Entitlement of the Able-Bodied

Today, my brother and I were talking about my recent post. His response to it was basically “Yeah, but some people need to know.”

Hmm.

Do they?

And who is they, exactly?

Do I have a legal obligation to share private medical information? No. Could it be a moral one? I don’t think so.

While others may be frightened or feel helpless while watching me actually be unconscious and helpless on the floor–I don’t believe I’m under a moral obligation to assuage an aspect of fear that others may feel if I have a seizure in their presence.

You see, no matter whether or not bystanders know I have epilepsy, I’m told it is incredibly scary to watch. The unknown is frightening, yes, but being helpless to prevent or stop a seizure is also frightening.

And, um, people? I’m the one that actually is helpless while having a seizure. You may feel helpless, but you are still conscious and have complete control over your body, yes?

Right. So forgive me if I’m not exactly sympathetic to your plight.

Despite that fact, I have on numerous occasions, been subjected to the indignation of others who felt they had a right to know. Not only that, but my failure to disclose my private medical information was a failing of mine, a betrayal of the highest order. And they. were. pissed.

I’ve been lectured, berated, abandoned while semi-conscious, told I’m no longer welcome in the home of a friend, threatened, and more.

That does not endear me to trust you with knowledge of my disability.

You are not entitled to anything. I am not morally, legally, or otherwise obligated to tell any one person a damn thing about me.

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About Brittany-Ann
Brittany-Ann is a proud, self-identified feminist with fictional tendencies. She currently writes for LouisvilleKY.com and moderates at My Fault I'm Female. She smokes camels, reads Dumas, and navigates a conservative state as "one of them darn liberals."

2 Responses to Entitlement of the Able-Bodied

  1. I agree that you have absolutely no obligation to tell anybody about your epilepsy. Just like I’m under no obligation to disclose my autism to anybody.

    But.

    I had a very close friend in college in Ukraine. She had epilepsy and never told anybody. One day in class people (including me) started pressing her about an opinion she had expressed. And she started to have a seizure. Not a single one of us out of a class of 140 had any idea what was going on. We called an ambulance (which in my country takes about an hour to show up). In the meanwhile, we put her on her back because we thought it was a good idea. Later, we learned that she could have choked on her own tongue.

    I accept the blame for not making her feel like she could share with me about her illness. We have now known each other for 16 years and she has never said the word “epilepsy” to me. She refers to it as “that thing.”

    My question is: can one do anything to make it easier to a person to disclose? We could have killed my friend by putting her on her back during a seizure. What can one do to facilitate disclosure? This is not about my right to her disclosure. I just don’t want to harm a person through my own ignorance.

    I have many more questions about epilepsy to ask in the future, if you don’t mind. I just want to educate myself.

    • Brittany-Ann says:

      First, the swallowing of the tongue thing is a myth. One’s tongue is attached to the bottom of the mouth–if you put a finger under your tongue you can feel the membrane there. I’ve always wondered how it is possible that this myth endures, since no one swallows their tongue while asleep. I hope you don’t think I’m being too harsh, but the advice commonly following this is to put something in our mouths to prevent it, and that’s dangerous–you could damage teeth, puncture our cheek, tongue, or throat if it’s a solid object, or we could (and probably would) choke on it. I’d like to smack whoever told you that.

      There’s nothing you can do to “make” someone disclose. I know that’s not exactly what you said, but that is your goal, there. For some, it’s our business and we’d rather not share. Sometimes it’s just not something we think about, since epilepsy is a neurological disorder that we can forget about sometimes. A lot of the time, if it’s been a while since the last seizure. That was the case for me with the friend that kicked me out of his home. I had a life, and at the time, it didn’t involve seizures, so I didn’t think about it. Sometimes, it’s a conscious decision–knowing affects the way people treat you. It’s hard for people to treat you like an adult when they think you’re going to drop at any moment (oi), and the infantalizing and control complexes gets old fast. We’ve had enough of it with family. Sometimes it can affect jobs, trips, education opportunities, etc.

      What you can do, though, is this: avoid the mother hen routine. Constant reminders to take medication, chiding for pushing herself or not sleeping enough, etc. If I’d known one of my coworkers was going to tell me every night to take my meds, I’d never have told her. I didn’t tell my professors on my study abroad trip because I’d knew they’d go parental and try to enforce a curfew, or other such stupidities. (post-seizure, they tried to force me to avoid alcohol–for some reason people like to think that’s a trigger. It’s not. Telling a grown woman she’s not allowed a glass of wine or a shot of tequila is very much going to piss her off, especially if you’re throwing them back yourself.)

      To use an example for this suggestion, the same friend who kicked me out of his home rather liked to judge people, i.e. “She should have known he was going to run back to his ex. I told her not to date him. She didn’t listen to me. I’m not sympathetic at all. She deserves what she got.” Very arrogant. Very obnoxious at times. He thought he knew best, and he would push that on you. That was probably one reason why I never thought to confide in him beforehand. He didn’t turn out that way with me, once he got over his self-righteous fit. But still.

      Mostly, be a good friend. Be a person worthy of trust. If I find it easy to talk to someone, I’m more likely to share. People that I judge to trust me to know my disorder and manage it, and to live my own life, will be trusted with that knowledge. Online, I’m very open. In “real life” I’m not going to walk up to someone, stick out my hand, and say “Hi, I’m Brittany-Ann. I have epilepsy.” (Some people think I should do this.) I write about it to educate and vent. I hope people will read this and avoid doing the things that have been done to me. I hope the people who have done these things to me read them and realize their mistake. To be completely honest, I hope some of them feel ashamed of themselves.

      I trust you. And you’re totally welcome to ask me anything you’d like, whether here, on another post, or more privately, if you’d like. I love your blog, and I enjoy our conversations, so much as comments back and forth can be. And if you were taught any other erroneous information, I very much want to give you the right information! (God, that tongue thing gets me every time!)

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