“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.”
“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.”
Issue No. 1: Ableism Speaks
In which The Crip gives very special ableist remarks the 2¢ they deserve
“If you’ve got your health, you’ve got everything.”
Sure, health is important but if you’ve always lived with a chronic condition and/or a progressively degenerative one like I have, hearing this most common of platitudes leads to a waxy bummer build-up in the psyche. It is no pleasure to ponder the possibility that you regard me as having…nothing. Nor do I want to reprise my role on Emotional Labor: Special Cripple Unit where I tell myself you don’t actually mean that. I would prefer instead that people express gratitude for what health they have (I know health is a nice thing!) without making such a sweeping generalization about what a good quality of life requires.
Did You Know?
A disability does not necessarily mean “sick.” Unless you mean, “sick of discrimination.” Then — oh yeah. #CripTips
The Best of Times, the Worst of Times: This Moment in Disability, Dignity, and Human Rights
An 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.
And she had made sure the door was locked. She stood there, watching the gray-blue paint and listening to what was happening from within. At first, nothing. Then a murmuring confusion, then a rapid rise in decibel levels, quickly becoming Frank’s singular baritone summoning Gretchen. It didn’t occur to anyone that it was anything but an accident.
She waited and then knocked to get their attention.
“Hi!” she called. She had to knock harder because, as usual, they were still talking. “Hi, everybody! Are you ready to start the meeting?”
Alice’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.
Matt Damon, MD (Master of Diversity) Hails Diversity in Film; Would Probably Remember to Include Disability Diversity if Prompted. Diversity.
Tonight, in beautiful downtown Switzerland — the Alps of the louge of suicide, home of the valley of the shadow of dignity, where the hills aren’t really all that alive — the FuckAbility™ Research Council is presenting its coveted Palme d’Visage award for the most condescending portrayal of disability in film.
This year’s nominees amazed us with their ability to FINALLY include disabled characters who fucked in groups of one or more. But, as can so often happen after such sexy-times, we were left in the dark saying to some character we barely knew, “That’s it? Seriously? OK, you know what? Please go.”
And here are our nominees:
The Shape of Water, originally titled Children of a Lesser Black Lagoon, is about a lowly, lovely woman with no voice who is drawn into an inexplicable relationship with a sea-goblin that everyone is fascinated yet repelled by…but we’re not seeing how this is anything but an embarrassing obvious Weinsteinian fantasy wank.
Breathe is nominated, a film that our UK correspondent, The DisHon. Hilaria Mirth-Sitwell, gave one middle-finger up out of a possible two, because of the “twist” in which our hero decides to kill himself. It reminded us that the only thing more durable than the medical equipment he helped pioneer is the stigma of being dependent on another person.
Now this one is a shame, because Please Stand By‘s director, Ben Lewin, made the very down-to-earth fucking-while-disabled movie The Sessions, and as an openly disabled man, is aware of both disability culture and politics. Would that his earlier directness about interior character shaping responses to living with a disability had dropped by the set of Please Stand By. Because all we got here was a collection of external behaviors in search of a character, all stuck in a script full of strange contradictions and cliches. And there’s a screenplay. So. Was this some hackish meta-comment on how quirky and awkward screenplay-writers are, in general? We may never know. It’s an ouro-bouros of tropes. We do know this movie prompted a great idea for somebody’s future disability studies thesis: “The Role of Random Television References in Portrayals of Characters With Unspecified Neuroatypical Conditions-Slash-Identities: Being There, Rain Man, Please Stand By.”
Christ, this is tiring.
Our final nominee has been roundly criticized for its casting of sighted actors in a movie about blind characters. Ordinarily, we would be outraged, too. But the entire concept for this film is such a piece of shit, it’s hard to care. It began as a flawed pitch complete with a meet-crip — When Mr. Magoo Met Sally — then appears to have struck a highly lucrative deal with The Sunglass Hut that opened the door to Named Unblind Talent, i.e., Alec Baldwin and Demi Moore, and the film’s death spiral began before crashing clumsily into theaters like someone’s stereotypical picture of someone who is Blind.
And the most condescending portrayal of disability in film and winner of this year’s Palme d’ Visage goes to…
Not only for the aforementioned casting half-assery but for outstanding condescension in its very bones.
We bestow the Palme d’Visage on the Blind producers who couldn’t see the giant, flashing problems with their movie about being blind.
This is baked-in, reduce to a glaze, from-scratch condescension, folks. From it’s one-word title — we fucking HATE the phoned-in pretentiousness of one-word titles — that all-too-accurately signals that the movie will be about Doing Stuff While Blind. And not really interesting or terribly real stuff. Walking while blind! Using a white cane while blind! Wearing a blazer while blind! Getting read to while blind! Talking huskily about loss while blind! Because that’s what being blind is. It’s being blind. Being blind all the time. So very, very, very blind. Blind.
And, no, we never actually saw Blind. We figured if the producers could make a movie about people they haven’t seen, why did we need to see a movie before judging it?