Op-Ed: Inclusion is not for everyone


(JTA) — By its very nature, mental illness is an isolating experience. People who live with it experience their own realities that are not tethered to the commonly shared view of reality. They often think, feel and see things differently than those without these illnesses.

The current movement touting inclusion of people with disabilities in all aspects of community life – and intolerance of any programs or congregate living situations for people with disabilities – belies its own stigma against this population. For some disabilities inclusion activists, it is inconceivable that people living with mental illness would choose to live with others facing the shared life challenge of mental illness.

Our son lives with mental illness within mainstream society.

He lives near us in an apartment in a diverse and comparatively tolerant area of the U.S. To our knowledge he has only been approached by police three or four times for acting too strangely, and he has only been beaten up once. When he was working, our son lived in a two-bedroom apartment with a roommate who abused him financially. He has no friends and no consistent contact with friendly people.

Stress is the enemy of people with mental illness. It can exacerbate their symptoms and cause hospitalizations. The ideal living situation for someone with mental health issues is the one that is the least stressful. Stressors are unique to each individual. The ultimate decision of where a person would like to live, and under what conditions, should be his/her own. To insist that every person with a mental illness live in the community is paternalistic.

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For nearly two decades, Israel has been home to a remarkably innovative program for the mentally ill — providing for the residential, social and vocational needs of people with mental illness.

At Kishorit, a kibbutz in the western Galilee, the mentally ill and those with other disabilities find a home that offers them the necessities that are so difficult and stressful for them to arrange on their own. Members are offered a full range of options: to live in the kibbutz setting alongside a mainstream community of typical families, or in Kishorit’s supported apartments in the nearby city of Carmiel; to work in the general community or in one of the kibbutz’s own businesses; to enjoy leisure time activities in the kibbutz and/or beyond. Including the person in these and other decisions about his or her life should be the true goal of the inclusion movement.

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As in other kibbutzim, housing and services for life are assured. People with disabilities become part of a community, helping one another in a caring network. Meaningful work is arranged, taking the interests, particular skills and needs of each individual into account. Experienced staff provides specialized guidance, so difficult to arrange in society at large.

In Israel, kibbutzim are often organized for people with some common bond. The establishment of a kibbutz whose members share the commonality of living with a life-altering challenge is consistent with the kibbutz movement. Accepting the validity of a kibbutz, the majority of whose members are disabled in diverse ways, as one would accept the validity of a vegetarian kibbutz or a religious kibbutz is the essence of inclusivity.

Perhaps personal experience in caring for and about people who live with mental illness is necessary for understanding what a treasure Kishorit is. As soon as our adult son and we stepped into the kibbutz, we felt we had stepped into a world that encompassed everything that would be good for him – a pleasant, welcoming physical home, people with whom he could be comfortable immediately, a place where he could use his strengths to help others and a place with real options for work. The Israeli government and philanthropists need to know and understand that there are tens of thousands of people who could benefit from living in places following the Kishorit model.

It will, in the most optimistic scenario, be many years before services offered by the “community” expand to encompass our son’s needs. And that is only if someone realistically and knowledgeably assesses his situation to determine his needs. Even if that day comes, the richness of his life will never compare with the richness of the life he could live at Kishorit.

(Hugh and Esther Bergknoff, have worked together for many years both professionally and as partners parenting their five children. Hugh is a physician and Esther is his office manager. They have a long history of caring for and about people living with mental illness.)

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