Identity, Politics

Invisible Disabilities

This is a painful opinion piece from this week’s New York Jewish Week. Devorah Zlochower and Rabbi Dov Linzer are luminaries in the progressive/open Orthodox world. One of them is a beloved former teacher of mine, and maybe of yours, too. The two of them write about how they have begun to withdraw from the Jewish community because of how their children with invisible disabilities have been treated (or not treated). That these particular two people feel so alienated and so angry at the Jewish establishment speaks volumes.

We are the parents of two children with what are often termed “invisible disabilities.” Invisible disabilities can include learning disabilities, autism spectrum disorders and Asperger’s syndrome, Tourette’s syndrome and other tic disorders, obsessive-compulsive disorder and other anxiety disorders, mood disorders and behavioral disorders…. More profoundly, these disabilities are invisible because these children have become invisible in our community. Synagogues do not provide Shabbat programming for children who cannot handle the standard Shabbat groups or junior congregation. Day schools do not educate many of these children, and prayer services in synagogue are not welcoming places for these families…
While there have been a number of stories in the Jewish media recently about the rare programs that do exist, more often, families like ours hear that such programs are too expensive and serve too few children to make them viable. We in turn have pulled away from the community in our search to have our children’s needs met… We have asked for help in the past, but we have been told “no” so many times that by now we feel it is futile to ask. And we are angry — angry because our children survive by our advocating for them, and advocacy is not always pretty… We can’t do it alone. We are overextended emotionally and financially. We worry every day about our children’s future. Will they be able to make a living? Will they marry? How will they manage when we are gone? And we have current worries, too. Will we be able to continue to afford the education, the therapies, and the medications that our children need?
We have been forced to accept that we will not find a place for our children in the Jewish day schools, but we can no longer tolerate that this extends to our synagogues as well. For our children, inclusion in the prayer services and programming at synagogue is a last chance to be part of the Jewish community, and they are being pushed out with both hands.

Full article here.
If even the rock stars are having such a difficult time, how much harder must it be for everyone else struggling with similar issues? Yashar koach to them for sharing their story.

7 thoughts on “Invisible Disabilities

  1. Whatever its problems, at least in my community, this is one thing that Chabad is doing right. Day school programs might vary city to city but there is a Friendship Circle in most American cities now. You guys should email them and do a writeup on the organization and how people can get involved. All sorts of people volunteer, from every spectrum of the Jewish community, because mental and physical disabilities affect so many families, and practically no one else is dealing with this.
    The most basic Friendship Circle is a volunteer program, but as those who go will tell you, it’s just the beginning. The connections you make with the participants and their families are just amazing. So many people feel like they have to hide that family member who has a problem from the community, and it causes a lot of pain. Friendship Circle makes things normal for the families, whose needs are often overlooked; it shares the responsibility and challenges of caring for someone with special needs to the whole community, at least in part.
    Friendship Circle is really expanding; they are moving into development programs, education, life cycle care. Serious professionals in the fields of mental health are coming on board, joining caretakers with decades of experience. Anyway, I couldn’t give this program justice, but I encourage you guys to seek it out and discover for yourself.

  2. Avigdor – yes and no. Friendship Circle is great, and I find my Chabad shul is generally more accepting of people with disabilities than other (more liberal) shuls I’ve been to. However (and this is a big however) I think there is still a very condescending attitude towards people with disabilities. When the rabbi sends out a call for congregants to volunteer for some kind of activity with disabled folks, he talks about their “challenges” and how hard their lives are and how terrible it is that they’re disabled and how fortunate we are that we’re not… using language that is very disempowering and pathologizing. This is VERY common in the Chabad world and in society in general, and I don’t think this is a good model for non-disabled people interacting with and serving disabled people. They could use a lesson from the disability movement about how to be inclusive in a less stigmatizing and less pathologizing way. Anyway, I know lots of people involved in Friendship Circle and it seems like a great program. I don’t mean to take away from that. I just think that doesn’t negate the condescension from much of the Orthodox world towards disabled people.

  3. Also, at the very same shuls that encourage their kids to volunteer for Friendship Circle, families whose kids have less “cute” or “convenient” disabilities (such as autism) and who dare to bring those disabled kids to shul get whispered about, blamed for their child’s disability, and ostracized.

  4. My little brother has Asperger’s and I once saw a Birthright trip designed to accept kids with autism spectrum learning disorders. I desperately wish they would offer it again, although I’ve nary seen another such trip organized (even before the economy caused the trips quotient to be sliced in half).

  5. ML: I think it’s largely that people don’t know what an inclusive community looks like because we’ve never/rarely really had models of that, not even in the secular world. It’s also partly a lack of exposure to people with disabilities, leading to discomfort at people who look funny / act “inappropriately” / are too loud / drool / etc. It’s less hostility than fear and discomfort and not knowing what to say to disabled people and/or their families. Folks really don’t know how to interact. They worry about saying/doing the wrong thing. They are uncomfortable. They don’t know how to explain it to their kids. They don’t know how to recognize a disability, instead thinking that kids like the ones mentioned in the article are just loud/rude/unruly/badly parented instead of thinking that they may have ADHD or be autistic or whatever. Despite the rising number of kids with special needs in our school systems and shuls, we seem to still have the attitude (even those of us who think we’re progressive, though we may chastise ourselves for feeling this way) that disabled people whose disabilities make us uncomfortable should really stay at home. It’s also easier to feel pity and try to do “charity” towards disabled people than to treat them like equal human beings who are empowered, who are as Hashem made them, and who have as much to offer our communities as we do (instead of just *needing help*)
    KFJ: I just read about that here

  6. This was a heartbreaking post. Thanks for sharing and bringing this to my attention. I don’t know either Devorah or Dov but I feel sorry for the position they’ve been put in. I wish there was something I could do to help. This is an awful situation to be in and I am am ashamed that they and their children and the children of others have been let down.

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