Encore Archive

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In Search of Care for the Handicapped

By Melvin M. Landau

As it turned out, my son did not frighten the other children. But I think he frightened the institution. While he was ultimately admitted, little accommodation was ever made for him. My simple request to keep his classes on the first floor seemed much too complex for the school. The first floor (only three stairs) was for the younger children. The second floor (twenty-three stairs) was for children in wheelchairs! Finally, after a few years, it was established that his home-room would be on the first floor; however, there were always services or other classes or special events which necessitated his being hauled up and down several times each Sunday. In his wheelchair, I dragged him up and down the stairs for five years--until he got too heavy for me to do this with safety. My wife also did some of the hauling. All too often, men and husky adolescents walked past her while she was struggling with the wheelchair, without offering to help.

It is said, "Si iz schver tsi zein a Yid." ("It is hard to be a Jew.") It is even harder if you are a disabled Jew. My son identifies himself as a Jew. I wonder--does the Jewish community accept him? I have often wondered about the fate of other Jewish children with similar problems. And more important, what will happen when they are adults--without parents? Will the Jewish community take any interest in them then?

God willing, my son will go to college and learn skills to make himself self-sufficient and independent. But, if not, what then? If he can't get up to the second floor, will they serve him on the first floor?

When Orphaned, How Will They Survive?

David is fourteen. He is afraid to grow up. He is afraid that if he gets any bigger, his mother and father will not be able to lift him. He has become very depressed. For the past year he has been starving himself. But he was denied admission to an excellent hospital treatment program for emotionally disturbed children because they do not take wheelchair patients.

Mark, a college graduate, is also so severely disabled that he will not be able to live independently. His parents are growing older; he must soon find an alternative living arrangement.

Andy, another Jewish boy, was struck by a car while riding his bicycle. He suffered a brain injury, which caused personality changes, and he will need someone to guide him for the rest of his life. He is an only child; his parents are middle-aged and his mother is terminally ill. His father wonders who will assume the responsibility of overseeing his son's welfare when he is gone.

Because the same problem concerns me, I went to the Family and Children's Services Division of the Jewish Federation in Chicago recently to see if they had a Guardianship Service. I asked, "If I manage to provide in my estate enough money to provide for my son's needs, would the Jewish Federation assume the responsibility of seeing that such funds are used for his support? Would they see that someone visits him to know that his needs are being met? That he is living with some semblance of dignity?"

I was told that no such service is available in the Jewish community.

Jewish Residential Facilities Are Needed

I joined an organization called Over the Rain­bow, whose purpose is to build and maintain residential facilities for handicapped young adults. After four years of struggle, it now has under construction eight specially-designed units in Chicago which will be available to disabled adults who can live independently. But its members still face the bigger challenge of building a residential facility for their own children. The parents have realized that while getting funds to build a building is a formidable task, it is small in comparison to the more impor­tant problem of ensuring continuity of care for their children after they are gone.

I estimate that there must be several thousand physically disabled Jewish young adults in the United States. But I don't really know, nor would I expect you to know. They are largely invisible. Because they are in wheelchairs, their mobility is limited. Many of them have difficulty com­municating, so they cannot speak out and make their presence known. Because society in general has not taken them into account, their access is limited; they can't cross streets because of the curbs, they can't get into public buildings because of the stairs. They are often kept at home and apart from the public and each other.

Because of physical barriers, they are shut out. Because of attitudinal barriers, they might not be welcome if they could come in. They are separated from each other because of their limited mobility and small numbers. They cannot even form a Jewish handicapped community. This is not to suggest a desire or need for an exclusive community, but the need for a community where there are enough Jews, so that they are not out­siders--enough Jews so that they may continue to identify as Jews and practice Judaism if they desire.

Fear in Place of Compassion

My son is mainstreamed at the local public high school--the first student in a wheelchair not turned away by the school, because of recent federal legislation. There is a large Jewish popula­tion in the school. I have not asked my son whether he has Jewish friends in school. I only know that the friends who have come to visit are gentile. In the summer, he spends two weeks at a camp for handicapped children. Afterwards, he corresponds with some of the counselors. Generally, they are college students. They come to visit him during the year. None of them are Jewish.

Do only gentiles have the obligation of bikur cholim (visiting the sick)?

Is there not a Jew who will play chess with my son? Is there no Jew who will visit him in later years to see that his needs are met? Have Jews lost the ability to "kleib naches" (take pleasure) from personal involvement with the needy and now are left only with the sterile joy of public giving or professional service?

I write not in the spirit of bitterness or complaint; more to suggest that the Jewish community may be losing its Yiddishkeit--its compassion. Is it possible that the principal of my son's Sunday school properly perceived the problem--that Jewish adults (not the children) are frightened of dealing with these different-appearing children and adults? Can it be that we Jews are still striv­ing so hard for acceptance--for assimilation-- that we avoid anything that is "deviant," even our own children? Are we so concerned with developing our children's intellects and turning them into achievers that we don't want to bother them with their peers who may not make it?

Second, and more important, I hope that I may stir some of you to action. I would like to find a group of similarly situated parents who have the resources to organize and maintain a residential facility where their children may live out their lives in dignity, with whatever degree of Jewishness they deem appropriate. Or better still, that the Jewish service community recognizes the needs of these hidden young people and finds the time and the means to serve them, so that the needs of all such Jewish youth may be served without regard to their parents' ability to provide. However, a beginning must be made somewhere.

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