Inclusion, peer modeling, these are the sacred cows of disability. Far be it from me to slaughter something so holy, but I gotta speak my mind here. Throughout Nat’s school years, it seems like all I wanted was for him to be in the Promised Land of Brookline Public Schools’ hallowed halls. But he never was. There was never a good enough, small enough, well-trained enough classroom for him there. But still, inclusion is what almost all we autism parents wanted, and still want. Everyone, from your support group to your neurologist–the high priest of autism professionals–tells you that Inclusion is Best. Thou shalt have Normal Role Models; this is the First Commandment of Autism Treatment.
Sorry about the extended metaphor and capital letters. But this is how it all appears to me. Inclusion has with it the crushing weight of a command, a guilt-laden should. Why is it so important? Because the focus of the world is generally to herd us into the corral we call modern society, or the real world. Some call this mentality “Ableism,” whereby we use Normal, or the usual, or the most common modes to be our standard.
I’m not going to debate that one, either. I do live in this real world, after all. But I also live in the world of autism issues, and I understand deeply and harshly how those real world demands can work against some of us. You who are not autistic, or related to one, do you know how it feels to live your life against the tide? Where struggle and feeling wrong are your norm?
As Nat’s mother, I am so tired of the hierarchy of brains. If everyone needs to be with normal or at least higher-functioning role models, who will want to be with guys like Nat? I’ll still never forget the time I asked one mom of an Aspie if her boy could have a playdate with Nat. I’ll call this mom Betsy — that’s her real name, after all –Betsy said to me: “I just don’t know what Sam would get out of a playdate with Nat.”
Ouch. No wonder so much of the world back then looked like closed doors. I am pretty sure it still does, to so many younger autism parents out there. And older ones. I hear from my advocate friend how whenever he is trying to put together a group home, there is always a parent who insists that at least some of the other roommates are higher functioning than her son, so that he can learn from his peers. After all, what would he get out of someone lower functioning (read: like Nat).
What, indeed? My feeling here is, how can you “get” something out of someone if you’re sure you have nothing to give? If you feel that your child is only having a worthwhile experience if he is absorbent, how will he ever learn to shine on his own? How do you even really know that there is nothing to gain from being with someone who isn’t overtly communicative?
I think many people delight in Nat’s company. Nat is so different from the average bear, he forces us to take notice. You watch Nat and suddenly you look at social mores, conversation, personal space in a very different light.
I have no doubt that Nat gets a lot out of his current roommates, even if they are categorized by some as low-functioning –as is Nat. They smile, they have fun. Nat also went to a private, non-inclusive autism school. I used to worry so much about the lack of ”peers.” And all the while, Nat was learning how to communicate, how to work in a group, how to be an employee, how to take care of himself, his personal needs, how to understand money, holidays, reading, colors, counting…must I qualify all that is Nat?
No. Because you can’t qualify human beings. Some do not count more than others. If we’re doing it right, always growing, learning, becoming better, then it’s not the guy with the most toys who wins. It’s the guy who can enjoy himself most of the time, and bring joy to those around him.