Vaccines don’t cause autism, that’s true, but what’s the underlying concern about autism. Why is it something to be afraid of?
It wasn’t until I was driving home from class one day and was listening to C-SPAN radio. I was in my mid-20s and living in Washington, DC. This would seem weird anywhere else in America, but in DC it’s perfectly normal. The panel discussion being broadcast was teens and adults with autism and how federal funding could better support them. As the show closed, the moderator asked if anyone on the panel felt a vaccine had caused their autism.
One teen panelist spoke up, “no, but it hurts that you would ask that question.”
The moderator’s tone softened, he apologized and asked why. I’m going to paraphrase the boy’s response because it has been several years and for the life of me I have not been able to find a transcript of this event anywhere, which has driven me to madness. If anyone from C-SPAN reads this and knows the talk I’m referring to, please send me a transcript! The panelist’s response was incredibly moving and I wish I could give him credit for it and do his response justice.
As I recall his response was, “because it makes me feel like I’m damaged or broken, when I’m not. I was born this way. My brain just works differently than most other people’s. When people talk about vaccines and autism it makes me feel like I’m not a person but a ‘bad result.’ It reminds me that no one wants a kid like me and parents will risk their kid’s lives and everyone else’s just to make sure their kid doesn’t turn out like me.”
[image description: Box that reads “Blogging Against Disablism”. Box is lined in black with multi-colored tiles with various “person” symbols in a variety of colors. The person symbol most closely resembles that of the man in the symbol for “men’s restroom”. The only exception is that the third image down and second to the left is the symbol for a wheelchair or the standard “disabled” placard symbol.]
Today is May 1st, and it’s Blogging Against Disablism day. For those of you unaware, in the UK, what we know as ableism (or discrimination against a disabled person) is often called disablism. You can learn a little bit about what this day is about by going here.
So I’ve started a few posts on this before, but have never really hit publish. I’ve been thinking about how sometimes it’s not the big horrific gestures of discrimination against disabled people that are the most prevalent. Yes, we will often react in shock or horror at the horrendous things that abled people do to disabled people. And we should! These things are horrible. Making a disabled person crawl off a plane because of lack of accommodations is horrible. It’s disturbing. We should be disturbed.
Today, though, I’m going to talk about how sometimes it’s the subtle things, the things that people just don’t think about if they’re not disabled that are sometimes the most troubling. These are the things that just slip people’s minds, or they’re not aware, or it just doesn’t come up because they don’t realize or they don’t know. Or they “forget”.
I am in a choir right now. It’s part of a larger arts organization that has various components – music, theater, dance, etc. They even have a choir just for people who are in the early stages of dementia. It’s a decent organization, and a huge part is service to the community. The founder and head of the organization has told us that he’s focused on making everything accessible to everyone, and I don’t doubt his intent. Honestly, I think he is just completely clueless (though it is of course possible that he’s all talk and no action).
The price of being in this choir is $100 per season (there’s a fall and a spring season, and the summer session is $60 per choir). That is inaccessible to a lot of people, disabled and not, but especially disabled people who tend to be unemployed and underemployed.
The director does video announcements. They are not captioned.
I have been on stage now six times, and next week it will be eight times. I have seen wheelchair accessible seating. I have never seen an ASL interpreter.
I have yet to be in a show or see a show which didn’t use some form of flashing lights. Epileptic patrons exist.
I attended a show in a new (to me) place that I’d not been before. I was directed by someone in a very dark environment, and when I misunderstood the directions because low light + hearing/auditory issues + directional fail as a result of executive functioning issues maybe (or maybe dyspraxia related), a man yelled at me. I later learned he was the producer of the show. It was humiliating.
We have performed for a local recreational center for developmentally disabled teenagers and young adults, and one of the regulars has expressed interest in joining us. He’s been met with a pat on the head and a “ha, how cute” and for a long time I didn’t understand what was so “adorable” about a 20-21 year old wanting to join a choir. It isn’t wrong. It isn’t funny. He is more than qualified because this choir isn’t an audition choir. But it’s because he’s autistic. Cool. So am I. I know I “pass” better. That’s a privilege in that my membership in this choir doesn’t get questioned, but his does.
Subtle ableism also comes in at work. It comes in the form of an administrator reorganizing certain things in my workspace at the busiest time in my day.
It comes in the form of a teacher talking about autism as if she knows anything about it, and promoting ideas of what caused such an “epidemic” instead of being kind and compassionate, knowing at least three of her students are autistic (and in earshot). I know that has to do with the presumption of incompetence as well as the lack of understanding of how diagnosis has changed throughout the years.
It comes in the form of not being told the rules and then being scolded for breaking them. It comes in the form of being expected to just go with the flow when administration expects me to be in three places at once.
It comes in the form of trying to avoid a meltdown and being dismissed and then actually having a meltdown because of lack of accommodations.
It comes in the form of trying to make the decision between looking incompetent because you don’t disclose your disabilities or being given a pitying look or treated like a child when you do disclose your disability.
It’s asking for things to be written down and still receiving only verbal instructions.
It’s asking for things to be done the same way every day, and the anxiety that comes when things aren’t done the way you’ve repeatedly asked them to be done. /Stop rearranging my workplace!/
It’s every presumably passive aggressive action that you’re hoping isn’t an indication that you’re doing a terrible job.
It’s no one being direct with you. It’s the complete lack of communication of anything important.
It’s the fear that they’ll find some ridiculous reason to fire you, so you can’t really fight against the inherent ableism that you’re being fired for being disabled.
Then again, maybe it isn’t all that subtle.