Shit TAB People Say

“X disability is worse than yours.”

Really? And you know this…how?

Let me tell you something: Don’t try to measure the “badness” of shit you have never experienced. Don’t try to tell me how my own experiences measure up against someone else’s experience.

Contrary to what you might think, those of us with disabilites don’t sit around and compare our struggles in some sort of pissing contest.

Don’t you dare try to impose that on us.

We have enough to deal with. We get enough crap from TABs already.

I couldn’t even try to compare my epilepsy with someone else’s disability. Not even if they also had epilepsy-and a friend of mine does. Our experiences are different. Our treatments are different. It has impacted our lives in different ways. None of those differences mean that she has it worse than I do, or that I have it worse than she does.

We’ve bonded because of our mutual understanding, something that an able-bodied person could never have.

You can tell us nothing.

Check your privilege sometime, before I seize all over you.

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.

Traveling While Differently-Abled

As I write this I’m in the backseat of a friend’s SUV, somewhere on the coast of California. I love traveling. I love that feeling of “Wow. I’m in [place] right now” and looking at the mountains, the ocean, the restaurants, and man-made sights. Traveling is a huge privilege, class-wise and abled-bodied wise. The extra things the differently abled have to consider living day-to-day obviously extends to travel as well, though, persons with abled-bodied don’t even consider it.

Plenty of medication has to be packed, the traveling/touring schedule has to be accommodated to fit certain needs, and environmental factors have to be considered. If your traveling partners are all abled-bodied, there’s also the burden of their perceived burden of having to accommodate your needs. All of these things take the whimsical, carefree nature out of traveling. They add stress.

Part of the fun of traveling is seeing new places, but for the differently-abled, that has a downside. At home, we know which places are friendly to our needs, and which places are not. Our doctors are close at hand, as are our pharmacies. Our living spaces at home are already suited to our needs. We have a support system of family, friends, loved ones at home. None of this is so when you go out of town.

When traveling with companions that are all visibly different from you, locals (or other travelers) want to know why. People like to hear the traveler’s story—where you’re from and why you’re there. When you’re visibly different (in my case the only civilian) they want to know why you’re different (why I’m not in the military). And it hurts. We are constantly reminded of our difference, and these questions are only another slap in the face. These questioners are genuinely curious, but that doesn’t change the feeling one gets when you have to endure these questions. I was already very acutely aware of my civilian status. When my traveling companions are in uniform it is all the more so.

See, I desperately wanted to be in the military. My dream, from the age of thirteen, was to join the Air Force and become a pilot. I wanted to wear the uniform. I wanted to serve my country. I joined Civil Air Patrol at the age of fourteen to better my chances, and I loved it. I loved the military culture. I loved how the uniform made me feel. I love the feeling of serving. I loved that respect (that a woman, and a differently-abled one, gets all too rarely). The uniform masked my womanness, the things that signaled my second-class status, and my accomplishments were born right on my uniform, unable to be disputed by others. My accomplishments were the first thing others saw.

So when I was asked about my difference, it was a crushing blow. I had to, again, for the thousandth time, decide if I was going to be “polite” aka a dutiful broken body and disclose my disability, or if I was going to be “rude,” and not satisfy the local’s curiosity, and therefore be an uppity broken body instead. Making that decision at home, in my comfort zone, is one thing. Making it in a new place, where I am merely a visitor and am completely unfamiliar with, is entirely another. It reminded me that my body can’t do the things I want to do, and that my dream is forever taken from me. They tell you as a child you can be anything you want to be, do anything you want to do. For the differently-abled, our disability tells us, each minute of every day: NO YOU CAN’T.

I’m having a wonderful time. I celebrated my birthday here yesterday, and I did not regret being away from home. But for me, and others like me, there’s always something lurking at the back of the mind.

Special Rights in a “Normal” world

During a conversation with a friend last night, my epilepsy came up. We were talking about housing, and something my friend said really struck me.

“You know, you probably could have gotten private [on-campus] housing because of your epilepsy.”

I was dumbfounded for a moment, stumbling over my words. While I didn’t get angry or upset, those words resonated, and they bothered me. My friend had only the best intentions. I only replied that I hadn’t been comfortable disclosing my medical issue, and that it’s better that I live with someone anyway.

But that’s not the point. I had never, ever thought about using my epilepsy for personal gain, and basically, that’s what that would be. I have no need of having a private room.

That conversation was my first experience with someone focusing on my epilepsy as a means for gain or personal benefit. Differently-abled people experience this all the time from abled individuals. Accommodations for us are often labeled “special rights.” See, we get to sit down all day! We get deadlines extended! Private housing! Aren’t all these things great?

No.

“Special rights” is a term I view with contempt. It’s a malicious, inconsiderate, ignorant, and hateful term. We call ourselves differently-abled in a world that views us as other. We call ourselves differently abled because the world views us as other. We’re some kind of anomaly. We’re not normal. The world isn’t constructed with us in mind. Hence, the need for “special accommodations” for us. If this world was truly one that accepted people in all their glorious diversity, “normal” would be an extinct, useless word, and accommodations wouldn’t need to be made. Our cities, homes, and schools would be constructed with everyone in mind. As it is, these places are constructed with only the “normal” in mind, and if we’re lucky, the rest of us are tossed a breadcrumb or two.

That is not to say, that everyone who says things like this are hateful. My friend is not hateful. He is equally contemptuous of the term “special rights.” But he is privileged in a few ways, and one of them is his ablism. Many incidents like mine are due to ignorance. However, this is not to say that their ignorance is acceptable. Everyone should make an effort to understand, or at least empathize, with others who experience the world differently. This makes us better people, and it slowly improves the lives of Different People.

All of this to say, that to me, epilepsy is normal. I live my life around my epilepsy. I have no other choice. It is not “special” and it is not something I have for use to my benefit. It simply is.

I will take medication twice daily for the rest of my life. I will still have partial and grand mal seizures. Stress and sleep deprivation are triggers, and I cannot avoid those. Sometimes I have to stop and sleep. Sometimes that means I can’t meet deadlines, or fulfill commitments. That’s not a special right. That’s something I have to do to ensure my safety.

It’s not a special right. It simply is.

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