Wednesday, April 2, 2014

Autism Speaks, But Not For Everyone. Say No to Blue-Washing.

Here is a tl;dr - Support ASAN over Autism Speaks, Ok? If you want to know why, read on.


April is Autism Awareness Month. It's also Sexual Assault Awareness Month, a fact for which I was not aware until after I wrote yesterday's topical post. I wasn't really aware of AAM either until yesterday's tweets about it. I have issues with "Awareness" (that post is long brewing and I'll get to it one of these days) as a concept and think that we suffer from awareness-fatigue. Still, it is Autism Awareness Month. So here is a story that people not in the disability community might have missed (and people inside the Autism community, in particular, know pretty well).

Autism Speaks is the giant charity at the heart of the Autism non-profit world. They are the Susan G. Komen-sized 800 lb Gorilla in the community and one of the more successful disability non-profits out there. When a celebrity brings up an Autism charity, it's almost certainly going to be Autism Speaks. Here's a partial list, and I recently saw one of my favorite TV Chefs, Michael Symon, and a baseball announcer, Ken Rosenthal, name AS as one of their charities to support.

It's deeply controversial. It's controversial because it uses "eliminationist" rhetoric in calling for a cure. It's controversial because it doesn't actually empower people with autism to speak, but it speaks for them. It's controversial because of how it spends its money.

I focus on this blog on language and I've written about the problems with Autism Speaks before. Yes, they "light April blue" and get a lot of money as a result (blue-washing instead of pink-washing), but let's look at their language. Here's the infamous "Call to Action."
This week is the week America will fully wake up to the autism crisis.
If three million children in America one day went missing – what would we as a country do?
If three million children in America one morning fell gravely ill – what would we as a country do?
We would call out the Army, Navy, Air Force and Marines. We’d call up every member of the National Guard. We’d use every piece of equipment ever made.
We’d leave no stone unturned.
Yet we’ve for the most part lost touch with three million American children, and as a nation we’ve done nothing.
We’ve let families split up, go broke and struggle through their days and years.
No more.  Tomorrow in Washington, D.C. we will gather an unprecedented number of bipartisan officials, congressional leaders and experts in every area of autism for a three-day summit.  We will demand a national response.
Don’t our families deserve it? America has always been about its great people.
Yet, we seem to have forgotten our children - and our children are our future.
Each day across this country, those three million moms, dads and other care-takers I mentioned wake to the sounds of their son or daughter bounding through the house.  That is - if they aren’t already awake. Truth be told, many of them barely sleep—or when they do – they somehow sleep with one ear towards their child’s room—always waiting. Wondering what they will get into next. Will they try to escape? Hurt themselves? Strip off their clothes?  Climb the furniture? Raid the refrigerator?  Sometimes – the silence is worse.
These families are not living.
My response is this. Disability is not war. Autism is not an enemy to bomb. The CEO of the ARC wrote a fantastic critique, which you should read.

But reading more deeply into AS material, beyond just this release: the focus is on pity. Pity the poor families. See their struggles. Give your money. Find a cure. Eliminate Autism. As the founder of Autism Parenting Magazine writes, "The bottom line is this – I and therefore Autism Parenting Magazine as a whole will not support an organization that uses their press releases to create pity for autism families instead of knowledge of ASD."

Because families with disabilities are often struggling, but they don't pity or military metaphors. They need support, often tax-payer funded (respite care for example is always under pressure), they need reasonable accommodations, and they need inclusion based on understanding (which is where awareness might be helpful). But as Michael Berube says:

The reason all the T-shirts say ‘RACE FOR THE CURE’ is that ‘RACE FOR THE REASONABLE ACCOMMODATION’ doesn’t fit neatly on one side of the shirt.”  By which I mean, of course, that the discourse of the cure is everywhere, and the discourse of reasonable accommodation, so far as I can see, is understood only by those people who already know something about disability, US disability law, ramps, kneeling buses, in-class paraprofessionals, and job coaches.  It’s almost like a kind of sign language, spoken only by those who are already disability-literate.
Autism Speaks isn't the worst organization out there in terms of rhetoric. That privilege belongs to Operation Rescue/Autism One, the group associated with Jenny McCarthy and her ilk. I'm not linking to them and their brand of dangerous quack medicine (here's my piece on it, but science-blogger Orac is better). But the parents who feed their kids bleach to cure autism (no, really) are the extreme cases who feed off the eliminationist rhetoric of Autism Speaks. The big gorilla blue-washes the discourse, sets the pattern, and the quacks who feed off fear profit. 

And speaking of profit, where does the money go? Not to help families. 3% of their take goes to families. 25% to research. So if families are "not living," as the call to action attests, maybe they could use some help from this organization? People donate because they want to help families, but they aren't.

Finally. People with autism can speak. Some of them can speaks more articulately than I can. Why are there no people with autism on the board? I've never found a good answer to this question.

To sum up - eliminationist/alarmist/military rhetoric. Money doesn't go to families. AS speaks FOR people with autism but doesn't create room for people with autism to speak for themselves.

I see them as a fundamentally anti-inclusion charitable organization.

ASAN, on the other hand, has the great slogan - "Nothing about us without us." Go support them if you can.


5 comments:

Xxriku910xX said...

Love this, being autistic myself. I don't think we need a "cure", it's been theorized that some of the smartest people were on the autism scale. We just need to resources to properly put ourselves out there.

Walt Richmond said...

My girlfriend's daughter works a lot with autism-related groups and she has always had less than complimentary things to say about Autism Speaks.

David Perry said...

Yeah, I'm not being revolutionary or cutting edge here. These things ought to be pretty apparent, and yet they still generate the massive publicity.

David Perry said...

Darn right! Do you have other groups you like better? Do you agree ASAN is good?

Anna Davis said...

I want both - I want support systems for people with ASD's, AND I want funding pools for research - not necessarily for 'a cure' but to get some reasonable empirical evidence on the aetiology of the condition. We all need more information, just as much as we all need day to day supports - without the big quantities of quality research the situation will continue to be like bailing a leaking boat with a teacup.