It's Time to Talk About Epilepsy and Employment Discrimination

After seeing this video, I wanted to throw in another firsthand account of workplace discrimination against people with disabilities.

Eleven years ago, I interviewed for an administrative assistant job at a college. It was a group interview with the assistant dean and all the faculty chairs. The assistant dean, my would-be boss, was asking if I had reliable transportation, if my car was in good condition. I kept saying, “I can’t drive now but I can in February and until then my husband will take me.” He kept asking me why. Afraid they’d think I had a DUI, I finally said, “I have epilepsy. That’s what’s going on.” One faculty chair, we’ll call him “Doug,” said that wasn’t something he’d mention in other interviews. So you can imagine my surprise when they decided to hire me.

Other relevant stories:
• Epilepsy Triggers
• Can Flashing Lights Cause Seizures Without Epilepsy
• Can Students with Epilepsy Participate in Sports

I got my drivers’ license back that February and things were OK for a while. I had a two-year seizure-free streak. Then I had another seizure, and it made me afraid enough to wait a little longer than six months to start driving. A little longer became eight years until this year, when I finally felt stable enough to do it. Then I had another seizure and the cycle started again. My husband had to drive me everywhere.

By this point, the school had done away with assistant deans because the state had slashed the budget so much. The dean herself became my boss, and when she retired, she was replaced by a faculty chair — Doug.

The previous dean had been casually cool about my needs, like having to miss more hours than usual, working from home on occasion and having dimmer lighting in my office. When Doug took over, he wasn’t having it. “With it all dark it looks like you’re not in there,” he said. (How hard is it to say “Beppy, you in there?”) If I wanted that lamp, he said, I’d have to file for ADA accommodations. So I did. I was lucky — at a smaller office, they wouldn’t have had to comply.

One morning, I had a seizure at the office and everyone freaked out. It was after 8 a.m., when my shift started, but not many people were there yet, least of all Doug. I made the mistake of telling him that my seizures are usually in the morning, and he said he didn’t want me arriving so early. I sort of had to get there by 7:40 so my husband could go to his job, which started at 8. The word “liability” was used. I felt like I had a target on my head.

The environment became more hostile, and the job became thrice as hard when one co-worker retired and another went on maternity leave, I started to mentally unravel. One morning, a couple of days after my family dog died, I heard the last nasty rumor I could take and had a nervous breakdown (like, a fetal position under my desk contemplating suicide nervous breakdown). They said I would need a psychiatrist to sign a release form after I took leave for 72 hours. I said, “how about I just don’t come back?”

As the chronic pain and mental health issues got worse, I haven’t been able to hold down a job since that day six years ago. My husband makes enough for us to live comfortably, but I’m incredibly lucky in that regard. We had an unspoken office culture rule of “don’t talk about your personal life at work,” but from all the pictures of co-workers’ pets and babies and vacations, I know that just meant “don’t talk about anything that might be out of someone’s comfort zone.”

Being told not to talk about it is perpetuating the stigma we’ve been living with for at least a millennium, if not longer. That’s why I love that Greg Grunberg’s charity is called talkaboutit.org. People need to talk about epilepsy and other health conditions, and we need to lead the charge. So unless you feel your employment might be at risk, go ahead and talk about it.