disability awareness



I’ve recently made friends with a guy with a seizure disorder and he let everyone in the class know about it, so i figured it wasn’t a big deal but he started having a seizure today in class and it freaked me out,
I think i just need your opinion on how to deal with being around this person because I figure it must be annoying to mention what happened all day long to him, or to like ask him if he’s ok, and stuff.
It kind of worries me that he’s gonna like start having a seizure or something. Should i treat him like everyone else or is it ok to be worried?
realsocialskills answered
A couple of things:
Epileptics have seizures, whether or not you’re around to see them.
Folks who have seizures have the right to be in public places and participate in classes and everything else. And it’s really important that other people accept that, and not get intensely uncomfortable with their presence. Other people’s discomfort can be a really heavy burden to bear - it’s important for everyone’s sake that you find a way of getting over it.
That said, it sounds like a lot of the problem is that you’re not used to being around people who have seizures, and that you’re uncomfortable because you don’t know what the rules are. It sounds like maybe you’re not sure what you’re supposed to do if they have a seizure, and that being afraid of doing the wrong thing is stressful.
I’d say - if they’ve told you they have seizures, they’re probably ok with you asking if there is something you should do if they have one. And, along those lines:
  • Believe what they tell you, even if it contradicts things you think you know about seizures
  • Do not argue with them about their needs
  • Write down the thing they’ve said to do so that you will remember it
  • And if they have a seizure, do that thing

Also, if they have seizures that are triggered by something in the environment, it might be good to offer to help protect them from that thing. For instance, some people are triggered by flashing lights or music with a heavy beat. 

Policing access needs is exhausting, and it can be physically impossible for someone once they are triggered. If you can help bear that load and make the space safer, do so. But make sure you’re doing it from an informed place, and that what you are doing is actually helpful. (For instance, not all epileptics have problems with strobes, and being the flicker police for someone who isn’t triggered by light is the opposite of helpful.)

Again, this is a thing you can ask them about - are there things that are dangerous to them that it is important to keep out of the classroom? And again, believe them and do what they tell you to do regarding this.

It’s also important to keep in mind that their medical condition is not actually any of your business. If they don’t want to tell you any more than they already have, that is their right.

And part of what that means is - it’s not ok to expect reassurance from them about everything being ok. They might not be ok - people who aren’t ok still have the right to go to school and keep their private life private. So if you’re asking whether they’re ok because you’re worried and want to know if they need help, that can be good. But checking up on them for your sake because you want to be reassured and made comfortable is not good.

ragingpeacock said:

Great post! My biggest fear when having a seizure in public is that ppl are gonna be freaked out around me all the time. I got this. Most of the time I go hide my seizures so I dun upset anyone. That isnt as good as if I felt OK having them around others. Like I’d be less likely to hurt myself and I could get care afterward. So. Play it cool. I dun want to be a spectacle. 

Trust the person to take care of their needs. Most of us can sense it coming. Helping protect them from triggers would be A+. But also dun act like we’re gonna go off at any moment. 

Best things: 

  • if they say they’re going to have a seizure, encourage them to lie down in a clear spot and put something under their head. They may need help getting to a good area. 
  • beforehand: find out what they want. do they need an ambulance called? do they just need to rest for a while? 
  • help them get class materials for things they miss. 
  • afterward: let them rest quietly. I usually want water or food. see what they need
plz dun ask randomly what they need. Like I put a lot of effort into acting OK. Being asked would make me feel super self concious. I dun want ppl to be afraid of me. 

Something awareness ought to mean

Here’s a thing that happens:

A kid has a disability. Or is otherwise substantially atypical.

And the adults in their life don’t want them to feel different and suffer for it, so they don’t talk to them about being disabled.

And then they grow up without basic information about their body (or brain).

And then every description of how people work is different from what the kid experiences. And it’s confusing and isolating, and hard to even realize how things are wrong.

Because fish in water don’t know they are wet. It’s hard to know that the descriptions are wrong when you don’t know it’s possible for them to be right.

And then, sometimes, people who grow up that way eventually find out that they actually are different. That there is a word for the way their body and mind works. That there are other people like them, and that the world makes much more sense than they ever realized.

That’s something that awareness should mean. Kids need to know how their minds and bodies work; atypical kids need accurate information just as much as other kids do. They just don’t usually get it.