I’m delighted to run a guest post by Jane Strauss, a Jewish photographer and writer, and the autistic parent of “five offspring who were raised in Fandom and all of whom have had various labels adjacent to or on the Autism spectrum.” She has degrees in Biology, Education, Law, and Public Administration, and also spent time in a Christian Seminary and in medical school. She is a follower of the Saul Alinsky School of Community Organizing and was an admirer of the Kibbutzim of the 1960s. Her special interests include photography, legislation, antique cars and automotive history, advocacy, theatre, cooking, feminism, and Judaic Studies. You can find her work here, here, and here.
On Segregated Sidestreaming by Jane Strauss
We’re getting to the end of Jewish Disability Awareness Month and, once again, I’ve been asked the question, “But isn’t your son happier in a (segregated, special) group for disabled people?”
Whenever anyone poses this question, I can only answer, “No. He gets bored because it is usually oriented below his interests, he generally doesn’t like the obvious infantilization of most of these groups or the underlying (which he can tell, if you cannot) condescension, and he is not happy there because we have always put him in mainstream groups with supports.”
Segregated sidestream groups are nothing other than social institutions, and are usually rooted in pity, not hospitality. Sure, they are easier, but they are generally, in my experience, even more artificial than most social constructs. Parents, only if you want your kids (no matter their “functioning level”) to live in a box and not learn to live in the world is it a benefit to segregate them or put even more artificial barriers between them and others in the world. We Jews have moved out of the shtetl (on the “liberal” side of Judaism) because living in the world was considered to provide more opportunity and to lessen conflict with others through sharing. Why, then, do well-meaning people persist in keeping those who are not physically or neurologically typical in the crip shtetl? Integrated institutions are generally held to be better than “Jim Crow,” so why the insistence on “Jim Crow” for people who are different in ways other than skin color?
Of course, if kids spend all their lives in “special programs,” they will be more comfortable there; if you do not provide opportunities for them to do otherwise, that will be their comfort level. All you supporters of the Jewish Community Relations Councils and their like: Remember the deed covenants, and how “the Jews are more comfortable with their own kind”? Same deal.
And my response to “Inclusion means giving families what they want even if it is segregated programming” is this:
If, in the past, this was the norm, how do parents know differently without education?
If mainstream programs don’t think they need to welcome all because sidestream programs exist, is this really a choice?
If children are socialized only to be in separate programs in which the “friendly people” never see them anywhere else, are we doing them any favors?
And if you work to give your so-called typical kids wings as well as roots, why don’t you insist on helping your disabled kids find their wings as well?
“If children are socialized only to be in separate programs in which the “friendly people” never see them anywhere else, are we doing them any favors?”
The word “only” is what makes me agree with this statement. I do not believe in “only’s.” I believe that individuals benefit most from a variety of experiences. Which is why I (a fellow Jewish Autistic who is homeschooling Jewish Autistic children and who likewise has degrees in Education and Law) believe that my children do benefit from certain sensory-friendly groups which happen to be designed to support Neurodiverse Kids but also directly involve Neurotypical siblings and parents. Why? because the world doesn’t usually provide us with places where people are friendly and the music and lights are turned low. I want a place like that – for my kids and for myself BECAUSE I don’t get it elsewhere. However – if that were all that my kids were exposed to I would protest. Luckily, as homeschoolers they do get to see, interact with, and be a part of the “real world” by actually living in it every day. They are not confined to desks or classrooms. The world is their classroom. So, is it so terrible that we happen to enjoy being in a comfortable place where we can make noise if we want, move around if need to, and be with friendly people once in awhile?
I can certainly agree to disagree with that. Those settings feel condescending and hence NOT comfortable to both my partner and myself, who were not brought up with the ASD label. I also believe that it is advantageous to survival to learn how to pass as nearly as possible. I find that my particular child will gravitate to a lowest common denominator, and expect to be able to behave however he wishes in ALL settings if permitted it in one. In addition, there is the larger issue: when separate groups exist it is simply easier for the main stream to decline to meet anyone halfway, and to simply, as one rabbi of a large Conservative synagogue did to us, send all the families with special needs “over there.” Whether it is sometimes comfortable for your family to use those settings begs the question of whether you want, as your children grow older, to have ONLY those settings available to you.
This ties in nicely with the social model of disability, which I feel particularly relevant to autistics since a large component of our struggles occur in the social arena. There is no amount of compensating that will alleviate the refusal of others to understand us. And while there’s certainly a need for certain ‘safe spaces’, when we stay in them there is even less pressure for other people to learn how to interact with us (not to mention less opportunity).
TPGA has linked a number of articles lately pointing towards effective interventions needing to include an autistic’s peers (which I could have told you at 10). So much of our struggles stem from others not being willing to meet us halfway, and side-streaming only moves us away from a world where we can be full participants.
I think the end result of all the special programs is unhappiness, and even less ability to function in life.
Being segregated teaches one major lesson, that will always stick with you… YOU are the oddity, the freak, the undesirable.
The only form of segregation I think is good is not really true segregation. Instead of constantly foisting our kids off on someone else (excluding certain limited things such as classes), keep your kids with you, raise them, and as you go about daily life, those trips to the store, the dr, etc, become built in socialization with a TRUE 1 on 1 ratio, a personalized individual teacher. But hey, that’s just me. I was segregated in school, in special classes for kids with a high IQ. You know those were the most hellish years of my life, and until this post, I hadn’t even realized that it truly WAS a segregation…