Ever feel like your life is being appropriated for someone else’s agenda?
I’ve been involved in a conversation elsewhere about whether or not to vaccinate your children, and–big surprise–the conversation turned towards autism and vaccines. I kind of knew that it would be a bit of a trainwreck going in, but vaccination is important to me as a community health issue, so it was hard for me to stay out of it. As things became more and more autism related, a couple things happened, both of which struck me as being on some level fundamentally wrong.
1) As things became more and more autism-centered, I felt less and less like I should be contributing to the conversation. Let’s let that sink in for a moment–I felt out of place participating in a conversation that was partly about people like me. It’s hard for me to really pin down why that happened–maybe because I’m fairly mildly affected, maybe because I didn’t feel I’d be listened to, maybe because I didn’t want to have to drop the information that I’m on the spectrum because I didn’t think it’s truly relevant to the argument–but the fact that it happened at all bugs me.
2) A person on the other side commented that ze typically would asked people if they knew a child with autism before getting into the conversation, saying that ze wasn’t interested if you didn’t have ‘intimate knowledge’ of the condition. While I will acknowledge that this person is more familiar with it than most people, it was the term ‘intimate’ that bugged me. I’m on the spectrum–I live with it in a way more intimate than this person possibly can, and it felt like ze was appropriating an experience that isn’t truly hirs. And it struck me as one of the ways that autistic people, particularly adults, are frequently de-centralised from conversations about autism. There’s a lot of stories from the perspectives of parents and caregivers talking about the struggles they’ve dealt with, how hard it is to have a family member with autism, and I don’t want to discount that it does profoundly affect their lives. But there are far fewer stories that look at what it’s like to be autistic, and when someone does try to get inside of that experience it tends to be in a fairly clinical way, not from a perspective of personal experience. It’s largely the families of autistics who drive the conversation, making autistics themselves secondary characters to the stories of their own lives.
I also noted that the person used the word ‘child’, not ‘person’. Since the conversation tends to be driven by parents, it tends to be centered on issues about how to help children, since that’s their particular concern–sadly, this isn’t confined to the autism community but extends other disability communities as well. While there’s been some advances in developing programs to help children transition into adulthood, there really isn’t much out there once you’re past school age, and those transitional programs aren’t helpful if you’re already an adult when you get diagnosed. Being diagnosed has been helpful in connecting me to a community about people like me, and I try to contribute by relating my experiences, hoping to help improve the lives of those behind me. It doesn’t feel like much, and I often wish I could do more. It’s hard to feel too guilty about doing so little, though, because the truth is that the community offers me even less in return. Autistic children tend to get de-centralised from the conversation, but autistic adults are almost entirely invisible.
If I can’t fit in in spaces that concern people like myself, where can I belong?