The struggle to be equal

People recovering from psychiatric disorders find themselves as much the victims of stigma as of the condition.

By JUDY SIEGEL-ITZKOVICH
health 248.88 (photo credit: Judy Siegel-Itzkovich)
health 248.88
(photo credit: Judy Siegel-Itzkovich)
How many of you are afraid of people suffering from psychiatric disorders? Eight out of 10. How many would refuse to be in contact with them? One in five. Prefer not to have them as neighbors? One in three. To share an office with them? One in three. To employ them? Half. To be a close friend with whom one shares all secrets? One in three. To have one as a boss? Three in four. And to marry? There's no point in asking. A public survey conducted recently by Dr. Naomi Struch of Jerusalem's Myers-JDC-Brookdale Institute on a sample of 1,500 Israeli adults showed that stigma is this group's biggest barrier to integration in society. But Struch, who presented her results at the Health Ministry's annual conference on mental health - focusing this year on stigma - said that even these responses are optimistic, as many people are embarrassed to admit prejudices even in an anonymous poll. Sufferers of such psychiatric conditions - from schizophrenia to depression and from bipolar disease to obsessive-compulsive disorder - prefer not to be called "mental" or "psychiatric" at all, the speakers stressed, but rather mitmodedim (copers) or tzarchanim (consumers of mental health services). But since the general public doesn't know what these terms refer to, pollsters must use the accepted terminology. More than 900 people attended the all-day conference at Jerusalem's International Convention Center, most of them psychologists, psychiatrists, social workers and Health Ministry professionals but also numerous "copers" and their families. Those who know mental illness from personal experience rose to the podium to tell of their own or their loved ones' experiences, and some even appeared as a band named Knafayim (Wings) that performed the song We are all the children of life. Their message was: "We are not to blame! We are not ashamed!" BUT SELF STIGMA, in which copers believe the stigmatic image of people with mental disorders, prevents many of them from rehabilitating themselves, said Dr. Galia Moran, an Israeli clinical psychologist and currently a post-doctoral researcher on mental health at the University of Boston. One of her patients said: "I think of myself as garbage. I won't even walk on the sidewalk; I'm not suited for humanity." Such copers tend to be alone, said Moran, and have low expectations for their own recovery. "Stigma means seeing a person only from one angle - not as a whole person from all angles. The person is equivalent to his disease: he is schizophrenic, he is bipolar, he is depressive." Due to a major change about a decade ago in ministry policy regarding treatment and rehabilitation - shifting all but the most seriously ill from psychiatric hospitals to non-profit organizations in the community - the general public is having more contact with copers than ever. Thus the ministry and community services are doing their best to change public perceptions. "The general impressions today are irrelevant," said clinical psychologist Yehiel Shereshevky, the ministry official in charge of rehabilitation. "This leads to stigma and positions that are difficult to change because they are very deep," he said, even though surveys have found that 20% of the public admit to having a family member with psychiatric problems. He added that while most apartment owners would be reluctant to rent to someone known to be a coper, if they had guarantees that the rent would be paid and the flat would not be damaged, they would agree. Another optimistic finding is that the younger generation is less likely to hold stigmatic views than older people. Shereshevsky said many Israelis have no idea that there are effective psychotropic medications that keep copers able to function in daily life. "Sixty years ago, there were no effective drugs, so perhaps then there were more people on the streets who acted unexpectedly and violently." The ministry is contracting organizations to provide rehabilitation services in the haredi and Arab sectors as well as in the general population. There is even a café run solely by copers. "We can bring back people we would otherwise lose," the psychologist said. "If the Israel Police were to reveal that the level of serious violence committed by mentally ill people is much lower than in the public at large, it would help, because the common view is that patients are dangerous," Moran noted. The Israeli researcher in Boston stressed that thanks to new medications and other treatments, more than half of all people with serious mental disorders recover - and after a few years are able to function well, finding employment or doing volunteer work. She blamed much of the media for stressing a negative and sensational view rather than one which shows that those who recover can live satisfying lives. Meir and Maya Agassi, a couple both "coping" with schizophrenia who married after meeting in a patient hostel, were stars of a moving documentary shown during the conference. "It's a disease that persists, but treatment helps us disregard it. We are not normative people, but we try to do what others do," said Maya. "Both of us are working in paid jobs. We are not ashamed and don't hide it anymore." They take their medication together. "The drugs balance us. We can function to a level of 95% compared to normative people. Our psychiatrists think we are well enough to have children. We have a right to do it... We never hurt anybody." Tzofit Grant, wife of famous soccer team manager Avraham Grant, appeared in the movie alongside her brother, a recovering psychiatric patient. Her eyes filling with tears, she admitted that as a youngster she was ashamed of him. "Mom cursed me," he recalled, "I was insufferable when I refused back then to take my pills. Mom and I used to feel like enemies, but today we are friends." Living in a hostel for recovering patients, Grant's brother functions well, going with fellow dwellers to the cinema and cooking together for Shabbat. Moran noted that as Israel is a small country, there is a "significant potential for reducing stigma and rehabilitation" compared to much larger countries, where people fall between the cracks. The mentally disturbed are often unfairly described as being violent, unpredictable, childish or morally weak, rarely as creative or enlightened. Showing a slide with a young couple and a smiling baby, Moran asked the audience to think of the man as having just come home from a cancer treatment. He would get a lot of sympathy. "But imagine if he were being treated for a mental illness. What are your reactions? Usually there is antipathy to people with psychiatric problems - even though half of them improve significantly; some don't even have to take medications and are employed in meaningful jobs. This helps us remember that people can overcome problems and live fully. Recovery is not just a straight line; it moves a few steps forward and a few steps back." Moran told the story of a woman named Lynn whom she met at her center in Boston. "She felt so desperate that she almost cut her veins." A hospital psychiatrist told her he doubted she would recover, but she decided to study. Eventually, she became a paralegal adviser to patients and ran workshops in psychiatric hospitals. "Years later, she was sent to the same hospital where she had been treated to present a workshop. The psychiatrist who so discouraged her thought she was a familiar face. She identified herself and reminded him of what he had told her. 'What are you doing here?', the shocked psychiatrist asked. 'I am here to run your workshop,' she replied. Today, they are friends," Moran said. "But even professionals in the field often have negative expectations of their patients. Research shows more stigma and pessimism among professionals than among the general public. It apparently comes from mental health workers seeing many patients in the worst condition." THE UNIVERSITY'S Center for Psychiatric Rehabilitation was established by Prof. William Anthony in 1979. "It is based on a vision of recovery and does rehabilitation and research studies, as well as teaching and producing a scientific journal," Moran said. Its facilities include a recovery center in which those with problems are invited to take courses - free - to become empowered, fight inactivity and become ready for change. "They are called 'students' and anyone can participate. We have 150 in 25 courses on work, health and personal development. We teach them how to manage their disorder." But patients who are not in rehabilitation are at higher risk of physical diseases as well. "They have a 25 years' shorter life expectancy, and are more likely to get hypertension or diabetes." Project Dialogue, initiated and run by 20 Israeli copers, was described. "We travel all over the country, said Gidon Galon, a 34-year-old who had his first crisis at 24 and was hospitalized in the Talbieh Mental Health Center. "I went to a neighbor and offered my car, explaining that I would win the Lotto that day. But I didn't." Later, he told people that he wanted to die. But he received help and met the woman who became his wife. "Before, I just wanted the day to end. Today, I am happy with my lot." Galon has coordinated Project Dialogue for three years, with 180 meetings bringing encounters with 5,000 normative Israelis around the country. "We tell our stories in first person and the audience asks questions. It's a very powerful experience, and people - with tears in their eyes - say they were moved. Our aim is to reduce stigma." Copers, he concluded, "should not be ashamed. They should talk about it. They should feel they are equal to others - not better or worse, but equal."