Tuesday, August 16, 2016

For our children with special-needs, nothing is ever enough

On the firstday of her new post-school chapter,
Chaya has a new braid
Today we began a new chapter: the start of my daughter Chaya's post-school life.

In the lead up to this, we have been inundated  - by staff members at her school, by friends, by acquaintances - with the suggestion that we put Chaya in Aleh. And I have been baffled every time anew.

Each "adviser" is aware of the sacrifices my husband and I have made for the past 21 years to care for Chaya at home. Why do they imagine we'd wake up the day Misrad Hachinuch (the government of Israel's ministry of education) evicts her and follow their lead by declaring "enough is enough": We've loved her enough, we've invested enough time and energy in her, we've tackled her complex medical issues enough, we've struggled enough to develop her limited capabilities. It is time to retire as parents.

Yes, those well-intentioned folks touting Aleh are a conundrum. Sometimes we respond with our lecture about the iniquities of institutional life for everyone, even people as disabled as Chaya. But it's usually clear we can't make a dent in their preconceptions.

We had the opportunity to share our frustrations last week with the executive director of Bizchut. He listened attentively and sympathetically and explained the current focus of Bizchut's activities. Briefly, it is endeavoring to advance legislation that will enable more people with disabilities to leave institutions and live within the community. It is still staunchly opposed to institutionalization but does not expend as much of its resources to attacking specific institutions or to changing societal conceptions about them as it once did.

C. brought home this
final report
He encouraged us to join a committee of activist parents of children with disabilities and to create a video clip on the topic of institutions (and made some good suggestions about which professionals to use). He suggested that the video should profile families raising a disabled child at home and that it contrast the progress that has been made in other Western countries with the stagnation that plagues Israel in this area.

He cautioned us that progress will probably maintain its current snail's pace for many years to come. Nevertheless we left the meeting uplifted. It was great to hear another person echoing our unpopular views - in Israel, that is - about people with disabilities, their needs and their rights.

Last night, I listened to an interview with Anne Marie Slaughter on the Bloomberg channel in which she admiringly quoted a Finnish CEO: "Nowadays," he said "when a job applicant says he didn't use his paternity leave after the birth of his baby, I question his character." Slaughter was contrasting that Scandinavian outlook - a product of the narrowed  gender gap there - with the American one which often doesn't even offer paternity leave at all.

I dream of the day when, here in Israel, we react to a parent's revelation that he has institutionalized his child with disabilities the same way as that Finnish CEO: by questioning his character.

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