“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
Crip lit entertains you. It doesn’t explain disability.
As the West-Hesperidan Free Clinic’s Administrative Manager, Gretchen was the closest thing they had to fundraising staff now that their Director was on stress leave. She was supposed to represent the clinic at these house party things but here she was wandering on the edges, again, frankly worn out just from hauling herself in the door. Here was a question: Why does philanthropy so often require climbing stairs?
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 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:
The medical model of disability would keep us separated by diagnoses — different and disconnected — but the social model can bring us together — unique and united — through common concerns for our rights.