Monday, November 18, 2013

Disability is Not War. The Disabled are not Missing.

Autism Speaks is a highly successful and controversial autism awareness group. Here's the critique from the feminist website "Tiger Beatdown" that made me aware of the problems first. I've tried to spread awareness of these issues ever since, but I often see celebrities, thinking they are helping, supporting Autism Speaks. To me, they are like the Komen foundation, superficially good, but in some ways contributing to the broader problems.

Here's the quick summary: Many people with autism in fact can speak and speak well and self-advocate. None of them, not one, is on the Autism Speaks board. So it's really about people with autism being spoken for by neurotypical people. This is not agency. This is not controlling their own representation. And it's a problem.

Last week, Autism Speaks announced their "call to action" with a blogpost by one of the co-founders, Suzanne Wright. It's kind of terrible.

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.
So here we open with autism = missing, vanished, kidnapped, and requiring military response. But people with autism are not missing - they are living with us, often in increasingly inclusive environments, and we have lots more work to do.

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 son, as readers know, has Down Syndrome. He has snuck out of the house (both at home and out of town) twice, both times making it a way down the alley or the road before I caught him. It's stressful. Many kids with autism are more prone to running than Nico. Nico was actually awake this morning for who knows how long! He was sitting in the living room listening to music when we came downstairs, happy, but free to roam the house. It's not great.

But we are living.

In many ways, Down syndrome is easier, emotionally, than autism, but I know hundreds of families with a family member that has autism, it's often stressful, it's often hard, and these families need our support. But they are all alive!

The idea that families with disability are somehow cursed in many ways leads to the kind of shame/seclusion spiral that I do see happen. We go out in public, our kids act atypically, we feel ashamed, and we need to get out of this cycle. But we are getting out of it. Things are getting better. And the pathway is through dialogue, not war metaphors. And just to illustrate the getting better parts, here's a picture from Halloween with our very own Batkid (and his sister, Superkid). 

Moreover, this language of crisis and war evokes, for me, the even worse language of disease and cure promulgated by Jenny McCarthy and her charity (and their allies), in which people with disabilities are diseased needing cures, not amelioration, not inclusion, not accommodation.

Fortunately, many of the professionals in the disability world get it. Peter Burns, CEO of the ARC, wrote a fantastic response to Suzanne Wright's "call to action." Here's a long excerpt, with all emphasis mine.

Back in 1962, President Kennedy’s Panel on Mental Retardation* called for our country to “combat” mental retardation, “[exploring] the possibilities and pathways to prevent and cure mental retardation.”  Here we are, 50 years of progress later, and your words connote the same sense that we are at war, suggesting that given the prevalence of autism we should call out the “Army, Navy, Air Force and Marines.”

Over the years, though, we have learned that war is no longer a useful metaphor to invoke and apply in the disability community.  People with autism, or for that matter other developmental disabilities, are not victims of the predations of some evil actor, nor are their mothers, fathers, sisters and brothers.  Instead, we appreciate, as stated in the Developmental Disabilities Act, that “disability is a natural part of the human experience.”

Unfortunately, your description of children with autism and their families is polarizing and divisive, creating rifts within a community that can ill afford it in these perilous times.  Characterizing people with autism and their families as victims suffering from a dreaded affliction ignores the diversity of the community of people with autism, as well as their creativity, perseverance, adaptability, resilience, and overall beauty of their human spirit.   It belittles the many who, rather than seeking to be cured, are striving for their human rights to be accepted and respected. It is far from reality for many people with autism whom I know and who are involved in our work.  All are deserving of dignity and respect.

Certainly, it is true that many individuals on the spectrum, and their families, face serious challenges on a daily basis.  The current system of social insurance and social services and supports fall well short of meeting the needs of too many who are in need of assistance.  To confront this reality and achieve progress on behalf of and with people with intellectual and developmental disabilities, including autism, the only successful path forward is one which unites, rather than divides.  We all must work together.
[cut]
Now is the time to come together – people with and without disabilities, including autism – to determine where we want to be tomorrow, next year and 50 years from now.  The rhetoric of 50 years ago has no place in today’s discourse.
This is so clearly worded - history, discourse, and what kinds of actions we need to take. The ARC, an organization with the history of our perceptions of disability bound to its name with the vanishing r-word, is definitely speaking for me on this one.

I hope Autism Speaks eventually learns to listen, to pause, to reflect, and to join in movements for inclusion, not war.




3 comments:

Laura said...

I can't say for certain of course but I don't think you can claim that one disability is easier or harder. Both Down Syndrome and Autism seem to have a large ability spectrum add to that the great variety of families, their support systems, coping mechanisms and personalities and I think there is too much variation to make such clams. I don't have a child with either disability but I do think about how the things I find challenging parenting my child would not necessarily be the same thing another parent would find difficult. This is even true with my husband and I we do not find all the same behaviors etc. challenging.

David Perry said...

Laura - Thank you for this. You are absolutely correct and I genuinely appreciate comments with thoughtful critiques.

I think I was in a defensive crouch, writing wise, so that parents of people with autism wouldn't accuse me of lacking authority to speak about their situations. I should just get out of that crouch as we all know it's a question of generalizing.

There is, though, some data that was also on my mind. Primary caregivers of people with autism can have stress levels comparable to combat soldiers (http://www.disabilityscoop.com/2009/11/10/autism-moms-stress/) - there go the war metaphors again! But still, I don't know comparable research for parents of kids with DS. But maybe that's a myth too. I know the autism divorce rate stat was recently debunked (http://www.webmd.com/brain/autism/news/20100519/autism-famlies-high-divorce-rate-is-a-myth).

Anyway, thanks! :)

Xap Esler said...

My company recently began doing a sort of "charity of the month" sort of thing - they do some promotion, offer donation days, info tables, etc. Currently it's Autism Speaks, and the announcement that was sent out made me...twitchy. Me being me I had trouble articulating my problems with what was said (and the bits I saw during my brief peek at website). Thank you for saying it much more eloquently, and for the links to Tiger Beatdown and the ARC.