Saturday, August 8, 2015

Things I cannot do--because I'm epileptic

Language note: If you're here from the epilepsy part of the internet, welcome. If you are just here to tell me that "you HAVE epilepsy, epilepsy doesn't have you!" or any other person first thing--don't. I choose identity first language for a reason. In this case, because yes, epilepsy *does* have me a lot of the time. I have to do a lot of life rearranging because access is miserable. Person firsting me isn't going to change that. I'd argue that person firsting is contributing to the problem, because it creates this picture that I can just leave epilepsy at home. I can't. That's the point of this post.

A partial list of things I cannot do because I am epileptic:

-I cannot go to conferences about autism, even those put on by Autistic people. "Allies" are right out. There's one--ONE--I have been to where someone hasn't been setting off seizures knowingly. One. And I was the bad guy for daring to be epileptic (please note that 30% of autistic people will have epilepsy at some point in their life).

-I do not do anything in the populated part of the city on weekend nights. There are too many cyclists with flashing lights on the front of their bikes. These are a danger to me. So are cyclists themselves, as they're so caught up in their self righteousness they'd rather threaten to kill or rape or kill and rape me than change their fucking light. "I don't care" is the least aggressive response cyclists give to being made aware that their lights endanger people.

-I can't always walk to the grocery store. See: cyclists. They managed to get between me & the grocery store twice & between me & home another twice riding about my neighborhood on World Naked Bike Ride. WNBR knows they are unsafe (because I told them). They will take no steps to allow people to be safe from them (such as publishing the route. I'd be asking to be murdered in my bed if I asked them to--shock horror--not strobe. The ADA isn't for cyclists).

-I can't go dancing. Because the ADA doesn't apply to religious dancers who think epilepsy is demons, either. That is a hill they'd choose to die on.

-I've had to sue a school because they wouldn't teach a professor to turn off a fucking light.

-I don't go places where I don't know everyone without a seizure (and me) literate person around. There's too much risk of triggers, too little risk of them giving a shit without a Real Person telling them to.

-I can't rely on first responders, so they don't count as seizure literate. Most paramedics have no fucking idea that there's more than one kind of seizure. Having a partial complex seizure & having 911 called is a great way to end up either shot or dead in restraints.

-I can't go to concerts. Not just the ones you'd think have strobe lights. Any of them. 

-I'm not going to the Bernie Sanders rally this weekend because having a partial complex seizure around someone running for office is a great way to get killed by their security, & there is no way any accessibility policy made allows for the existence of epileptics who vote.

-More and more 'attractions' are becoming inaccessible as people figure out how to make more shit strobe. Apparently Medieval Times has strobing swords. So much for authenticity.

-I don't go to movies without a non epileptic friend for similar reasons. Movies that should have warnings never do (looking at you, Mockingjay part 1. Also you were so close to getting it uncomfortable but safe & managed a hellscape. Heck of a job).

-Children are a danger. Because their parents, who are my age & grew up without strobing shoes or backpacks, apparently forgot that it is possible to have a childhood without these things. Try going anywhere without running into strobing kids.

-My sound triggers? Good luck avoiding them on the bus (because the drivers won't tell people to turn down their music, & everyone apparently wants to be judged by their music) or walking down the street (again, people want to be judged by their music & damn everyone else)

-I don't trust the Epilepsy Foundation with our ADA issues because they're so hung up on Perfectly Normal (EFA National? If you're reading this, I keep saying that because the person in charge of the Northwest chapter was all about the Perfectly Normal). If that's an organization's official stance I do not trust them with my access needs.

People. The Americans with Disabilities Act is not just ramps and braille. My access matters too. And people are so aware of autism that I could gag on their puzzle ribbons, so they assume that when I say I'm disabled, I mean that I'm disabled by my autism. And being Autistic does come with support needs. But being Autistic isn't the reason I choose to not do shit I want to do. There's things I have no desire to do because I'm Autistic & find them miserable.

But I don't have to choose to not socialize because of autism. I have to choose to not go all sorts of places because epilepsy. If you're here because you care about Autistic people, remember that 30% figure above. Do you care about all of us? If you're here because you care about Disabled people--well, epilepsy is way more social-model disabling for a lot of us than autism is. Before starting a new activity or sport I don't feel the need to warn people that I'm Autistic, though I don't pass. I feel the need to tell them I'm epileptic because that is what gets triggered. That is what people freak out about if they aren't told. That is the thing that's actually likely to be an issue in the activities I choose.

Where's my access rights?


Mitchell said...

I have noticed these open signs with flashing LED lights lately. I assume these would be a major barrier to accessibility. I need to familiarize myself with the Accessibility for Ontarians with Disabilities Act to see if that sort of thing is covered by it.

Manziesan said...

I'm not photosensitive, but i hate going anywhere densely populated with people. I'm getting better with it.