I Remember This: I Find Out I Don’t Have Cerebral Palsy. I Have Muscular Dystrophy. Probably.

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 1975 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 to 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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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: A Mother’s Day Card From Alice

Another Excerpt from: There's No Cure for Gretchen Lowe, a novelAlice’s schoolteacher handwriting greeted Gretchen when she flipped through the mail that evening. It was a floridly pious Mother’s Day card with a letter enclosed. Her mother must have sent it right after Gretchen had called about the board meeting fiasco. Oh Alice, Gretchen snorted pleasurably. I couldn’t have picked a better card myself.

Underneath the card’s summary appreciation for maternal sacrifices, physical and emotional, Alice had written, “Thought you might like to see the enclosed item right now. I think it confirms that we are related. I cannot take credit for why you are who you are but I did have a hand in it. Then again, you were always a rotten child. Not that I had anything to do with that. Love, Mom.
The letter was her mother’s same handwriting.  Cheered, Gretchen set to reading it. It was dated from May 1970 and addressed to a Desmond Wallace, Chair of Fundraising Operations for the National Cerebral Palsy Association. Oh dear.

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The Top 10 Reasons Why Medically Stunting the Growth of Girls With Severe Disabilities Continues To Be an Ethical and Well-Thought-Out Solution To the Problem of Financially Stunting Public Funding for In-Home Social Services, Which Is…Huh, How ‘Bout That.

5. Because we need to support the decisions of overburdened parents/caregivers of severely disabled children right up until the time when their decisions require public funding for adequate and affordable in-home supports.

It’s feels like it’s 2007 all over again, what with “growth-attenuation therapy” for severely disabled children – many of whom are girls – being back in the news.  And today, just like then, people with disabilities are trying to make this all about them. But there’s no unrecognized ableism framing this “ethical debate.” It’s not as though fearful parents who really do care about their children — who really are severely disabled — are being given an absurd and brutal choice:

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