The always-great Ragged Edge Online offers a critical look by Cal Montgomery at the Autism Society of America and its role as the self-annointed “Voice of Autism”. (The piece is prompted by a recent episode of the Donald Trump show “The Apprentice”, where the weekly task was to organize a charity fundraiser. One contestant ran a promotion for ASA that included, among other things, little plastic megaphones as a visual metaphor for the supposed “need” of autistic persons for someone else’s voice.) The piece links a really hard-hitting essay by “Kim”, the anonymous, autistic, author of the Web site “Getting the Truth Out“. This site - brilliantly done - is a response to “Getting the Word Out”, ASA’s “educational” and fundraising site.

Both writers criticize the ASA’s assumption that it knows best what persons with autism need, and that what it believes about them or their interests can be taken as definitive. “Kim” presents some common stereotypes of autistic persons and their behavior as understood from the outside, and then describes them in simple, factual terms as she understands her own behavior.

Nobody told me that people would approve of this posture in childhood — even find it amusing — but be horrified by it the older I got. That’s exactly what happened, though. There are pages of my medical records dedicated to understanding why I do this. They called it regression. It’s not. There’s nothing to understand. Nothing to figure out. Nothing to fix. . . .

Flapping my hands was always ‘inappropriate’ behavior. Look at this picture. Look at all of these hand-flapping pictures. I’m happy. This whole series of ‘treatments’ designed to make me look more ‘normal’ didn’t succeed in doing that, but it did succeed in instilling shame and fear. For the way I look when I’m happy. . . .

Lack of eye contact is considered a major problem. I can either look or hear, not both. . . . But appearance is prized over functionality. . . .

I wrote earlier that this site would be about exposing the ugly realities of living with autism. The ugly realities are a little different than what Getting the Word Out means when they talk about the harsh realities of being autistic. The harshest reality is that things are set up very neatly so that we have no say in what happens to us. We’re either regarded as incapable of having a say, incapable of forming a good opinion, or not autistic enough to have an opinion. Then non-autistic people continue to make the decisions to do whatever they want, to all of us.

“Kim” is quite clear that she understands she is different from other people, though she doesn’t understand why that bothers them so much. But she rejects the - not always implicit - claim of ASA and other “advocates” that that difference means she cannot speak for herself, or that the difficulties and limitations she experiences mean that what she does say is not worthy of being taken seriously.

Both “Kim” and Cal Montgomery are suspicious of advocacy groups that set themselves before the people whose interests they are supposedly advocating. Montgomery notes:

Kim says — and this resonates with me, because this is what I thought when I first saw Getting the Truth Out — “I seem to be writing about autism and I seem to be writing about my life but I’m actually writing about how power is used and who has it and disability in general and people in general and all sorts of other generalities, just in the context of something very specific-looking.” She brings up Voice of the Retarded and the Muscular Dystrophy Association having done similar campaigns; she brings up disability rights and human rights and ethics in general; she’s not talking just about herself, or just about people who are “like her”; she’s talking about anyone whom other people have the power to define.

Hence “Tiny Tim time” - the time of year that we feel extra-sorry for those not like us and want to throw them a little something to make ourselves feel better. (The ASA promoter won the competition on “The Apprentice”.)

I must admit I feel both highly challenged by the writings of Montgomery and “Kim”, and conflicted about their message.

I recognize their claim to speak for themselves, and am certain they are right in describing the offense and the danger in condescending attempts by well-meaning organizations to take that voice away from them. (Montgomery even says, in an aside, that an obnoxious couple once attempted to confiscate her dog when they found she was a non-verbal Deaf person - apparently feeling that not only made her an unfit caretaker but gave them some sort of vigilante powers.) And their rejection of the “disability” label is powerful. “Differently abled” (a term neither of them uses - I refer to the general concept, here) in some ways makes mostsense coming from persons furthest from the mainstream who still powerfully articulate their own completeness as human beings, and refuse to see themselves as needing a “cure” or wanting to be “normal”. (Montgomery is contemptuous of Christopher Reeve.)

It is so easy to feel condescendingly pitying of persons with disabilities that to have that uncompromising sense of self-worth expressed - with all the irony and anger that it naturally draws with it - and to accept it on its own terms, without judgment or defensiveness, is a difficult challenge. It brings up all the times I have allowed myself to fall into that condescending form of thinking about disability, and forces me to confront the paradoxical-seeming need to accept everyone on their own terms - not just the photogenic, the articulate, the skilled, the presentable, the expressive, or those who otherwise draw sympathy by being the way others want or expect them to be, but also the withdrawn, the quient, the angry, the unskilled, the unattractive, and all the others whose disability - or merely whose personality - makes it impossible for them to push others’ buttons the right way, but who are no less moral persons for all that.

At the same time, I do not endorse the suggestion (briefly touched on in the links above; more common elsewhere) that it is discriminatory to see avoidable disabilities as undesirable, or even to want children without certain disabilities. Reconciling the belief that persons with disabilities are as morally worthy, and in many cases as rewarding in acquaintanceship, as those without, with the belief that one would prefer oneself or one’s children not to have such a disability, requires a very careful parsing of moral values, and a careful explication of one’s reasoning in holding such a position.

Without going into the argument in detail here, I think it is possible to want full acceptance for, support of, and social opportunities for persons with autism, and also not to want to have an autistic child, or, in the case of Down syndrome, to have similar opinions and to choose to abort a fetus known to have that condition. This is an issue I want to explore in more depth when I have the time to do it justice.

In the meantime, I recommend reading the two articles above; they are very powerful.