I represented DREDF in this conversation but it’s stirred up a big case of the feels about “choice” and being a liberal woman writer with a congenital disability, and the context this establishes for storytelling, and resisting and persisting. I continue, after 30 years of adult activism, to feel like I have an early shift of ableism — prepping the world to accept that I exist — while my nondisabled fellow human resisters and persisters get to sleep in. And if I weren’t white, conventionally educated, cis gendered, unthreateningly queer, and had all sorts of middle-class, married advantages, I’d probably never sleep at all. Image courtesy of the Disability Visibility Project.
Step 1: I Exist!
As many people who know me know — all too well — I’ve been writing a novel* for the past 400 years or so. The novel, The Cure for Gretchen Lowe, is the exploration of a what-if premise: What if a congenitally disabled woman were offered an experimental therapy that would cure her? The cure itself, Genetic Reparative Therapy (GRT), was never the point of the story because biomedical research, real or invented, never seemed like the most interesting part of the story. What I’ve been stuck on, like an oyster (or barnacle), since the idea first irritated my imagination was how I saw that my character’s situation began as a will-she-or-won’t-she question. From what I’ve observed in 50+ years of congenitally disabled life, that question isn’t typically a question to The Average Reader. “Well, of course a person like that would want GRT!”
I’ve considered that point of view quite a bit — 400 years allows for that — and much more seriously than I make it sound here. But that assumption also irritated me mightily: As a lifelong like-that-ter, I’ve run up against a lot of nonconsensual of-coursing when it comes to my bioethical choices. Simply opening my story — which I refer to as being “CripLit” — with a genuine choice, not a pro forma one, felt like I wrote in letters across the sky: I EXIST.
The only disability in life is a bad attitude…until you factor in #inspirationporn like, “Love is…walking,” that Leo Burnett and Shriners’ thought was a super-appropriate slogan for a kid in a wheelchair to say. For Shriners’ fundraising stragedy campaign. For $$.
Sure, I’ve been critical of the charity fundraising model. Sure, I’ve had some harsh things to say about inspiration porn. And, yes, I’ve argued that children with disabilities can be valuable comestibles. None of that precludes me from providing a valuable Professional Fundraiser’s Assessment of the Shriners’ commercial above:
The problem with this ad for Shriners’ Hospital is that it doesn’t go far enough. It goes right up to the edge and hesitates.
Bottom line: If you’re not inspiring AND terrifying your audience, they’re not hearing why they should give to you to make you stop talking.
My 3-Point Pointers for Insperrifying™ Medical-Model Messaging (3M™)
- Love = Cure. You’ve laid the groundwork, now close the deal. You’ve got the kids believing love is about walking. Now have them say what you really mean: “My parents will hate me if I can’t walk!”
- Kids ♥ Begging. Whether it’s for a puppy or surgery, kids are world-class chin-tremblers. Yet you haven’t even given them the tools they need. What, Shriners’ can’t afford a couple of tin cups?
- Follow Your Non-Bliss. On-camera talent should appear in naturalistic settings that echo your message of disability = despair. A seclusion room in a badly run public school. Waiting at a stop where the bus rolls by them. Watching fundraising commercials for people “like that.”
Remember: Real World Fundraising™ measures itself on the Jerry Scale. On the Jerry Scale you have to scare to score!
Wishing you all a very happy #GivingTuesday on December 1st!
Far from protesting, many an Infirm Child’s eyes shine with an Inner Light at mention of this most noble purpose their otherwise wasted bodies can serve. There are Disabled Children not as wholly selfish as their Disabled brethren who would demand survival, even education and employment, at the expense of their Normal brothers. But good it is to look upon the Infirm Child going cheerfully to the cook-pot to feed the strength of the Normal Child whose rude health is testament to his good character and his Creator’s Pleasure in him.
UPDATE: (Salem Village, Massachussetts Bay Colony, January 18, 1617,) Goody DeVos, beloved of GOD as evidenced by her billions, testifying before Congress about the importance of parents being able to choose their disabled children’s schools without mentioning either that: 1) some parents would choose such things as a ducking stool to see if their child’s disability is a “real” one; or 2) choosing that charter dame school the next colony over means they lose their due process rights if the charter school beats their kid for not being able to read his horn book or whatever. Photo courtefy of Salon.
Nature and her master THE LORD have blessed the Educator with ease in beginning any recipe for inclusion, ‘Step One of How to Cook a Disabled Child: Catch a disabled child.’ Truly, the Infirm Child’s emfeeblement makes him an ideal choice for the inexperienced Educator new to his twin masters Efficiency and Economy.
When you have your specimen, consider your various cooking options as well as how many Normal Children you have to feed. Is the Infirm Child plump and well-larded? If this be the case, wrap the lad’s loin with the finest bacon and roast in a hot oven, a dish fit to serve at term’s end to celebrate the holiday.