I was diagnosed with a hearing loss at age 16, in 1995, when someone could finally afford to take me to an audiologist. When I was told I would probably lose more hearing and might become completely deaf at some point, I decided I wanted to learn sign language. At that time I didn’t know any Deaf people or know anything about Deaf culture except for what I had seen on Sesame Street as a kid. Learning sign language just seemed like the practical thing for me to do. I looked around and found out that a local church offered free classes. The instructor was hearing but was an adult child of Deaf parents. What I most remember about that first class was when she asked how many of us were there because we had Deaf children. One woman raised her hand. The instructor praised her over and over for learning to communicate with her child and began talking about how statistically so many parents of Deaf children don’t do that and force their kids to learn to orally communicate instead. I broke down crying and had to walk outside to compose myself because I wanted to die just thinking about that. I was so upset at the thought that parents would force their kids who can’t hear to try to verbally talk and not be willing to learn to sign to communicate with their child. I couldn’t understand why.
I thought about my elementary school years of being in speech therapy, which I was forced by the school to attend because they decided I had a speech problem but somehow didn’t pick up on the fact that my speech problem was caused by me not being able to hear properly. Speech therapy for me felt like torture and resulted in so many meltdowns that even though no one had diagnosed me as autistic, the speech therapist eventually called a meeting with my mother and the principal to discuss the fact that I was behaving like I was “emotionally disturbed” and making people uncomfortable. My mom somehow got me out of speech therapy not because she didn’t want me to be treated like that, but because she said she couldn’t afford to have to miss work for school meetings and was afraid they would end up reporting her to someone who would take me away from her.
I was diagnosed as autistic at age 30. I’m both unhappy and happy about that. In a way, I wish I had known sooner that I was autistic because maybe I would have felt less shitty about myself for the autistic things I did all my life. But also, I’ve read pages of other autistic people my age who were diagnosed as kids and were tortured with abusive therapies for years and I think nah I’m good. I don’t think I could have survived my childhood being abused any more than I already was. But being diagnosed later, I found myself sort of reliving that experience of when I took my first sign language class.
At age 30, I didn’t know anything about autistic culture and didn’t know very many autistic adults. I came online to try to make friends and felt like I was having flashbacks of my experience at age 16 when I first learned that there are parents who would rather force their kids who can’t hear to try to speak orally to fit in with society than learn to communicate with their kids in a way that their kids were capable of doing. Only it wasn’t 1995 anymore. Now there’s youtube and facebook and other places for people to record videos of their kids’ meltdowns for the whole world to see. There are also communication devices that kids like me wouldn’t have been able to afford. The one thing that hasn’t seemed to change is how much parents want their kids to try to “fit in” and function in ways that are just never going to happen or are going to be super traumatizing to the kids. I understand why more now than I did at age 16, but it still makes me want to cry a lot of the time.
I’ve seen a lot of parents of autistic children post things like “I’m sad that I might never hear my child say they love me” or “I was so happy when my child finally learned to talk so they could say they love me.” I can’t really put into words how upsetting that is to me. I can’t imagine how their child might feel to read that someday. It’s upsetting to me that there are still people in 2018 who don’t think other communication is just as valid as speaking.
Ableism sucks. People shouldn’t be made to feel like they’re broken because they can’t do something the way society wants them to do it. A lot of the autism awareness and acceptance things I read feel like what they’re saying is “Let’s make the world be able to better recognize that you’re broken so we can fix you faster” or “I love my children even though I think they’re broken. We’re working on fixing them every day, and it’s so hard, but I love them so much.” And the world praises the people who say these things while telling the rest of us to shut up, because we are the broken ones who couldn’t possibly understand what those parents go through to raise broken people like us. Maybe that’s not what they mean, but that’s what it sounds like. And when you grow up hearing that over and over, you’re being trained to believe it’s true. So much so that even at age 38, I’m not sure I’ll ever unlearn all the internalized ableism I’ve been taught by a society that was “only trying to help.”
Every year since I’ve been on facebook I’ve had people ask me why I don’t post more about awareness and acceptance. So here you go. I’m guessing this isn’t what most people want to read, because it doesn’t make anybody feel good, but this is all I have for today.