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.
FuckAbility™ Research Council to Speechless: You Had Us At “Trash Ramp”
Matt Damon calls on Speechless producers to be more inclusive of nondisabled white male actors
Frankly, the Speechless pilot could end with Minnie Driver’s character pulling a Divine and it would simply convey the amount of shit people with disabilities and their families are expected to eat every day.
(Highway, Heaven) After a cruel, cruel summer that included When Khaleesi Met Romanticide and a profoundly fucked up little number called Don’t Breathe, the autumn winds are blowing our sad, tragic little skirts right up with Speechless.
A few weeks ago, Alice Wong asked me, a fellow person living with a progressive neuromuscular disease (NMD), how I would respond to someone with an NMD who was saying they wanted to commit suicide. This was my answer.
Do people living with disabilities also experience depression? Yes. Anyone can have depression and you are no different in deserving treatment and relief for it. Thinking that you alone can help yourself with your depression through suicide is a tragic form of “overcoming.”
If finding the right treatment for your depression proves difficult, it’s not proof that your disability makes you different from other people.
It’s not proof that, for you, suicide is a rational choice. No. It’s proof that depression is difficult to treat for vast numbers of people. Like you.
It’s free and confidential to contact the National Suicide Prevention Lifeline anytime. You are not a medical prognosis or a checklist of functional abilities. You’re a person. Who is in terrible pain now and deserves relief.
If you’re in crisis:
For the first time in my 50 years on July 28, 2016, I heard my disabled childhood described through the civil rights lens by a presidential candidate, Hillary Clinton. She centered my childhood where I would have: on education and public schools.
It’s difficult to explain the magnitude of hearing my disability identity described in the language of equal rights and not special needs. As meaningful as it was to see a woman accepting the nomination, the tectonic shift I felt was in Clinton accepting me as I am: as a person who deserves respect and can serve the greater good. Not as a diagnosis who has nothing to give or a vote to cast. Certainly not as a target to mock whose vote is irrelevant. Because I have gained my right to an education, I gladly accept the responsibility that comes with answering these two questions:
In using the education that Hillary Clinton and other disability rights advocates fought for, I have a shot at becoming a role model who works together with others rather than being labeled an “inspiration” who is kept at a distance.
The story of childhood is the story of education. The access to and quality of education determines whether that story is one you want to retell over and over, or one that threatens to scare you into silence. The school-to-prison pipeline and the violence that students of color with disabilities experience in the name of “discipline” are the education issues that need urgent action today. I appreciate Clinton’s past work because I see potential in it for protecting the rights of more children and youth with disabilities.
Crip lit entertains you. It doesn’t explain disability.
What is it like to live with a disability? What do I want other people — younger people — to know? What do I see ahead? What are the ethical boundaries for telling other people’s stories?
These are some of the excellent questions posed by DearJulianna, #CrippingtheMighty, and #TheFutureIsDisabled. (Carrie Ann Lucas’s blog post currently carries the coveted — by me — title of, The Blog Post I Love Because It’s So Well-Written I No Longer Feel Like I Need to Take On This Difficult Topic Until I Want To.) People with disabilities are writing, reading, producing, performing, and arguing like nothing I’ve witnessed in 50 years. It’s wonderful and it makes me want to hide out under a blanket for a while and just let my mind wander.
When I can get enough mind-wandering time clocked, I work through stories that are the made-up kind: fiction. They’re stories that are “about” my life the way jambalaya is “about” sausage, rice, and a whole bunch of other stuff. I can’t seem to tell the truth without lying, which is “fiction” in a nutshell and why Hermes, that liar (and inventor of lyres), is the god of storytelling.
In terms of privacy, even badly written fiction is different from posting a detailed or disparaging description of your child who has a disability. But in thinking about who gets to write about who, and how, and why, I remembered a problem I’d had with conveying certain information about my main character, an adult woman with a disability. Me! Not me!