Labelled and ready for final storage – the mental patient who dared to speak out

Publicerat 18 Jan, 2006

Good sense and good manners do not always go hand in hand. Sorting people into little boxes and sticking a label on them on them can sometimes lead to crazy results, as in Annika Malmqvist’s case:
”The only person who held out any hope for me was me.“
For many years, she was diagnosed as severely and incurably schizophrenic. Today, she lectures on mental health issues and debates these issues with politicians.

“What kind of housing do you think mentally ill people would like to have?” she was once asked by a woman who held a senior county council post.
“What kind of housing would you like to have yourself?” answered Annika Malmqvist.
“But that’s not the same thing!” was the somewhat shocked response.

Is it inconceivable that a person who is mentally ill could have the same needs and desires as a perfectly healthy, “normal” individual? After all, in the words of the Buddhist teacher Chögyam Trungpa, “We’re all so very fucked up”.
Annika Malmqvist’s return to health is an impossibility, at least in the eyes of the many professionals that she met and still meets in the mental healthcare system. They can say things like “You must have been incorrectly diagnosed from the start”, or they wonder if she really does feel as good as she claims.
This is some 20 years after the psychotherapist Barbro Sandin published her famous book “Den zebrarandiga pudelkärnan”, about the return to health of Elgard Jonsson, who previously suffered from severe schizophrenia. He later became a therapist himself and wrote the book “Tokfursten”.

It is also a number of years since countries like Norway, Finland and Denmark began to adopt a broader approach in which schizophrenia is no longer seen as a strictly incurable illness that can only be kept under control with the help of medication.
“Some diagnoses are so highly charged and this affects the way people think,” says Annika Malmqvist.

She studied the history of literature at university and wanted to become a researcher. At the age of 21, however, Annika Malmqvist fell ill and was diagnosed as suffering from schizophrenia. This was 43 years ago.
“For the first 25 years I was admitted most of the time,” she says, “with a very gloomy prognosis. The healthcare system claimed all the time that I wouldn’t be able to cope with therapy.”

“There’s no point,” the doctors said. “We have medicines.”
“And they did, in huge doses,” says Annika. “Eventually, no one could differentiate between the illness and the side effects. Here in Sweden we still have a fairly hidebound biochemical tradition.”

She is not alone in having been declared incurable and denied therapy. In the course of many years of active work for the National Association for Social and Mental Health (RSMH), Annika has met several people who are still in this situation.

“The only person who held out any hope for me was me.”
Finally, Annika Malmqvist found a therapist who had retired. This was a doctor who had continued to conduct research and could still treat her for a standard health service fee. This meant that she was able to receive six years of therapy, from 1980 to 1985.

“This therapy released me from the grip of my lifelong psychosis,” she says. “We worked very hard together. It took a long time before the abuse that I had been subjected to as a child came up to the surface. Then I entered a world that I had never confronted before. It was extremely painful.”

The local mental health unit was forced to accept that their previously hopelessly ill patient had in fact, against all their expectations, become fit for work. Their only explanation was that she must have been diagnosed incorrectly from the start. There was no way that therapy could have any effect on schizophrenia.

Annika Malmqvist was employed under a pay subsidy scheme by two NGO’s in the cultural sector. This did not go very well, however, not because she was unable to cope with the work but because of the attitude of her colleagues.
“I was victimised because of my background,” she says.

Her so-called workmates ganged up on her and made the situation untenable for Annika, who resigned.
“As I see it today, it was almost the best thing that could have happened. It led to my becoming active in RSMH at the local, district and central levels. The fact that I have been able to work for others who are having a hard time means that I have not suffered in vain, and it has given meaning to my life.”

Working for and together with others is something that she wanted to do already in the 1960s.
“I longed to do something worthwhile and tried to become involved in a left-wing political movement. But they told me that they didn’t want people who were on the margin like me, it would undermine their struggle. They said my “mental illness” was really a façade, I was just lazy and didn’t want to work. They told me I should stand outside the liquor store and beg for coins instead of going to the hospital when I felt bad.”

The women’s movement attracted her too.
“They saw me as a totally hopeless case. How could I put up with being married to a man? They said that I was unaware, and that is why I was ill.”

She did become aware rather quickly, however, that gender equality and women’s issues had long been neglected in organisations for the mentally and physically disabled. In connection with the mental health reform, the politically planned and led transformation of the mental healthcare system in the early 1990s, she saw to it that RSMH applied for funds for a training project.

There was considerable internal opposition from those who did not see the point of helping women to increase their self-confidence so that they could take leading positions at RSMH. Weren’t things fine as they were? Annika Malmqvist helped to develop the programme and carried out some of the training, and she also visited Brussels to present the work. This gender equality project has inspired other organisations, and not only those for the disabled.

When a woman representing the Office of the Swedish Disability Ombudsman visited RSMH to praise the Association’s pioneering work on gender equality and women’s issues, the opponents at the top of the organisation performed a complete turnabout. Annika Malmqvist has been Deputy Vice Chairperson of the Board of the Association since 2003 and is also a Member of the Board of the Nordic equivalent of RSMH, the Nordic Association for Social and Mental Health (NFSMH).

She is often out and about giving lectures, taking part in discussions, being interviewed by the media or debating with the powers that be in the political world or in the healthcare sector. She takes an interest in RSMH’s projects and its exchanges with countries such as Tanzania and Nicaragua, and she is often asked for her thoughts on various research reports and studies.

“Stop! Not another survey! I cry then. I think all these surveys are just a salve for a bad conscience. It’s like reinventing the wheel over and over again. There aren’t many people in power who are prepared to take the next step - to actually do something. The most absurd thing of all is that the mental health reform went through with a lot of good ambitions, but then a major programme of cutbacks was immediately introduced.”

We talk about playing to the gallery, and the perils of preaching to the converted and only meeting people who are already positive in the course of her travels. Annika mentions an official at a public authority who took it for granted that a mentally ill individual could not manage something as complicated as sending a fax.

Annika Malmqvist also speaks about Sara, who is shown hoarding milk and cornflakes and coffee and cigarettes in a documentary film. She sometimes shows this film to people working in the mental healthcare sector. They usually laugh at Sara’s hoarding behaviour and cannot understand it, until Annika explains to them that Sara never knows when she will be able to shop again, because who knows when the panic and anxiety will attack next time?

Annika tells us about a young man who had been in therapy for four years. He had begun to feel better and then suddenly, as in the case of many other people who are open about their mental illness, he did not dare to show himself in public any more, he did not dare to go out. He was frightened of and threatened by aggressive, perhaps violent people who associate him with the “crazy killers” so often highlighted on newspaper placards in recent years. This sensationalism has become a popular way of selling more newspapers.

One early summer’s evening recently, Annika was testing some of her keys to see which of them fitted the shared facilities of the apartment block where she lives. An older couple first studied her carefully and then approached her hesitantly. “What are you looking for?” they asked worriedly, while keeping their distance. Annika explained what she was doing and told them that she had lived in the building for the last eight years. “We know!” they said. “We’ve seen you on TV.”

They had seen her in a programme produced by the Swedish Educational Broadcasting Company a few years earlier in which the person behind a mental disability and a diagnosis was portrayed. This was serious journalism and about as far from sensationalism as you can get.
“But suddenly I had become a danger to my neighbours, they had been affected by the recent hysterical media campaign,” she said.

Annika Malmqvist is satisfied with the help that she gets from the mental healthcare service these days. When she becomes depressed or anxious, there are personnel who meet her with respect and understanding. Her husband died suddenly two years ago, and of course she still feels a lot of grief. Some days are worse than others. The social services help out for two hours a week with things like shopping and cleaning. Annika is well aware that far from everyone with a mental illness or disability receives this kind of help or treatment.

"The mental health sector is the only sector in society where the customer is always wrong". Annika Malmqvist read this in a book that she cannot now remember the title of, but the quotation has stayed with her.
“The entire area needs to be demystified,” she says. Many people think that the whole subject of psychiatry and mental illness is terrible and difficult and incomprehensible. It is important that the personnel in the sector work with their own development as human beings and learn to recognise their own blind spots. They need to look more at the ethics and values that govern the way they deal with patients. Let’s face it, we would all like to hang on to our prejudices – it makes life easier.” 

Marie Eriksson marie@stockholmskulturbyra.se

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