A survey and the sad story it tells

You would be forgiven if you were unaware that February was Jewish Disability Awareness Month in the United States. It failed to earn a mention in the Israeli media. Nonetheless, people with disabilities have received more than their usual share of attention in recent weeks.

AKIM, the National Association for the Habilitation of Children and Adults with Intellectual Disabilities, publicized an opinion survey during that month. Dubbed the Index of Inclusion of People with Intellectual Disabilities, it polled 605 Jewish and Arab Israelis about their attitudes toward people with disabilities.

The results were dismal. 67 percent of the respondents admitted that they did not know how to talk to a person with intellectual disabilities. Most were unconcerned about this shortcoming: fifty-two percent of them said they are not interested in ever meeting anyone with disabilities and special needs. Over half believe that people with intellectual disabilities have no right to bring children into the world. 37% would also deny them the right to vote. And 25% said that they would dislike having a waiter with disabilities.

Now imagine if such attitudes were aimed at an ethnic, racial, or religious minority. The cries of outrage from human rights organizations would be deafening. Placard -waving demonstrators would flood the streets. Irate op-eds would proliferate.

But when the target is Israel’s adults and children with developmental disabilities, society is – at best – apathetic.

Ironically, this is the only minority that every one of us could be suddenly thrust into through illness or accident. But “it won’t happen to me” seems to be the guiding credo.

Without changes in public policy, this situation is unlikely to improve significantly in the future. Inclusion of people with disabilities is a high priority everywhere else in the developed world. Yet Israel, otherwise advanced and enlightened, clings to its archaic direction in this domain.

The result is that 12,500 Israelis with disabilities still languish in large, closed institutions separate from the rest of us.

There are many instances that prove contact with a minority is effective in eliminating prejudice and fostering acceptance. As long as citizens with disabilities are institutionalized, the status quo is likely to endure.

This egregious violation of human rights must finally be eradicated. We cannot wait for those who are repulsed by disabilities to “get over it”. The question is how. Achieving the right to live in small residences or with family in the community of one’s choice is proving to be an uphill struggle for those with disabilities and their supporters. The pro-institution camp is large, well-connected and generously funded.

My profoundly disabled daughter, Chaya, is now nineteen years old. When my husband and I can no longer care for her, what options will we be offered? The thought of removing her from our loving home, distancing her from her family, haunts me.

We live in a Jerusalem neighborhood where young adults like Chaya are often seen on our quiet, tree-lined streets. They reside in local apartments, are taken shopping in local stores and pray in local synagogues every Shabbat. The school Chaya attends operates small-group homes in those apartments.

More than two decades ago, the school encountered fierce opposition from residents when plans for its move here were announced. Other such small-group homes have triggered similar or more extreme reactions. In some instances, mayors have banned small-group homes from their cities. The fear of lower property values is often cited as a key motive.

But Chaya’s school persevered and won. Today there is no trace of that ugly battle. Facts on the ground achieved what no laws, court rulings, preaching or demonstrations could.

The school our daughter attends is for blind and multiply disabled children who are bused in daily to enable them to remain living at home. Sadly, its progressive policy of inclusion attracts insufficient government support or assistance. Persistent and severe financial crises plague it. Last month, its small-group home apartments were on the verge of closure for lack of funds.

Institutional residences, on the other hand, flourish in Israel thanks to the government’s preference for them over inclusive solutions.

The largest Israeli network of closed institutions for people with disabilities, ALEH, garners substantial government support both financial and promotional. Its ALEH Negev facility, a $42 million project, was built on land donated by the government. Currently, 80% of its $30 million operating budget is provided by the government; the rest comes from private contributions. Its capital development project budget receives 50% funding from the government.

ALEH recorded a 55% expansion over the past seven years and boasts ongoing construction at two of its sites. It says it will soon admit an additional 48 children to its most geographically-isolated facility in the Negev.

ALEH’s aggressive public relations campaigns have persuaded many that it is a godsend for people with disabilities; that the therapies provided in its institutions – which they euphemistically call “rehabilitative villages” or “campuses” or “residential facilities” – are unavailable in other settings.

The truth is that therapies do not preclude inclusion. People with disabilities need not forfeit their civil rights in order to be rehabilitated. They do not have to be secluded, taken from their families or kept out of sight in order to thrive. Occasional visits to or from “regular” children, as ALEH refers to the non-disabled, are no substitute for inclusion.

A new ALEH plan is to bus children from one of their institutions to a separate school and therapies center currently under construction. This new structure, named ALEH C.A.R.E.S., will, the website claims, remedy the following:

“100 children of ALEH spend almost all of their time within the same four walls, severely compromising their quality of life.”

This will be accomplished by

“giving those children the opportunity to leave home every day and travel to their rehabilitative programs, just like every other youngster.”

The result, according to ALEH?

“The application of this “normalization principle,” where school and home are two separate entities, will enhance their quality of life immensely.”

Will we buy this illusion? In reality, the place where those children currently reside is not “home” but rather a large institutional residence, often located far from their parents and siblings. That is not “normalization”; it is isolation. And that “enhancement of quality of life” is in reality a violation of the United Nations Convention on the Rights of People with Disabilities.

That UN treaty, ratified by Israel in 2012, affirms the right of people with disabilities to live within the community, and to have ”access to a range of in-home, residential and other community support services… and to prevent isolation or segregation from the community” [Article 19]. Explicit Israeli laws and judicial rulings reinforce that view.

Israelis with disabilities have suffered long enough from the sugar-coated discrimination of publicly-funded, large-scale institutional living. Government steps to end it and to live up to its legal and moral obligations are long overdue. Only when our officials do so decisively can we hope for better news from AKIM’s annual surveys.