[I have been blessed with a guest post by Corbett O’Toole, longtime activist and kickass good writer. ]
My life and disability activism entwined since my early childhood with polio. I got the good, bad and ugly of the 1950s Poster Child years.** I got to be the “problem” at my public school (they threw me out after kindergarten because they said my climbing the school stairs would be a ‘liability’), and then an “inspiration” at my Catholic school as the only person with a visible disability (where I climbed 2 flights of stairs everyday).
After I graduated from college, I moved to Berkeley, California with a friend and fell into the Disability Rights Movement.*** We made history (well I just followed along and did what I was told (mostly)). We got curb cuts on city sidewalks, stopped inaccessible public buses with ADAPT, even shut down HEW director offices in the 1977 Section 504 sit-in. I saw lots of folks come to Berkeley and then start their own dreams. It was a time of action (and a whole lot of sex, drugs and rock and roll but that’s another blog).
But by the mid-1980s a lot of disability activism disappeared. We went mainstream and many folks saw our organizations as service providers not activist centers. And we started to narrow who was included in “disabled”. When the first generation of AIDS folks came to our centers, we gave them minimum services (and some places just turned them away). When the hemophiliac folks started dying from tainted blood, we acted like they were not us and turned away. Little by little our public face became more about getting public acceptance for specific groups of disabled people (i.e. “us”) and less about disability justice.****
I continued to participate in disability rights work but increasingly I was on the margins – working on queer disabled issues, building bridges with other marginalized crip folks like disabled people of color. We were not being invited to the official disability tables (not even as token speakers). Often it felt like the days of serious activism – in your face, on the streets – had passed.
Then I met the Autistic women. They blew my mind with their honesty, compassion and stunning intellect. Have you read some of their blogs? I did. They name injustice. They call for action. They help each other out. They prize kindness. And they are over-the-top smart.
And for their efforts, they are routinely derided, receive hate mail, and are largely ignored (and often shunned) by people in other disability communities.
Here are some of the things I learned from Autistic women (and a few men). Remember these are folks who are usually excluded from disabled and nondisabled communities; their disability-related needs are ignored; they have no money (or jobs) – yet – they, in my opinion, are leading the way towards disability justice.
Every week there is a news report of an autistic child or adult who was murdered (or nearly murdered) by someone close to them. In response to the latest one, Alyssa called for a new blog to respond. Within an hour, a group of Autistics created “Voices for Justice” – a place to fight the public complacency about these murders.
Nearly all the press coverage is ‘explaining’ why the murderer ‘needed’ to kill the disabled person who was a ‘burden’. There’s been hardly a ripple from the other disability communities – except for the National Council on Disability – even though this happens with lots of non-autistic disabled folks too. Here is a great response from Beth Ryan, a parent of an autistic kid.
TAKE CARE OF EACH OTHER
The Autistics I know and follow online acknowledge that there is a lot of diversity among folks so they encourage people to ask for help as they need. They support each other and teach each other successful life survival skills. They also reach out to parents of autistic children. Elizabeth (Ibby) Grace has a blog just to answer questions from parents.
They created systems to communicate nonverbally. My favorite is for public spaces like conferences where people use “Interaction badges.” Kassianne explains it best. Using red, yellow, and green pieces of colored paper we indicate our social availability. When I am open to social interaction I display my green paper. If I am feeling less social then I show yellow. If I am out of juice and need to recharge, I show red.
TELL THE TRUTH
Most of the non-Autistic disabled folks that I know pretend that their disability doesn’t really impact them all that much. Oh yeah, we complain about our stuff when it’s breaks our patterns – like when a wheelchair breaks – but we rarely talk about what works and doesn’t work everyday for our bodies/minds.
But the Autistic women do talk about this in a much more public way. Someone might blog about how they can either get work done or clean because they don’t have enough energy for both (I can totally relate to this). They even created a blog for all the stuff even they don’t like to discuss publicly to help parents of autistic children get some insight, support and strategies.
They are fighting back against ignorance (“autism = inability to feel empathy”), abuse (electroshocking of young children for “education”) and active annihilation (the murders mentioned above and public “education” campaigns that urge people to “prevent autism before it steals another child”). They challenge the methods and messages of organizations that want to “eliminate autism” (as if it was an scratchy coat) and spread misinformation.
WHY YOU SHOULD TOO
It took me a while to find a bridge into the Autistic world. Autistic lawyer Shain Neumeier got me started and university professor and Autistic Elizabeth (Ibby) Grace brought me in. I’m writing this post (THANK YOU AMY) because the kick-ass, fight-back, David-and-Goliath-work these Autistic folks are doing is amazing and needs your support. They are an incredibly literate bunch and an easy way to find them is through their writings. It will be well worth your time. Here’s a taste:
Alyssa Z is a triple major college student (math, engineering and Chinese) who writes Yes, That Too.
Elizabeth (Ibby) Grace is a queer Autistic married mother of two who writes two blogs: Tiny Grace Notes AKA Ask an Autistic and NeuroQueer.
Autism Women’s Network has lots of fabulous writers.
And some great parent blogs:
Brenda Rothman writes Mama Be Good.
Ariane Zurcher writes Emma’s Hope Book.
* I figure that since this is Amy’s blog, I need to follow her protocol and put in as many *footnotes as possible. I think her record is 5 – I’m hoping to break it. Back on topic: “Autistic” is the preferred term by many autistic activists.
** In the 1950s, and for a long time after, children with disabilities were traipsed out like dogs at a Kennel Club show to raise money for organizations run by (and often for) nondisabled people who said they were “helping the handicapped”. Neither we, nor our families, received any compensation for our ‘performance’.
*** You can read about this history at the Disability Rights and Independent Living Movement Oral Histories.
**** Before you start yelling at me (well, really at Amy since this is her space), I acknowledge that lots of good legislative changes happened because of our ability to be more effective and mainstream. Lots of college kids got support. But this blog is about activism and not mainstream stuff.
Like it? Hate it? Let me know!