“A commission on autism has as its membership 1/35th autistic people. (That’s 2%.) And 34/35 (98%) of them met as a ‘full commission’ before the 1/35th who actually has the neurology of the people for whom they are supposedly there was even asked to join them.
On what planet is that okay?”
-Wonderful link at the bottom to the full post from Diary of a Mom
I couldn’t have said it better myself. Self representation is a fundamental right, one which every human being should be able to freely express as long as doing so does not harm anyone. The idea that autistic people are less capable or have less of a right to express themselves and represent themselves is rooted in the belief that autistic people are inherently less and incapable of benefiting the world in any way. In other words, it is rooted in ableism, which is discrimination based on the idea that non-disabled people are fundamentally superior.
Unfortunately, the inherent difficulty with increasing self representation when your self representation is discounted, ignored, and invalidated is that people are unlikely to listen to your attempts at self advocacy, because, again, they believe you know nothing and have nothing to contribute. We must address the beliefs held by society which base worth on income and a premium on assimilation if we are going to stop the discrimination against disabled individuals, especially when it comes to autism, which is a fundamental difference in how the brain operates.
And we autistic people need help from non-autistic people, as Jess does on a constant basis with her wonderful blog, because, as I pointed out, our basic right to represent ourselves and share our perspective is automatically called into question, our point of view is discounted, we are considered by most of society too broken to know anything. This is why ill informed individuals call into question whether people like me who advocate are actually autistic, no matter whether we were diagnosed by a professional after extensive testing or not, because they fundamentally believe that WE AUTISTIC PEOPLE ARE NOT CAPABLE OF ANYTHING.
I’ve seen it time and time again. Everything that I am capable of, the skills and practices I’ve learned and worked at over the years, the coping mechanisms I developed and utilized, each one is another sign to the doubtful that I can’t be autistic. But why would the presence of skills, ability, ideas, and even potentially expertise in a few areas be considered impossible for autistic people? It’s simple:
The narrative surrounding autism perpetuates the idea that we have nothing to offer the world. Our existence is seen as pointless, or even worse, nothing but burdensome to parents. And sometimes, parents murder their autistic children because of it, because the narrative of burden and uselessness that they have been told is more than they wish to carry.
These are the effects of words and attitudes, in addition to low employment (why hire autistic people when they have no skills or way to benefit the business?) , lackluster education (why bother educating autistic people when they’re never going to do anything with it anyways?) few relationships (why date or be friends with autistic people when they don’t contribute anything to the relationship and don’t have emotion?) and unfortunately many more than that.
I fight stigma and misinformation every day not for me, because at this point I could give a shit less what the world thinks about me being autistic or whether it’s willing to give me a chance. I fight for the next generation of autistic people so they will not be ignored like so many have been, so they will not be disregarded like so many have been, so that they will at least have a chance to take part in the world if that’s what they choose without being treated like they’re less than human beings because of a difference in neurology.
And I hope you’ll fight alongside me, too. Because we need your help.
Diary Of A Mom post on Representation: http://adiaryofamom.com/2016/02/05/representation/