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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I Remember This: My Cerebral Palsy Is Cured By Muscular Dystrophy

My question seemed to make everyone relax. That made me, at 10, the person I wanted to be: In control, competent, helpful. This was difficult for them. It was a good thing for me to recognize and care about. But it was also an ability that helped me avoid feeling much of anything about the word “degenerative.”


By the time I was ten in early 1976, my father finally found a job he seemed likely to keep and we settled into our second tiny Connecticut town. I’d been to three public schools during fifth grade and was wearing the Milwaukee back-brace 23 hours a day. 
A color rendering of a large mid-century red brick building with a large rounded marquee over the entrance. It's placed on parkland.

The only picture of Newington Children’s Hospital I could find that resembles the building as I saw it in the 1970s after its renovation in 1968. This is a color rendering from eBay.

I’d started being seen in the pediatric neurology clinic at Newington Children’s Hospital, up by Hartford. (It had been formerly known by the delightful names Newington Home and Hospital for Crippled Children, as well as The Newington Home for Incurables.) Dr. Russman and Dr. Drennan, my neurologist and orthopedist, respectively, questioned my diagnosis of cerebral palsy atypical but continued the familiar routine of x-rays and exams every 3 months to monitor my always-worsening scoliosis.  
After growing the tissue from two nerve and muscle biopsies taken from my upper arm and calf (an experience that included my first overnight in a hospital, my first pre-procedure Valium, and hearing the words, “Skin stretcher, please,” uttered in connection with my own personal calf), they scheduled an appointment for the verdict. I was interested in a detached way; I was comfortable with not really being one thing or the other, medically. 

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I Remember This: What Getting My First Milwaukee Backbrace Was Like

I don’t ordinarily post memoir pieces but I have written a lot of first-person material as writing exercises. I’m posting one such piece now to share a little bit about being a very young disabled child.

Because my memories go back to the age of three and no farther, it seems as if I came into existence as I was (just barely) walking with my mother, and occasionally my father, through the long hallways of Rochester’s Strong Memorial Hospital around 1969.
In the confusion about what was wrong with me — cerebral palsy atypical was their best guess and a misdiagnosis until I was 11 — it must have been a strange relief to the neurologists and orthopedists to come upon scoliosis, a particular problem, discrete and treatable.
Color photo of a Milwaukee back-brace.

Milwaukee back-brace used to treat scoliosis, or curvature of the spine. Photo courtesy of the Smithsonian, National Museum of American History.

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There’s No Cure for Gretchen Lowe: Dignity Is No Accident(s)

Another Excerpt From There's No Cure for Gretchen Lowe a novelThere was a remarkable lack of public debate in San Francisco — or anywhere else — on Adult Diaper Dispensation (ADD). All costs were loudly underwritten by The Dignity Foundation, a charitable body dedicated to community development, medical research, K-12 education, and, now, small businesses hit by the “squat-by defecation” of serial defecants.

Would you like a TDF annual report? We have one for you right here. It makes no mention of our corporate sibling and sponsor, a disposable paper-goods manufacturer that is aging out of infant goods into a more mature market. Our Dignity Initiative public information campaign takes a broad-based social education approach to bring the public up to speed on what we can do — together — through top-level messaging in high-traffic spaces with framing that deploys innocuous word-play rather that blunt fear.
This top-level messaging was visible to all who cared to look out the car window at the blinking billboard near the off-ramp at Duboce. Dignity Is No Accident(s).
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There’s No Cure for Gretchen Lowe: The List of Lives That Suck

“I’m not really looking to change, Mom.”

“Your life could be easier if you didn’t have muscular dystrophy. What I would have given for this Genetic Reparative Therapy when you were little.”

Gretchen poured water in the coffee maker. “Yeah, I’m well aware that there’s a list out there of Lives That Suck and — of course! — my name is on it.”

Alice continued. “I can’t believe you would even consider not being part of this study.”

“Well, jeez, Mom, I have to consider not doing it.” Gretchen leaned against the counter. The machine hissed and steamed. “Remember when they wanted to fix my foot and didn’t mention they’d be removing half of it? Good thing we pressed for details on that one.”
Silence.
“I have to live with the results of this experiment – I will be the result of this experiment. And I gotta tell you – just because something can be done is not necessarily a good enough reason to do it.”

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A Crip in Philanthropy: The Best of Times, the Worst of Times

The Best of Times, the Worst of Times: This Moment in Disability, Dignity, and Human Rights

A Crip in PhilanthropyAn earlier version of these remarks was shared at Congregation Beth Jacob in Redwood City, California on March 3, 2018. I deeply appreciated their welcome when I was invited to address their community by Anne Cohen, an activist, disabled parent, and board member at the organization where I am Director of Development, Disability Rights Education & Defense Fund (DREDF) or, as Anne has dubbed it, “the ACLU of disability rights.” CBJ’s cross-disability access allowed me to take the first step in organizing community support: communicate.
I grew up with a disability, one that is genetic. I have been a plaintiff in an ADA access case here in California. It involved a bathroom. That required a lot of talking publicly about my using the bathroom. For disabled people like me – physically disabled — being disabled means never knowing where your next accessible public bathroom is. Today. Nearly thirty years after the ADA was passed. And keep in mind those 30 years coincide with my fundraising career in social justice non-profits and their philanthropic allies. Those are whole decades of trying my best to use empathy and imagination to shift that stubborn disability narrative that says I receive but can’t give. That disability is a health thing. That I need a cure when a toilet would be preferable. That I am charity, personified, not justice, denied.

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