The Consumer/Survivor/Ex-patient Oral History Project
Four Willard Psychiatric Center Stories
††††††††††† From 1999-2003, the Consumer/Survivor/Ex-patient (C/S/X) Oral History Project, under the direction of Steven Periard, interviewed more than 200 current and former psychiatric patients in New York State.† The project recorded and transcribed the stories of people who have experienced the mental health system first-hand, and deposited these materials with the New York State Archives, where they can be used by scholars and researchers. The history of psychiatry and the mental health field has largely been written from the perspectives of government, institutions, and mental health professionals, and the projectís goal was to bring some balance to the historical record.†
††††††††††† The Project was funded by the New York State Office of Mental Health from December 1999- September 2003.† In November 2003, the New York State Board of Regents and the New York State Archives presented Steven Periard and Darby Penney with the Debra A. Barnhardt Award for Excellence in Documenting New Yorkís History for their work with the C/S/X Oral History Project.†
††††††††††† The people whose oral histories were recorded by the project included four people who had been inpatients at Willard Psychiatric Center before its closure in 1995.† Excerpts from their interviews are included in this binder.† According to their wishes, two of these individuals are identified by pseudonyms, and two by their first names only.† The interviews were conducted by Jeanne Dumont, Ph.D., between August 2000 and July 2001, and were edited and excerpted by Darby Penney.
Excerpts from Jessicaís Interview
Location:††††††††††††††††††††† Jessicaís Apartment
Date:††††††††††††††††††††††††††† July 31, 2001††††††††††††††††††††††††††††††††††††††††††††††††††††††††††††††††††††††††††
Interviewer:††††††††††††††††† Jeanne Dumont
Born at Willard; Her Motherís Reactions to Willard
Q.††††††† Iíd like to begin by asking where and when you were born.
A.††††††† I was born on December 15th, 1946 at Willard State Hospital in Elliott Hall.
Q.††††††† You were born right at Willard?
A.††††††† Right.† I was told later that they didnít allow that to happen very often, but my mother was in quite a state so....† I have to say I felt quite a bit a stigma when I was a teenager regarding where I was born.† All the kids made jokes about sending people to Willard and I just cringed.† I assumed they didnít know, but who knows, it was a small town.† My mother believed she was giving birth to Jesus Christ when she gave birth to me and she often told me about that.† When I was in the hospital once she showed me the room where I was born.
Q.††††††† Were you there for a while?
A.††††††† I donít believe so.† My grandmother came up from Pennsylvania and took care of me at home while my mother was still at Willard.† I was separated from my mother for about six months right after I was born.†
Q.††††††† When you were young, did you go to visit her at Willard?
A.††††††† Yeah, a few times that I recall. I remember the first time I visited Willard.† It was a stormy day and when we got there I got kind of scared by the big ancient buildings...† I must have been around seven or eight years old.† And after that I always had a scary† feeling about Willard from the times my mother was there, because she hated it so much.† She just fought going there.
Q,††††††† Could you talk a little bit more about that?† Did your mom say what it was about Willard, why she hated it so?
A.††††††† The main thing she hated Ė and was scared of Ė was the shock treatments.† She had many of them.† She often talked about how awful they were and how terrible she felt after she had them. They also did something back then that they called ďcold packs,Ē where they wrapped her up in wet sheets and set her in a tub with ice.† Oh, dear, she hated that, too.† So, I would say it was mainly the treatments she got there that she hated. Another treatment they gave her was insulin shock treatment.† From what she described, they gave her insulin to the point where she went into a coma and that was very unpleasant, of course.† She became diabetic when she was older and I often wondered if that had something to do with it. She described spending all day sitting on benches in the day room, and it just all sounded pretty awful to me.
Q.††††††† That was in the forties?
A.††††††† Forties and fifties, yeah.
Q.††††††† While this was going on, how did it affect your life?
A.††††††† As I got olderó around twelve or thirteenó I was very concerned that no one know that my mother had been in Willard.† And when I was in seventh grade a teacher asked me if my mother was still in the hospital. Sheíd been out for a few years, and I really resented that teacher asking me about my mother. †I donít have much of a memory about her being away, but I remember being at home and just aching from missing her.
Q.††††††† You said that you felt some fear about Willardó were you also afraid that what was going on for your mother was going to happen to you when you were older?
A.††††††† I definitely felt vulnerable. When I was around eight years old, my mother was going through an episode where my father was threatening to take her to Willard.† She said to him, ďYouíre afraid sheíll be like me when she grows up, arenít you?† And youíre afraid sheíll go through the same things.Ē So that was when it occurred to me that this could happen to me, too.† I had this dread of Willard and, well Ė† I guess part of that was dreading that I might go there, too.
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First Hospitalization at Willard
Q.††††††† In 1975, we come to the period when you had a series of hospitalizations at Willard?
A.††††††† Yes, but first I was in a hospital called Clifton Springs.† Tom and I were planning to get married, and my father informed me that I couldnít expect any help from Mom, because he felt the stress of planning a wedding would be too much for her. So, I was going about trying to plan the wedding, and, well, something about that stressed me out to the point that I had an episode.† I was doing things like taking off my clothes and running outside naked thinking it was the start of the new millennium or the start of the Age of Aquarius.
My father got very alarmed and took me to Clifton Springs and it was there that I had my only experience of being put in restraints.† They put a camisole around my chest and tied me in a chair and then tied the chair to a radiator and at that point I thought to myself, ďWell, they must want me to do the primal scream.Ē† So I screamed and I just wouldnít stop, so they decided I was too sick to stay there.† It was a nice congenial ward and I was disturbing the peace and so I was taken in an ambulance to Willard.†
Itís hard to even remember what my initial reaction was to realizing that I was at Willard.† But actually, I have some pleasant memories about that first hospitalization.† It was during the summer, and I was able to walk around on the grounds, I took long walks.† I was so impressed with the grounds and I often walked down to the dock in front of the Pines Building.† I remember there being beautiful wildflowers along that road down to the lake.
Fond Memories of Older Long-Stay Willard Patients
And another bright spot was the art therapist.† They let you drop into the art therapy building any time, so I spent a lot of time drawing, and the art therapist there was wonderful. She just encouraged me to draw, she encouraged my art work.† And she let us smoke Ė which was a big draw because not all of the different therapists did.†
Most of my memories of that first time at Willard are about other patients, being fascinated about the patients who had been there a long time.† A lot of them had been there since the 30s or 40s.† I was one of the few young people on the ward.† At that time they divided the hospital according to counties, so the permanent patients were grouped together with the more temporary patients. And I got stories from these different people about how they got there.
I remember one woman who seemed perfectly fine to me.† She had come over from Poland, and when she got to the United States she had been raped, and she got upset about it and they took her to a state hospital down in New York City and she just never got out again.† I got the impression that my mother was lucky that she was able to get out of Willard.† Back in the 40s, it seemed like once you were in there, you were there for life. There were a lot of patients who maybe had a little odd behavior, but it really seemed like they could live in the community.† A lot of their families had deserted them or just werenít in contact with them any more.
I really got a special feeling about a lot of the older people that had been there for many years. After I got out that first time, I wrote letters to several of them. For years I wrote Christmas cards to about twenty people I met there.† The art therapist said there was something magical or mystical about Willard and that came from these older patients.† There was something so appealing about them and yet so sad ó they had been there so long and were estranged from their families.
Additional Hospitalizations at Willard - Take-downs, Restraints
Q. †††††† So from what youíve described, your first experience at Willard did not live up to the fears you had as a child or the experiences your mom had?
Q.††††††† But you ended up going back and forth to Willard quite a few times Ė† seven or more times?† When you got out of Willard, were you on medication?
A.††††††† Yeah, I was on a low dose of Ė I think it may have been Stelazine or Navane.† It was about four years before I was hospitalized at Willard again. During that time I was working full time Ė I was a manager of a cleaning office. And† I had married Tom and we were living in Penn Yan.
Then there were about four years, between about í78 and í83, when I was hospitalized about six more times at Willard.† I think that each time I was in there, I got more and more disillusioned and more afraid of the staff.† The first time was pretty innocuous compared to what I had expected, but as I became a repeat patient, the staff tended to get harsher and harsher with me.† It was mainly the attendants, not the psychiatrist or the social workers.† I got into conflicts with the attendants quite often, especially when I first got there.† Each time I was hospitalized, when I was first there, Iíd be quite active. and they kept trying to hold me down. And I remember one time, music came on the radio and I was dancing and they didnít like that, so they grabbed me and wrestled me to the ground and gave me a shot and ...
Q.††††††† Just for dancing?
A.††††††† Yeah. They thought I was out of control. And this scenario of being wrestled to the ground and then given a shot happened nearly every time I was hospitalized.† It just seemed like the attendants tended to be harsh and impatient.† One attendant was wrestling with me and holding me in a chair.† I donít remember what I was doing, but I was doing something she didnít like, so she had this hold on me where she was behind me and holding onto my arm across my stomach and keeping me in the chair.† And she knew that I didnít have children, and she said to me, ďWell, it certainly was a good thing you didnít have children because you would have messed them up.Ē I thought that was out of line ó a personal insult.† It really hurt my feelings, so I decided to report her. And her punishment was to see a film about being nicer to the patients. But I wanted to see her fired for what she had done to me.† There were many incidents where the attendants were crude or harsh or physically rough, and I think thatís the thing I feared the most about Willard in the endónever knowing how safe I was as far as the attendants doing things to me.†
And then there were just the tedium of being there.† Usually there were activities during the day, but not always, and on the weekends there were no activities.† I just didnít know what to do with myself Ė just sitting there and being uncomfortable. And Iím a smoker, too, so, the limiting of cigarettes was uncomfortable to me. And I was a heavy coffee drinker at the time, and I missed being able to get coffee when I felt like it. And having to get up at six-thirty in the morning when I was used to sleeping until noon, and being forced to go to bed at nine oíclock.† And then there was lining up for meals.† You waited in a long line to get the meal and then they rushed you and stood there impatiently waiting for you to eat.† They were anxious to hustle you out there.† And I remember thinking the food was soggy. They kept it on these steam tables and everything was just overly mushy.
I donít think of myself as a person who can easily hate someone, but I have to say I really hated most of those attendants and their harshness.† Some of the people that worked there, it went back for generations: their parents and grandparents and great-grandparents had been attendants there. And they seemed to carry along from generation to generation this harsh attitude toward patients.
Q. †††††† During any of your stays at Willard, did your mom visit you?
A.††††††† Yeah, she did.†
Q.††††††† During the time that you were going in and out of Willard, did your mother have any stays at Willard?
A.††††††† No, it never coincided.† She went through about twenty years where she wasnít hospitalized.† She was on a very heavy dose of Mellaril and she got very inactive and could hardly do much.† She didnít get hospitalized during the time I was there.† It wasnít until about 1985 that she was hospitalized one more time.† The doctor had taken her cold turkey off the Mellaril because she was getting tardive dyskinesia. And thatís the only time she was hospitalized at Willard since I was in college.† I remember asking her at that time how she thought it was compared to when she had been there before, and she said it was worse than it had been in the old days, except that she said she was relieved that she didnít have any of those treatments Ė cold packs or insulin ó any more.†
One time I was in the Medical Building for an injury, and my mother showed me the room where I was born.† She pointed out which room it was, and I think she even seemed a little nostalgic about it.† She told me once that she felt guilty about what was happening to me, as if it was her fault somehow.† I told her that I didnít blame her at all.† I tried to assure her that it was nothing she had done that had led to me have these episodes.† But I do wonder how it was for her going back there as a visitor.† I never really asked her much about it.
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Recovery - Staying Out of the Hospital
Q.††††††† So youíve managed to stay out of the hospital now for quite a while. What kinds of things are helping you to do that?
A.††††††† I deliberately keep my stress level low, to the point where I avoid doing certain things if I think theyíll be too stressful.† I guess I attribute a lot of it to the meds and how I manage them.† I have periods where I feel like I could be on the verge of having an episode and being hospitalized.† I increase the meds and lay low and so far, knock on wood, itís worked. And I really think another factor is my husband.† If I get a little strange, he doesnít jump the gun and take me to the hospital.† So I guess itís been a combination of things.
Q.††††††† You said that youíve been in support groups and some peer groups.† Have they been helpful?
A.††††††† Yes, thatís helped meó I have a support group of friends, and groups like the Mental Patients Alliance and the Mental Health Association and the crisis hotline...those all helped.
Q.††††††† Is there anything else that you would want researchers or historians to know about your experience with Willard or your motherís experience?
A.††††††† Well, it just doesnít seem necessary, the rough handling of people in places like Willard.† Thereís something inherent about having the kind of power that staff have over the patients that just leads to abuse.† Maybe somebody could look into the dynamics of that power and figure out why this happens, and hopefully prevent it in the future.
What was done to my mother, all of it was done against her will and it was done in the name of being ďgoodĒ for her. And looking back on it, the treatments were horrible. I think that even more than the treatments that my mother had, and more than the physical pain and discomfort, itís just scary to have a bunch of people have such power over you.
Excerpts from Nancyís Interview
Interviewee:††††††††††††††††† Nancy (Pseudonym)
Location:††††††††††††††††††††† Nancyís apartment
Date:††††††††††††††††††††††††††† August 25, 2000
Interviewer:††††††††††††††††† Jeanne Dumont
Q.††††††† Iíd like to begin by asking you, Nancy, where and when you were born?
A.††††††† I was born in Waterloo, Iowa, February 21st, 1941.
Q.††††††† Could you talk a little bit about your family?
A.††††††† My father was diagnosed with schizophrenia when he was in World War II and I was separated from him at the age of two. When I was nine, I saw him in the hospital where he had been beaten up by the attendants and he had all kinds of tubes sticking out of him, you know.† I was really scared.† I guess they called me up there because they thought he was going to die, but he survived that.
Q.††††††† Is there anything else that was memorable about your childhood in Waterloo? What was your experience in elementary school?
A.††††††† When I was two years old, my cousin told me not to go down to the north end of town because the niggers lived there and they carried knives.† So my mother took me to meet the janitor where she had gone to high school and he happened to be a black man. And he sat me on his lap and my mother instructed me that my cousin was full of it, that†† black people were honorable and respected members of the community.† Thatís my most memorable childhood memory.†
I was a very good student and I liked to go to school.† I did very well, but I didnít socialize much.† I was the teacherís pet, I belonged to many organizations and I starred in a couple of school plays, but I was not popular. †I scored 99.9 percent in the intelligence test statewide and I did very well in all my subjects except music.† I canít sing.
Q.††††††† You and many people. You mentioned earlier that at one point you moved to Iowa City?
First Diagnosis and Treatment
A.††††††† I went to the University of Iowa and graduated Phi Beta Kappa.† I was in a three year program to obtain a PhD.† My professor was trying to get me to study in France, but I had a divorce at that time.† I moved to New York City and met someone else and started running a daycare in New York City with my second husband.† And I dropped out of the PhD program.
Q.††††††† When did you first receive mental health treatment or a diagnosis?
A.††††††† When I was younger. From the age of sixteen, I started painting.† I noticed I would get extremely elated while making a painting.† And then when the painting was finished, I would feel dejected, that what I had done was worthless, that I wasnít any good as a painter. But in hindsight I can see that it was the seeds of bipolar disorder appearing at that time, although very mild.† I had several different diagnosis over the years, but what they diagnosed me now is as schizo-affective and when I have an episode I have delusions.† I experience periods of being high and periods of being low.
Hospitalization, Medication and Rape in the Hospital
I wasnít hospitalized until 1972 after I moved to New York City and I had broken up with my second husband.† I was hospitalized in Bellevue and I was given Haldol upon admission, a drug which Iíve since discovered makes me hear voices that I never hear unless Iím on that drug.† And also I discovered that drug makes me have blackouts.† And that was the first drug that they gave to me.
I remember being in a group at the hospital and the woman said to me ďYouíve been here before.† Youíve been here in this group many times before.Ē† I had no memory of it.† And she said, ďYou told us that you had been raped over a hundred times,Ē and† I had no memory of saying that, although I knew that was true.
Q.††††††† So, preceding your first hospitalization, you had been sexually abused?
A.††††††† No ...all this stuff happened so many years ago that Iím getting the hospitalizations confused.† That last memory was from a later hospitalization.† Iíd never been raped until the first time I was admitted.† I was gang raped on a ping pong table where there were no attendants or anyone supervising the patients.
Q.††††††† This was at Bellevue?
A.††††††† This was at Bellevue in 1972.† And after that happened to me, I thought, ďThis happened to me in a hospital. What happens to you in a hospital is for your own good.† This is suppose to happen to you.Ē And after that I had no ability to say no to anyone who might want to take advantage of me.† But itís understandable why my memory is like that, juggled up in my mind, because the abuse was very traumatic.† And my personality was totally destroyed after that first hospitalization and the gang rape.
Q.††††††† Did anyone at the hospital know that this had happened?
A.††††††† They knew that it had happened, but they did not give me any therapy or counseling about it.† Itís only been in recent years that I tried to seek out counseling.† I suffered from that for many years .† In those days they didnít let you wear your own clothing.† You didnít get to wear panties and they put you in a robe that was wide open in the back and the men could see everything as you walked the hall.† They put a pair of menís shorts on me underneath that hospital gown and they transferred me to a different ward and nothing was ever said.†
And finally, when I moved to Ithaca, I was in a mental hospital and I went into the laundry room and a patient came in and he started to touch me. And I yelled at him, ďDonít touch me.† Iíll report you.Ē† And he pulled back his hand and he was going to hit me and then he thought better of it and put his hand down and went outside the laundry room. And from that time,† Iíve been able to protect myself as much as any woman reasonably can against unwanted advances.† So, that was a victory for me, but that took twenty years.
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ďHellishĒ Reaction to Medication; Miscarriage
Q.††††††† You listed a number of different places where you were hospitalized; are there any memorable experiences about these other places?
A.††††††† Well, I didnít mention Roosevelt Hospital.
Q.††††††† When was that?
A.††††††† That was in New York about 1981. I was pregnant and they gave me Haldol, despite my objections, which I said made me hear very hellish voices and Iíd have horrible hallucinations.† I had the worst experience of hell on Haldol, and I said I refused to take it.† I thought I had the right to refuse. And they said to me, ďIf you refuse to take this, weíre going to send you to Manhattan State.Ē† I said, ďOkay, Iíll go to Manhattan State,Ē and then they said, ďWeíre giving you this drug anyway no matter what you say.Ē And they injected me with it and I heard those hellish voices saying all kinds of curse words, and they were so loud I couldnít hear my own thoughts.† I was in that hospital and on that drug and I started doing calisthenics in my bed and I did that all night long and the attendant was sitting in there right with me and she did not stop me.† And the next day I had a miscarriage and Iím sure I had the miscarriage because I was doing all those somersaults in my bed for eight hours straight.† After I had the miscarriage, they took me off the Haldol and it was such a relief.† I donít know what they put me on.† I donít remember, but as soon as they took me off the Haldol, those horrible, horrible, horrible voices went away.
Q..†††††† And you had tried to tell them not to give it to you.
A. †††††† Right, and they threatened me.† They forced me to take it.
Q.††††††† And even when you said, ďOkay, I will go to Manhattan,Ē that wasnít good enough?
A.††††††† No, they lied.
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First Hospitalization at Willard; Medication Left Her ďFeeling Like A ZombieĒ
Q.††††††† When you were you hospitalized at Willard?
A.††††††† I moved to Ithaca in about 1984 and† I think I was hospitalized at Willard in 1985 or 1986.† When I went to Willard, I refused medication and they honored that request.† But, consequently, I did not come out of my altered state of craziness until finally they got a court order to say that I had to take medication and I got a lawyer to fight that court order. But in the meantime the doctors made a deal with me that if I would agree to take the medication, they would release me in a certain period of time.† So, I went along with that agreement and I took the medication and I did respond very favorably to it in the sense that my thinking was not disordered.† But it left me feeling again like a zombie, with a very unpleasant physical sensation in my body and I lost my ability to really speak my mind or do anything creative.† So, when I got out of the hospital, I went back to Thorazine because that seemed to be the one drug that worked the best for me, especially when I adjusted the dosage myself according to what I need without waiting to call the doctor and find out if it was okay to raise or lower it.† For the most part, my doctors worked with me and let me do that.
Q.††††††† Was it your experience that adjusting the Thorazine helped to keep you out of the hospital?
A.††††††† Yes, because if I needed more, I needed to take it right away to avoid hospitalization.† If I waited for however long it would have taken for the doctor to answer my phone call, it would have been too late.† So it was very important to me to double or triple it immediately if I saw that I was getting very manic-y, if I wasnít sleeping well.† So I need to be able to adjust my medication, because I go really high or really low.† I donít want to be flying at the moon and I donít want to be practically catatonic, either.
Q.††††††† You were saying that thereís some† good things that Thorazine did for you, but that it also made you feel like a zombie. Was there anything that helped during those times?
A.††††††† I lived like a zombie for many years because I thought the doctorís word was sacred and you had to take the medicine exactly like they prescribed it.† I didnít realize that in the hospital I would need an extremely high dose to come around and that later, on the outside, I wouldnít need as much.† I would be continuing to take that high dose and be literally a vegetable, just sitting in my chair or lying in bed waiting to die.† Thatís what I did for many years.† I sat there thinking and waiting to die.† Finally, at one point I started lowering the meds myself and I found that was the only thing that worked.
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Violence at Manhattan State Hospital; Restraint at Cayuga Medical Center
Q.††††††† I would like to back-step a little bit to some of your other hospital stays and ask you whether there was anything in particular that was unhelpful or helpful about the environment, the staff, the treatments?
A.††††††† Manhattan State was very hard because there was a lot of violence among the patients there. And the people who were perpetrating the violence were not put in solitary confinement, but the victims of the violence were put into solitary confinement. And I felt that the staff was so afraid of the violent patients that they didnít want to step on their toes in any way, and I was very afraid.† That was a very bad hospitalization for me and I was there for six weeks in 1982.
In Cayuga Medical Center, I remember being put into solitary confinement for pulling fire alarm and I think that was justified, you know.† Especially since I did it three times and other times I was put in straight jackets.† But they never had that cruel thing in New York City that they have up here, where they tie you down to a bed and you canít move and because you canít move, your muscles start aching and hurting all over and you go through extreme physical torture because you can not move at all.† I would really rather be put in a room where I could at least sit up or stand up or lay down then be strapped flat on my back to a bed.† That happened to me at Cayuga Medical and that was such a horrible experience.
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On Being Treated with Disrespect
A.††††††† Iíll give you a more recent example, from last summer.
Q.††††††† That was 1999?
A.††††††† Yes. When they saw I wasnít making any improvement after a month at the short term hospital Cayuga Medical, they sent me to the more permanent facility, Binghamton Psych.† They didnít really give me time to organize my affairs to be moving away from my friends and my home, or to notify my family about where I would be. And this was very upsetting to me, that they just decided I would go and I would go when it was convenient for them.† They didnít work with me.† Even though I was not in my right mind, I was in my right mind enough to know that I wanted to take care of certain things.†† I was so upset that I didnít have a day or two to get things in order.† Thatís so detrimental to your mental health to move you around like youíre a piece of baggage.
Thatís an area that really needs to be improved upon,† the sensitivity of social workers or even the psychiatrists. No matter how out of it you may be, youíre still a human being.† You still have feelings and emotions and needs.† And to treat you as if you donít matter, thatís very detrimental to being healed emotionally.† And even though you might be discharged, a series of those kinds of experiences, of being treated like an inanimate object, scars you to the point that you canít hold your head up when you walk down the street.† So this [oral history] project is helpful because it gives people like myself the chance to say their side of things and how they feel about how theyíve been treated.
††††††††††††††††††††††††††††††††††††††††††††††††††††††††††††††††††††††† *††† *††† *††† *
Fatherís Experiences with Psychiatry
Q.††††††† I didnít ask you anything about your dad having had some problems in this area and receiving treatment.† Is there anything that you might want to comment on in terms of your fathersí experiences?
A.††††††† My father had a lobotomy and over a hundred shock treatments without any anesthesia.† He was nearly killed by being brutalized and beaten up by the attendants and thatís how I related to hospitals.† I was afraid that I would be given a lobotomy or shock treatments. It was a horrible psychological terror to live through.
Q.††††††† Did you find that staff at the hospitals or staff where you received outpatient treatment were sensitive about that? Were they understanding about how your family history could contribute to your own fears about treatment?
A.††††††† Well, no one every spoke to me about my family when I was hospitalized or even in outpatient.
Never Asked About Rape and Trauma
Q.††††††† And did you find that people in the hospital asked whether you had some trauma in your life, like your first hospitalization, when you were gang raped?
A.††††††† No, that never happened.
Q.††††††† You were never asked about trauma?.
A.††††††† No one ever said to me, ďDid anything happen in previous hospitalizations that might make you fearful?Ē† Nobody ever even alluded to it. You donít get any substantial therapy in a mental hospital. You only see your psychiatrist for five or ten minutes.† All heís interested in is how youíre doing that day.
Q.††††††† Iím wondering whether thereís anything else that you would want a researcher or historian to know about your experience in the mental health system?
The Need for Autonomy
A.††††††† My own personal experience has been that the more knowledge and more control I have over my own life, over what medicines I take, or what dosages I take, or what treatment I have....the more control I have in my own hands, the more I thrive as a human being, the more I succeed at finding a way that works for me and I can maintain my self-respect and autonomy.
Excerpts from Alís Interview
Interviewee:††††††††††††††††† Al (Pseudonym)
Location:††††††††††††††††††††† Alís Apartment††††††††††††††††††††††††
Date:††††††††††††††††††††††††††† September 6, 2000
Interviewer:††††††††††††††††† Jeanne Dumont
Q.††††††† Al, Iíd like to begin by asking you where and when you were born.
A.††††††† I was born in Long Island Jewish Hospital in Queens in 1955.† I was raised on Jamaica Avenue in Queens.† Then my parents bought a house on North Conduit and it was a nice big nice house ówe moved in there when I was about five, I guess.† And things were pretty nice.† We had three big cherry trees in the backyard and a pear tree. We used to climb the trees and eat the cherries and stuff. We had lots of cats.† It was a wonderful childhood and Iím forever grateful to my parents.† Even after that, when my problems began, they still stuck with me. They used to come to Willard every day when I was locked up.
Q.††††††† How was school for you?
A.††††††† Well I was pretty much oblivious. I got ďBísĒin elementary school. I didnít do so well in junior high school.† I was kind of not paying attention I guess.† My mind was kind of blank.† I spent a lot of time playing stick ball and football. The Belt Parkway ran past our house and Conduit Avenue ran along the front of a big grass field, so we used to play football a lot.† And I was so happy when we moved here because I could play organized football.† I played junior varsity.
First Hospitalization; Negative Reaction to Haldol
Q.††††††† Did you finish high school?
A.††††††† No, actually I didnít.† Thatís when my problems began.† I dropped out of high school a couple of weeks before finals.† But in 1978 I got my GED.
Q.††††††† Thatís good.† So, it was around that time that you dropped out of school that you were having some problems.† So, you were about, what, seventeen, eighteenÖ
A.††††††† Seventeen, eighteen, yeah.
Q.††††††† Could you talk about what was going on?
A.††††††† For one thing, I smoked a lot of marijuana. And when I stopped, I had a serious depression and I had severe paranoia.
Q.††††††† Did you feel you were paranoid or was that a label that was put on you?
A.††††††† I felt some paranoia.† On my first trip to the hospital, which was Wilson Memorial in Johnson City, when I was 18, they had a hard time getting me into the door because I thought they were going to cut off my leg or my arm or something. There was just a lot of delusional things going on.† I had a lot of fear, you know.†† A lot of fear.
Q.††††††† So† how did you end up there?
A.††††††† Well, I couldnít sleep, or I wouldnít sleep, one or the other.† Iím not sure.† It was probably a combination of both.† You know, after you stay up for three or four days, you become delusional.† You hallucinate.† And Iím locked in my little trailer, walking up and down all night for three days, you know.† My mother is trying to keep me in.† Letting me know that Iím okay and she wonít let anybody hurt me and walking up and down her trailer.
And then Dr. Hamlish gave me Stelazine and I went into the bathroom and took the whole bottle.† Then they ran me down to the emergency room and they gave me ipecac to make me throw it up.† And thatís how it kind of started.† He asked me if I wanted to go to a hospital and I said, ďYeah.Ē I didnít have a clue.† I should have said no.†
Q.††††††† So when you took that whole bottle, do you remember what was going through your mind?
A.††††††† It wasnít a suicide attempt.† I just took the whole bottle without thinking about it. It wasnít a suicide attempt.† I had one of those later, but at that time, it wasnít.
Q.††††††† What do you remember about that hospitalization?
A.††††††† A lot of† sitting around and watching TV and shooting pool, you know.† Waiting for my doctor to come back from vacation.
Q.††††††† What medication did they put you on?
A.††††††† They gave me a big old mouthful of Haldol and I went (making a face). You got no muscle control. I couldnít talk.† My tongue was thick.† In retrospect, I assume it was kind of a power play. You know, ĎYou be good or weíll....í† I remember seeing my dinner and not being able to eat because my tongue was so thick.
Q.††††††† And you got out of there after six weeks?
A.††††††† Yeah. Then I came out and I got a job and I tried to stay out.† But I started feeling paranoid, delusions, no sleepÖmostly no sleep.† I was awake for a week one time and it was very painful and it was hard for my parents, too.†
††††††††††† *††† *††† *†† *
First Hospitalization at Willard
Q. †††††† Why donít you talk about your first experience at Willard?
A.††††††† I think my first time, it must have been in the late seventies. A lot of those guys [staff], they know your problems and they try to drive you crazier.† They tell you jokes and give you the treatment, to where I was trying to jump out of windows.† And being chased around in there and nowhere to go.† And having loud and intrusive thoughts that I thought other people could hear. So it was very uncomfortable.
Q.††††††† Did anything they did at Willard give you any relief?
A.††††††† No, no.† They had me on Elavil one time and it must have been one of my first bursts of really feeling reality, and it was very frightening and the doctor took me off it.† But I was mostly taking Prolixin, and I canít tell if it does anything for me.
Q.††††††† So you ended up back in Willard over a period of years. Are there some stays that stand out in your mind?
A.††††††† Well, one time in Willard,† I tried to jump out of a window. And they gave me 70 milligrams of Thorazine, which made me dizzy.† They put me on one-to-one and I got up in the middle of the night and had to go to the bathroom.† I could hardly stand up.† When I got done, the guy threw me into the seclusion room. He was angry and threw me in there. But that was unusual.† I was usually treated very well.
††††††††††† *††† *††† *††† *†††
Outpatient Treatment - The Downside of† Medications
Q.††††††† How about when you were out of the hospital?† Have you received any outpatient treatment? Do you have any thoughts on that?
A.††††††† Yeah, Iíve been going to an outpatient clinic ever since they built the building.† Iíve been going to the outpatient clinic and getting drugs of some kind.† I had to see a psychiatrist every three months and talk to a nurse every month.† And theyíd ask me the same five questions Ė the little cookie cutter routine, you know.† And when I started asking them kind of tough questions, they veered away from me.
Q.††††††† Like what kind of tough questions?
A.††††††† The first thing I had to know was what the drugs did and Iíd always ask them, ďSo, what does this drug do?Ē† ďItís anti-psychotic.Ē† But Iím not psychotic, you know.†
Q.††††††† And so, what was their response to you?
A.††††††† They never told me what it did, you know.† ďWell, it inhibits the racing thoughts and voices,Ē and it doesnít, according to my experiments.† I was off of them totally for two years. There were voices and I couldnít sleep and stuff like that, but I survived, you know.† And I didnít go into the hospital for a while.
Q.††††††† When you stay on the meds, do you hear voices less?
A.††††††† Seem to, yeah.† And I usually can get a job and work, you know.† Iíve had times where I worked three jobs one time.
Q.††††††† Whatís the down side of medication as you see it?
A.††††††† Well, I think itís bad for me.† It burns brain cells, you know.† And there are side effects from the meds, so you have to take Cogentin for the side effects, and that has side effects. My advice is, if you find yourself in the situation where youíre paranoid, donít take medication.† Try to find some other way, you know.
Q.††††††† Well, what other ways are you talking about?
Court-Ordered Outpatient Medication
A.††††††† Find the right people who you can hang out with until it passes. I donít wish those pills on anybody.† And now theyíre giving me Haldol IM (intramuscularly) because they court-ordered me, because I told them I wasnít taking the meds any more.
Q.††††††† So you decided not to fight the court orderÖ.
A.††††††† No, I didnít have a leg to stand on. I said, ďSure, just donít keep me in front of this judge too long,Ē because I hate judges.† The guy never looked at me once, you know. It took like forty minutes.
Q. †††††† So youíve been ordered to take medication?
A.††††††† I get 100 milligrams of Haldol IM every two weeks.† I just had a shot Tuesday.† Big old needle, too, you know.† The meds put weight on you.† I guess it slows down your metabolism, which is supposed to help with the racing thoughts and stuff, but I found it doesnít.† When I was on Prolixin, I felt like I was packed in cotton.
††††††††††††††††††††††† *†† *†† *†† *
On Being Treated as Source of Payment
Q.††††††† Have doctors or other staff in the mental health system helped you to find some other ways to attain the quiet mind that youíre looking for?
A.††††††† No, they just gave me pills and asked me the same five questions every couple of months.† I just came to realize that they donít really care about me, you know.† Iím just Ė you know, the $75 per hour.
Excerpts from Barbaraís Interview
Location:††††††††† Community Room of Barbaraís Apartment Building
Date:††††††††††††††† November 10, 2000
Interviewer:††††† Jeanne Dumont
On Growing up in an Abusive Household
Q.††††††† Barbara, where and when were you born?
A.††††††† I was born at Corning, New York and I lived in an abusive home.† My father worked at the Corning Glass factory and my mother was a housewife.
Q.††††††† You brought up immediately that your home was an abusive one.† Can you talk a little bit about that?
A.††††††† The reason why I talk about it as an abusive home is because my father was an alcoholic and he used to take his feelings and stuff out on us kids while we were growing up and he would rather drink than take care of his family.† And it affected me when I was going to school.† I was afraid to come home every day from school, because of him drinking and beating us kids up.
Q.††††††† So this went on all through your Ė
A.††††††† My whole life Ė nineteen years of it and that is a long time.† There was no kind of help at the time to take care of people that used to drink Ė no treatment programs or anything to help him solve his problems instead of taking it out on us kids at that time.
Q.††††††† Your dad didnít ever get treatment or anything Ė
A.††††††† No, he did not.† He did not get no kind of help.† My mother didnít get no kind of help because they didnít have the programs at that time.
Q.††††††† You mention that it was difficult in school for you.
A.††††††† It was. It affected me emotionally at home.† I couldnít concentrate doing my homework.† It affected me in school.† I was always in the nurseís office for being upset, crying.
Q.††††††† Did you get any help at school?
A.††††††† No, I did not get any kind of help.† No kind of help or anything.† They just let it go.† Acted like it never happened.
Q.††††††† You remained at home for nineteen years?
A.††††††† Yes, I did.† And I was raped when I was a young girl by my father, he was drunk. He just wanted to have somebody to love him and care for him while he was drunk but he didnít know what he was doing.
Q.††††††† That happened to you in your own family?
A.††††††† Yes, it did and my mother stood there and laughed at it and let him keep right on doing it.† She wouldnít stop him or nothing.
Q.††††††† Did you get any help soon after that?
A.††††††† No.† No, I did not.† I did not get help until after I came out of the service. I was in the Marine Corps, and thatís when they discovered that I had problems.
Q.††††††† So, you went into the Marines around Ö.
Q.††††††† And you went into the service, and it was while you were in there that Ė
A.††††††† They discovered that I had these problems.
Q.††††††† How did they discover this?
A.††††††† Because I was very sickly, down, withdrawn, I didnít want to do much.† But being in the service, I had to keep moving.† I couldnít think about it.† I just couldnít think about my past while I was in the service.† I couldnít let it interfere, but it did.
Q.††††††† Youíre in the service and you were withdrawn and, as you said, sickly.† Did someone approach you in the service to say that they were concerned about you?
A.††††††† Yes, yes.† Thatís when I went to the doctors, in the service.† They had a doctor and they got me on the side and told me about him because I was hemorrhaging.† I was losing a lot of blood because I was having problems with my menstrual period.
††††††††††† They put me on standby for five weeks and I had to stay off my feet.† I was mostly on bed rest.† And then they discharged me with an honorable discharge and I came home Ė that was a mistake, coming home, because I had to come back and face them and I didnít really want to do it Ė
Discharged Back to an Abusive Home
Q.††††††† Your parents?
A.††††††† Yeah, my parents.† Then my aunt in Painted Post gave me bus fare to go to Minnesota. And I didnít make it to Minnesota, I landed in a† hospital.† I had to have an operation. That was my twentieth birthday.† My aunt sent me to see my Aunt Marion that lived in Minnesota Ė that was my birthday present that she gave me, but I didnít make it.
Q.††††††† So, you were on your way there on a bus Ė† so, what happened?
A.††††††† I went to Crosby Hospital and I was hemorrhaging badly.† And I was having seizures on top of it. They had medicated me with Dilantin and Phenobarbital and they kept me on bed rest to stop the bleeding before the surgery.
Q.††††††† This was a regular, general hospital?
A.††††††† This was a regular, general hospital.† Then they transferred me to another hospital that was a physical and mental hospital.
Q.††††††† And that was your first psychiatric hospital?
A.††††††† Yes, where they did the surgery Ė the operation.† And they controlled my seizures and they were pumping me with Phenobarbital, Dilantin and then they were giving me vitamins and they gave me iron Ė they gave me a lot of medication.
Q.††††††† Do you know what they gave you as a diagnosis at that time?
A.††††††† Well, the diagnosis at that time was that I was depressed.† I had seizures and they had to get them back under control and they were trying to get me out of the depression.† They got me out of the depression with Mellaril.
After I got better they had to send me back to New York, back to Corning Ė back to my† parents. And then I went back through that cycle again until 1971.† I went to the mental health clinic in Bath, and the doctor referred me to Willard State Hospital because I was depressed,† ready to do suicide because I couldnít live in that home.† My emotions were out of control.
Q.††††††† How did you end up seeing this doctor?
A.††††††† The police.† The police took me up there.
Q.††††††† How did you come in contact with the police?
A.††††††† Because I made a report about what my father was doing and the police wouldnít do nothing.† The only thing they could do was take me out of the home and get some help.
First Hospitalization at Willard; Experience of Restraint and Seclusion
Q.††††††† So, you made a report about your father, but they did nothing about your father and brought you to Willard?† What was it like for you to be at Willard?
A.††††††† I was scared when I first got there.† I was confused because I didnít want to be in the hospital at that time.† But while I was staying at Willard, they did help me get back to being stable with my emotions, my nerves. And I stayed there for Ė letís see Ė I think it was two years.† Yeah, two years I stayed there. I† just wanted to be left alone while I was trying to get well.† It took me a long time to understand that they were there to help me. I didnít mean to do some of the bad things that I used to do. I used to run away.† I used to break windows with my fists from anger and being upset.† Thatís what I used to do.†
Q.††††††† How did staff treat you when you did those things?
A.††††††† Well, they put me in seclusion room and put me in a straight jacket and gave me a hypo until I calmed down and then they would let me out.
Q.††††††† The experience of being put in seclusion and straight jackets, when you think back on that, what do you think about?
A.††††††† I kept thinking ďWhy did I do those things, and why was I in the seclusion room and a straight jacket?Ē† That was after the shock wore off and they kept giving me hypos right and left to keep me calm, because I was so hurt and angry.† And they were trying to stop me from hurting myself.
Q.††††††† Did they try any other ways to stop you from hurting yourself besides medication?
A.††††††† No, that was the only way they did it.† That was the way the treatment was years back.† They wanted to give me shock treatments, but I turned it down because I had rights to turn the shock treatment down because they were trying to get me to forget my past.
††††††††††† *††† *††† *†† *
Q.††††††† Can you talk a little bit more about what your stay at Willard was like?
A.††††††† After I started feeling better, I started working at the cafeteria serving the food. That helped me relieve some of my emotions because I was busy, I wasnít thinking of my past. And then I started working at the workshop. Then they transferred me to working at Elliott Hall and I used to take care of patients on the ward.
Q.††††††† So that was helpful in your getting better?
A.††††††† Yes, it was.
Q.††††††† You felt better about yourself?† You felt like you could do something positive?
A†††††††† Yes.† Until I was discharged and went to a family care home and then I went home on weekends to my parents.† That was a mistake because that brought back the abuse and the memories of what my parents did to me.
Q.††††††† Did you talk with staff or doctors at Willard about what had happened in your family?
A.††††††† Yes.† I had a social worker up at Willard and his name was Dr. Pepper and he helped me through some of the steps of dealing with my past. He guided me to some of the good points of life.† When I was up at Willard, they didnít have a lot of counselors and self-help groups or support groups or anything like that.† Mainly, I had to learn most of this as an individual, by myself and my social worker.† I didnít have much help.
††††††††††† *††† *††† *††† *
Discharge from Willard; Working and Studying
Q.††††††† So, you spent two years in Willard in the early seventies and then when you got out of Willard, where were you living?
A.††††††† I lived in Ithaca because I didnít want to go back home. I lived in a family care home in Ithaca. Then I lived in Tompkins County Nursing Home and I worked at Chillings Industry and I went to school at night at BOCES for typing.† I wanted to learn more skills.† And then the Welfare Department made me come back to Corning to get back with my parents.
Q.††††††† They thought you should go back to your parents?† Did they know that your father had not received any treatment or anything?
A.††††††† I told them about it, but they said go back and give it a try, and I went back.† And that was a mistake because he didnít get help.† He quit for maybe three months and then he would start back in all over again.† Start back up drinking and start beating people.† Fighting and arguing.† And it just got to me.† And then I got married in 1979 because I wanted somebody to love me and care for me and give me comfort. And I never got that with my marriage.† So, I left him in 1984 and moved to Elmira.† After I moved,† I was in the Elmira Psychiatric Center.† I was there for a short time in 1984.
Hospitalization at Elmira Psychiatric Center
Q.††††††† So you moved to Elmira at that time after the separation and Ė
A.††††††† I was getting depressed.† I was becoming suicidal and† I was afraid of hurting myself. I tried to take overdoses of pills because I didnít want to face what my husband did to me and I didnít want to live any more.† I just wanted to give up and thatís when I thought I better go get help in Elmira.
Q.††††††† So, you brought yourself for help?
A.††††††† Yes, I did.† On my own.† I didnít have nobody helping me do it.† I did it all on my own.† I just had the notion to get up and take care of myself, because I couldnít stand being this way.† I wanted to get back to normal.† And then for a short time I was in the hospital. Then I went to a group home in Elmira, Jaywood Manors, and I lived there for four or five years before I moved here.†
Recovery and Hope
And that was 1990 and I have been doing pretty good living here.† I have my own furniture.† Iím proud of having my own place.† Iím very proud of having the things that I never had before.† Right now, Iím doing pretty good.† I feel good about myself....the doctor told me Iím better off doing what Iím doing now, being self-employed by working on canvas and free-hand painting.† I go to a self-help group, Inner Peace, and I go to the social club for an outlet.† And I go for walks and I have my pet bird to keep me comfort.† I have gone through a lot of seminars for mental illness and Iím beginning to understand more about mental illness.† Iím beginning to see things better and understand things that I never knew about mental illness.†
††††††††††† *††† *††† *††† *
Q.††††††† More recently, have staff† talked to you about your past history of being abused?† Do you feel you got some help with that situation?
A.††††††† A little bit, yes I did.† I got the most help here in Elmira when Iíve gone through support groups, because I learned more about how to handle the past better without hurting myself.† It took me almost thirty-five years to understand that itís okay to talk about my past to certain people.† I had to trust people to talk about my past.
Q.††††††† And you feel now that you are able to stay out of the hospital and handle your own problems?
A.††††††† Yes, yes I am.† The medication Iím taking is helpful, it keeps me out of the hospital and helps me to handle my problems.† I† keep going to support groups and I get good support.† I donít get it from my family at all.† They donít bother with me.† They donít come and see me or anything.† Which is good because Iím better without going through the past.† I feel more comfortable with what Iím doing right now.† And when I get angry and mad and upset, I go for a walk or listen to relaxation tapes that I got from the hospital. And I read over some of the materials that the support group gives me and thatís what helps me keep going.† Itís a tool that helps me keep going and talking more about what Iíve been through.† Iím letting my feelings out more and right now I feel comfortable doing it.