The Deck of Ableist Cards

Last night at work, several co-workers and I were talking about the amount of sleep we get each night. I mentioned that I needed 9-10 hours of sleep a night, and I didn’t even get to finish my sentence before a co-worker burst out laughing. “Nine to ten hours?” he mocked. “How old are you? I’m forty years old, and I’m lucky if I get six! When I was your age, I was good to go on four!”



“I have epilepsy,” I said. “If I don’t get enough sleep, I’ll have a seizure.”

The wave of silence crashed over our group. Yon co-worker lost his jeering expression, but wasn’t in the least bit apologetic about mocking me.

In an ableist world, where neurological abnormalities and physical impairments are an oddity, more a butt of a collective joke rather than something that real people have, have to live with, and have to deal with, where we’re an inconvenience at best and leech on society at worst, this is what we have to deal with on a day-to-day basis.

Last night, I was slapped with the lazy card. Which card will it be today?

Why Repealing Healthcare Reform is a Bad Idea.

As the health care debate emerges again, I’d like to give the participants a unique perspective: I’m an epileptic woman that works full-time, has health insurance with a lot of strings attached, and (of course) pays taxes.

Here’s what my epilepsy means as far as healthcare: I have a monthly prescription that I have to take. Otherwise, seizures! Inflicting my disease upon others! Inconveniencing others! Every few months, a doctor’s visit, and depending on the doctor’s whim, perhaps an EEG at the nearest hospital the next week. If I’m unfortunate enough to have a seizure in public I have to deal with EMTs, perhaps an ambulance ride, the Emergency Room, and doctors and nurses rushing about to give me tests to determine what is wrong with me, all the while ignoring my feeble, half-conscious self informing them exactly what is “wrong” with me.

This gets expensive, folks, even with insurance. With or without it–it’s a nightmare.

I remember my college days, sprinkled with seizures, and the inevitable aftermath of my insurance company claiming I’m no longer covered, leading to the hospital sending me bills that were not mine to pay, then to collections and the night-and-day harassment of those lovely people. Then the calls to the insurance company, the feigned “oh my! We don’t know what happened! We’ll get you right back on the policy!” and the grasshopper chirps when they were asked to pay their share of my hospital visits.

My insurance paid four dollars of my monthly prescription.

After every doctor’s visit, I would inevitably get a call from the doctor’s office. “Ms. Wick, the insurance company says you’re not on the policy.” I would sigh, tell them that I am, that I will call the insurance company and that to please file again. Like my calls about the hospital bills, the insurance company would say, “Oh! My! I don’t know how that happened!” Unlike the hospital bills, they would actually pay their share. Does this make it better? No.

That insurance company? A national, well-known insurance company. Many of your probably have policies with them.

Post-college, I began my full-time job, and got a new policy with a different health care company. I hoped for better service, hell, service period, for the money that I gave them. I knew when I was filling out the paperwork, however, that it would not be much better. Right there on the paperwork, the insurance company declared its unwillingness to actually provide the service for which it was being paid for: pre-existing conditions would not be covered for a full year. After that? Who knows. My previous insurance company certainly did not declare that it would pull the crap with me that it did.

I haven’t yet used it, save to refill my prescription. They pay more than my previous insurance company did. But my doctor’s visits? The annual EEGs? The Emergency Room trips? It remains to be seen. I do not have much faith, however, when right in the paperwork they tell me that they will not pay for conditions that are the entirety of why I am enlisting their service, for an entire year.

Imagine paying a mortgage on a house for a full year before you are allowed to move in. Imagine paying tuition at a university for a full year before you are allowed to enroll in classes. These things are outrageous. They would not happen–because they are so clearly thieving. In what other industry would it be acceptable to pay for a service and then to not receive it? It is acceptable in the healthcare industry only because we have allowed it to be so. “Obamacare” is the first step to Americans actually getting service that they have paid for. It is setting a corrupt market right. A market that should not exist in the first place. Healthcare should not be a business. However, right now, in the “best country in the world,” it is. So we must fix it.

To properly manage my epilepsy, I must go one of two routes: The first, and the easiest is to go on medication. I need health insurance for this. I need a job for both of these. The second: to prevent seizures without medication, I must keep stress at the lowest level possible. Ten or eleven hours of sleep a night is a must. I can manage with nine, but ten would be ideal. Why? Stress and sleep deprivation are the two things that trigger my epilepsy. It’s hard work, and takes a lot of thought, balance, effort, and planning to achieve those things, and even so, I still may have a seizure every now and then. So far, I’ve been unsuccessful. Getting ten hours of sleep a night and still being able to accomplish things are impossible. Throw in a need to be low-stress, and it is a laughable endeavor.

I pay my taxes. I pay my insurance premiums. I deserve to get what I paid for. I’m not “an epileptic.” I’m a human being. I’m trying to earn my place in a devastated economy. I want no handouts. I want to work. The only job that the health care bill will “crush” is mine if it’s repealed. Take away my access to healthcare, you take away my ability to work.

Tales of Epilepsy: Refusing Treatment

For a long time, I refused any kind of treatment for my epilepsy. For a period of my life, I hated any kind of drug, even aspirin or acetaminophen, and refused to take anything. And I got endless harassment for it. It was my decision. It was my body, and my choice whether or not to pump chemicals into it, and I chose not to. I knew well the consequences of my decision—I knew that it left me open to seizures, should the circumstances, and my body’s reactions to them, be the right combination, and I chose not to take medication anyway.

I was foolish, people said. I wasn’t taking care of myself. Didn’t I know all of the bad things that could happen to me if I had a seizure at the wrong moment? I was being immature, people said. I should take medication. I didn’t like drugs? Well, I should suck it up and take them anyway. I was being selfish. How dare I!

I quickly saw it wasn’t about me for these people. It was about them. They would worry about me going away to college with untreated epilepsy. I inflicted my epilepsy upon others. My body, my neurological disorder, my choice to reject medication, and my seizures were mine. I made my decision, and I had to live with it. I had to live with my epilepsy every day. Not them.

Every partial, every seizure was an opportunity for friends, family, EMTs, ER staff, and random strangers to lecture me on my choice, and to attempt to cajole me into taking medication. I was already struggling with the loss of control over my own body. I was struggling with memory loss. I struggled with the injuries I’d gotten from falling down stairs, knocking my head on the concrete, the soreness from my body tensing up and then jerking about. I struggled with the indignity of pissing myself. I struggled with the humiliation of the lonely walk from the cab, the ambulance, to my bed, knowing I looked like hell, wasn’t quite fully aware yet, and very few actually cared enough about me and my well-being, to actually ensure I was alright. I struggled with the knowledge that I could not ever fulfill my dream of being an officer in the United States military because I had abnormal brain waves on an EEG, and these people were taking advantage of all of that to get me to do something I did not want to do, had chosen not to do, because they wanted me to do it, so I would not inconvenience them.

Sure, there were some good arguments. I could hurt someone else. My life would be much easier if I took medication. I—can’t actually think of anymore than that. But what no one considered is that I considered all of that already, and I still did not want medication. I had my reasons. They were even more intimate. Sometimes, I would get so frustrated I would blurt it out, in a desperate attempt to shut them up. Sometimes it worked. Sometimes I got, “So? Get over it already.”

My professors were outraged that I hadn’t told them while on a study abroad trip. So much so, in fact, that when I had one, they threatened to send me home if I didn’t take medication. I had very little choice. So I did. I took medication that had just been released in Europe, that hadn’t even been considered by the FDA in America, which I knew nothing about. When I forgot to bring the medication on a weekend trip, I was lectured, reduced to tears, forced to remain on the bus while the rest of my classmates toured a chateau, and forced to take a Xanax. I wouldn’t be allowed to join our group on our next stop, Auschwitz, if I didn’t take the Xanax. What choice did I have? None. So I did. I took a drug that I didn’t, and still don’t, even know the name of. I took a pill that I knew would do nothing for me because my professor thought it might, and that was all that mattered. My knowledge of my own disorder, my own body, didn’t matter.

When I got home from the trip, and that new drug ran out, I got on medication. Once I started, I couldn’t easily stop—my body adjusting to the lack of drugs would mean more partials and more seizures while the drug was purged from my body. I’ve been on medication ever since. It’s been a year and a half since my person was disregarded, my choice disrespected, and my agency taken from me. Everyone is happy I’m taking medication. They’re so pleased that I got a little keychain pillholder for emergencies. They’re satisfied that I’m being the Responsible Broken Body. Everyone is happy, but me.

Seizures in the News

This article concerns me. The headline and the lead-in speak of the seizures that Brian David Mitchell, the man who kidnapped Elizabeth Smart, has been suffering. The article quickly moves on to discussing Mitchell’s mental health.

Mitchell’s lawyer, the article says, is presenting the “insanity defense” and talks about both Mitchell’s, and his family’s history of mental illness. I find it curious that the author, Jennifer Dobner, chose to take the article in this direction, since after all, the headline is “Elizabeth Smart kidnapper suffers seizure in court.” By taking the article in this direction, it seems to imply a connection between seizures and “mental illness” or “psychosis disorders” which is not the case.

I do not and will not engage in armchair diagnosing of Mitchell—that is no place of mine. That is between Mitchell and his doctor.

My problem is with the tendency to equate bad deeds, such as kidnapping and rape, to mental illness, thereby implying that anyone with mental or psychological problems is a bad person—a ticking time bomb, if you will. It marginalizes those of us with epilepsy, depression, bipolar disorder, and many others, for no good reason other than different=bad. In fact, throughout much of history, those who were different were often deemed “mad” and power was wrested from them, and they were killed, or left to rot in a hospital, prison, or later, a “mental institution.”[i]

This also implies that if you do something “bad” then you must be “mad.” It implies that no good, normal person could or would ever do bad or terrible things—so if one could prove one was normal, then they could not possibly be guilty of any crime or wrongdoing. The wolf in sheep’s clothing, if you will, feeds and benefits off this idea.

This line of thinking is intellectually lazy, it is bigoted, and it has dire consequences for society.

Mitchell did a horrible thing to Elizabeth Smart, and I hope she will find peace, closure, and healing. But Mitchell’s deed does not make him mentally ill. If he does suffer from a “delusional disorder” or some other mental illness, that mental disorder does not make him a bad person. If he is ill, I hope he is able to find a way to live peacefully with his disorder—whether or not he accepts treatment. As of now, he has been deemed competent to stand trial, so he will face justice for his deed—but only that. His deeds. Not his illness.

[i] And this is why I’m skeptical of a family history of mental illness—because science and medicine wasn’t where it is today, and so differing from cultural and religious norms were often used in lieu of science. The victors write the history, so we have no objective basis for diagnosing people long dead of mental disorders.

A Glimpse of an Employed Epileptic

When I started my new job[1] back in August, I was excited—I was getting health insurance! Yay! The insurance company couldn’t deny me based on my epilepsy! Yay! Then I started to fill out the paperwork, and read all the information packets. And guess what I saw? That any pre-existing condition-related doctor’s visits, medication, etc wouldn’t be covered for a year. A year.

When I informed my manager about my epilepsy, and told them that if I had a seizure, I’d have to sleep it off, therefore possibly missing a day of work, and asked what I needed to do—they told me I needed to bring a doctor’s note[2] (with that doctor I can’t see about my epilepsy with my insurance for a year), or call in and take a point. A point is supposed to be a penalty for not coming to work just for funsies. No mention of making up that work once I recovered.

When I told my supervisor that if I had a seizure at work, I do not want an ambulance called unless I was bleeding from somewhere I shouldn’t be, and to instead call my emergency contact to take me home, I was told they’d call one anyway because “if you have a seizure I’ll probably freak out.”

Oh, the equality is overbearing. The sensitivity to the neurologically atypical is gut-wrenching.

Welcome to America.

Now, before I get any lectures on How The Real (American) World Works, let me say: I know. I’m saying it’s wrong. I’m saying that the hoops one has to jump through, if neurologically atypical as I am, just to ensure you’re not fired because of being neurologically atypical, is ridiculous. That I should first have to reveal my medical history (which is private) to my managers, then explain to them what epilepsy is, THEN explain how it affects me, to finally say that it might prevent me from coming into work someday in the future, maybe, is ridiculous. That my supervisor grills me on what it’s like, out of curiosity, with several co-workers in earshot, is insensitive and, well, ridiculous. That I’m grilled on what medications I’m taking, and gosh, why don’t I have a medical bracelet? Is ridiculous.

In short, I’m saying the insensitivity, the ignorance, and the spectacle made out of my disease is appalling, and that it should not be so.

[1] An office job

[2] An epileptic doesn’t need to see a doctor every time zie has a seizure.