Earthquakes underwater: How epilepsy shaped my practice as an accessibility-forward designer
A few years back, a family member brought home a Nintendo Switch during our holiday gathering. I spent hours exploring the beautiful open world in Zelda: Breath of the wild, in all it’s shimmering, flame-twirling, and near-natural tremoring grandeur. It’s one of the most beautiful games I’ve ever played. And the whole time, I kept thinking, “Man, I am glad this came out now and not when I was a kid because I’m not sure I would have been able to play it.” This game was a reminder that I used to have epilepsy.
This summer, as my boyfriend and I cowered indoors while a terrible pandemic raged across Texas and the US, we picked up the switch again. We started playing Starlink: Battle for Atlas, a game that crosses over with another favorite saga; Star Fox. We were so thrilled to see you, Star Fox! I found the world of Starlink to be as equally beautiful and, quite literally, equally flashy as that of Zelda.
I won’t harp on Zelda or Starlink or similarly beautiful but potentially seizure-inducing video games today. I love these games. Initially, when I sat down to write this article, I thought I intended to boldly describe the inaccessible virtual world around us and propose ways to make it better. I am not an accessibility expert AT ALL. I’ll touch on that in the second half of this essay.
When I sat down to write, something I often do as part of my design practice, I realized that I’ve never really written about my own experience with epilepsy. It disappeared back to the dormant neurological hole it came from, and I moved on with my life — my new, normal life. But now I am pretty sure that normal is really the outlier.
Part 1: My experience with epilepsy
I still remember the day I found out I had epilepsy. I was 5 or 6 years old, and I recall almost perfectly the out-of-character calmness that my mother practiced in that exam room with me as the doctor explained the condition, the prognosis, and the treatment options. She waited patiently as long as she could possibly stand it, which was a long time for her. And then she excused herself to the hallway where she took several measured steps away from where I stood. The door to the exam room closed behind her. Then she burst into guttural sobs. I could recognize the sound of her tears as well then as I can today. That is a distinct type of crying and unique also to each mother.
My mother returned, and her calmness and patience resumed as if she had merely flipped a light switch. Her tears were gone. I wanted to comfort her. I distinctly remember that I did not cry or have any fearful reaction at all. After all, I had already had seizures at this point. Now, they just had a name. They weren’t the end of the world to me.
Maybe if I had been older, I would have understood that it was the stigma she feared, not the seizures. Perhaps, I would have been the one to cry, and she would have comforted me. Still, I see her moment of patience as the most brilliant example of why mothers do not get nearly enough credit in this world. She didn’t want to scare me. But she was a human who needed a moment to cry out in fear.
My mother’s tears were her reaction to her own knowledge. This was the very early 90’s, and the world was still unforgiving to others. You could argue that the world still makes little room for us today.
People with epilepsy used to be institutionalized.
Yes, there was a time not so distant when the caretakers of people with epilepsy placed us (and I use that word intentionally) in asylums along with so many categories of other people. Some people with epilepsy went to live in “Epileptic Colonies,” where they could enjoy some semblance of autonomy through work and friendships and reasonable medical attendance when needed. But epilepsy is not contagious. Authorities argued that segregating people with epilepsy would improve their care. I’ve read in detail about these places, and I actually think that is a fair statement. However, if you read between the lines, it’s easy to imagine that this tactic might have also spared civilized society from the visual peculiarity of witnessing an epileptic seizure.
For a long time, there were no confident medical interventions to subdue seizures. Instead, the interventions subdued the person with epilepsy. Then, there were “treatments,” which dehumanized but rarely cured people with epilepsy and other neurological disorders.
Growing up with epilepsy
For me, in the early ’90s, there were lots of different pills. Some gave me rashes that covered my entire body. Others made me sad and tanked my motivation in school.
Some pills worked only sometimes. Others did not work at all. One worked well enough.
I had to follow some new rules in addition to taking medication. “Be careful around bright blinking lights.” Easy? Not in the ’90s, it wasn’t! There were loads of blinking lights in the ’90s! I had bracelets that blinked. Hula hoops blinked. Shoes blinked. The cartoons I liked were definitely full of blinks. Who remembers GeoCities (the first place I “designed” a website)? If you’re a Gen Z-er who thinks apps have gone too far with GIFs today, think again and google GeoCities.
I remember the strobe lights at some of my earliest pop concerts and how I would look at the ground or close my eyes, rather than watching the performers. This is a habit that followed me even after my epilepsy left. To this day, strobe lights make me very nervous.
There were a few other implications. For a long time, a parent had to be present while I bathed. This is normal for a 5-year-old, but as I got older, that got really annoying. My mom let that one go early, once we found a medication that mostly worked, but still before I was officially cleared of epilepsy.
I had to quit the kiddie swim team my parents had only just enrolled me in, which I didn’t care much about anyway. But kids swim a lot in the south. I’m actually so thankful I *wasn’t* diagnosed with epilepsy until *after* I learned how to swim. I think there’s a strong possibility that my parents wouldn’t have let me swim at all, and while the grown-up me understands why, I think the kid-me would have been pretty pissed. When I did go to pools at camp and with friends, I felt the adults all watching me a bit more closely than the others.
When I started to understand the gravity of my problem, I began to do many things to normalize epilepsy in my own mind. I told myself that everyone has problems, and some people have even more severe and debilitating health problems, which could kill them. This is true but is an odd and somewhat sadistic thing to be so absolute about at such a young age. I also imagined what I’d do if I ever had a seizure in public. “Maybe you can just pretend it’s a sneezing fit! I have those all the time too!” Sad.
There came the point that I was old enough to care deeply about what my peers thought… Because we all did. Sleepovers were an issue because the vast majority of my seizures occurred at night. I had one seizure at school in the third grade. Kids can be exceptionally cruel, but by some miracle, my classmates spared me about that. I honestly wonder if my parents bribed them.
What were seizures like for me?
In retrospect, it is possible that I had other seizures while in public. Most of my seizures were the typical shaking fits you see in movies. Some seizures presented like drowsiness. If that were the case, I only knew it was a seizure if I needed to speak because I never could do so during and for several minutes afterward. My whole face would feel numb, and my tongue and vocal cords were “turned off” momentarily. I would try to talk, but the words were garbled. I would liken it to the effects of Novacane or waking up after anesthesia, except that I could remember everything. Actually, my face and extremities sometimes hurt and tingled slightly before and after a seizure. It wasn’t exactly like having a limb “fall asleep” (paresthesia), but it wasn’t far off from that either.
I’ve read that some people never recall their seizures and experience something more akin to unconsciousness. Wow, were mine different! Most of my seizures were more like a bodily earthquake than the barely-aware drowsiness I already described. I swear, there were times I could even see my limbs undulating like plate tectonics. But some family members have told me my seizures were never very dramatic. I always had trouble hearing properly during a seizure. That was most similar to having water or wax in your ears. I imagine that some of my experiences may have been more psychological than physiological.
One day, I realized it had been a few months since my last seizure. Then a year. Then I was told I could stop taking the medication, and, at 12, the doctor said I was epilepsy-free. I probably would never have a seizure again. That was 20 years ago.
And he was right. I never had a seizure again as far as I know. Sometimes I still wake myself up in the middle of the night, jump out of bed, and speak. Just to be sure.
Part 2: My perspective as a product designer
Like more than half of all children with epilepsy, mine went away. For some, it never goes away. Unfortunately, adult-onset epilepsy can stick around too. This disability affects over 50 million people worldwide.
I didn’t know much about accessibility at all when I decided on a career in design. I had no idea my experience with epilepsy would help me in any way, whatsoever. In fact, I was really intimidated by WCAG and accessibility for a long time, and totally empathize with people who still feel that way. But once I started to reflect on my childhood disability, I actually grew really motivated to learn about accessibility. I know firsthand how high the stakes are. I have been the kid who had to cover her eyes at a concert. I know intimately why that super high-contrast/high-speed animation shot on Dribbble didn’t ship after all.
Some basics I’ve learned:
Motion: Please don’t let my experience frighten you away from using motion in your product. Thoughtful motion design benefits the visual user's experience by creating cues that draw-in and focus attention. Carefully crafted motion can actual benefit an app’s accessibility for people with disabilities that impact attention, such as ADHD, traumatic brain injury, and Alzheimer's.
The good news for product UI is that fast blinks are sort of out of fashion. The WCAG guidelines for flashing elements aren’t super easy to digest and understand, in my opinion. Still, an easy rule of thumb is to avoid back-to-back high-contrast flashes altogether and apply slowed easing to anything that could be perceived as a flash. Something as seemingly benign as a modal overlay could be perceived as a flash if it appears too abruptly against a contrasting background.
Sound and haptics: If you're worried that focusing too much on motion might exclude users whose disabilities impact their vision and those using keyboards and screen readers, sound and haptics could be an interesting area to explore. Sound can mimic the visual motion of UI. And guess what? Sound is one area where I think game developers have us traditional web designers beat. Games often use haptics and sound patterns to indicate certain actions to game-players. This is called iconic UI sounds in gaming. It’s one area I hope to learn more about in the coming years.
Content: Content plays a massive role in delivering an accessible product. In fact, there’s a whole US government organization committed to helping us write accessible content.
Don’t feel like your robots have to talk like robots. Make it a lifelike conversation.
Please acknowledge that accessibility goes beyond font size and color contrast, and then acknowledge that you’re still figuring it all out.
We don’t ALL need to be experts! Be a knowledgable practitioner who knows where to find the answers instead; w3.org. Generalist designers have to do way too many things to be experts at all of them. Accessibility isn’t easy, and the rules will change from time to time. (2023 Update: WCAG 2.2!)
Back to Zelda and Starlink. Those games and many more are fantastic. Let’s not throw them away or cancel Nintendo, please. That’s not my goal. We in the tech and entertainment fields can still make amazing things and evolve the accessibility of those things as we learn more.
It’s OK to admit that we have a ways to go.
With that said, any would-be accessibility specialists out there must commit to educating yourselves about the other others — those among us who can see and hear but who see differently, hear differently, and whose disabilities may be triggered by what we see and hear. Designing for neurological differences is just as complex, challenging, and important as designing for people with visual and aural differences.
People entering design, PM, or engineering fields: I wouldn’t call myself an accessibility expert, even with my experience. I would call myself an accessibility-forward designer who learns something new every day, and probably will for the lifetime of my career.
Established practitioners: If you’re part of a well-organized, progressive product and eng org that values accessibility, you totally should brag about it. But rigorous design practice is about doing what you know how to do AND acknowledging the limitations of your skills or product. That way, you’ll always have a backlog of work to optimize. Job security!
Have you ever had epilepsy? Contact me! Let’s be friends.
