Whose community is it, anyway?
‘Why would you want your son to be with other special-needs people? Why wouldn’t you want him to live and work in the community?” said the well-meaning American disability-rights activist. I was speaking to him about creating apartments and workplaces for people like my son Danny, who is 20 and has autism. This was two years ago, and I was trying to plan for his future.
In Israel, many non-profits that serve the disabled rely on private, mostly American donors to make up for shortfalls in government funding. My encounter with this activist opened my eyes to how the “in the community” mantra has become a way to deprive people with disabilities – especially, and for me most urgently, people with autism – of services they desperately need.
As April 2, World Autism Awareness Day, rolls around again, it’s only getting worse. Executives at several Israeli special-needs organizations have told me recently that their requests for funds have been turned down by American foundations that supported them in the past, because their services don’t meet the “in the community” standard.
For people with autism in Israel, this trend exacerbates an existing crisis: There aren’t enough places for adults with autism to live and work, particularly lower-functioning adults. My son is somewhere in the middle of the function spectrum. Danny is friendly and verbal, even bilingual. He can read and write, and is a good swimmer. But it’s easier for him to talk about a cat we had that died early in George W. Bush’s first term than to tell you what he did yesterday. He loves to visit all kinds of places, but he can’t go on his own because, even though he is better at navigation than a GPS, he is so impulsive he rarely looks before he steps out into traffic.
I would love for him to live in an apartment with mainstream college students, as the activist suggested. But there are no students who would be willing or able to give Danny the 24/7 supervision he requires. And next week, when he turns 21, he will “age out” of the education system and become the responsibility of the social welfare system, which has a much lower budget for each person.
Last year, after my talk with the activist, I managed to find a place for Danny in an apartment for people with special needs, run by a wonderful Israeli organization called Shekel. They have dozens of small apartments all over Israel, for residents who need various degrees of supervision and help, as well as many workplaces and activities.
But if my son lives with other special-needs people, he isn’t “in the community.” According to the activist to whom I spoke, “the community” only exists if the people around my son do not have special needs.
Danny’s roommates have mild mental retardation – not autism – and have helped him improve his communication skills. It doesn’t bother these guys that when they ask Danny how his day was, he starts talking about our old cat. They also have their quirks – one of them collects recyclables at City Hall and tells the same story every day about saying hello to Mayor Nir Barkat – which Danny doesn’t mind, either.
How is this not a community? I would like to ask the activist.
If this attitude were just that of one misinformed person, it wouldn’t matter. But sadly, this activist represents an increasingly popular and misguided approach to disability policy that meshes perfectly with the government’s wish to spend as little as possible. The result is that the most vulnerable people, particularly those with autism, suffer the most.
Parents at Magshimim, my son’s school, who were trying to raise money from American philanthropists for a small residence for their low-functioning, non-verbal adult children with autism came to me, bewildered, when these potential donors told them what they wanted to create was akin to “apartheid.” I crafted a reply with them, explaining that their children need careful supervision. But they were told to come back with a plan for living – you guessed it – “in the community.”
Once, the default option for all children with special needs was institutionalization. No one wants to return to those days, but because parents cannot live forever and because schools will not educate forever, there need to be places for our children to live and work.
I have seen some amazing therapeutic communities for people with special needs, such as Kishorit, a kibbutz in the Western Galilee, which offers a wide array of living and work options, for members who get the supervision they need to live as independently as they can. Parents in Israel – and even from abroad – would donate a kidney to get their adult children into Kishorit, but for many making disability policy today, it would be considered isolating and unworthy of funding.
And yet, as Esther and Hugh Bergknoff, American parents who wish their special-needs son could live in a community like Kishorit, wrote in an article for the Jewish Telegraphic Agency, “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.”
The real problem with places like Kishorit and my son’s apartment is that there aren’t enough of them.
Disability activists and donors should drop by Kishorit, or an apartment like Danny’s, to get a crash course in what a real community looks like. Once these activists and philanthropists broaden their definition of community, they should support the places and services that enable people with special needs to flourish.