So, April, as it turns out, has been dubbed Autism Awareness month. I'm not going to make this post on the 1st of April, because it is definitely not an April Fools Joke.
Anyway, April, so I've learned, tends to translate in the blogosphere and mainstream media into Extra Ableism Month. Mostly in that the voices of non autistic people remain privileged over those of people with autism. For more information from folks more qualified to talk about it than me, check out this and this.
Now, I'm not autistic. I kind of fall into the caretaker-advocate-relative ect catagory, being the elder sibling of an autistic brother, and having a number of friends and acquaintances with autism. So, to keep from contributing to this ick-tastic trend, I'm not going to talk about autism, and definitely not my experiences as a sibling or whatever. I am however, going to talk about the organization which more or less dominates Autism Awareness Month: Autism Speaks.
And boy oh boy, do we have some problems here.
For those who don't know: http://www.autismspeaks.org/index.php
What seems to be the problem? Well, how about for starters, for an organization called Autism Speaks there are really....not a whole lot of autistic people speaking here. Scouring their entire website, in fact, I have failed to find a single quote from a person with autism. Every. Single. Quote. on the whole damn site is from a family member or staff member, and a disturbing number of them are things like this:
"This disorder has taken our children away. It's time to get them back."...um...what? My brother has autism. I still have a brother. Are you trying to imply that an autistic child isn't your child anymore?
"It is painful to love so much, to want something so much, and not quite get it. You want your child to get better so much you may feel some of the stages commonly associated with grieving." Because obviously finding out your family member is autistic is exactly the same thing as finding out they have terminal cancer. And again with the sentiment that an autistic child is somehow not a real child.
Oh, and the organization not only loves to make really, highly unfavorable comparisons between autism and HIV/AIDs and autism and cancer, but they seem to be sporting a bit of a eugenicist bent with this whole, while it's gotten better about this, a majority of it's funding remains geared towards finding the genetic and biological causes of autism (as opposed to family services, individual services, education programs, expanding treatment options for currently alive people ect) the goal seeming to be to develop a prenatal test. While obviously a pregnant person has the choice to abort for any reason, that this is the funding distribution of a group that claims to be there to help, it does make them seem less interested in serving autistic people and their families than in making autistic people stop existing. Is that really who should be the voice for autism here?
Is Autism Speaks doing some good things? Of course. Advocating for anti-discrimination policies, providing resources and support for parents and families to help them be good parents in a situation they weren't expecting, raising awareness ect, are all good things. But in so far as treating people with autism as people rather than as tragedies inflicted on those around them goes? Looks like they sorely need to clean up their act.
In the mean time, probably the best thing the rest of use can do is to learn more about autism from people who actually experience it and want to talk about it, and try to promote such voices being heard over the constantly heard voices of caretakers.
http://tal9000.wordpress.com/
http://quixoticautistic.blogspot.com/
http://adeepercountry.blogspot.com/
http://ballastexistenz.autistics.org/?page_id=2
http://autisticbfh.blogspot.com/
http://theasman.blogspot.com/
And, we can spend the month of April to be extra careful to point out the ableism we encounter, especially anti-autism ableism, and especially in places purpoting to be spreading 'autism awareness'.
I will start by apologizing for not including a trigger warning on my last post. The comments section of the linked article definitely has some iffy stuff going on, and there are one or two comments in the article itself that seem to be having a laugh at the expense on autistic folks. Gonna go fix that now.
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