3/29/2010

One Person Is Not the Lightning Rod That AoA and Others Make Him Out to Be: Ari Ne'eman deserves his vote (and some unrelated Nazi stuff)

Last week, I posted a blog called Ari Ne'eman Doesn't Divide the Autism Community (and added They Do That Themselves). AoA had run a letter to Obama kvetching that Ari isn't worthy. I recognize from the heated comments that last week's blogpost caused that there are many in the community who do view Ari as a lightning rod. He's not singlehandedly caused this division, although he may well represent the significant problems that people have communicating with each other.


AoA's Kim Stagliano has run a new post today on Ari's nomination being put on hold. Once again, instead of dealing with what people actually have written or said, Stagliano creates a giant strawman to set on fire. She writes: "We bristle when we're told that our children do not deserve treatments and research that could move them "up" the spectrum." Yeah, here's the problem, that's bunk, and she full well knows it is. 


And if we need any further evidence that AoA ain't about the children or the autism, you only need to look at what they posted after her piece: Heckenlively's martyr-me piece on being compared to Nazis, followed by another piece with a photo of an emaciated autistic young man in England, entitled "When You Call Us Nazis, Remember This Boy." 


I don't advocate calling the parents at Age of Autism Nazis, although they are the ones who keep bringing up Hitler and Nazis. A lot. Don't make me go through the archives and prove it because I can and I do believe I have before.


You're not Nazis. You're parents who love their children desperately and lack critical thinking skills. You're also martyrs to your cause and want lots and lots of attention.


Did you ever notice that almost none of the posts over there are about the kids themselves? About what they go through? About their accomplishments, their struggles? About positive coping methods? About helping others out? About reporting on the travesties that occur without then using it as a bully pulpit to scream it's the vaccines or teh evil chemicals? Or that people are mean to them and how autism kills and if it doesn't kill the person, then the autistic person will kill the parent?


Ari deserves his vote, whether you agree with him or not. Whether you think he should serve or not. It's chicken-shitted to get a senator to put an anonymous hold on his vote. And it's crap to say you're all for self-advocacy and then cry that the neurodiversity movement paints you as anti-autism when you're all for shutting Ari Ne'eman up.


Here is a repost of last week's blog on AoA's letter to Obama:


Age of Autism has posted a letter to Obama complaining that Ari Ne'eman's appointment to the National Council on Disability. There is no identified author to the piece.

As on many things relating to autism, Age of Autism has it wrong, yet again. This doesn't come as a great surprise to many, I'm sure. Ari Ne'eman doesn't divide the autistic community. The outcry generated against him is but a symptom of the divide between parents of autistic individuals on the internet (probably not a representative sample) who on the one hand think their child's autism, recovery/cure or not, is about themselves, the parents, and those parents who think their child's autism is primarily about the child: the child's needs come first.

I suspect that a great many parents of autistic individuals don't have much interest in what's going on in the internet world because their real world experiences leave them too busy to get involved, or that what free time they do have they find better spent elsewhere. In other words, I think the internet activism represents the personal interests and proclivities of the individuals online and skews the sample. In other words, I refuse to use the availability heuristic and draw from the internet pool and believe it represents the wider world of autism. We don't really know what most parents think of Ne'eman's appointment, and I'd bet you that most are completely unaware of it.

Ne'eman, as someone with a neurological difference, who navigates the disability world from the inside out, is well-suited to serve on the council. He is erudite and well versed in the autism world. In 2008, he was  coauthor, along with Alicia Broderick of the article "Autism as metaphor: narrative and counter-narrative," which was published in the International Journal of Inclusive Education.


Broderick and Ne'eman write:


The autism spectrum in its many variations is an ‘invisible disability’ and so we have to work to be able to explain the myriad ways in which it is experienced to those who are not autistic or who are not intimately familiar with someone who is. (p. 473)

It is ironic in some ways that parents and self-advocates should be so divided, as that they do share many goals for public policy and social change. It is the rhetoric of the autism community — as well as its upside down perception of the self-advocate narrative as secondary to the parent one — that divide the two groups. (p. 473)


By improving public education and funding for transition and adult supports, we can reduce the perceived and actual difficulties imposed upon families. (p. 473)

Ne'eman is not the cause of the divide, but he clearly represents all that the AoA parents stand against: an articulate and capable spokesperson for those with disabilities, one who stands for "improving public education and funding for transition and adult supports."

The powers that be over at AoA write: "It is an insult to our community and to the people of this nation who will bear the enormous costs of millions of children and adults with autism that a 22-year-old student has been nominated to this position."

If by "our community" they mean the anti-vaxxing militant biomedders who wish to recover their children who are empty suitcases to them, well, then yes, I suppose he is an insult to them. Ari is far more than a student, and he's certainly proven a depth to him that I am sure makes AoA's token autism self-advocate squirm. The eloquence and intellectual curiosity that Ne'eman displays is extremely mature and robust. He's worked actively to speak out for autistic individuals, to support their own advocacy. No, he's not perfect, we none of us are, and I'm not suggesting hero worship. I am stating that AoA's contention that Ari Ne'eman is unqualified is an inaccurate assessment based on a collective temper tantrum because nobody in power or in a position of informed knowledge will listen to them and take them seriously.

AoA writes, "Mr. Ne'eman opposes the mission of the country's leading autism organization, Autism Speaks, which supports efforts to prevent and cure autism." So do I, but more because they fund themselves before funding research and they offer little real help to the community from which they take so very, very much. I don't support Autism Speaks because AS has proven it isn't about autistics speaking.

For AoA to write "Mr. Ne'eman's views are extremist" is hilarious in the extreme.  AoA is a fringe element whose views are beyond extreme.

AoA writes: "Rhetoric and denial will not end the suffering."

Thankfully, we agree on something, but not in the way they intend. AoA's empty rhetoric and denial of the science showing no link between autism and vaccines and their need to pursue woo beyond all measure of rationality only propagates the suffering of autistic individuals. Seeing your children and individuals with autism as stolen away and in need of recovery furthers suffering. Putting your children through crackpot treatments increases suffering.

Sending parents of newly diagnosed children down the woo hole behind you furthers the suffering of children and parents alike.

Parents who want to recover their children at all any cost, who view them as stolen, soulless, and damaged have no business anywhere near the Council on Disability. Disabled individuals do. They can offer insight, empathy and understanding that the AoA parents will never be able to offer.
 ....


For those who are on the spectrum who oppose Ari's nomination, I understand and appreciate your perspective. He deserves his vote.


Ari Ne'eman does not divide the autism community. We were already divided before he came along. He doesn't even represent the sum of all our divisions. 


In the end, Ari Ne'eman and his place on the council isn't what this is all about. What it is about is where you stand in the community. I don't think we should be united behind one individual as if he were the messiah set to solve all things. 


We have parents who scream that the government and big pharma is out to poison an entire generation. We have parents who play the martyr to the hilt. Who make their child's autism about the parent and not about the child.


We have parents who want to understand and support their children and who think that the focus belongs on the individuals themselves, their needs, their issues, and helping them to achieve their potential. We think that positive support for families is necessary and that AoA, GenRes, TACA, and Autism Speaks are a lot of things, but they aren't about positive support or about the individuals dealing with autism and a society at large who is being propagandized to believe they are damaged goods who need to be recovered at all costs.


Age of Autism and its editors are sanctimonious and self-righteous, martyrs in search of a cause. And they'll pull whatever overly dramatic stunts they have to in order to get your sympathy. Because that's what it's about in the end: poor me. Look at what they suffer. It's not about the autistic individual or that picture of that young man wouldn't be up there right now. 

4 comments:

Squillo said...

Kim,

Agreed on most points.

I do think Heckenlively has a point about the "Downfall" thing, and as much as I found it funny, I keep wishing "our side" wouldn't use it. I know a lot of folks will disagree, but bothers me when "we" use tactics from the crackpot playbook--the fact that "they did it first/more often" doesn't excuse it.

I like a lot of the "Downfall" mashups, but I can't quite stomach them when they are as personal as this one. As much as I think Handley is a dangerous, loudmouthed idiot with a big bankroll, it leaves a bad taste in my mouth to see him equated even humorously with Hitler. I think his group and others like them are directly responsible for the deaths of children, it doesn't rise (fall?) to the level of Nazism.

Socrates said...

Nazi allusions are best reserved for Eugenicist Tendency.

I was quite shocked when on first entering the online Autism world, I came across Nazi and Genocide speckled rhetoric.

I was quickly won round by measured and mature discussion of the parallels with the Nazi's T4 programme and the prospect of genetic screening for Autism which at the time, was being heavily touted by AutSqueeks as The Answer.

Sirenity said...

Ah the great divide...
Sadly, I do not see there ever being a time when all parents and family members of all autistic persons will agree on...well... anything.
Persons that feel that autism is a disease to be cured with hbot and other unscientifically sound treatment simply shall not be able to live peacefully with the persons who feel that autism is a neurological disorder that requires adaptive teaching, tolerance and supportive attitude.
Just my opinion, for what little its worth :P
Great posts Kim!

Sadderbutwisergirl said...

*Squirms, remembering latest post including the Hitler video embed*