Have you ever had someone keep you from something you knew you could do, for no reason you could see?
People with epilepsy are often in this situation. Usually we are perfectly fine to do anything needed for an office position; we’re not likely to have medical emergencies; and potential employers are required in the US, UK, and Canada to make reasonable accommodations to allow us to work.
In the US, the law covering this is the Americans with Disabilities Act. In the UK, it’s the Disability Discrimination Act 1995 (in Northern Ireland) and the Equality Act 2010 (everywhere else). In Canada, each province has its own laws, as well as the federal government. Which law applies depends on whether the federal government has oversight of your industry or not.
And yet. In one of my first successful job interviews, I might have just narrowly missed experiencing just this kind of discrimination. I felt uncomfortable mentioning my epilepsy; I was afraid of what a potential boss might say or think. After I’d been told I got the job, I took a deep breath. “There’s something you ought to know…”
Once I got the story out, my boss gave me a look. “I wish you had told me before I hired you.” What was that supposed to mean? Would I have been hired if Mary had known about it? What kinds of issues did she have with my condition? I didn’t have the boldness to ask her. Perhaps I should have; but at 25 years old, having just got my first real job, I didn’t want to risk it.
I’m sure I’m not the only one in the same situation. Recently, Amtrak settled a lawsuit with a job applicant who had been turned down because of his epilepsy, even though he had been cleared for work by his neurologist.
Others, like Karen Martin, have felt the need to hide their epilepsy, and have suffered discrimination once their condition is made known to their employer or co-workers.
Why does this happen?
Partly, at least, it seems to be that most people don’t know a lot about epilepsy, and don’t know what to do for people with epilepsy. A survey done in 2013 for the UK’s Epilepsy Society revealed that nearly 60% of adults in the UK don’t feel they understand epilepsy and its effects. I can’t find similar results for North America, but I wouldn’t be at all surprised if the numbers are similar.
The great thing about this problem is that it’s something we can handle. If the problem is mainly one of awareness, who better to spread awareness than the patients themselves? But we have to own it; we can’t be afraid of our own epilepsy.
It took me almost 25 years to come to that conclusion—I’ll tell you the story about that next time 🙂 But it’s OK to have epilepsy; it really is. And the more we talk about it, the more people know and the more comfortable they’ll be.
Own your epilepsy, guys. It’s the best thing we can do for everyone.