"There was a relatively young man with severe mental retardation in the cage. We asked the staff how much time he spent in the cage. The answer was all day, except for half an hour when a staffer works with him. And I asked them, why do you keep this person in the cage?'"
Throughout the world, people with mental disabilities, elders with dementia, and people of all ages who suffer from psychological illnesses, from depression to schizophrenia, are regularly abandoned to a life of discrimination. They are often locked away in insane asylums where degrading conditions include pervasive inactivity, filthy spaces, and the use of physical restraints, including confinement to cages. Denied adequate privacy, medical and dental care, food, water, clothing, blankets, and heat; rehabilitation and reintegration into society are rarely the goals of their treatment, medications are chronically overused and misused, and there is almost a complete failure to provide informed consent for treatment and experimentation. The chronic shortage of resources includes a serious lack of trained staff, and few avenues of complaint for violations against this most vulnerable and marginalized segment of society. Gabor Gombos knows these conditions all too well. Between 1977 and 1990 he was confined four times to psychiatric wards in Hungarian hospitals. He emerged determined to overhaul psychiatric care, first in his country and then across Europe. To this end, Gombos cofounded the first NGO active in Hungarian mental health issues (EGISZ, the National Family Association of the Mentally Ill) in 1993, and the following year, cofounded Voice of Soul, Hungary’s first NGO for ex-users and survivors of mental health facilities, where he still serves as chair of the board. Gombos is also a member of the board of directors of the Users, Ex-users, and Survivors of the Psychiatry Movement in Europe, and the European Network on Constraint and Collaboration in Psychiatry, and is on the editorial board of Out Loud. He is cofounder of the Hungarian Mental Health Interest Forum. On December 3, 2009, Mr. Gabor was awarded the Knight’s Cross of the Order of Merit of the Republic of Hungary in recognition of his work in the field of disabilities.
Gabor Gombos has played an important part in the Speak Truth to Power project by sharing his personal testimony about how one voice can make a difference at Speak Truth to Power events in 2004 in Mantua, Italy and at the April 2009 launch of Speak Truth to Power in Romania, where he visited a hospital in Bucharest in conjunction with the Romanian version of the Speak Truth To Power educational project.
In September 2010 Gábor Gombos was elected to the UN Disability Rights Committee.
In Hungary, there are fifty-three social care homes for the mentally ill, similar to the old American state mental hospitals (as opposed to psychiatric hospitals and psychiatric wards, basically for acute patients, where patients spend at most two or three months). Most of these fifty-three institutions were started in 1953 by the Communist Party, which maintained that mental illness was a characteristic feature of capitalism, and would disappear under Communism. And after a few years they discovered there were still mentally disabled people in society. How to solve the problem? They set up these institutions very far from bigger cities and towns, to make mentally disabled people invisible for the majority of society. If you don’t see them, they don’t exist.
Depression is a nationwide problem as with everywhere in the civilized world. The Hungarian suicide rate is one of the highest suicide rates in the world. Classic psychiatric disorders (severe depression, manic depression, schizophrenia) are as prevalent everywhere. So we have 100,000 people with schizophrenia, another 100,000 people with severe depression or manic depression. There are a few thousand beds in psychiatric hospitals and wards, and a few thousand more in the homes for the mentally ill. Even the newest post-1994 facilities reflect the attitude of the society, the discrimination, the prejudice, the stigma against people with mental disabilities. The buildings are modern, but the attitudes are old, designed without rooms for occupational therapy, without a common eating facility, and with cages for acute cases.
What is missing is a flexible and reachable network of various social services for people with mental disabilities: a sheltered place to live, support in feeding, shopping, and other needs. But there are no outpatient services like that. With as little as half an hour a day, these people could be not only equal members of society but able to earn their own living. But because these services are completely missing, the only choice for the family or for the local authorities is to condemn people to social care homes for the mentally ill. This is really tragic. The lack of resources is not the main reason for the government’s failure to do anything (a much-heard complaint) because an unreasonable amount is spent for services that are ineffective and (by the way) violate basic human rights. On a fact-finding trip to an institution, for example, we noticed a relatively young man with severe mental retardation in the cage. We asked the staff how much time he spent in the cage. The answer was all day, except for half an hour when a staffer works with him. And I asked them, why do you keep this person in the cage? And the answer was for his own protection.
The average waiting list for admittance to a group home is about three years, and if you consider that the conditions are abhorrent, that they are not rehabilitation institutions but are custodial institutions, it seems surprising that there are people waiting. It doesn’t mean that these people want to be there; it means there is no other choice, or that their guardians are forcing them to be there. The Hungarian guardianship system itself is a severe violation of basic human rights. If someone has a psychiatric diagnosis or one of mental retardation and if someone therefore believes that person is incompetent, then they can initiate guardianship procedures, and some local official makes a decision about a temporary guardianship, lasting sometimes for two or three years. It means all your civil rights are controlled by your guardian, including your property, house, and money. Abuse is common.
Medically you can be forcibly treated or hospitalized against your will only if you have been admitted voluntarily. The guardians circumvent this by proclaiming the patient incompetent and then condemn them for life to "voluntary" care. In the new social care homes for the mentally ill, more than 90 percent of the residents are under guardianship, and this is shameful.
One of the issues we address is occupational therapy. There is very little, and what exists is not very therapeutic. On the other hand, patients do real work for the institution cleaning bathrooms and washing floors—for free. They should be paid the minimum wage for this real custodial work they perform instead of being exploited by the institution. The fact that they perform these services indicates that they can survive perfectly well in society with minimal support.
We walked through one facility for three hours with the psychiatrist, the director, the chief nurse, and others, and not one patient seemed to recognize or initiate conversation with any of the staff, as though they had no relationship. Yet this home is very proud that it has a psychiatrist at all since most of these institutions do not have one. The psychiatrist said he only needs to see patients with acute symptoms and only 5 percent are acute so he’s there only three afternoons a week. My question was, why should the other patients live in social institutions designed for the mentally disabled? Why not in ordinary social care homes for the elderly, for instance? Or shelters for the homeless? I know the answer: because there are no alternative shelters. But how amazing that the chief psychiatrist said they don’t need to see a psychiatrist. It’s an insane asylum, after all...
A few words about institutions for mentally ill and mentally retarded people. I told you that most of the social care homes for the mentally ill are mixed institutions. And you can find people with mental retardation in every one of these places. I must tell you that, on average, the human rights violations in the institutions for the mentally retarded are much more severe. It’s not a question of money and a shortage in financing. It’s a question of attitudes. For example, it’s very often an everyday practice in many of these institutions for the mentally retarded that the staff beats some of the patients.
The last time I was in a mental hospital was in 1991. At that time I was very, very depressed, and I was a voluntary patient. But when I wanted to leave I was not allowed. Since we had no real legislation about this, the doctor simply changed my status in the medical documents to involuntary, because he decided I’d become agitated or confused—I don’t know. The courts had nothing to do with this. The court made several visits to the wards. They interviewed some selected patients, most of whom were overdrugged and some of them had just been electroshocked. After the electroshock, your memory is not really clear. So they said, "Yes, yes, it’s okay."
The main indication for electroshock is severe depression. Twenty years ago, the major indication was schizophrenia. Now they say that it’s contraindicated in schizophrenia. My wife was electroshocked twenty-six times for schizophrenia, only to be told that it was a severe mistake. She is suffering long-term side effects from those electroshocks. I was lucky, because my mother protested against my treatment so I have never been shocked, just treated with drugs.
My contact with psychiatry began when I was three years old. My uncle committed suicide. A few months later, my mother became very depressed and delusional. She was hospitalized many times when I was a child, and when not in the hospital she worked outside the home to care for me and my grandmother. So I was raised mainly by my grandmother, who was also mentally ill. She died when I was ten. Being afraid that I’d be put in an orphanage, my mother married. But my stepfather drank a lot, which did not help my mother’s emotional stability. Her hospitalizations increased and she tried to commit suicide several times. My mother lost her autonomy, her social contacts, her social roles over time and applied for a disability pension. She lost her job, which was devastating for her. So her life was narrowing and narrowing and narrowing. And the only goal which remained for her was for me to grow up successfully. As soon as I became more or less independent, my mother died. Her death was mysterious because she was an outpatient at the mental health hospital where she was an involuntary subject in a double-blind drug experiment.
When I discovered the true cause of her death, I went really crazy, completely psychotic, with threatening hallucinations. So psychotic that I didn’t go to the psychiatrists. I didn’t eat. I didn’t leave my home. I couldn’t. The reason that I am here is that one of my friends unexpectedly visited me, and discovered that I was visibly psychotic. But he was an old friend and didn’t think that the answer to my state was hospitalization. He could understand my situation. I had lost my mother. He knew something about her very doubtful autopsy. So he moved into my apartment for weeks, spent all his time with me, forced me to eat something.
For weeks, I couldn’t understand what he told me. He recognized this and didn’t try to speak to me; he was just together with me. And that was what I really needed. After three weeks, I recognized that I had passed my deepest crisis. Without any help from the psychiatric establishment, with only the very human help from my friend, I had survived this very critical period.
That was the beginning of a new life. I began to question many things that I had believed in before. That resulted in another crisis. But now I had the self-confidence that, with the proper support from people who are close to me, I could survive. Before that, starting at age seventeen, when I felt ill, I had gone to the psychiatric institution more or less voluntarily and there I was treated as an object. I received some injections, some pills, was told to try to relax, that it had nothing to do with my disorder; that "we are trying to help you"; that "you cannot help yourself at all because it’s the biochemistry of your brain." And I believed it. But when I emerged out of my second psychotic experience with my friend’s help, I felt that I did have some control over my illness.
I had always tried in the past to find someone to make my decisions for me. I couldn’t imagine that I would be the one to control my own life. It is not easy if you start when you are over twenty-five, but not impossible. Then I was lucky. I got a grant from the French Ministry of Culture for studies in metaphysics. So I did some research in France, four months in a completely strange environment, a very good opportunity to start a long, long dialogue with myself, to make certain things clear.
And then I understood that physics was not my real profession. It was a kind of medication in my childhood to have a goal, which was not easy at the time in Hungary, one that belonged to the elite professionals in the Communist countries. But when I came back from France, some people contacted me and asked me to help them organize a nongovernmental organization for the families of people with mental disabilities. I joined because of my mother. And after a time, became more and more involved. I met my wife through these activities, and we decided to get married. And this was the moment when I realized that I would be seriously committed to helping people who share my terrible experience of so-called psychosis, and changing the way society reacts to it, and so changing the world.
The transition to teaching was hard. I have never suffered from a learning disability, but I suffered from very similar emotional deprivation, a violation of my emotional privacy. Now I am very involved in this movement, called Users, Ex-users and Survivors of the Psychiatry Movement in Europe. We say we are lucky to have survived a very antihuman mechanism which doesn’t kill the patients biologically, but the end result is very often a socially dead person living in a social care home for the mentally ill. I had a very simple choice: Did I want to take up this role and have a chance to find myself? Or not take up this mission and lose that chance?
For years I believed that it was my mission to do research in physics. There were extremely heavy competitors there, but not supporters. In my private life, my mother was the only person who was a supporter. My real father never supported me; my grandmother maybe wanted to, but what she actually did was something completely different. In the world of human rights advocacy for people with mental disabilities I discovered people who shared my experience, who gave me all their support, all their expertise, all their knowledge. And I tried to return that in kind. Solidarity, you know? This was the first time in my life when I experienced solidarity.
I remember that Edmund Hillary wrote in one of his books that when he was an adolescent he dreamed that as an adult he would be a very courageous person who would climb high mountains and discover undiscovered lands. And when he looked back at his life, he wrote that he never felt he succeeded, because every time he climbed onto a mountain, he was very much afraid. But what he learned is that even if you are afraid, even if you are not courageous, you can do things if they are important for you. In spite of the fear, you feel the presence of a peaceful entity. Even when I experience strong panic—which happens quite often—I do have some kind of spiritual peace. So, emotionally, I can be very threatened, very frightened, and even my soul can be confused, but still I feel that peace. It’s not an abstract entity. But if I do not feel it, then it is a sign that I might do the wrong things. I remind myself that many of the mistakes in mental health care come from a helping attitude. But they want to help you without asking you, without understanding you, without involving you, "in your best interest."
I can understand those who are on the other side of this mental health care. I don’t suppose that they are less valuable human beings. And by understanding, we can influence each other, at least on a personal level. And I really believe that change, social change, can happen only if it happens in various levels. If decision makers, as human beings, embrace human relationships with people with mental disabilities, and with other disabilities, this will advance change and understanding like nothing else.
Speak Truth to Power (Umbrage, 2000)
From Speak Truth To Power: Voices from beyond the Dark performance:
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