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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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

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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And Now a Word from the FuckAbility™ Research Council: RJ Mitte In as Presenter at the Palme d’Visage Awards

RJ Mitte Will Present at the 2019 Palme d’Visage Awards, Signaling That The Upside Will Win Most Condescending

Matt Damon, Master of Diversity, Hails RJ Mitte’s Commitment to Avoiding Discussion About The Upside‘s Discriminatory Casting Practices and His Unstinting Support for the Status Quo That Blocks Disabled Actors From Competing for Roles

(Battlecreek, MI) NoVariety announced today that RJ Mitte will present the inaugural “RJ Mitte Award for Most Half-Assed Casting in a Film Depicting a Disabled Character.” Emma Stone will portray RJ Mitte at the March awards ceremony in beautiful downtown Switzerland now that Jennifer Lawrence, who had been a lock, became uncastable after a recent injury left her with difficulty walking.


“I can’t imagine a situation where I’d tell Bryan — who’s been like a father to me — that, while I know he cares about me and wants to help me, I can’t let him use that as an excuse for a business decision that hurts others.”

Mitte has been vocal on social media about his support of Bryan Cranston’s casting in The Upside. “Disability stories need to be told and films like this wouldn’t be made without a star like Bryan Cranston. Conflicting messages about inclusion that reach as many people as we can are how we change mindsets and remove the stigmas around disabilities.  As a disabled actor, I am proud of his performance in The Upside and I can’t wait to see Emma Stone’s portrayal of me presenting him with the award.” Continue reading

TryHarder™ Magazine: The So You Wanna Use the R-Word for Comedic Effect Issue

TryHarder™ Magazine: The Magazine for People Who Need to Try Harder, 2 centsIssue No. 4: The It’s Not Just That You Used a Slur, It’s That You Doubled-Down on Your Offensive Language Edition

In which The Crip responds to a Daily Kos writer’s post and subsequent comments America’s Next Top Jackhole, Louis CK, who ordinarily one would have thought came from was Republican author, given the writer’s intransigence to making a change that was so easy, obvious, and respectful. would shut the fuck up, in general, and definitely about disabled people, in particular.

The Top 5 Reasons Why Everyone (Me) Knows You Never Use the R-Word in a Careless and Lazy Fashion and Also Just Don’t Use It

1. Presumably, you want people to respond to the actual topic of your article, which you’ll notice I’m not doing.

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And Now a Word from the FuckAbility™ Research Council on “The Upside”: For Your Condescension

A photo of a janky wheelchair overlaid with: FOR YOUR CONDESCENION, When it comes to the 2019 Palme d'Visage Award for "Most Half-Assed Casting in a Film Depicting a Disabled Character," the Choice is Clear....THE WHEELCHAIR in The Upside © 2019 talesfromthecrip.org

Going to see The Upside?

Don’t miss an opportunity to share your feelings about the film’s bold casting decisions. #CastBoldly

Print the graphic above and hand it out at the theater!

Sample messages for sharing your excitement:

Access icon in blue and white“I haven’t seen such bold half-assed casting like this since last year’s Palme d’Visage winner gave us A Pair of Raybans as the lead in Blind: Based on a Mall Store Called The Sun-Glass Hut by The Food Court.”

Access icon in blue and white“Do you think Streep could do what The Wheelchair did: Cradle Cranston’s ass while wordlessly conveying every stereotypical cliche about living with a disability? I scoff at that!”

Access icon in blue and whiteMatt Damon said it was okay!”

See you in beautiful downtown Switzerland in March for the Palme d’Visage Awards!


FuckAbility™ Research Council (FARC) is a piece of letterhead housed on the Tales From the Crip website. FARC’s mission is to raise awareness of hollywood’s lack of awareness that many disabled adults fuck in groups of one or more. All views expressed are subject to change and denial.