The West PacificBoard

When I was first diagnosed with Epilepsy, my doctor told me to never tell anyone. "If a form asks if you are epileptic, say no every time. There's too much discrimination, so hide it."

Sadly, as a disabled person, I've had to invoke the ADA more than once. I've been discriminated against in hiring, promotions, marriage, housing and a thousand other things it seems. For example, when I was first diagnosed in 1979, it was illegal for epileptics to get married in the state I lived. Throughout life, I had doctors sending notes to employers to force them into compliance at times. So many stories of discrimination I could tell. Employers would yell at me for taking time off work for my seizures. I used my own vacation time, and they told me to stop. As if I can stop the seizures magically. One employer illegally fired me for my health, but there was no legal recourse. That was before the ADA.

One time, I was engaged to be married and the Pastor of her church worked hard to prevent the marriage - successfully. It was called off two days before the wedding. "Don't marry him! You'll have to take care of him for life because he's epileptic!" Two days before, he got her parents to say they weren't coming to the wedding, which ended it. Their excuse was that I didn't "come over for dinner with them often enough". Something they had never mentioned.

They lived in the same apartment complex, I saw them everyday.

And of course, there's always the random person with the idea that "seizures means you're possessed by demons! You better get right with God!" Yep, it's a real thing I run into at times, though less over the years. You'd think they'd realize that the Apostle Paul was an Epileptic. His writings talk about being 'thrown' into the fire. Seizures will do that. They've thrown me half across the room. The more milder version of this is those that are kind and want to pray for me, but some will claim that the problem is that the right person hasn't prayed for me yet, or I don't have enough faith. That's not helpful.

Even the government often refuses to recognize epilepsy. I was refused disability for 15 years by the government. The guy in charge of my case in 1995 said, "yeah, you have a seizure-disorder, we admit that. But that's not Epilepsy." Of course it is. "More than one seizure" is the definition of Epilepsy. It was an excuse to deny me. I nearly ended up homeless on the street. Politicians and administrators regularly try to remove epilepsy as a recognized disability. It was not recognized before ADA.

Now you know the cause of about a third of the homelessness problem. The disabled often can't afford housing. Look how little disability can provide. It's not livable. A child that is disabled and cannot work will be placed on SSI on becoming adult, which pays only $600/month. They have to live their lives on that. Food, shelter, clothing, everything. They do get Medicaid. The amount was set in the 1980's and has never been raised. That's insane. Why aren't there at least cost of living adjustments?

Every couple years I have to write letters to the FDA and Medicare as they keep trying to remove anti-seizure meds from the formularies. Just won that battle again a couple months ago, but I hear they're back at it. That's health discrimination by the government, and they are bound and determined to try it over and over again until they get their way.

Yeah, Epilepsy disability sucks. I'm in the 30% that can't be fully controlled. No one wants to be around people with seizures. My half-brother stopped visiting me 40 years ago because he couldn't handle being alone with an epileptic. He was scared of it.

It's a lonely life sometimes and family can be your worst enemy. I read terrible personal stories of newly diagnosed epileptics and their families abandoning them. Spouses deriding them for not 'stopping' the seizures as if they could. Family members shunning them. It's really bad. Lots of military coming home with head injuries the past couple decades with newly acquired epilepsy, and their families turn their backs. It tears your heart out.

I avoid talking about this kind of thing. But it is an appropriate day for it I suppose. Epilepsy is so much more than seizures.

There is no one to advocate for you in an ADA situation. There is no agency that you can report someone to. You must have the cash to hire a lawyer to force the issue and hope you get a decent Judge. And the disabled don't have that kind of money. It's nice to have the ADA law, but how do you enforce it? I was able to use company policy in regards to doctors notes to gain compliance, but that's not always an option.