|My daughter at home|
Why do so many Israelis feel that way?
This week we raised that question with an expert in the field of alternative living options for people with disabilities. She designs projects of inclusion for people with disabilities and then presents them to the Israeli government to be considered for funding. She agreed that the Israeli mindset is backward in this realm. She warned that the status quo isn't likely to change in the near future: "Ten years from now, you'll be precisely the same activists you are today". And that only enormous, persistent efforts will effect meaningful change.
She told us how surprised she was to observe children with disabilities in depressed neighborhoods in a recent visit to the Philippines. Ironically, because of poverty and the resultant dearth of separate programs for children with disabilities, such children live amidst their families and neighbors who accept and include them seamlessly.
She related an exchange she'd had with one mother who refused to allow doctors to perform cataract surgery on her son with severe disabilities because of the risk posed by the general anesthetic he would need. "I just couldn't bear to lose him", she explained.
Why then, I asked, in our far more advanced, enlightened and affluent society, do parents willingly abandon their children to strangers?
We were all, including the expert in the room, stumped.
But rather than harp on that conundrum, she is by-passing negative public opinion and forging ahead to win funding for her relatively un-publicized programs. They will ensconce people with severe disabilities either with their families or in small group-homes in the midst of the general community.
She is convinced that parents will only consider such Aleh-alternatives for their children if they see with their own eyes that it is possible.
I, on the other hand, believe that reading about those alternatives - far more feasible for most parents than actually seeing it - can win their hearts and minds too. Prose is potent.
Moreover, the plethora of self-promotion that the Aleh network of large, closed institutions spews remains unchallenged. This lack of counter-publicity is harmful. It entrenches the isolation, discrimination and exclusion that are the plight of people with severe disabilities in Israel.
The woman we met with promised us that she would present our Chaya as a candidate for a pilot project which would fund her therapies and care at home. We are anxiously awaiting word as to whether she's been accepted.