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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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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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 Crip Sense: “I See Women and Girls With Disabilities. In Your Organizations.”

In my particular line of work — fundraising — I have the “challenge” of making the case for funding cross-disability civil rights work from institutional funders who are still predominately stuck in the disability = tragedy trope.
I need allies from outside the cross-disability communities because that’s how philanthropy — and everything else — works: it’s who you have relationships with, who you can ask for help, give help to.

I was really excited about closing out Women’s History Month this year by developing  and delivering an interactive workshop, “Building Your Organization’s Capacity to Ally With Girls Who Have Disabilities: Principles to Practices” for fellow (sister?) Alliance for Girls members, as part of my work at DREDF.  (To the members who attended — you were GREAT participants!) Based on issues I’d recently written about, I wanted to call it “The Crip Sense or ‘I See Women and Girls With Disabilities. In Your Organizations.’” (Scroll down for 3 “posters” of workshop content.)

I said that part of having The Crip Sense is seeing things that are painful:
  • Disability human and civil rights violations. Way too many of them.
  • Violence against disabled children and adults – especially people of color (PoC) with invisible disabilities — even by caregivers, school personnel, and law enforcement officers, and that such violence at home, in school, and on the street is excused or rationalized.
  • Girls who have internalized stigma that makes it feel “normal” to disown, downplay, or deny having a disability.
  • Girls who hear – even from some disabled people – that “initiative” and “personal responsibility” can defeat systemic barriers born of — and well-maintained by — prejudice, and that they’ve failed if they’re defeated by rigged systems.

Color photo of a fortune cookie that reads,

Why This Workshop, Why Now

In 2017, an inclusive movement includes cross-disability civil rights organizations, as a given.

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