I see that one of my favorite autism writers Michael Carley is at it again
Carley, an anti-cure member of the neurodiversity movement, is best known for his statements that Autistics universally don't want a cure in his book Autism from the Inside Out, also opposing a cure on an NPR show and then on a subsequent NPR program stated that he didn't want Asperger's eliminated as a DSM diagnosis because if he were called autistic that means he'd be lumped in with "head bangers" and "diaper wearers". He was one of the leaders of circulating a petition to not have AS removed from the DSM which did not succeed.
Carley is now topping himself in his most recent post on Suzanne Wright's death. Even posthumously, he seems to want to disparage the woman who cofounded the organization that he hates so much rather than expressing condolences for her untimely demise. Nowhere does he express sympathy for this woman who died of cancer before reaching her 70th birthday. Though I've disagreed with Autism speaks on many issues, I still expressed sadness at Ms. Wright's passing.
Carley starts out his piece with braggadocio about how he started GRASP and how large it is and how in 2003 no one would think that autistics would be this capable:
As most of my readers know, I founded GRASP in 2003. GRASP was the
world’s largest membership organization for adults on the spectrum.
Back then, even just the thought of such an organization (‘There are adults on the spectrum? They want to be thought of as capable? And they can run their own organizations?”) was taking off…until 2005 when the behemoth called “Autism Speaks” entered the scene.
I have news for Mr. Carley, Jerry Newport, myself, and others started AGUA (Adult Gathering United Autistic) back in 1993, ten years before he started GRASP and probably about seven years before Carley had even heard of autism. It's still in existence 23 years later. We were probably the first adults to start an organization like that, though Jim Sinclair's ANI (Autism Network International) may have started around the same time. (you also missed that Mike, if you happen to read this).
Carley continues, blaming parents of lower functioning children for internet flame wars:
Now back then, families of significantly-challenged spectrumites somehow
felt justified in lashing out at those on the end of the spectrum that
were better able to mirror greater society—those of us they bitterly
referred to as “higher functioning.
Neurodiversity has a history of almost always being the aggressors in these debates, equating parents they disagreed with as Nazis as Martjin Dekker did, equating them with the KKK as Noah Britton and bloggers Kowalski and Turner did. And suggesting parents don't know what's best or will do things out of convenience rather than love for their children as John Elder Robison has. With the exception of John Best and Lenny Schaefer, no parent of an autistic children has leveled harsh unprovoked rhetoric against those on the other side. Harold Doherty and autism's jabberwocky MJ refuted neurodiversity, but always with tempered rhetoric. He just wants to lash out at a few parents who may not have turned the other cheek in internet flame wars that he and other members of ND started.
Rightly or not, Suzanne believed that her toddler grandson, who also
suffered from stomach pain, was crying out for her to go to war for him.
So to war she went; never wavering, never
Carley conveniently forgets the articles of understanding discussion he had with Allison Tepper Singer who at the time worked for autism speaks. Not to mention he is not omniscient and can't possibly know the intentions of ms. wright or her grandson.
On our side of the ideological border, where the voices of acceptance,
and education lay, people like Ari Ne’eman and myself were given
enormous faith, and respect by our constituencies. But we were not loved
anywhere near the way Suzanne was loved
One possible explanation that did not occur to Carley was that though Suzanne Wright often espoused harsh rhetoric to explain what a horrible disability autism was and that neurodiversity found that offensive, she never insulted people far more disabled (assuming Carley's disabled at all) by stating they did not want to be lumped in with headbangers and diaper wearers and stating that people who supported autism speaks were morally complicit with murder as Ne'eman did.
Bob and Suzanne had terrible, perhaps even manipulative, opportunistic
advisors when they started Autism Speaks, and that is why they got off
on such a terrible foot (though the fact that they made this regretful
course irreversible, lies on them).
Yeah, right, that's why Autism Speaks has raised tens of millions of dollars and is the best known private funder of autism research (even if Simons is larger they are less well known) or if Carley means they got off on a terrible foot in that they used harsh rhetoric that neurodiversity did not like, then somehow I don't think that's true.
Carley then makes personal statements about Ms. Wright's life, about her being a policeman's daughter and making analyses of their stable marriage of decades, since Carley's first marriage did not work out and he was able to have a second whereas most autistics, myself included, will have none. (I won't paste Carley's remarks here)
Autism is not life or death.
Yeah that's why autistic people have a life expectancy 18 years lower on average than nonautistics, though Carley is functional enough so that it probably won't affect his longevity.
Carley makes statements about Ms. Wright's working class socioeconomic background, trying to claim that those qualities made her some sort of gutter fighter and that is the reason that neurodiversity has not done as well as autism speaks or against them as they could had Ms. Wright had been born into wealth. He encourages neurodiversity proponents to model Ms. Wright's sterling qualities to provoke more flame wars against parents who want to help their autistic children live better lives.
I believe using someone's death as a demagogic attempt to incite more inflammatory rhetoric from neurodiversity and to bait people into starting more flame wars and fighting parents of autistic children who want a better life for their kids is in extremely poor taste.
Maybe I should not have written this blog post but Carley kind of makes my blood boil.