
I think the most important when it came to my mind was about how I labelled myself. What do the labels mean and how much I think I have bought into them, bought into probably a medical model into labels. …back about ten years, in 1991, I said… I mentioned that my first hospitalization was 35 years ago. I think my consciousness came to awaken about ten years ago. And that’s marvellous. Met some marvellous people, had some powerful healing, been part of some wonderful groups… consumer survivor groups and other groups, support groups in my community. I don’t think I’d ever looked at my own… very closely at my own prejudices and even how I turned out in myself. I spent a summer in a lot of darkness. I tend not to use the term “depression”, but many people do. I tend to see it just as a darkness for me.
Trough the summer, I explored the power of the language and the power of words, I felt that from outside, from people suggesting in fact, forcing me into hospital for telling me who I am according to a diagnosis of my label. But more important is through the summer, it was for myself to reflect and understand that in some ways, I bought into that. I was really shaming myself about who I was… that’s a powerful awareness for me anyway.
So I came to understand about language and words, the power of words, and I’ve… in typical fashion for me, I like to read a lot. So, I’ve read a lot about language and words. And so I talked just a little bit about language around individuals and I think is important language around organizations. I worked with self-help group called Mutual Aid Psychiatric Survivors. And maybe I reflect a little bit about the sorts of issues that challenge the words and challenge the labels. One of the speakers said “knowledge was power”. I think I’ve come to understand that very well.
I think the most important revolution in my own healing and recovery was my challenging of the medical model. I’ve read some wonderful books and I highly recommend one that is called Blaming the brain, which helped me better understand why I didn’t particularly like medications nor were they particularly effective for me in fact. I’ve tried many, many courses of different medications over my life and I had very powerful reactions to them. They call them “side effects”, they are totally debilitating much of the time. So it wasn’t even an option for me to ingest a pill. I’ve come to understand that my… the darkness that envelopes me from time to time… in some ways even as being a gift to me. But it certainly has been much more of a spiritual or an emotional issue for me. It’s not about my brain, it’s not about my mind, it’s not even particularly about how I think : it’s more about how I can be in this world.
It brings me another book I read which I’d highly recommend, which is called Care of the soul, by the author Thomas Moore. And I really woke up to the gifts of depression, which is one of the chapters in this book. It really helped me shift my thinking, my whole belief system and certainly understand this darkness from a different conceptual perspective. That it was a gift… it is about me, it’s about my life and my growing, my development.
Jennifer Chambers talked about the levels of involvement to us, consumers survivors, survivor movements. And so I put myself in a second level she talked about, with one foot in and one foot out. So, I have still some hesitations, some scepticism about systems at all, whether they’re survivor systems or mental health systems. But I am a part of this. And I feel safe here. That’s quite interesting. I rarely share my own story, personally with audiences, but I feel safe here. And I’m grateful for that.
So my journey in thinking about power is empowerment from within and from without.
I think most of you are exposed to the idea of… and I would ask everyone to challenge their own thinking, their own prejudices, their own stigmatizing, particularly from within yourself. That’s the words that you use in your mind… to think carefully about what you believe about that, and I encourage people very, very much to challenge themselves if you find yourself thinking that you are ill or disabled or diseased or any of those kinds of words, you are who you are. And to value and respect exactly who you are and where you are.
Lots of examples of things we’re doing as an organization that I am really pleased with is about getting out amusing the media, talking to the public, we’re writing, we’re doing television, cable television, programs, out talking to groups or go into the hospital, we debate in the hospital, challenge the hospital about their practices, that’s very, very important and educating particularly people in the mental health field. We’re advocating. Everybody is entitle to… all of the resources that they need to participate fully in our community. That’s about access and inclusion in our community. It’s about meeting a person entitled to be part of my community and anything that gets in the way of that, we challenge… sort of being very aware of what people are saying. And if they’re putting a kind of barrier, I guess that reflects on the individual too.
Advocacy. We’re involved very much with planning in our health, mental health bodies, government bodies. We develop the suicide intervention system in our community that helps people if they are feeling suicidal, thinking suicidal, to connect to us. They can talk and say it without being locked up which often happens. It’s about support. We’ve made a coalition with some other groups around employment. We’re helping people to find real work for real pay. It’s about having people to go out and talk to employers and get them to allow people the support and accommodation they need, how important work is to us, just as housing and food. Allan Strong mentioned that we need a home, we need to work and we need a friend. I think that is sort of how we approach things.
As an organization too, it’s very important for us … we’ve set up our values in a vision and we’ve written these out and it’s been extremely helpful to us in having people to come and join and understand where we’re coming from. So I encourage organizations to adopt these sorts of foundation, the basis of the foundation. There’s so much ! So, it’s about relationships, it’s about connecting, connecting to yourself, about connecting to others and it is about using the community. I’ve heard different stories, so I just suggest people to be beware when you connect with other organizations and also to be very wise. Make sure they share your values. Don’t go into a partnership with people who can’t support your values because ultimately that breaks your organization. That happened to some of us. So, let’s end prejudices. I’ve talked about sensitization of yourself and others, and conscious raising of yourself and others, and those will be determining factors of change.
Atelier 9B - Pour en finir avec les préjugés !
Linda Webster-Taggart
Militante, Research, Education, Evaluation and Support (REES)
British Colombia, Canada
C’est un plaisir pour Ian Taggart et moi d’être parmi vous à cette conférence de novembre 2001. Nous sommes ici pour mettre fin aux préjugés qui ont longtemps accompagné la maladie mentale. Ian a travaillé pendant dix ans avec des professionnels pour mettre fin aux préjugés qui accompagnaient la maladie mentale. J’ai également travaillé dans le domaine de la santé mentale dans des organisations et, plus récemment, à REES.
REES reçoit son argent du CHR, Capital Health Region, de Victoria, qui existe depuis dix ans. Il fournit les services en santé mentale à Victoria et aux alentours, ce qui est séparé du Ministère de la Santé provincial.
Ian parlera de REES, de notre centre de ressources, d’éducation, d’évaluation et de soutien. Le centre est surtout dirigé par des consommateurs survivants. Il parlera des consommateurs survivants professionnels et des membres des familles qui travaillent ensemble sur divers projets vers lesquels REES les dirige. Quelques-uns de ces projets sont le projet Pandora, l’atelier d’art Pandora, le Lee Avenue Network, le Réseau de Lee Avenue et, dernièrement, il y a eu un programme très important : Le soutien entre pairs. C’est avec plaisir maintenant que je vous présente M. Ian Taggart.
Ian Taggart
Militant, Research, Education, Evaluation and Support (REES)
British Colombia, Canada
Premièrement, le thème de cette conférence est « De la noirceur à la lumière » et celui de cet atelier est « Mettons fin aux préjugés ». Linda nous a raconté que REES est un centre d’éducation, d’évaluation, d’appui et de soutien. Nous offrons des ateliers d’art où des consommateurs survivants peuvent se joindre à l’organisation et être soutenus par des professionnels qui interfèreront dans le sens de promouvoir l’appropriation du pouvoir des consommateurs survivants.
Maintenant, je vais parler de choses spécifiques que nous faisons. Nous avons instauré notre propre site Internet et effectuons des recherches sur Internet pour les ressources d’informations de notre communauté. Nous avons réalisé un manuel de ressources provinciales en ce qui concerne le soutien entre pairs. Nous faisons de la recherche d’informations sur les médicaments et tous les diagnostics et statistiques concernant le DSM. Toutefois, comme de raison, nous ne les acceptons pas tous nécessairement.
Quant à l’éducation, nous offrons un programme de formation pour le support entre pairs de quarante heures. Nous demandons aux gens qui vont bien, qui se sentent bien, de mettre en valeur leurs habiletés afin qu’ils puissent fournir leur soutien. Par exemple, en invitant des pairs à prendre un café et leur faire part de leurs savoirs, leur faire des suggestions, des recommandations, les aider à réaliser les bénéfices de leurs incapacités et les brancher au système si telle est leur volonté. Il y a aussi l’entrainement à l’estime de soi et à la liberté de l’esprit.
J’ai mené des ateliers sur ces sujets en utilisant des manuels spécifiques pour cette tâche. L’idée de base est la recommandation. Nous pratiquons toujours la recommandation individuelle et systémique, des conférences sur le partenariat, et deux fois par année nous invitons des personnes ressources à venir parler sur des sujets comme la prévention du suicide, la recommandation systémique, le support entre pairs et d’autres sujets du genre.
Évaluation. Vous pouvez constater le travail entre pairs des agences de la communauté, ainsi que les nouveaux équipements résidentiels que nous mettons à la disposition des gens.
Nous avons quelques exemples de projets pilotes. Nous avons des gens qui, pour différentes raisons, n’ont pas réussi à travailler ou à commencer une formation reliée au travail. Pour eux, par exemple, il y a une entreprise d’horticulture où on a pu apprendre, travailler et être payé pour le travail. Il y a également une compagnie de déménagement où des gens peuvent également recevoir une formation pour éventuellement y travailler.
Il y a un lieu où les consommateurs survivants se rassemblent et donnent leurs avis aux professionnels qui veulent entendre ces préoccupations et ce que nous voulons comme amélioration dans le système.
Les initiatives. La professionnelle pour qui je travaille est assez éclairée et propose d’offrir trois cents dollars à quelqu’un qui voudrait démarrer un projet d’art ou d’artisanat pour également l’aider à apprendre comment le mener à terme. Alors, c’est un montant de 300 $ qui est disponible pour ce genre de projet.
Groupes témoins. Encore là, nous avons une ouverture avec des professionnels qui sont à l’écoute. Nous exprimons ce que nous voudrions voir arriver. La compagnie de déménagement à laquelle je faisais référence plus tôt est un de ces projets.
Structure. Je suis le coordonnateur à l’éducation et au matériel de soutien de REES. Nous avons débuté avec trois personnes, dont l’une était moi. Nous sommes maintenant près de quinze. Et comme je l’ai dit, c’est principalement mené par des consommateurs survivants et avec très peu d’implication des professionnels.
L’équipe. Comme responsable de formation, nous avons un consommateur survivant qui apprend aux membres à utiliser les ordinateurs. C’est un autodidacte dans ce domaine. Il peut en démonter un complètement, le réduire jusqu’aux boulons et le reconstruire.
L’âme de soutien des pairs travailleurs. Je vous ai parlé plus tôt du programme de formation de soutien entre pairs. Ce sont des gens qui ont reçu des formations techniques à ce sujet. Nous avons un feuillet qu’on publie avec des graphiques de couleur et qui couvre toute la région de Victoria en Colombie Britannique. Nous avons un consommateur survivant napolitain, un italien, qui est entièrement responsable de ça.
Coordonnateurs volontaires. Ça va de soi. Il y a quelqu’un responsable des heures de travail des volontaires. C’est Sarah, une réceptionniste formée. Nous avons une personne qui a travaillé comme secrétaire médicale qui est venue travailler pour nous. Elle a assemblé un guide de ressources pour les partenaires en santé mentale. C’est un livre considérable qui couvre tout, de la dépendance aux drogues à la guérison, le transport, l’hôpital, jusqu’à la recommandation. Tout y est, tous les numéros de téléphone pertinents de Victoria y sont inclus.
Financement. C’est la professionnelle bien éclairée dont je vous ai parlé qui en est responsable. Et finalement, la guérison. Il y a là de l’espoir. L’espoir signifie l’essence émotionnelle de la découverte. On nous promet que les choses peuvent changer. Aujourd’hui, les choses ne vont pas si bien, mais ça peut changer.
Workshop 9B - Let’s end prejudices !
Linda Webster-Taggart
Activist, Research, Education, Evaluation and Support (REES)
British Colombia, Canada
It’s a pleasure for Ian Taggart and I to be at this conference, to join hands and talk about the stigma which for so long as accompanied mental illness. Ian has worked for ten years now with professionals in ending the stigma which surrounds mental illness, including most recently his work at REES. I worked in mental health areas and more recently for two years at REES.
REES is a research, education, evaluation and support centre ran principally, specifically, by consumers. Ian will talk about our mandate and philosophy. He will talk about partnership and the very succeeding facilities which REES refers people to, such as the Pandora Arts Place, the Avenue Network, the Healthy Life Start Program, and lastly, but very importantly, the Peer Support and Advocacy Program. Now it is with great pleasure that I present you Ian Taggart.
Ian Taggart
Activist, Research, Education, Evaluation and Support (REES)
British Colombia, Canada
The plan has to do with Art shop, mainly a consumer prevention organization, and they actually have some professionals support, professionals who don’t interfere a lot in what we do and who really believe in consumer empowerment.
Our research is done on the internet. We’ve set up our own web page. We search on internet for community resource information. We’ve set up a provincial peer support manual. We researched information on medications and all the DSM for categories of mental disorders, but which we don’t necessarily all agree, of course.
Under education, we do a training program in peer support. Forty hours training session. When we train peers to work with peers, we ask that people are doing well, that they feel well, and that they can provide just one on one support whether if you’re taking people for coffee or doing individual advocacy. Helping them get their disability benefits, plugging them into the system if they want to be in the system. Self-esteem and assertiveness training that’s … I give workshops on those topics and I use specialized manuals for the task. Advocacy, I’ve touched on. We do, again, individual and systemic advocacy. Partnership conferences. Twice a year, we organize… we get speakers on topics like suicide prevention, substance abuse, systemic advocacy, peer support, topics like that.
Evaluation. As you can see peer reviews of community agencies and residential care facilities by that, we mean boarding homes and alike. Support that we give at the centre. We want people to feel free to drop in, to just chat or… I help them on housing issues and so on.
Pilot projects, articles through program for example, through consumers pushing the system. We’ve got people who for whatever reason haven’t been unable to work, to start work training at horticultural companies basically to learn a lot of gardening and farming skills and you get paid. There’s some moving company where people get hands on training in that area. So those are some examples.
There’s a place where consumers get together and advise those professionals who want to listen to our concerns and what we want to see change in the system.
Consumer initiatives. The professional I work for is fairly enlightened and she’s gotten some funds together to 300 $ per project actually if someone wants to set up an arts and crafts project or learn how to drive or any of these kind of things. Then 300 $ is made available for those projects.
Focus groups. That’s where we have input and, again, with professionals who listen, we say what we want to see happen and the moving company that I refer to earlier is one of those projects.
Structure. I’m the coordinator of the education and support component of REES and we started off with three people. One of whom was myself. Now we have about fifteen and as I say it’s mainly consumer driven, minimally professional involvement.
Consumer staff. Training position… we have a consumer who instructs people on how to run computers. He’s self-taught on computers, he can take them apart to the nuts and bolts and put them back together again.
Peer support workers. I’ve mentioned earlier the peer support training program. Those are people who have been given instruction in techniques on how to do that. We have a newsletter put out with colour graphics. We have a person who is exclusively in charge of that, it’s a consumer program covering all Victoria (British Columbia).
Volunteer coordinators. That’s speaks for itself. Someone who is in charge of the hours of the volunteers. Receptionist, project staff. I’ve got a book here. We have one person who is a medical transcript. She came to work for us and she put this together : resource guide for partners in mental health. It’s a tremendous book covering anything from addiction and recovery to transportation, to hospital, to advocacy, there’s everything, all the phone numbers in Victoria in there.
Funding. That’s the professional I was talking about who is fairly enlightened and whom I work for. The rest of it, I’m just going to breeze through it extremely quickly… Partnership. You’re going to read what’s on the screen. What is needed to achieve our goals. And finally, recovery. There’s hope there.
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