Wednesday, August 27, 2014

Get this bus off me: reaction to Epilepsy Foundation's HOPE mentor training

I recently (recently ish) went to a training to be able to do epilepsy education presentations. The only information most people have is bad information, even worse than autism misinformation, & with autism at least some good information exists, & with autism at least some acceptable pop culture narratives are appearing. In theory I support more public "awareness" & education about epilepsy.

I say in theory because a lot of what I saw in practice I cannot support. It's hurtful. It tries to defend against stigma for some by adding to stigma for others. The focus is very confusing, in that there's vague acknowledgement of cohorts that aren't otherwise neurologically typical children, but it's just lip service. There's a lot of aspects and populations being denied, ignored, or glossed over.

To be fair, there are some good parts to their standard presentation. "Don't panic" features prominently in the first aid literature & that's good. I approved of many individual segments of the program-it's the overarching attitude that I find so problematic.

The overall message sounded like, in so many different wordings, "people with epilepsy are normal except they happen to have epilepsy, so they're ok." That is not necessarily true & that's not how I roll.

Factually speaking, many people with epilepsy would still have neurological, developmental, and cognitive differences or disabilities if you magically removed their (our) epilepsy. Many Autistics have seizure disorders, and they commonly occur with other developmental conditions as well. Common causes of adult onset epilepsy are literal physical brain damage, like traumatic brain injury and stroke. These things all effect a lot more than the regulation of electrical activity in the neocortex--we are not "normal except for the seizures."

Not only that, but epilepsy can and does have cognitive effects. Sometimes these are a result of the treatments (as anyone who has taken Topamax knows) but the seizures themselves do it too. We forget things or have trouble with time or finding words or our moods are effected postictally. These are things that happen. It should be ok to talk about it!

This focus on how cognitively typical we are not only throws those of us who aren't and never would be under the bus, it also does a huge disservice to people who don't have any other diagnoses. If a student has seizures that rub up against is language centers, it is unreasonable to expect him to write an essay or give a presentation in last period if he had a seizure in first--even if he's mostly fine. Expecting calm, solid emotional regulation from someone whose seizures effect that? Not reasonable. People who are around us will notice seizure related cognitive or emotional changes and difficulties--it does us all a disservice when the experts pretend they don't exist or are rare exceptions.

Besides that, it's trading on people's ableism. "Oh, we're not, you know, intellectually disabled. We're normal" is the actual narrative I heard promoted. This is ableist hierarchy of disability nonsense. It is lazy. Using other people's bigotry against a group (in this case, people with developmental disabilities) , saying you're better than those people and therefore should be accepted. That is horrifically disappointing from a national advocacy organization. "At least we aren't like those people, our minds are fine!" is not an acceptable advocacy technique. Acceptance is not a zero sum game.

I can't get behind this message, that people with epilepsy should be accepted because we're just like everyone else. "Perfectly normal" kept coming up. The correct message is we deserve acceptance because we are people. It shouldn't matter how not normal we are aside from having epilepsy.

I'm not and never will be "perfectly normal". I and others like me are still perfect. So, Epilepsy Foundation, you will need to park your bus somewhere else. I'm profoundly disappointed in your national program and the people you have doing HOPE trainings in my region.

4 comments:

jess said...

This ..

Acceptance is not a zero sum game.

A-effing-men.

I'm sorry to hear this. Had hoped they'd get it right. My girl, who is also autistic and has epilepsy, is perfect too.

Sigh.

deanna smith said...

OMG thank you for this post!

the emotional dis-regulation that i experience from my seizures... along with the anxiety that comes from being in environments that are seizure provoking (nearly all considering fluorescent lights) can be crippling.

would that everyone understood this!

Mariah Sheehy said...

Sounds like they have a case of what I call Dan Savage Syndrome- they are being led by people that just have this *one thing* that makes them different. But it's just this medical thing I can hide away in a drawer, but here I need to educate you in case of emergency but totally downplaying it & screw the other people who don't seem "normal" as me. Have noticed other people with epilepsy, even if they haven't experienced brain damage (that I'm aware of) or have a formal autism or other dx, often this vibe of difference about them- can't quite put my finger on it, varies by person, but yah. They are part of the neurotribe, no doubt!

Gus said...

Thanks for excellent writing that makes me think more about my own epilepsy, that I've been thinking about ever since my first seizure 25 years ago. People think that all I have is a coupe of seizures a day, but my memory is messed up all the time, and I have a bad vocabulary. I don't know my sons' birthdays. I had brain surgery that made it worse. People still think I'm complaining if I dare to try and explain.

The only ones who understand are the ones who have epilepsy as well.