Day 1 – April 2, 2005

Tape 1 – Side 1

Bonnie Burstow:

… the drug panel is to consider people testifying today and tomorrow … the shock panel is to consider people who give testimony next weekend.

The panel is operating on a quasi-independent level from CAPA. Why I’m saying that is that the panel is not controlled by CAPA, there is only 1 CAPA member on each panel – that’s the Chair, and all 4 other people are not core members of CAPA. I would like now to introduce members of the panel, so I am going to name names, and if the person would just stand up, you will see who the person is. I am the Chair, I am Bonnie Burstow and am a faculty member at the Department of Adult Education and Counselling Psychology at O.I.S.E. at the University of Toronto and I’m chairing the Drug Panel.

I’d like to introduce Leah Cohen. Leah is Vice-Chair of the Health Professions Board, once vice-chair, former vice-chair of the Health Professions Board. Next to Leah is Dr. Ernie Lichtman who is a long-time faculty member in the Social Work Department at the University of Toronto and a long-time activist.

I’d like to introduce Dr. Sharif Mojab, at the Department of Adult Education and Counselling, Psychology … at the University of Toronto.

Michael Volpe who was supposed to be on the panel cancelled for reasons of covering the ill health of the pope and has been replaced by Bonnie Diamond. Bonnie if you could stand up, and thank you so much for coming and joining us at this late date. Bonnie is a long-time women’s rights activist and she’s currently executive director of the National Association of Women and the Law.

That said, one more thing. I’m going to ask people if they’re testifying tomorrow to not testify today. I’m going to start going down the list for anyone who’s not here, we’ll try to revisit them, and once everyone who is here who is on the list has testified, we will then open it up to anyone else who has been on psychiatric drugs who would like to testify.

1 One more thing before we start. Out of respect for people here and what this is about, we’re going to ask that people who are coming and representing organizations, not distribute information about those organizations. CAPA is not distributing information- we are asking other groups not to distribute information.

Thank you very much, and the first person on my list is Linda Aiken.

[not present]

We will revisit – the next person on my list is Graham Beck. Everyone has 10 minutes and we will let you know when 10 minutes are up. We can probably let people go for 11 minutes, but think in terms of the 10 minutes so that everyone has equal time.

Graham Beck:

I’ve got copies of my testimony which I can give to the panel afterwards. I have a written presentation. First of all, I want to thank you all in advance for your time and attention. You will have to forgive me for any lapses of memory I might experience, as I was just a child of 6 or 7 when my experiences with psychiatric drugs began. I will be as accurate as humanly possible.

In the mid 1960s, I was labeled with “childhood schizophrenia” following a visit to a psychologist, arising from a referral given by our family pediatrician. Visits with other psychologists and psychiatrists followed as did a series of prescriptions written by the same pediatrician. During this period of my childhood, I experienced physical symptoms including numerous stomach problems such as frequent vomiting, diarrhea, along with fatigue, and an unpleasant taste in mouth such as rotten eggs, that type of thing. As well, I experienced frequent severe nightmares, including a sensation of smothering or being physically trapped. I do not intend for people to draw any conclusions from the above, but I will point out that as a grownup and after many years of being drug-free, my digestion is in excellent shape and although I suffer from a certain degree of insomnia, I seldom experience nightmares. My early adolescence was relatively drug- free. When I was 16 years old, my parents had me placed in a group home

2 following a petty conflict that unfortunately escalated. Staff had me involuntarily admitted to the Queen St. Mental Health Centre, now the CAMH. Upon my admittance, I was given a large white tablet that would leave me groggy and virtually incapacitated for close to 24 hours. This was in February, 1975. The group home agreed to take me back, provided I would agree to take Camelerol (sp.?). The prescription was written for 50 mg and be taken 4 times daily. This was later increased to 100 mg, 4 times daily. I was still expected to get up in the morning and attend school like any other teen despite the fact that the drug left me feeling tired and mentally slow. During the time I took this drug, I also showed a substantial weight gain, something like 15-20 pounds over a period of a couple of months. At 5’8” or so and about 125 pounds, I had been your typical slender teenager up to this time. By mid Spring 1975, I was unable to fit into my pants.

Following the end of my fairly brief tenure at the group home, I would spend about the next 18 months as an out-patient at Queen St. Mental Health Centre. During the initial period, there the Mellaril prescription was supplemented with one for Valium, 10mg, twice daily. After a few weeks of this, the ward psychiatrist took me off all the drugs in order that some tests could be performed. Withdrawal was relatively mild, but I still experienced sleeplessness, sweating and considerable anxiety. Following the testing, the psychiatrist on Queen Street’s Adolescent Unit, put me on a drug called Newleptol (sp.?) The initial dose was 15mg to be taken at bedtime. This left me relatively unimpaired during the day but I noticed that it caused severe dry mouth and my nose was all stuffy at night. The doctor actually had indicated that I might experience these effects. Things would continue this way for the next year.

This time, a new shrink came to the ward. The dosage was at this time increased to 20mg, twice daily. This proved to be the most miserable experience I had ever had with neuroleptics. I felt almost immobilized but paradoxically at the same time, my nerves were jangling constantly in addition to the other symptoms I already mentioned. From what I understand, this was still a relatively low dosage. There were others on the same unit receiving many times this amount of the same drug. This situation was unbearable and after a fairly short time, I semi-surreptitiously stopped taking the drug. To clarify this, the early dose was given to me during my days at the institution. The second was supposed to be self-administered after I went home in the evening. I stopped taking the drug at home initially

3 and I eventually I just refused it at Queen St. Fortunately, this wasn’t contested. I guess I was fortunate, lucky there because my experience is that things are frequently forced on people. Anyway, at this time, I was 18 years old. I am now 46 years old and I have been entirely drug-free since 1980. My physical health is generally good, and I have found other ways of approaching the crises of life, that like everyone, I sometimes experience. Given my experience as a child and teenager, I would never again willingly put these substances in my body. [applause]

Bonnie Burstow:

Thank you Graham. Does anyone have any questions for the panel for Graham?

Question 1:

Do you think that you needed the drugs that you were given as a child? What do you think would have happened if your parents had pursued some alternate path other than drugs?

Graham Beck:

For one thing, there was a certain amount of abuse in my background so I think that had a lot to do with it anyway. I mean physical and emotional abuse. Fortunately, I wasn’t sexually abused in any way. I think that lay at the root of it anyway. Drugs are no answer for that type of thing. I just needed to be treated generally better at home and at school, maybe somebody to talk to, to believe in me, I mean, that’s another group that’s marginalized is children frankly. And this is in the 60s, before any real kind of enlightenment of parenting, or childrearing came along. That’s my take on that one anyway.

4 Question 1- followup:

So in a sense, the drugs were being used as a behavioural – just to shut you up, to calm you down.

Graham Beck:

Exactly, that’s my feeling on it, yeah.

Question 1 – followup:

Today, they might just put you in front of a television set. I don’t mean…

Graham Beck:

What I need is what I’m doing today- I have supportive friends around or family, either biological or chosen.

Bonnie Burstow:

Anyone else have any questions of Graham? Back to our first person again, Linda Aiken are you here? Moving along- Jennifer Chambers. Is Jennifer Chambers here? Once again moving along, Rosalynn Durdy.?

Rosalyn Durdy:

I’m afraid my experience is far different that I’ve come across, but here I go. I haven’t got any particular prepared notes because I’ve got so much to talk about. I came from a good old English, genteel background. I was born in September 1920 and I ended up at Queen Street Mental Hospital after having gone--- my whole family background was in nursing dating back to my great-grandmother, my grandmother, my aunt had been a public health nurse in west Toronto. I took the course of training in Red Cross during the war with a nurse Riesen. I also have my First Aid with St. John’s

5 Ambulance. I also got my Life saving medal, my bronze medal in Lifesaving Certificate. I have Business experience, plenty of it. I’ve worked for 40 years. I had worked for 40 years. I’m retired now. I ran into situations that I had absolutely no control over. There was a war remember, and as a Red Cross nurse, I had 2 uniforms, a white one and a blue one, and I lost many friends in that war, and one of my jobs was to meet the trains coming in with the women, the war brides and their families. I stood at that train situation and tears just poured down my cheeks. After working, I’d be worked up and I became in Business. I took a Shaws business course. I worked up in Business to become secretary to two Vice Presidents and General Managers consecutively. I quit there and went up to the University of Western Ontario. My job was to sit in and take the Minutes of the Board of Governors meetings. I never got into such a mixed up, messed office in my life. I had to get into adverse circumstances to fill the place of a woman who died at childbirth. The equipment was poor and I was expected to pick up and learn a typewriter that I never even seen or heard before or since, and I was expected to learn it without any assistance from someone to teach me, or to pick it up without even a book. I’ve got more to tell but I haven’t got that much time.

Then I came back to Toronto. If it hadn’t been for the Dean of Women, I would have gone out of my mind. I came back to Toronto and I worked for the Department of Planning and Development which was the Ontario department of Planning and Development, which were the people that planned the City of Mississauga. My job, I worked to the consortium for about 6 men, one being the Deputy Minister. At that point, every single official letter that went out in connection with that was my typing with the dictator’s initial at the bottom. Also, a new Minister came in and I was offered the job as secretary to him, which I took. I never was so bored in my life. I spent most of my time, sitting typing personal letters. I quit and got a couple of other small jobs working between office overload. When I quit, something happened I can’t put now, but I got to a point. I tried to commit suicide.

Now, there were things in there, anyway I never did get there. I had gone to visit my brother, brother’s baby and sister-in-law at the hospital. When I came out, I turned the opposite way. I was driving. I came to a large bluff. I was going to drive that car over. I got it to the edge. I put it in gear to move. It didn’t, it wouldn’t. I tried it again. It still didn’t move. I thought well I’ll back it up. It backed up. I did it again to go forward. It wouldn’t,

6 so I ended up losing my interest because I wondered why I wouldn’t work. I backed up, that car went forward. I got home. I got to a gas station. It turned out that the car was out of oil. Now then, I thought there’s something wrong with me. I’ve got to do something about it. I went to a doctor, nothing, she couldn’t find anything wrong with me. What she did, or what I asked her, I said would you consider, do you think it would be a good idea to see a psychiatrist? She said, it might be. I went to see a psychiatrist. I wept buckets. The thing was, the advice he gave me I thought well if that’s what’s wrong with me. He said what I needed was sex. Now then, I grew up with a background dealing with the church because my father had been the superintendent of St. James Cemetary for years and years, and we lived in that background. My father’s boss was the Dean of the ___ Committee, Cemetary Committee of St. James Cathedral. Now then, I ended up experimenting. I jumped from the frying pan into the hottest hell I ever got into. I lost my self-confidence, my self-respect, everything. I got working again…

Bonnie Burstow:

Excuse me Rosalyn, we have a problem here. The 10 minutes have gone by, so we’re not going to cut you off but we do need you to come to the issue of the drugs.

Rosalyn Durdy:

I’m sorry, I felt I had to show, give this. The last remark I got from Whitby Hospital in 1982 was that I was, what’s the term? I had been on drugs…

Bonnie Burstow:

Could I ask you some questions? This might help. I’m wonder if you could tell us what drugs you were on?

7 Rosalyn Durdy:

I was on Lithium, Stelazine and there were others in there, but the worst one was Haloperidol and… My mind was a blank for years. I ended up for 20 years in Craigly Nursing Home.

Bonnie Burstow:

Were you on the drugs for 20 years?

Rosalyn Durdy:

On those drugs for 20 years. My brain felt, I was busy all the time. My work in the church, I worked as a volunteer at Craigly Nursing Home, teaching exercises twice a week.

Bonnie Burstow:

I wonder if you could tell us something about what it felt like being on these drugs?

Rosalyn Durdy:

Hell, I continued working all those years, after I got out of Queen St. There’s a real story, I’m sorry.

Bonnie Burstow:

It’s ok, you’re doing fine.

Rosalyn Durdy:

There’s a lot more to tell. I’ve got a new computer. At my old age I’m going to learn. I got it started. My life story is going to be written in detail.

8 I’ve got plenty to tell that will certainly straighten around a lot of the mess that people are going through in psychiatry right now.

Bonnie Burstow:

You said your mind went blank when you were on the drugs? Was that a common reaction for you?

Rosalyn Durdy:

No, it didn’t go completely bank. I felt it was full of cotton batten.

Bonnie Burstow:

Did the psychiatrist tell you that’s how you would feel?

Rosalyn Durdy:

Pardon?

Bonnie Burstow:

Did the psychiatrist who put you on the drugs tell you that’s how you would feel?

Rosalyn Durdy:

That psychiatrist was the same one that was at Queen Street Mental Hospital, that I had delusions of grandeur. So I had delusions of grandeur and he didn’t know damn well the work I did years ago. Or the family background I came from.

9 Bonnie Burstow:

How did you get off the drugs?

Rosalyn Durdy:

I got him over the years later, at Whitby, and he was the one who put me on those drugs, and he was the one who wrote in the report, because I’ve got copies, clinical records now, and the clinical records at Whitby, and now I know exactly what I’m coping with.

Bonnie Burstow:

Were you able to get off the drugs?

Rosalyn Durdy:

Yes, and I ended up with a doctor that I had at Craigly, about 18 years, no, it would be 12 years. My back was broken and I’m quite convinced it was the combination of Haloperidol and cholesterol pills.

Bonnie Burstow:

What exactly happened to your back do you think because of the Haloperidol?

Rosalyn Durdy:

My back broke when I lifted up my great niece and the hell I went through, you call it medical profession. I’m sorry, I’m really blowing my stuff.

10 Bonnie Burstow:

It’s ok.

Rosalyn Durdy:

I’m afraid I’ve been through more persecution mental and physical you can’t possibly hear in half an hour even, what I went through. My back was broken a second time when I went to Centenary Hospital and for two solid months with a broken back, three doctors knew I had it, and I was sent back to my apartment and was there for two months before I… insisted I get into hospital.

Bonnie Burstow:

Ok, Rosalyn we’re going to have to stop. Thank you very much for your testimony today.

Rosalyn Durdy:

I’m sorry….

Bonnie Burstow:

Don’t apologize, you have absolutely nothing to apologize for. [applause]

I see that some of the people have turned that were earlier on the list, and I’d like to go to them now. The next person to testify is Jennifer Chambers.

Jennifer Chambers: [asks to testify later- agreed]

Bonnie Burstow: The next person to testify will be Randy Pritchard.

11 Randy Pritchard:

Hi. I was introduced to psychiatric drugs in a prison jail cell in Ottawa. I wasn’t sure what they were. They turned out to be Haldol. About 3 hours after taking it, my head started to bend backwards. It felt like my neck was about to snap. No one had suggested at any time what the possible side effects were. Needless to say, being in a jail cell I thought I can probably refuse this and get away with it and _____ (inaudible)

Bonnie Burstow:

We’re having a bit trouble hearing Randy. Maybe, either projecting or it is coming over, but it’s coming over too lightly.

Randy Pritchard:

How’s this?

Bonnie Burstow:

That’s better- thank you very much.

Randy Pritchard:

From there, after a finding of not guilty by reason of insanity on an explosives charge, I ended up in the criminal system and was introduced to, after being explained what my problem was, was that I had this schizophrenia thing, and I had the shrink ….. (inaudible), and he told me that my problem was that my brain just processed too quickly.

Bonnie Burstow:

Randy, we’re now having a problem with the mic cracking. Let’s try a different mic.

12 Randy Pritchard:

Ok, so here we go.

So after having the explanation, the picture of my brain, it was kind of like Alice’s Restaurant, being with the glossys and all that kind of stuff. He explained that I tried to process to much information and that they were going to give me this drug that would slow down that process, so I would become more normal. What they chose to give me was Perphenazine and then when they decided that the Perphenazine, I didn’t experience a lot of physical side effects. It made me incredibly dull mentally, slowed me down significantly physically, a lot of blurred vision, dry mouth, and then they discovered that the delusion they thought I suffered from wasn’t really a delusion after all. It turned out to be a fact. They then changed my diagnosis to Bipolar Affective.

At that point, they kept me on the Perphenazine and they introduced Amitriptyline at that time. Now they had me locked up so they kept going with this stuff and the way they explained to me when I said I didn’t particularly want to take these drugs, was that if you ever hope to see the outside, you will take them. That dragged on for several years. And with the Amitriptyline, they actually sent me into what they call the hypo-manic phase, and had to increase the neuroleptic to counteract the hypo-manic phase that they introduced with the Amitriptyline. It was during, when I finally started getting passes to the outside, I was introduced to a number of some fine people in what was called the anti-psychiatry movement at that point and started… it sort of began my education I guess.

I was introduced to a number of people that had developed something called Tardive Dyskinesia which most of us are familiar with, and it struck me that nobody had been advised that this was a possibility. In fact, it was only after I became involved in the survivor movement that my own shrink decided that he better get informed consent from me. When I saw what was happening, and I was really pissed that someone had put me in a position where I stood between a 25-50% chance of developing Cardive, and noone had let me know that that was possible. I was pissed. At that time, the only Tardive Dyskinesia clinic in this country existed at Queen Street. It was run by a woman by the name of ___ Zari. She was a psychiatrist and when they could no longer that they had created this real neurological disorder in

13 people with their drugs, when they could no longer deny it because the symptoms were so great, they would be sent to her. Now I met with her towards the end of her time there before they deep 6ed all of her research and closed the clinic. What she would do at that point is remove people slowly from all the neuroleptics because it was the only way to see the true depth of the symptom of the neurological disorder that they had created. When she did that, through her research and experimentation, she found that Vitamin C or E, as antioxidants, in 25% of cases, there’s an actual improvement in people with Tardive. In 50% of cases, people at least didn’t get worse. In the final 25%, they got worse, no matter what. So I said to her, “ok, so Queen Street is now prescribing Vitamin C or E with all their neuroleptics right?”. And the answer was “no”. And I asked why that was so. There was just the raised eyebrows and the quizzical “well, we both know why”. This just made me crazy because here we had a solution that was pennies a piece that could- if they were going to keep giving people these poisons, pennies a piece may have prevented future victims – that the issue was one of liability. If you acknowledge by giving out these Vitamins that we have in fact created this disease, we’re liable. Now that’s my surmising in terms of a reason because they put it to me that you don’t know for sure that’s the reason. What other logical reason is there? If…. (inaudible) liability issues….. (inaudibile).

Shortly after that, the Tardive clinic disappeared. There isn’t one in Canada anymore to the best of my knowledge. The research, god only knows where that went, and to this day, we still administer neuroleptics and some of the new SSRIs that have the same effect and we don’t do the simplest thing and dispense the bloody vitamin. In the hopes that we can mitigate and hope to minimize some of the damages being done on a regular basis. The odds are so stacked against people. I see Dr. Lichtman up there who wrote a report, a wonderful report on housing and his final suggestion was delink this notion of services from someone’s housing. They should have nothing to do with each other, and thank you for that. What we’ve seen in the last decade is the further hole of the new evil, axis of evil, which is the Center for Addiction and Mental Health, the Canadian Mental Health Association, and the Ontario Federation of Addiction and Mental Health Programs – rather than follow that brilliant advice, they’ve moved in the exact opposite direction. We now see today that housing- if you’re coming out of the bin, if you’re lucky enough to get something that isn’t a complete shit hole, then there will be all these strings attached, and the first thing is medication compliance.

14 We’ve moved in the absolute opposite direction of where we were headed a decade ago. And quite frankly, I don’t know what the answer is, but it would seem to me that if that research, and I have no idea how to get our hands on it, still exists today, that points out that this was a way to mitigate what’s happening to people, and that it wasn’t done, I would suggest that someone gets it together to sue these mothers’ asses off before this is over.

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