I Remember This: The Girls With the Black Bars Over Their Faces

2 side by sde b/w photos of a young white woman wearing only a Milwaukee back brace, with black bars covering her eyes and breasts. On the left is her back, on the right, she's in profile.

Source: researchgate.net: (Reprinted from Blount WP, Schmidt AC, Bidwell RG. Making the Milwaukee brace. J Bone Joint Surg Am. 1958;40:526–528 with permission from Journal of Bone and Joint Surgery, Inc., Needham, MA.)


1977. I am 11 years old. I am half-naked in a crowded hospital hallway.

I’ve gotten ten steps down the hall from the exam room where my mother is waiting before I fully appreciate that my fish-white thighs are fully on display.
My thighs are doing their best to walk the rest of me onward. The rest of me is wearing underpants, an all-too-sheer white t-shirt, and a Milwaukee back-brace.
The words, You are half-naked in public, explode in my mind like a bad-dream bomb.
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I Remember This: I See a Disabled Person

Cartoonized image of Ingrid Tischer's eyes in close-up.I remember this:

I am eight. I am waiting alone for the little bus inside the doors of my school, White Sulphur Springs Elementary, in the Catskills. I glimpse a small girl not  far away – tired, leaning against the wall like it was holding her up. Seeing her, I feel a sorrow for her. The sorrow is bigger than me, it blooms out of my stomach and swallows me whole like a monstrous flower.  In the next instant, I see that I’m looking at myself in the reflection of a display cabinet’s glass doors. I am angry at myself – first, for letting myself look like that  – then, for looking like that. Then I know that I will never be faster than seeing is. It can get even me. This means that while I’ll empathize with strangers who feel sorry for me in decades to come – having done it myself – I’ll want them to snap out of it, too – as I did.

I’ve been the only (identified) disabled student in my classes in five schools since first grade, I see children “like me” at this clinic and on tv once a year during a telethon that makes me cringe. That’s it. I have a pronounced lack of images to work with and an inability to decipher the ones I do see.


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I Remember This: I Am Thirteen and in the Recovery Room After Spinal Fusion Surgery

Cover of Mythology by Edith HamiltonYou are flat on your back under a glaring light. The bed is hard. It hurts. You don’t move because it doesn’t occur to you to do so, it’s so far beyond you. Each part of you that registers – reports in, so to speak – registers through pain. You body is mapped as a topography of pain. No face or distinguishing characteristics. You are a ground-colored shape dotted with points of glaring, popping pain. Where your head aches on the stone-stab mattress, where the gravel of the sheet is under your arms, where it rasps all along the tube that snakes down your throat, to an unidentifiable pressure on your front, low down.
Your back. Oh. Your back is a barely contained thorn patch in a mad stabber’s arsenal.
You’re not alone. There are voices, professional ones. But no one is talking to you.
There is a nurse above you, meeting your eyes. Her head blocks the light. “You’re awake,” she says. “You’re in the recovery room.”
You make a sound. It sounds dreadful. The first sound Frankenstein made on his slab. The thought of the monster brings back your past, all there was before this light, this slab, this pain. And the face in your reunion with memory itself is: Gene Wilder in Young Frankenstein.
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My FEDup™ Rant: I Have Feelings About My Body Being Regarded As a Tear-Down in Your Genetic Gentrification Scheme

A composite image of a color photo of the author at 5 years old: a blonde, white girl in a rainbow skirt and vest, and a purple sash with INGRID in gold glitter, clutching a diploma and bookbag. Above her is a CONDEMNED banner graphic. To her left, a sign reading Danger, Biological Hazard; to her right, a vintage sign of a strong man on a field, Only HEALTHY Seed Must Be Sown! Check the Seeds of Hereditary Disease and Unfitness By Eugenics

 

I’m FEDup with feeling like my feelings aren’t really essential components of conversations about bioethics.
About a year ago, in the midst of a cross-disability Human Genetic Engineering webinar that I was a support staff person for, one (not all) of the panelists named several disabilities, some congenital, as examples where you’d want HGE to be available. One of the conditions named was muscular dystrophy, the umbrella term that my own unnamed disorder falls under. I took the panelist’s choice to name each to mean that they were conditions that are particularly undesirable. There was a vague mention of parents opting out of children who have these specific conditions. (I’m in favor of enthusiastic consent for all parenting, including the parenting of disabled children. It’s the singling out of only certain children that needs to be addressed very carefully.)  
I had some feelings about that, which I have since translated into the image of the tear-down in the gentrifying neighborhood. I explained my feelings in the Q&A – though I didn’t have questions, really — and then I felt afterwards like I’d made it weird. It was a murky boundary thing; if the panelist had mentioned his own disability rather than mine, I might have disagreed but I wouldn’t have had such an emotional reaction.
It may not be a terribly marketable skill but exploring and describing the emotional landscape of being my particular type of disabled person is what I know how to do, though I usually think fiction — #criplit, specifically — is better suited to the task than anything expository. There is emotional terrain in the development of bioethical and other disability policy, law, and research — as there is in the policy, the legal analyses, the studies, and all of the work-product items — and it deserves representation. That’s what I’m trying to do here.
I can do it because of privilege: I’m white, have a college degree, and the time/money to write this; this all adds up to a baseline expectation that the world will agree my feelings matter. I also grew up in a family that, however messed up, was an oasis from ableist BS and — most importantly — treated my feelings as valuable and in need of care.

But the episode has stuck with me, I think, because it was a last straw kind of thing after nearly five decades of being bombarded with messages from random childhood people, telethons, and the famously rational that I will never, ever be envied.


One of the webinar folks sought me out at another event subsequently and was kind enough to say that my comment had value. But the episode has stuck with me, I think, because it was a last straw kind of thing after nearly five decades of being bombarded with messages from random childhood people, telethons, and the famously rational that I will never, ever be envied. I was simply not prepared to get hauled into a disability justice-branded webinar as Disaster Exhibit A while I was sitting at my DREDF desk.
If I could respond to the panelist, here’s what I’d say: “To be very clear: Difference in emotional reactions is a good thing, I’m not pleading for conformity here. But I have a problem when feelings aren’t identified as such. I get it — muscular dystrophy is frightening or repugnant or whatever to you. Some folks with MD hate it. But it’s not a given. It’s a feeling. And you presented your feeling as a fact. You’re regarded as a bioethics expert, plus you’re disabled yourself. That’s why you harrowed up my feelings so deeply.”
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My FEDup™ Rant: Oh, Goody, a Debate About Whether I Should Be Allowed to Breed

FED UP TM Ideas worth ranting about

 

I’m FEDup with “debates” about my sexuality, my reproductive choices, my existence.  There is so much to love about social media and one of those reasons is the experience of going on Twitter to quickly check my popularity see what I can do to better the world and finding an objective discussion underway regarding whether someone like me should be “allowed” to reproduce. The person who asked the question may not even understand that, by placing my reproductive choices and existence within the frame of public approval, they’ve reinforced bias against me, a woman with a congenital disability who lives “like that.” Check out another guy who asks rational questions just like you did.


Screenshot of "Should disabled people be allowed to have children even if there is a risk of passing on a medical condition? Discuss. 1:41 AM - 21 Fed 2019


I’m not answering on Twitter because — unlike when I was in my 20s, 30s, 40’s — I no longer feel required to justify my existence just because somebody decided to have an “objective” “discussion” about whether I’m really worth the hassle.

Yup, even when your purpose is ostensibly positive, how you frame the conversation matters. Growing up with muscular dystrophy means I’ve heard more times than you can imagine that my particular disability places me — of course! — on The List of Lives That Suck. What’s newer or less personal to you is very different to me as a woman with a congenital disability. So here’s an excerpt from a longer past post that elucidates where I’m coming from. Continue reading