Sunday, July 8, 2012

Disability Catch-22s

This post was first published on the AAPD intern blog.

So here are some things a lot of people don’t know about me:

About twice a month I walk in front of a moving car by accident. About twice a month I choke while drinking.

Here’s another interesting thing: when I try to talk about autism, and why I as an autistic person should have a voice in the discussion of autism, some non-autistic parents and professionals get mad at me. They say, “You’re a college student, you clearly don’t have the same kinds of problems that someone with Real Autism does. Your autism must be so mild that you are irrelevant to this conversation.” And then they start talking about what Real Autism looks like, often referencing their own children, and they’ll say things like “My kid has Real Autism that is so very real, he is unaware of dangers and might wander into the street and get hurt!” or “I worked with this little girl who had Real Autism, and she was a choking risk because she had difficulty swallowing!” And then they say “Clearly, these things never happen to you, because you can write a research paper.”

I don’t understand the ideas people have about disability sometimes.

Like, obviously not all autistic people are the same, and our disability affects us all a bit differently. But at the same time I find it frustrating that when disabled people try to advocate for ourselves, we are often immediately dismissed as “not disabled enough” just by virtue of the fact that we have opinions we want to express. This doesn’t just happen in discussions about autism – I’ve seen people with all kinds of disabilities be accused of being “not disabled enough for your opinion to count” when they start talking about their rights.

So today I was in Starbucks spitting coffee on myself and coughing, and people were asking me if I was okay and I wanted to say “I’m fine, this happens all the time,” but I couldn’t really breathe enough to talk. And what I was thinking about, as I recovered from my accidental attempt to breathe frappucino, was how angry it makes me that so many non-disabled people consider disability a moveable goalpost.

Because here’s the thing: the same person who will argue that disabled people locked up in institutions need to be there because they might walk in front of a car or choke on food or water, will then turn to me and say that even though I have these experiences fairly regularly, I'm not Really Disabled, and they can tell because I don’t live in an institution.

Can you spot the catch-22?


  1. Good blog, thank you. We are going to use the catch-22 phrase in a new CCAC blog now, inspired by you.
    Lauren for the CCAC:

  2. thank you so much for writing this.

  3. I've definitely choked on water in the last couple weeks. I probably do it less than you but you know, since when is this a competition? Water choking should not be the benchmark for who is important enough for their opinions to count.

    It's strange how when people argue that you aren't disabled enough to count (or don't that you generally don't have it bad enough to count) they so so so frequently use things that I've experienced as an example. Like even if I haven't experienced 90% of the things as someone they still end up focusing on the things I have experienced as "evidence" that I deserve to be dismissed, insulted, and so forth.