Tristanos story1

Tristano Ajmone2 When I am with my peers in the self-help group, I feel I can breathe. I do not know how I would cope with life without them. They are the bridge that unites my past experience in psychiatry with my present life. Their loving company cements the fracture separating my period of forced hospitalization from my present freedom. It makes my wounds heal. I had my first contact with psychiatry when I was a teenager. Because of some personal legal problems I was having at the time, the court decided that I should undergo a psychiatric examination and be monitored by the psychiatric and social services. Later on, at the age of 26, I was arrested on a charge of attempted murder for an impetuous fight that got out of hand. I experienced an immense sense of solitude and abandonment at the time, and my life was a mess. I had recently divorced from my wife, my work was not going well and I was taking a lot of LSD. As soon as I got into prison, I had to undergo another psychiatric examination, consisting of a single, brief meeting with a psychiatrist. We exchanged a few words, and on the basis of this he declared me partly incapable of will and intent, which is the Italian legal term for being partly irresponsible for a crime for reasons of insanity. Because of that, even though I had spontaneously gone to the police and admitted my responsibility as soon as I had realized what I had done, my testimony was dismissed by the court as the words of a lunatic. And so my journey deeper into the realms of psychiatry continued, with a constant hovering between prisons and psychiatric institutions that went on for years. Since regaining my freedom, I have become actively involved in the radical criticism of psychiatry, the struggle for the abolition of psychiatric coercion, and the empowerment of users. It is years now since I have taken any psychiatric drug or been subjected to psychiatric services, but I have always kept in touch with the mental health system. This is because I believe that there are many good mental health professionals who are willing to learn from the failures of the system, and accept users experiences as a contribution to changing it. I have criticized the methods and principles of psychiatry for several years, and am now the president of a non-profit association called OISM, the Italian Observatory on Mental Health. I have conducted many campaigns via the Internet, conferences and publications, and I have always done my best to give visibility to other users and user/survivor organizations, in order to build a network of equals. As a result of all this, I have managed to raise the awareness of the Italian public of the issue of psychiatric coercion, and simultaneously I have made enough noise so as to render it difficult for psychiatrists to ignore the voice of the users. Nowadays I am often invited by local mental health workers to discuss either formally or informally issues regarding mental health policies and how interventions could be adjusted to suit users demands. Some mental health organizations ignore or censor me because of my critical views, but a significant and increasing number of professionals are starting to take my opinions and experiences into consideration, putting pressure on their superiors to involve me and other users in local projects.

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http://www.euro.who.int/mentalhealth/topics/20071113_6 http://www.tristano.oism.info

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The most rewarding aspect of this is when we are invited to meet newcomers in the system (people who are having their first experience of psychiatric hospitalization) in order to involve them in our local network. Helping people in a crisis, who are at risk of long-term hospitalization, has proved very valuable for both them and us. For my own part, the whole experience of being subjected to the psychiatric system has been highly dehumanizing and humiliating. I have lived for years under a punitive regime that could not grant me safety from persecution and fear. I was denied the right to hunger-strike while imprisoned, and forced to take drugs that are unlawful in my religion (Islam). My odyssey through various prisons and psychiatric institutions was altogether involuntary. For example, when I was interned in the state prison of Don Soria and refused to take neuroleptics, I was sent to the psychiatric prison of Reggio Emilia (a high-security institution for the mentally ill), where inmates refusing to take drugs are habitually beaten and four-point restrained for long periods. I was constantly threatened with prolongation of my imprisonment if I did not comply with psychiatrists orders. I was also forced to participate in oral psychotherapy, where everything I said was reported to the judge in order to let him decide whether I should be restored to freedom or have my sentence extended by another six or twelve months. It was the same with the mental health workers; every one of them would report to his/her superior in the chain of command, from the nurses all the way up to the judges. I once managed to obtain my medical records from one of the clinics I was in, and when I saw how the smallest thing I had done or said had been noted down, I realized that I was under a high surveillance regime. Today, however, I am free to talk openly about my experiences and find it extremely important to do so. I have a personal website with my photographs and psychiatric story, and I often hand out my visiting card to strangers, inviting them to visit it. I feel no shame whatsoever in talking about my experiences and, as a matter of fact, people who hear me out are often neither frightened nor outraged. They simply discover that they know little about mental suffering and psychiatry other than what they are told by the media. I believe that the only way to break the stigma of mental suffering is to show that there is nothing wrong with having an experience with psychiatry. People need to realize that it is useless to judge a person by a diagnostic label given to him or her at a certain point in time. People change, but labels are static. In Italy, discrimination on the basis of a psychiatric diagnosis is very common. As long as you have no contact with the mental health system, you might behave in a bizarre fashion without anybody taking much notice, but as soon as you have a psychiatric label, people are likely to avoid you or speak to you in a detached way, even if you behave quite ordinarily. The worst discrimination I have witnessed has come from the psychiatric system itself. Nurses and low-ranking professionals tended to view every communication from users as though it was coming from a nutcase. Regardless of how much sense one was making, one would invariably get the same remote, non-comprehending face expression, as if the staff were under the spell of ones diagnosis and therefore totally unreachable. I found it far more gratifying to speak to the cleaning staff or the psychiatric prison guards (who were policemen) than to the nurses. At least they could see me as a human being and not just a walking diagnosis. I have of course encountered mental health professionals who did relate to me as a person and sincerely strived to help me, but I have to add that they were few in number. Looking back, my conclusion is that it is not a question of individuals being either good or bad. The issue is that the whole system is wrong by nature, and everyone partaking in it is forced to comply with the rules and roles that make it up.

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Nonetheless, the mental health system has been of help to me at times. I still maintain contact with my psychiatrist, who is the only person who really knows what I have been through, and who happens to be a very understanding person. Through the advice of the local mental health services I have also come in contact with a users association, which has come to mean a lot to me. Since I joined them, a new world has opened up: a world of equals, proud of their shortcomings and their deep humanity. I no longer know how I would cope with life without them.

How can Tristanos story influence policy making for mental health?
Response from Dr Matt Muijen, Regional Adviser for Mental Health, WHO/Europe3 Peoples resilience is so often a moving characteristic of these life stories. Rather than simply criticizing the system, many people find strength in adversity and build constructive lives for themselves. Tristanos story is a powerful example. Clearly he has suffered experiences both psychological and imposed by his environment that most of us cannot comprehend. Nevertheless, he is determined to help others to learn from them. Tristanos experiences catalogue some of the challenges and fault lines in mental health care. Research shows that many mental health staff think and act in ways that are as stigmatizing and discriminatory as those of the general population. Prisons and forensic hospitals can be very institutionalized places, exhibiting all the characteristics described in Goffmans book, Asylums (Goffman E. Asylums: Essays on the Social Situation of Mental Patients and Other Inmates, London, Penguin, 1991) Another challenge is the interface between crime and people with mental health problems, and how to deal with responsibility and treatment. The lack of confidentiality experienced by Tristano is worrying, since doctors and nurses working in prisons should be responsible for medical care, not security. All these points and many others in this inspiring piece are worthy of further debate on WHO/Europes web site, and I look forward to reading the views of people with similar experiences, and the opinions of others.

http://www.euro.who.int/mentalhealth/topics/20071113_7

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