Interview with Kerry Kennedy

In Hungary, there are social care homes for the mentally ill, similar to the old American state mental hospitals. Most of these 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.

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 [therapy that helps people perform everyday tasks, such as getting dressed or cooking], 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 factfinding trip to an institution, for example, we noticed a relatively young man was severely intellectually challenged in a 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.

I must tell you that, on average, the human rights violations in the institutions for people who are intellectually challenged 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 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 over drugged, 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.”

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 and 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. 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. After three weeks, I recognized that I had passed my deepest crisis.

That was the beginning of a new life. I had the self-confidence that, with the proper support from people who are close to me, I could survive. I felt that I did have some control over my illness.

[Eventually,] 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, [I] became more and more involved. 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.

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. 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 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.

Originally appeared in Speak Truth To Power: Human Rights Defenders Who Are Changing Our World by Kerry Kennedy.