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

could be worse

[ivanoma.livejournal.com]

My friend's mongoloid godson's twin sister has quite a few allergies since birth, among them or perhaps a separate condition is her inability to have meat of any kind...or else she dies. Part of her condition is she must also have it organic all the way. My friend's mother is also chemically sensitive. She keeps cats who are as sensitive as sentinels for early warning purposes(she gets to have extra pets and pay a lower pet deposit as they classify just like seeing eye dogs.) I generally give organic snacks as gifts because the only sorts of stuff she can eat cost 2-4 times more than what I buy. She is so badly off for so long, Disney resorts call her as the expert as to what sort of things they need to do in order to maintain compliance with the disability laws that affect businesses like theirs. The conditions these people live with aren't even their fault...a pest control company mixed things wrong and accidentally made nerve gas in her apartment. Her unborn son failed to develop eyes or a complete digestive system and had to be aborted. she would never be able to have any others after that. She is still in a lawsuit 18 years later now in no small part do to the fact that the official responsible for making certain that this sort of thing doesn't happen without severe penalties owns the company in question...and keeps getting re-elected.

[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.