A Personal Perspective on the Development of the Survivors’ Movement in Israel

I entered the old-fashioned building of the closed ward. The special, sharp smell hit me hard. After a while they wanted to give me medicine, and I vehemently refused. They pressed, and I insisted. They became threatening to me, and I threatened with physical aggression against anyone trying to force me! Finally, in a trick that prevented a face-to-face struggle, one of them came from behind me and choked me hard. Four sturdy staff members came over and grabbed me. I still resisted a little, and they beat me and dragged me to a small side room, far from the center of the ward. There was a metal bed in the room with her legs wedged into the floor and thick strips of cloth dangling from her four horns. I was absolutely shocked. They laid me down and tied me “on all fours,” gave me an injection, and a large black screen fell on my mind. All at once I plunged into the realm of sleep.

I woke up. I was wearing bluish pajamas, much larger than my size. My legs and arms were bound like in a terrifying horror film. After I had digested my condition and recovered a little from the blurring that surrounded me, I began to call them to release me. After a short time my loud cries gradually became shaky and feeble. No one came! And the hours passed. I was very afraid that they had forgotten to note that I had been left in that room. Cold sweat washed over me from this thought. In my mind I could not help remembering the skeletons chained to the walls, found in the cellars of European castles. I was afraid that I would die there bound to bed, completely helpless.

In my estimation, I was tied up for more than half a day. The light from the window behind me was already dim as the dusk. My thoughts wandered through every corner of my life; my childhood with my parents and my sister, with my friends and teachers at school, with the horrific depression of the past year, with the realization that I was no more than crazy, and that was it! My spirit hovered in all my worlds and my body ached; the buttocks hurt slightly from the injection, the back from the position, and the arms from the ligaments fastened by the large screws. But there was another, much more serious problem. Like all flesh and blood, I had to pee. The only option was to do it on myself.

When this possibility occurred to me from time to time, I was filled with a terrible rage. I was infuriated, with the whole hierarchy of the hospital: the staff, the doctors, and especially the hospital administration. But mostly I was angry with myself and with patients like me for being so powerless and miserable, because we are neither united nor organized. I was so angry, and apparently I could not do anything! On the face of it, being completely bound, I was in a completely passive position toward the reality around me . . . The hours continued to pass. I felt that I wanted with all my might to be active in relation to my existence in general and in relation to the hospital surrounding me in particular, but I did not know how to be so.

Meanwhile, in the lower abdomen the pain increased and pierced. I was in physical and emotional distress. And suddenly, one thought made me smile. It was a tiny smile, but real and confident. Suddenly I knew very well that I could hold my needs inside me despite the pain, and thus be active! I wanted to see their faces when they entered the room and saw that I had remained dry. That in the end, despite the restrictive conditions, I was active! Because I have overcome myself and all of them.

I did not know back then how this small decision was actually a formative experience. From then on, I became someone else — a man who is actively and courageously facing the world, which has innumerable obstacles and pitfalls, especially for him and his like.

* * *

This was written by my spouse Tzviel Rofe’ about his hospitalization as a young soldier in a psychiatric institution named Mazra. That was the ordeal which planted in him the seed for future motivation to lead his friends to gain control of their fate.

In 1989, with the encouragement of his psychiatrist, he began giving lectures to different audiences about his experience. In 1991, at the end of one of these lectures, someone approached him and asked him to come to his house to give a lecture to a group of friends. The lecture became a series of enthusiastic encounters, thus creating the first self-help group in Israel. After a year Tzviel trained three people from the group to replace him, and opened another group and then one more. In 1992, together with a handful of friends, he founded the first organization of people with psychosocial disabilities in Israel, whose name was “Coping” (Hitmodedut in Hebrew), and in 1994 the organization became a formal association. It was a pioneering body from many perspectives: representation, lectures, appearances in the media and also a hotline telephone service, fighting stigma, and distribution of knowledge.

Tzviel gave his assistance to establish “Ozma – Israeli Forum of Families of Persons Coping with Mental Illness” which was founded in 1996. From Ozma’s site:

“Tzviel Rofe’, the pioneer of the advocacy and self-help movement in the field of mental health: along with a few friends, Tzviel initiated, founded and led the organization “Coping” in 1992… For the veterans of Ozma, he paved the way for organization and action. The warm friendship with Tzviel contributed greatly to achieve the supreme goal of family organization and activity until the completion of the enactment of the Rehabilitation of the Mentally Disabled in the Community Law in 2000: Rehabilitation for People with Mental Disabilities in the Community. Tzviel supported, promoted and mediated between us and significant elements in the field…”

The ‘Coping’ association disbanded in 1999, mainly because of internal conflicts and disagreements. Tzviel was then subjected to an intensive mental treatment, and his state was stormy and fragile. We married in 2000 and for several years we were busy building the infrastructure in our marriage life and did not engage in public activity other than sporadic appearances in the media.

In 2003, we established a new organization in our living room: ‘Copers for Copers’ – MALAM (MALAM represents the initials in Hebrew, and ‘cpers’ — Mitmodedim in Hebrew — become the standard common name for people with psychosocial disabilities). The objective of this organization was to monitor the mental health system in Israel, and to lead social and legal human rights struggles. In 2004 and 2005 ‘Copers for Copers’ held two large rallies — “Marching with heads up” — for survivors and their supporters .I invented the slogan: “If you knew me, you would go crazy about me.” At the end of these festive rallies were artists’ performances and torches lighting. Enosh Association (an Israeli national mental health association, whose name literally means ‘human’ in Hebrew) financed the events and helped with its production.

One of the members of MALAM, Avi Oren, suggested to turn the organization into a formal association. Tzviel refused because he didn’t want to deal with money and preferred a complete independence on a voluntary basis. Avi Oren left the organization and established Lishma, which is currently “the only national organization in Israel run by people with mental disorders for people with mental disorders.” Lishma is training and integrating rehabilitation and treatment workers in the mental health care system in various roles, and is funded heavily by the Ministry of Health. Their most prominent and advanced pilot project is a peer program in mental health hospitals: “where trained people with mental disorders become part of the staff as they help their peers and their families to cope with the many challenges they face when entering the hospital so they go through a meaningful stay leading to a better recovery.” This is a very important project, but its conduct raises questions. Shiran Gefen wrote in an academic paper:

“According to the interviewees, the experience of providing the service as a service-oriented consumer involves a built-in conflict: will the service provider succeed in being loyal to the service providers alongside whom he works, or will he choose loyalty to the service recipients? Where they work, and are required to ‘choose a party’, to remain loyal to the service providers or to the clients, and sometimes witness cases of injustice, violent and humiliating behavior against the clients and feel that they can’t object to this behavior or take any position to stop it… On the other hand, the process undergone by the service provider, as a person who has undergone dehumanization and expressed opposition, does not allow him to remain indifferent to acts of injustice and humiliation carried out against other people. The experience of providing service in the mental health system is seen as a complex experience, which in many cases requires a great deal of inner resources. It is apparent that service-oriented consumers are certainly empowered by their service providers, but they often feel disconnected in the mental health system — they do not belong exclusively to service providers, and do not fully identify with service recipients. In extreme cases, interviewees say they were forced to leave their jobs as a result of their inability to cope with the difficult conflict.”

This is another example of too much control by the professional mental health establishment. In some jurisdictions in North America and elsewhere, there is a variety of models of peer support services, such as ‘stand alone’ peer support: services that can reach into hospitals as well as provide community care, in addition to peer supports who are hired by or volunteer in hospitals. Peer support workers there can choose which type of organization to work or volunteer for.

After the establishment of Lishma we cooperated with them and sat together in the framework of “the coalition of organizations in mental health” for the implementation of mental health reform (transferring the responsibility for mental health services from the government to the health management organizations). We even signed on to a petition to the Israeli Supreme Court in order to expedite implementation of the reforms, which indeed led to a government order and its implementation.

The activity of our organization continued with great difficulties. We were unable to advance things, again because of internal disagreements. There was a feeling that we were pressing down the gas pedal but driving in neutral and not moving, almost paralyzed. Tzviel and I began to realize that the responsibility for the unsuccessful conducting of the organization lies with us as well. Maybe we are not perfectly suitable for teamwork. We are too opinionated and prefer to manage things independently according to our own understanding. My main problem personally was that organizational activity is slow and cumbersome, and I tend to put ideas into practice without delay. Also, and not less important, after 15 years of organized public work, Tzviel felt worn out and very tired.

At the beginning of 2007 Tzviel gave a lecture to 200 physicians and managers of Maccabi HMO. Following this lecture, Maccabi offered to fund a large conference that took place in November, 2007 in Tel Aviv, attended by about 400 people. When Tzviel came to the stage to say his greeting to the audience, he announced that we both would retire from organized public activity.

At this point, a busy and fruitful chapter of our independent work began. We have filed two petitions to the Israeli Supreme Court regarding patient choice in their place of hospitalization. Patient’s rights in choosing hospitals in Israel are divided into three levels: oncology patients can choose any hospital they wish, other patients may choose between hospitals that are in agreements with the HMOs, while patients with psychiatric disability are confined to a single specified hospital, by address of residence, without any choice (the country is divided into 23 hospitalization areas). We found that this arrangement severely violates the equality, autonomy, and human dignity of people with psychosocial disabilities, and turns the psychiatric hospitals into monopolies that do not have to compete for service and quality of care, hence the difficult conditions prevailing in them.

Formally the Lishma association added their signature to our second petition in 2012. Enosh and Ozma, the groups mentioned before, and also Bizchut (which means ‘by right’ in Hebrew), the Israeli Center for Human Rights for People with Disabilities — all three served as amici curiae (friends of the court). The friends’ petition was written by Adv. Sharon Primor, the legal counsellor of Bizchut, and by Adv. Adi Nir-Binyamini from The Human Rights Clinic in Tel-Aviv University. Eventually the court did not help but did leave its door open (you can read more about it in my previous blog Letter from Israel).

In 2014 we initiated a bill proposed to the Israeli Parliament. The proposal fell in an early stage, in contrary to an explicit promise of Yael German, the Minister of Health at the time, because the mental health department issued a new procedure and also began publishing a daily update of occupancy rates. This procedure ostensibly promised “as a rule, a patient who needs hospitalization will be able to choose the hospital in which he wishes to be hospitalized,” but conditioned it on less than 95% occupancy rate at the time of admission, whereas in practice, the average occupancy rate in psychiatric hospitals is greater. Therefore the situation has not changed in practice and the old regional arrangement still rules. Recently we initiated procedures for a third petition in order to rectify the enduring discrimination of mental health patients, because we hold a deep conviction that psychiatric hospitalization should apply the same procedures of the general hospitalization in accordance with the general law.

In fact, we believe that the time of the standard institutional structure has passed, and it is time to dismantle it. It should be replaced by new models, such as Soteria which was founded in Israel in 2016 by Prof. Pesach Lichtenberg. Since then, four more houses have been established, which operate according to similar principles. Soteria and the other houses represent an entirely new and different paradigm of therapeutic attitudes, and the HMOs in Israel should fund the form of hospitalization in these new models, which are lower in cost. We are doing our best to help in this matter.

Although our legal and parliamentary struggles weren’t a great success, the entire subject which had been always in the backyard of Israeli society was greatly exposed. We published articles in a prominent newspaper, there were articles on most of the news websites, and we appeared on some leading television programs and quite a few radio programs.

For people with psychosocial disabilities it is sometimes hard to find dating connections due to social isolation. To address this need, Tzviel and I established in 2012 a fully free online dating site www.nefesh.co — nefesh means soul in Hebrew, and the slogan of the Web site is “efesh el nefesh” or “soul to soul.” It is the first site and still the only one of its kind in Israel. We believe that sharing similar mental health related experiences can lead to mutual empathy and support, and that this kind of love facilitates individual recovery. I manage the site myself, and currently there are 2,221 registered members. Almost every day new members join the site. About half of the members (48%) use personal photos. We were even invited to one marriage celebration. Also, Tzviel and I have both written personal blogs about mental health issues for more than a decade; we’re active in the social media, and we publish both together and apart articles in the national press and digital magazines and news websites, as well as academic journals in the country and abroad.

In January of 2015, we joined Bizchut in their project on the protection of human rights within psychiatric facilities, and started a fruitful collaboration of fighting against human rights violations in psychiatric hospitalization. The first issue was restraints and seclusion. The opening shot of the campaign was my article “People with mental illness in Israel are afraid to die tied to bed” (“Haaretz” on June 21, 2015) about the excessive use of coercive measures such as restraints and seclusion in psychiatric wards in Israel, which violates human rights and is thus both offensive and harmful for bodies, souls, dignity and liberty of these people.

In March of 2016 a pioneering and innovative report was published by Bizchut, entitled “Breaking the Restraints: An Account of Systematic Human Rights Violations.” This report was written by Adv. Sharon Primor, the legal counsellor of Bizchut, and it publicized widely the campaign that got the name ‘Breaking the Restraints.’ Two months later the famous case of “Noa” burst out in the media. “Noa” was a young woman who had been restrained for 24 consecutive days, and her painful story poured fuel on the fire of the campaign. As a result of the public pressure a government committee was formed to reduce restraints and seclusion. This committee published a series of recommendations aimed ultimately at the abolition of this practice. The good recommendations have yet to be turned into formal and binding procedures, and as expected this process is encountering complex difficulties.

But in order for there to be a real chance for significant positive changes, a strong and independent advocacy organization of our people must be established. There is no such body right now in Israel. Our deep hope is that the younger generation will establish an advocacy organization that will act on policy issues and promote rights. Unfortunately, the situation does not seem particularly promising. As long as the only organization of our people is offering a way to earn a living and even develop a career, it is hard to find people who will act voluntarily and conduct struggles that could take years to begin reaping tangible fruits. Our main fear is that even if an independent advocacy organization will be established, it will not succeed to survive alongside an association that offers jobs to its members.

Moreover, organizations that deal with providing services are in great danger: when there are economic constraints, such organizations tend to invest mainly in developing partnerships with government ministries, and the needs of the community are not fully met. People who are not interested in advocacy but in developing services that will improve the lives of people with psychosocial disabilities must try to recruit to their organization men and women who will not be afraid to lose budgets and will act as a real consumers’ force.