The one thing about seizures I’d love devs to understand is that a seizure is not just a single event. At best, it’s your whole day gone. Maybe a few days of feeling rough. It could trigger a cluster. You could lose your license. You could die. Please hire consultants.
#a11y

I don’t drive as I will have to get to a year seizure free to even vaguely consider it, but as I’m unmedicated the risks for me personally are too high. But my sister who has seizures has been driving for almost 20 years and I always think of her. How it would feel to lose that.

And I lost a childhood friend to SUDEP a few years ago, us both having developed seizures around the same time in late teens/early adulthood. We’d grown apart and the first thing I’d heard in years was that he was gone. These aren’t hypotheticals.

I often worry about what trigger will be the thing that tips the scales. What is the factor that lies between someone losing their independence, or someone being here or not? Don’t let your media with flashing images or glitches be that for someone.

It is easy to presume all these situations are hypotheticals when you don’t know people who are affected. But we are here, just wanting to be a part of the world and enjoy the things we love without being put at risk. I just wish more people took it seriously.

One more thing, flashing EEGs are kind of traumatic. I’ve had a lot of them over the years, and I can’t really explain how vulnerable it is to have lights flashed in your face to make you seize. The people who are telling you this are expressing vulnerability, be kind and listen.

Finally, and I hate to add this, I am quite frightened about typing this all out because vulnerability around seizures is one thing, but the prospect of a flashing gif attack is a very real risk when critiquing triggers in popular media. It shouldn’t be this way.