In a huge set back for autistic children and their parents US President Barack Obama has nominated Ari Ne'eman, a university student with Aspergers Disorder, for appointment to the US National Council on disabilities. Mr. Ne'eman is a staunch opponent of curing, or seeking cures for, autism.
The appointment, in addition to signaling President Obama's opposition to curing autism is bizarre in that Mr. Ne'eman does not even regard autism as a disability. As Jonathan Mitchell points out at Autism's Gadfly, Mr. Ne'eman does not even view autism disorders as disabilities having written:
We see the world in a different way than our neurotypical peers (neurotypical is a word in the autistic community meaning those of the majority neurology). This does not imply a defect, but merely a difference — one that we have just the same right to as those of a different race, nationality or religion.The belief was that anyone society labeled "disabled" could only go so far. Sadly, these misconceptions had the potential to become self-fulfilling prophecies. When the expectation is that people of a certain type can only reach so far, they are not provided with the same challenges and opportunities that educators give mainstreamed students....
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We should recognize what diversity of neurology has contributed to the human race and what it can bring to the future. Difference is not disability and someday, I hope, the world will recognize that those who think in different ways should be welcomed
Certainly difference is not a disability if you are a person with very mild Asperger's but for those persons with severe Autistic Disorder, some of whom freeze to death in snowstorms, drown in neighborhood pools, wander into traffic, bite their hands and chew their cheeks, bang their heads until bloody, starve themselves to death because of their intense aversion to many food tastes and textures or live their lives in institutional care; for many of these truly autistic persons, their difference is a disability.
For the severely autistic their difference is a disorder, not a cool way to meet a US President.
I am a Canadian with no right to pick a US President. But like many people around the world I believed in the great promise of Barack Obama.
Now I am beginning to understand why so many are starting to reel from the great disappointment with the man who said Yes We Can and now has clearly signaled to families of autistic children that No You Can't.
There will be no autism cure sought during an Obama administration. Ari Ne'eman will see to that.
autism
13 comments:
I voted for Obama and I must say I am extremely disappointed in him. Actually, I'm not too surprised that he nominated him. In my opinion, Ne'eman is basically a younger version of himself...naive, little knowledge or experience, and overhyped.
For now, I have a difference, not a disability...after I had to spend years in speech therapy and special education and struggling with mental and medical co-morbidities. I have to be in CBT. I am only "normal" with great effort.
This is hugely disappointing. Although I agree that a lot of my son's "disability" is created by society as Mr Neeman suggests, but to cast a wide umbrella of "society makes disability" over all problems faced by autistics and the entire spectrum can't be good. There needs to be a representative who understands that major change needs to occur in the educational, health and welfare systems for autistics of all ages, but also keep the debate and research for etiology and remediation open.
Just a reminder that Obama pumped $4.5 million of the stimulus bill into genetic research on autism. I know that you would rather have it gone to environmental causes, but what do you think this genetic research is for other than to set the first step towards a cure? Of cours eno cure will be sought during Obama admin, simply because four or eight years ist oo short to get anywhere close enough to that.
As for Ari's comment on autism, the way I understand "disability" is in the social model, that is, it is not medical conditions themselves that are by definition limiting, but the interaction of these conditions with an environment not created for them. I think it strange that Ari rejects the idea of autism as a disability, because in the social model, disability is not different from race or ethnicity (it is different from religion in that you can't choose disability and you can choose your religion) in the way it is looked upon: it is not the disability (or rac eor ethnicity) itself that creates the problems, but the interaction of that minority status with an environment created by and for the majority. Of course now you will argue that disability is different because disabled people, unlike racial/ethnic minority people, require special care and accommodation, but that care and accommodation is only "special" within the frame of reference created by nondisabled people that dictates which help/accommodation is and is not "normal". Because Ari is fully aware of the social model of disability, I don't see why he has to avoid the word "disability.
As a side note, if by the same challenges and opportunities Ari means to base acceptance on the condition that you can get by if just given the same challenges and opportunities as nondisabled people, I disagree indeed. This is something he might be able to, but I for one am not, and my parents worked very hard to give me the same challenges and opportunities as nondisabled people (and my not being as capable is not excusably due to blindness either because the "same challenges" mantra goes on there, too). I have no doubt your son isn't just as capable as nonautistic people his age if just given the same challenges/opportunities. However, I am not sure that is exactly what Ari means. He has told me that I misquote him based on your blog a few times, and I don't know where the original quote comes from or whether Ari may've changed his language since presumably saying this.
I'm all for celebrating diversity and accepting people's differences and all, but I can't fathom glorifying a disability that comes with life-long struggles and heartaches. There is a huge difference between disability and disability. I might be mistaken, but it seems to me that most advocates of the neurodiversity movement are not parents of severely autistic children with profound or severe cognitive disability (or difference?). Even though I don't understand, I can accept that someone doesn't want a cure for his or her child, or for him/herself, but why make it into an agenda and push it onto others who want their kids to be potty-trained or stop harming themselves. As for President Obama, I think many of his decisions stem from an effort to keep his popularity and "rock start" status.
We are lot of people round the world that know that our children with ASD can improve a lot with biomedical treatmeant.
/Inger from Sweden
Disability cannot be seen purely as a social problem. My daughter would still suffer immeasurably from her disabilities even with all of the acceptance and accommodations in the universe. I resent those who say otherwise and offer for them to spend a week at my house and watch the purely physical pain and suffering that are part and parcel of my daughter's life.
Claire, even though I cannot really imagine what a world with all possible disability accommodations would be like, I will never go so far as to say there will not be any suffering for disabled people in such a world. Then again, tha tis not what disability groups say. No-one is saying all suffering endured by disabled people is fromd isability discrimination. But then again, you probably suffer sometimes, too, and you can't blame all your suffering on social problems (like life with a disabled child, a difficult job or unemployment, etc.), either.
"As for Ari's comment on autism, the way I understand "disability" is in the social model, that is, it is not medical conditions themselves that are by definition limiting, but the interaction of these conditions with an environment not created for them."
With all due respect, Astrid, a number of words in your comment belie the social disability agenda...the line above is most clear and I will tell you, medical conditions themselves DO INDEED limit life, regardless of social scripting. I have seen this notion pervade all aspects of disability advocacy and it is extremely disheartening for those of us who have to sit back and listen to this garbage while we fight with our children's pained and damaged bodies. Governments and society want soft disability. It's easier on the eyes, the mind and the pocket book. Though you personally may have an open mind with regards to the limitations of the social model of disability, many others do not and they cause irreparable harm to our cause of treatment and cure as well as accommodation.
Disgusted. I plan on penning a letter to my Senator this afternoon.
Ari notified me that he actually does feel autism is a disability, and in fact helped pass legislation that would get it formally considered as such in the U.S. I do not know what legislation that is or what it was considered before then. In any case, it is incorrect that Ari should not be on a board on disability because he doesn't view the disability he represents as such.
@ Claire: other people embracing the social model of disability may not state it as clearly, but if you want to acknowledge discrimination against minorities, you have to acknowledge their difference to the majority, and you hav eto figh tthe mainstream perception of "normal", which requires acknowledging its existence and the existence of peopel who deviate from it. If no disabled people existed, no ableism would occur, but the same can be said of other minorities.
As for my comment on suffering, where do social model of disability advocates say that disability cannot possibly come with intrinsic suffering? Anyone familiar with, say, chronic pain conditions, epilepsy, etc., would have to acknowledge that. I've seen it a lot that people with these conditions were simply kicked off the disability track (not from ASAN by the way), but I have never seen a disability rights activist openly deny these realities.
Ari should try to remember everything he has written on the subject of autism and disabilities Astrid. He has stated that autism is just a difference not a disease or a disability in a 2006 article posted on the ASAN site.
The article, dated November 24, 2006 is titled "Difference Is Not A Disease and in it Ari Ne'eman denies that autism is a disease OR a disability JUST a difference, he states:
"Difference Is Not A Disease"
...
"We see the world in a different way than our neurotypical peers (neurotypical is a word in the autistic community meaning those of the majority neurology). This does not imply a defect, but merely a difference — one that we have just the same right to as those of a different race, nationality or religion. Due to that difference in perception, we interact socially in different ways. Yet our quirks and eccentricities should be just as legitimate as the social skills of the mainstream.
.......
"We should recognize what diversity of neurology has contributed to the human race and what it can bring to the future. Difference is not, in itself, disability; it becomes disability when it is not properly understood and accommodated. Someday, I hope the world will recognize that those who think in different ways should be welcomed.""
http://www.autisticadvocacy.org/modules/smartsection/item.php?itemid=2
I want to quote your post in my blog. It can?
And you et an account on Twitter?
Anonymous 12:22 pm feel free to quote if you wish. Hopefully in context.
My twitter address is @AutismRealityNB
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