Category Archives: epilepsy

Laws: Strangely, Not Optional

There seems to be a strange misconception going around that the majority only needs to obey laws designed to protect minorities if it’s convenient for said majority. It happens on the grand scale with a huge shitstorm, like when Cranston West High School recently had its ass handed to it on a legal platter over an illegal prayer banner, and it happens in smaller scales without much noise, like when Portland Lindy Society and Stumptown Dance consistently refuse to enforce a flash-photography ban designed to keep epileptic dancers safe. The common denominator between the two is a majority ignoring the law at the expense of the minority.

Being in the majority comes with a shit-ton of privilege, whether it be Christian privilege or able-bodied privilege or whatever else. The majority is used to having a world that accommodates them, while the minority lives in a world where they are constantly reminded of how they don’t fit in. The minority gets used to having to give ground, and they often try to pass as much as possible to avoid trouble. The majority doesn’t even think about that stuff. The majority isn’t even aware that stuff exists. The majority has the privilege of ignorance – the privilege of not knowing how it feels to be treated as inferior.

So that’s why we have things like the ADA and separation of church and state. If unchecked, the majority will trample the minority – often without even realizing that they’re doing it. The majority will probably agree that it’s good to have laws that protect the minority (unless they’re for Ron Paul…). What they don’t seem to like, though, is having to change their behavior because of those laws. When someone points out the law and tells the majority to obey it, the majority howls about how their freedoms are being infringed. They whine that following the law would bankrupt their business. They demand that the minority ask more nicely, but when the minority does ask nicely, their requests are ignored.

But the fact is that laws are not optional. There is no inconvenience clause, no tradition clause. No amount of ignorant, self-righteous whining will make discrimination legal. But damn if the majority won’t try.


Flashing lights trigger seizures, so don’t use them

Quick PSA post: Flashing lights trigger seizures. This means the strobes people put on bikes, the flashing hazard lights used for almost anything, well, hazardous, the flashing lights on emergency vehicles (which is pretty counterproductive), and the flashing lights that go along with some smoke alarms (also counterproductive). People having seizures matters. Seizures suck. The period after a seizure (the post-ictal period) is described to me as “a really bad hangover.” K has a great stream-of-consciousness post-ictal blog post so you can get an idea of what it’s like. Besides the obvious danger during the actual seizure (hitting your head if it’s a tonic-clonic, crashing if you’re operating a car or bike, falling, etc.) there’s the danger that comes from not knowing what’s going on, where you are, and where your home is, and how to get there for hours after your seizure. K once sat down on the light rail tracks and refused to move after a seizure. Luckily she had a friend there that’s really good at speaking K-ish when she’s had a seizure, and she eventually moved. But people with epilepsy don’t have friends around all the time that can look after them (because they shouldn’t need keepers to have a life). Having a seizure in public is a very dangerous thing, and flashing lights are pretty successful in making that happen.

So what can you do? At the very least, set your bike light to a steady beam. The brain tracks that better than a strobe anyway. If someone asks you to stop doing something because it might cause them to have a seizure, listen to them. If you want, write Letters to police and fire departments asking them why they use seizure-triggering lights while they are trying to alert people to danger. (There are other options available, even if it’s just a different frequency of flashing.) And tell other people. The world should be safe for everyone, not just neurotypical people.

Aware vs. Informed: Autism, Epilespy, and Bipolar Edition

Awareness is a pretty trendy thing. A big deal is made of breast cancer awareness, autism awareness, gay rights awareness, human rights violations awareness, etc., especially in privileged groups. If you know about the problem, the logic goes, then it will go away.


The thing about awareness is you don’t have to deal with the messy facts. Instead, you get to paint a subjective picture, preferably one that gets people to give your organization money. Informing people, on the other hand, is more work, because you have to explain things, and you have to get people to look at things differently, and you have to get them to change how they think about basic things. It’s not enough to know that a problem exists. You have to know why it’s a problem, and why it would be better if the problem was gone. You have to know what it’s like to live with that problem, and you need to eliminate inaccurate stereotypes about the problem. That’s a hell of a lot more work than raising awareness, but informing people actually works. It’s hard, but it gets shit done.

So let’s get some shit done. I’m going to be using some terms you may not be familiar with. I’ve defined the terms I think need the most explanation on the Definitions of Common Terms page, but if there’s a term in here you don’t know, ask me in the comments and I’ll explain it. Read the rest of this entry