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
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?