Ooh, That Pesky Nexus of Health and Personal Identity

[attackfish]

Back when I was still young enough to register as a Girl Scout without checking the “adult” box, I attended a lot of Girl Scout leadership building events.  In all of them it seemed, the councilor had each of us introduce ourselves by saying our names and something about ourselves. The format, (hi, I’m so and so and so, and I’m a whatever it is I am) made for countless twelve step jokes.  It was all a bit pointless, because as everyone said their names, I was too busy trying to figure out what I was that day.  Most days I just settled on “Hi, I’m Fish, and I’m a writer.”

At one of these events, a girl who I had only spoken to briefly but who had a apparently overheard me telling my troop mates that I hated it when I couldn’t eat anything at the events asked me outright why I hadn’t said “hi, my name is Fish, and I have allergies.”  It hadn’t even occurred to me, that’s why.  I stammered and left, unable to think of anything to say to her, feeling demeaned and uncertain, and stunned.

I spent so much of my childhood trying to be anything other than just the weird girl with allergies, and in that moment, I felt as if I had failed.  If a girl who had only just met me and happened to overhear me talking to my friends could only remember me as Fish, the one with allergies, what was all my hard work about?

But of course, I knew I was more than just the girl with allergies.  My friends and parents knew I was more than just the girl with allergies.  I had shaped what I wanted to be from what I had, the same way anyone else did, and that’s all I could show to anyone.

Yes, I was born with numerous allergies that cause everything from hay fever and indigestion to seizures, anaphylaxis, and asthma.  Yes, I have a strange and complicated rotation diet free of almost all prepared food.  Yes, I give myself my own allergy shots every three days.  Yes, I get sick ridiculously often because my immune system doesn’t work right.  Yes I have to leave if someone is wearing perfume or hand lotion, and I have to take medication and go to bed if I’m anywhere near smoke.  Yes, I have to carry an oxygen tank wherever I go for emergencies.  I can’t deny any of this, nor can I deny that this has been a huge part of my life and that it has helped shape who I am.

What I can say however, is that it is not the sum total of who I am.  Instead, I am a writer, a jeweler, a student, a reader, a friend, a bad musician, a poet, a daughter, a sister, an aunt, a niece, a granddaughter, a Jew, a voter, a liberal, a feminist, a political activist, a gold award recipient, a volunteer, a Girl Scout, a political science major, a cook, a lover of food both homegrown and exotic, a pet owner, a fantasy lover, a musical lover, and a thousand other things, but I am not disabled.  I have a disability, and that’s very different.

Comments

[slythwolf.livejournal.com]

Hi, you linked me to this post in sarahtales's comments and I just wanted to say that it's awesome. When I was growing up I was the weird girl whose arms and legs didn't work right. Watch out, kids, Becky's not allowed to play crack-the-whip in gym class, because her joints might come apart. It isn't something anybody can ever tell by looking at me, and never has been, which has been interesting because in high school and college I put off quite a few possible dates at parties when they tried to pull me out of my chair to go dance and I screamed "NO! Don't do that, you'll dislocate my elbow!" I don't even know how true that is anymore because it's so ingrained in me to be careful; I haven't actually dislocated anything since I was a kid, but when I was three I was in twice in the same week having dislocated the same arm and the doctors thought my parents were abusing me. But it's never been something I think about consciously all the time--just a subconscious thing, don't hyperextend, don't hang from things, don't let anyone pull on your arms and legs. If you ask me to tell you something about myself I'll probably say, I'm a knitter, I'm a feminist, I like to read, I play video games, I make historical clothing. Those are the things that make me me. My body, my disability, is a part of me. That's all.

[attackfish.livejournal.com]

I have very weak decalcified bones, and I was in martial arts all through middle school and high school. My best friend and often partner in martial arts classes freaked out when my forearm actually bent around hers, the bone, not the elbow bent, I mean. I broke bones all the time, and coupled with the fact that my parents had to physically hold me down during my seizures so that I wouldn't hurt myself and I got a lot of bruises from this, a lot of the parents and teachers whispered about abuse. It sucks.

I get what you mean about the ingrained behaviors. I became so used to not doing things that might be a problem, that they became the habits of a lifetime. You and I both have invisible disabilities, which means our disabilities are more likely to be questioned or assumed not to exist. Well, now that I'm oxygen dependent, not so true for me anymore, but... so
We're more likely to get the weird looks. You look like you're fine, stop making a big deal out of everything!

[attackfish.livejournal.com]

Exactly. My disability is not me any more than my green eyes or the mole on my neck is me. it's just something I have to deal with, like car trouble.