Redefining Society's Response to Disability

I wonder if most people don't get it. I don't believe that all parents with autistic children get it. I know this is an unpopular way to speak these days in autism. I'm supposed to feel compassion about how hard it is and all. I'm supposed to talk about the financial burden on everyone. Autism Speaks drives the agenda for how we think and talk about autism these days so much so that I'm afraid to use the word to describe Adam in public places. I prefer to say he has trouble talking. Because if I say autism, people will look dire, talk about his mutated proteins or that he watches too much tv, and presume things about him. The stats come out and it's the same old party-line.

I don't like parties much. Not the ones where I have to conform, where I feel uncomfortable being me. I'm getting too old not to be me. And it's not really like me not to get in there and want to answer people's questions about autism. I really do like honest questions. I must admit, however, that there are some days that I just don't think it's worth it in certain situations. With Autism Speaks the new "Goliath" and autistic people a small David (but we all know how it turns out), autistics represent such a small community, and it is difficult to be heard with such, as irony goes, NOISE.

But you see, it's not that I don't have empathy or compassion. It's just that I try to direct it wisely. A good place to start searching where to direct "help" in autism is by turning to the disability community-at-large and disability studies departments at universities world-wide. Let's take a look at my home-town university Ryerson's website to read the following paragraph on the School of Disability Studies project:

"More traditional approaches to disability focus on ways to rehabilitiate or `fix' people with disabilities. In Disability Studies, we focus on society's definition and response to disability."

The school talks about social models of disability rather than the medical model and this is where we need to go. Autism Speaks and like organizations do not go there. The Autism Acceptance Project does. It did when it sought to "redefine autism" with "The Joy of Autism: Redefining Ability and Quality of Life" event last October. Autistic people are always going there. But not many people are listening because they are being drowned out.

Many parents (we have five hundred members now at TAAProject in less than a year), seem to believe this is important.

Why? It is so because many people (we know many of them) will try and make the rights of autistic people seem ridiculous because, as they will too often tell you in fact sheets and press releases, that living with autism is really horrible. They will make the "acceptance movement" or "autism rights movement" seem like it is non existent and made up by a faction of non autistic parents or, as we hear much too often, by autistics who are not really autistic because they can think and type on a computer. They sound convincing. They talk about going bankrupt because they have to do a therapy to make their kids not autistic anymore for to not do that therapy will send them all into the autistic "abyss."

Autistics will argue they are going bankrupt because they have chosen to try and turn their kids into something they are not instead of fighting for inclusion and an empathetic society where our kids receive a good education, no matter what the disability. Our parent advocates here in Canada will frighten others that to not pay for this therapy -- autistic kids will have to live in institutions, they say -- instead of working towards a society that has just and decent living arrangements for those who will need extra assistance, and focussing on what individuals can contribute. We need to fight for a quality of life in many different types of living situations, that people with disabilities have a right to beyond daily care.

Our parent autism advocates ignore a vast array of academia, advocacy by the people who are disabled, and history. David Revielle writes in Abilities Magazine that disabled individuals have been part of changing the way we view "madness." He was part of the group that developed the documentary film Working Like Crazy in 1999. (See this link here for National Film Board link.) He teaches a course at Ryerson called "A History of Madness" with Jim Ward. He says in his article: "Jim and I are walking a trail blazed by Geoffrey Reaume. Following the publication of his book, Remeberance of Patients Past: Patient Life at the Toronto Hospital for the Insane 1870-1940, Dr. Reaume taught "Mad People's History."

Reville talks about the courses' increased popularity and how the agenda has evolved to changing the subject of disabiltiy -- to the social response. They bring in psychiatric survivors creating community by addresing their needs for employment and a decent income.

We have these resources in autism, but few people are listening. Autistics.org has posted many important articles. Michelle Dawson writes in her blog Autism Crisis and No Autistics Allowed. Joel writes in his blog, NT's Are Weird. And of course, Amanda Baggs, who is consistently accused of not being autistic. And there are many more autistic individuals who belong to self-advocacy organizations. The list is longer than I am providing here of autistic people who write books, blogs, do artwork or participate in these groups in some fashion. I do not hear of one autism society anywhere who acknowledges any of them.

It strikes me everytime that people write their bias on the page with pride. From hating something to pretending to advocate on behalf of others because "they can't speak for themsevles," prejudice against the disabled is intolerably tolerated.

I would recommend that any doubtful person turn to the many disability studies departments at their universities -- the hub where change really happens. Or, you can attend the talk Doing Disability At Work: A Symposium on July 5, 2007 which discusses how disabled people fare as learners in mainstream workplaces. Contact Ryerson for more information.