“They are here, autism is here”—-Virginia Bovill
October 21, 2008 by Kristina Chew, PhD
Filed under Health
Heralding an October 22nd lecture entitled “Are we ambitious enough about autism?” to be delivered by Autism Speaks co-found Bob Wright at the Treehouse charity in the UK Telegraph asks “Should we want to cure autism?”
After raising my son Charlie for these past 11 years, my answer is that (in the words of a friend) curing autism is “neither possible nor desirable.” Autism is lifelong; it’s neither something that you catch or that you can be cured from, and focusing too much on trying to cure autism can distract from the pressing realities of teaching, supporting, taking care of, and being with people who are autistic. As I wrote in a March 2007 post, Acceptance vs. Cure:
Is autism a difference, a manifestation of human diversity and variation—-or is it autism a disease that one “suffers” from? Is autism something that has always been with us, or is something completely new?
The Telegraph article quotes Treehouse founder Virginia Bovill, who is
….currently studying for a DPhil on whether the quest to prevent and cure autism is morally justified. “Where would prevention lead – to ante-natal testing and abortion?” she asks. “The thought of a world without all the people I have met with autism is not a world I would want to live in. I would rather people said: ‘They are here, autism is here – how can we help these children fulfil their potential; how can we support their parents?’”
“‘They are here, autism is here’”: I just had to reiterate that.
Do the blind suffer? the deaf? a person with any disability? What is suffering?
I don’t know anyone who is trying to cure their child, who isn’t also trying to teach them, support them, or taking care of them. This includes people who follow the DAN protocol and visit “Thoughtful House”.
If you are worried about genetic research leading to abortion, then you should be protesting against abortion itself.
I don’t know any child who would not be better off without autism.
We sometimes hear these kinds of arguments in relation to curing deafness – where advocates of “deaf culture” fear that cochlear implants and the like are a threat to their unique world.
As a parent of a child with autism, I don’t believe there is any sort of “autistic culture” – certainly not in the aggregate. And as for individuals – I would suggest the amazing people we meet who have autism would be even MORE amazing were they able to be completely engaged in our world, instead of a world of their own.
I think it is how you defind the word cure if you should it try to cure autism and as you said and I agree that there is no cure at this time if the child is born with autims. If you mean cure as into to keep a child from getting autism would that be as good as a cure. I am with mayfly that the child would better off he or she did not have autism. If you could give the mother a shot to keep her child from getting autism would that be better then letting the child get autism. I am glad to hear that charlie is doing well sence he started eating the brownies maybe all that chocolate may be doing someting we don”t know about.
Trouble is that being “better off” is also the function of the world we live in and not only of the intrinsic state of the person…
For instance, I could argue that I don’t know any colored person who would not be better off being white if that person lives in racist society.
I’m Asian American and can’t say this is a perfectly “non-racist” society and I am always glad I’m who I am.
Unspeakable Conversations
Harriet McBryde Johnson (1957 -2008)
February 16, 2003
NYTimes
I bristle at you folks declaring that you don’t know any child who wouldn’t be “better off” without autism. My son who he is, you cannot remove the autism and still have the same person. So to me, the notion of taking away the autism is taking my son away from me.
I hope some autistic adults will respond here because I’d really like to get their take on this subject.
Duncan wouldn’t be Duncan is he wasn’t autistic. It runs through him. I wouldn’t want him any other way. If his autism could be removed somehow, what would be left? No one knows. Would he still have such an eye for drawing? Would he still get such fun out of his trains and roller coaster simulator games? Would he still love to cuddle up with his big sister and watch films? Would his adorable grin and joy in life remain?
I think society can come to accept and embrace all diversity rather than say that people are better off if they look, act or think a certain, preferable way.
The bit that really got me annoyed, was when he was blathering on about what a wonderful advocate he was, I got up and said,(in the way I usually do “Mr Wright, I have been an advocate for far longer than you have”
I think Treehouse share some of the blame for inviting this disgusting self publicist into the country with his press machine, arranging convenient publicity shots entertaining and being entertained by “the great and the good”, when he has nothing but vacancy to represent. It is just as well that most autism charities in the UK, seem to share the contempt for him that our community has, you cannot come over here to the country where the worlds first autistic society was founded, and then say nothing is happening here.
He thinks he is the only show in town, well let me tell you the circus came to town and then went, it was all smoke and noise.
Unfortunately, his “show” is determining the eugenetic policy of the day. Not addressing him and interacting at some level with that understanding will just cause issues. And is it really smoke and mirrors if something actually happens in that respect?
By the way, loved the article, Regan. Thanks for posting links.
Cliff
You’re very welcome Cliff.
His show is not determining anything in the UK, because he is a Johnny come lately to the autism debate, as are autism speaks, and no matter how many times he wines and dines with the political celebs, they are only there for the publicity too, whilst the real work is being done elsewhere.
Consider this that what Bob Wright is not saying is that he had to endure the indignity of speaking on a platform alongside an autistic activist, after having had to sit through a video full of autistics speaking for themselves, and worst of all, having to endure an audience flapping for applause instead of clapping.
I do think that we in the various autistic movements in the UK, made our presence felt last night in a number of “subversive” ways.
Interesting also to see that on Tuesday although autism speaks maintained there usual presence at the All Party Parliamentary Group for Autism, Bob Wright was not there to here the reports from five years after the committee’s autism manifesto launch.
This was the outcome of work started before Autism Speaks even existed over here, and from the outset autistics have been going to those parliamentary meetings and asking questions of the politicians.
We have quite a vigorous autistic movement in the UK, and we are doing more than just protesting.
I’ll be honest, Laurentius; I don’t see anything out of the UK that would constitute a full-blown movement. Honestly don’t see it, haven’t heard it, and I’m certainly not seeing it when the UK press talks about autism. Do I think there is a constituent community of activists? Sure, and it may be far better than what we have in the U.S. But that in no way makes a progressive movement.
And I’m not saying I should see people rioting in the streets or such things. That’s not of interest. But I don’t see autistics shaping the U.K. discourse in any way, or rallying a large base of popular support to shape public policy in a significant way.
And the notion of “various autistic movements” is an interesting one. What variety in movements are you talking about? I’m not seeing a variety of seperate movements either (granted, I’m not seeing one). I’m not even seeing really divergent ideological strains in autistic advocacy at this point, and I’m taking this as a general statement.
So… I’d like a little qualification, if you would (and I suspect you’ll provide). Is there potentially work being done that might build that kind of consensus and generality needed for a movement? Perhaps there is, though I don’t have a full sense of that being in the U.S. But as to an already existing movement? I’m admittedly skeptical.
Cliff
That is very good question, and one that deserves an answer in the paper I am currently writing.
However it is one that has equally been asked of the “disability movement” and refuted before.
Whilst obviously there is a caucus of activists and a growing one at that, it is not a monolithic caucus, all bound together in one or even two organisations or perspectives.
In my travels up and down the country to this conference and that, in my communications with aspie friends back home who are not amongst the “key” activists, there is a lot of shared experience, opinions, and culture out there, adding considerable weight to the vocies of the activists. It’s not all coming out of the internet culture either, it is on the ground in pubs clubs and meeting places now.
If you did not believe autistics are shaping any discourse, ask yourself why our voices were heard at treehouse, and why the NAS is running a campaign called I exist. These things would not happen if the parents perspective were the only one that is prevailing in the UK.
What is more we are also having a greater impact through and with the wider disability movement, who have already made some headway.
At least it is not like in Canada.
@Regan, re. Harriet McBryde Johnson: zichronah librachah — may her memory be a blessing.