Monday, May 12, 2008

Some News & Regrets & an Apology

Just as soon as my spring/summer pay starts coming in I will be publishing a revised version of WFAP? The number and extent of the changes depends on cost but one change that will happen ASAP is that the Foreword will be replaced. The number of pages and the page numbers will remain the same and so will the Table of Contents. What goes in are two tributes, one for Patty Clark, a long-standing, fierce & courageous activist in Atlanta who passed away a couple of years ago. There's one short piece of her writing in the book but she was quite prolific & I invite you to go to her memorial site to read her works & understand her stature in the autistic community. http://www.pattymemorial.org/ The other tribute is to Debbie Storey, another of our autistic women heroes who is as well a martyr. Her story is utterly tragic yet galvanizing. (Here are her stories: from life & after her death. (The second link has the video clip of the BBC's coverage.) http://64.233.169.104/search?q=cache:hs2m7USvUQkJ:news.bbc.co.uk/1/hi/health/3687612.stm+debbie+storey+autism&hl=en&client=firefox-a&gl=us&strip=1;
http://www.parents4protest.co.uk/p4p/mum_feared_social_services.htm


The existing Foreword will be deleted because it constitutes one of the biggest judgment errors of my lifetime. I blew it! The book began to take shape in, as I remember, in 1999 as lots of us women autistics contributed ideas, scraps of text, whole articles & energy & thought. One of the people peripherally involved was Judy Singer, a woman who self-identifies as being on the cusp between AS & NT. When contributing editors were meeting in Boston, Singer arranged a trip to the States to coincide with our meeting in October 2001. We invited her to stay in our room at the hostel and there she wrote what is mostly in the Foreword.

While there, I asked Singer to identify one, just one, autistic trait in her makeup. If she were on the cusp surely there would be one. No! Not one! (My personal belief is there's no such thing as a cusp, that AS wiring is a toggle switch: you either experience the world autistically or you don't, no matter what array of other traits you have or how you manifest to others. It's personal because I have a hard time imagining my being that ambidextrous. No matter how close I am with dear nt friends, our wiring is clearly different.) Yet I accepted Judy's submission, even though it was a year and a half late.

I knew Singer was the founder of ASPAR, the group of children of Asperger parents seeking healing. Early on in the book's chronology I suppose I didn't take ASPAR seriously enough. Word was that anyone who said anything slightly forgiving about Asperger parents would be kicked off the list. And one of the site's favorite pieces was by a woman who told the tale of bringing a boyfriend home at Christmas, only to have him intercepted by Dad who spirited the boyfriend to the basement to view and be subject to a very long perseveration on his train set. Fair enough: "it's Dad again!" But I'd be damned if I could see the tragedy in that. If anything, it seemed to be a personal reaction based on a string of disappointments to that particular writer, that would have currency in the intimate setting of an online support group. In short, they were entitled to their safe space for sharing and venting as they wished. I was outside their scope, therefore an onlooker whose business it was
not. A similar group of children of volatile, emotionally immature dads would have resonated with me. Fair enough.

But during those years ASPAR's safe space for mutual support began to expand & permutate into a PAC (political action committee). And under Singer's direction, ASPAR ventured into militancy, an investment of force into preventing the Asperger parent from gaining child custody in cases of divorce. Now, some might say that the AS advocacy against NTs is comparable but NTs have supremacy. AS people are voiceless, powerless, at the mercy of institutions. Militancy is justifiable for us. But to militate against already marginalized, discounted, disposable persons because they are Aspers is a personal attack that defies any notion of social justice. As well, to isolate a single trait as categorically predictive of child abuse is far from the best interests of the child. This means other, more terrible qualities in a parent are ipso facto allowable by comparison.

Put in more intimate terms, I am an Asperger mother (see article in WFAP?) & so are many of the book's contributors. No question we are challenged by motherhood. No doubt we are odd. No denying we have all those traits ASPAR likes to inveigh against, but that doesn't mean we are negligent or abusive of our children. It doesn't even mean we are a royal pain in the butt to them. It's as Darcy O'Brien says, "a way of life, like any other." (My children, now in their twenties & uni students, have told me they are glad to have had an eccentric mother--rather than the conventional kind--because they were under no pressure to conform to social expectations. They could find themselves, find their way, without heavy-handed parenting. FWIW.)

Beyond this is agitation, I am told, is a demonization of Aspers. Autism is apparently, by their account, connected to many evils. Calling Hitler an Asper is manipulative rhetoric indeed. (Ted Bundy & George W Bush & Dick Cheney & other cheerful souls with blood all over them are NT.) There's something in this sort of thinking that relates to Mikita Brottman's legendary ignorant maligning.*
http://chronicle.com/free/v52/i04/04b00701.htm

How can this book possibly be associated with a point of view antithetical to everything it stands for?

I am so overwhelmed by life I've become isolated & out of every which loop. This has been especially true during a recent three-year period of workplace harassmen
t (put mildly) culminating in heart disease. Whatever lists I'm on are in digest form and almost entirely unread. I've been so preoccupied I read but hardly ever reply to emails anymore. So I deeply regret not having been more vigilant about this. Singer's piece must go.

But....what I
apologize for, not simply regret, is that I had no business publishing someone who had clearly described herself as being NT, and had made a submission a year and a half after the submission deadline! These realities excluded her article from the scope of the book. I apologize & fear that this has been detrimental to the book & to the case of women autistics. Perhaps a new edition will cut the losses somewhat.

* Mikita Brottman wrote an inflammatory and badly written article damning Aspers in academe that first appeared in the Online Chronicle of Higher Education, followed by reprints in many newspapers across the US. After you've followed the Brottman link (above), do have a look at Kathleen Seidel's marvelous deconstruction. http://neurodiversity.com/weblog/archives/54/autopsy-full-text If you are new to the neurodiversity site, do look around it while you're there. I'm sure you'll find it a stunning achievement in both range & depth.