Top 10 Reasons Why Focusing on White Students With Disabilities Is Not Acceptable Policy Strategy. In DC or Anywhere.

Lisa Simpson throwing up her hands in horror

I used this very same image for another post and darned if it isn’t perfect for this one, too! Courtesy Fox.

10. Because it’s racist. (In a rush? You can stop here!)
9. Because education policy is entwined with juvenile justice and incarceration policies for students of color with disabilities and, funny thing, disabled advocates of color think those issues are kind of urgent.
8. Because we lack the nanotechnology to measure the moral integrity of erasing students of color with disabilities from the very issue that derails and destroys their lives in vastly disproportionate numbers.
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Before I Resist and Persist, I Must Exist: Bioethical Choice, Living “Like That,” and Working the Early Shift of Cleaning Up Ableist Narratives

filmdis-feb-18-1I 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.

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And Now a Word From the FuckAbilityTM Research Council on the Series #Speechless

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.

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Depression and Suicide Do Not Come Standard With the Progressive Disability Package

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.

Depression is not a standard feature of living with a neuromuscular disease (NMD) or other progressive disability.Depression & Suicide Do Not Come Standard With the Progressive Disability Package Depression is not a standard feature of living with a neuromuscular disease (NMD) or other progressive disability. 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. Like everybody else. If you're in crisis: 1-800-273-TALK (8255), 1-800-799-4TTY (4889) https://www.facebook.com/800273talk/ @800273TALK © 2016 talesfromthecripblog.com

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:

1-800-273-TALK (8255) , 1-800-799-4TTY (4889)
@800273TALK
 

#CripTheVote: You Have Hillary Clinton to Blame for This Blog Post

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:
What do I want to contribute to that is bigger than myself? What is it that I have to contribute?
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.
B/w photo of a little boy and younger girl sitting. Both smile and the boy is giving the girl a mischievous sideways glance.

The author and her older brother. Hillary Clinton said, “Every kid with a disability has the right to go to school.” That was an idea – not the law – in 1967 when this photo was taken. Three years later, this little girl could not start first grade at the neighborhood school where her older brother went. The school had a pet rabbit named Pugsly. Inclusion: DENIED. An education: DENIED. A bunny to pet: DENIED.

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Imagination and Empathy in the Age of Story-tellers With Disabilities

Crip Lit, Entertain. Don't explain. www.talesfromthecrip.orgWhat 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!

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