#CripLit Chapter 2: Funktionslust

 

"...—a word
  for what a sailboat knows, running before the wind—"
Charles Harper Webb, Funktionslust
 

Color photo of a Milwaukee back-brace.Alice was a tidy packer but there was no way she had fit all that into the one suitcase. Accepting the coffee her mother handed her, Gretchen waved off questions about her sore throat, eyes glued to the three objects lined up on the couch next to the sleeping Phoenicia. She rocked thoughtfully as Alice fretted about her being too ill for the clinic visit later in the day.

“Will you please relax, Mom? You’re looming. I’m fine.”

Alice tossed her the second gift, a dark blue paperback that landed on top of Dolly in Gretchen’s lap, making her gasp with laughter and ask, “Where did you find this?” But it was the third, the final gift, that made her sit back and say, “Oh good god.”

Continue reading

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.

Continue reading

HEY! YOU! MEDIA! Top 5 Notes to Anderson Cooper Regarding His 60 Minutes Hit Piece That I Shot B-Roll For Once Upon a Time When It Was Going To Be About the ADA’s 25th

60 Minutes Came to the Bay Area, birthplace of the Independent Living movement — a largely unknown chapter of US civil rights history — for footage for a piece about the 25th anniversary of the Americans with Disabilities Act (ADA).
They filmed me, moving about the Ed Roberts Campus (ERC), where I work at Disability Rights Education & Defense Fund (DREDF), an ERC founding partner.
They filmed other members of the cross-disability community.
And they used that footage to undermine and dishonor the law that made me — a woman with a disability — a full citizen in 1990.
60 Minutes came to OUR house, used us, and told the world people with disabilities are either dupes, greedy, or both.

Top 5 Notes to Anderson Cooper Regarding His 60 Minutes Hit Piece That I Shot B-Roll For Once Upon a Time When It Was Going To Be About the ADA’s 25th

Segment also provides excellent instruction in “How to add insult to injury” by failing to caption its online streaming video

1. If an access violation is so obvious it can be found through Google’s aerial view, then, yeah, I expect a business owner to be able to find it.

Continue reading

Sorrow, Bright-Eyed Now, After Meeting Her Death

for Belma González
I

BIPAPSTWhen Gretchen landed in the hospital again with pneumonia in 1993 she learned she had something called sleep apnea, plus chronic respiratory failure and minor heart damage that she, only 27, could expect to heal with proper treatment. At the first Wednesday morning meeting following her return to work a few weeks later, the West-Hesperidan women’s free clinic staff apologized to her. Even with her cane, Gretchen couldn’t stand long enough for fourteen women to express remorse so everyone stayed seated instead of making a circle around her. The gist was that while they knew Gretchen had muscular dystrophy, they still hadn’t thought of her “like that.” They said they were sorry for not respecting that Gretchen had a disability and for assuming that she had been lazy and napping at her desk when she was, in fact, semi-conscious and unconscious, depending on the time of day.

Continue reading

RespectAbility, Class and Race Privilege, and Leveling the Erring Field

 The post shows a picture of George H. W. Bush and links to a news story of him saying he will vote for Clinton. Mizrahi wrote: If Hillary wins it will because of white voters who care about people with disabilities. BTW, this is NOT a partisan thing. The same is true of Republican Sen. Richard Burr in NC who is running as the pro-PwDs candidate there.. THE POWER OF VOTERS WITH DISABILITIES WILL DETERMINE THE OUTCOME OF THE 2016 ELECTION! Remember that George H.W. Bush signed the ADA!

Screenshot of Mizrahi’s September 2016 Facebook post.

I have now been witness to The Mistake by RespectAbility’s President, Jennifer Laszlo Mizrahi; the unpleased reactions by disabled women of color; some thoughtful initial responses; a cringe-worthy apology-type product; the official statement; and now (I’m guessing), The Great Moving On from uncomfortable conversations about ableism,  racism and disabled people of color within the disability rights community.

Part of me — the part that’s still polite to boundary-busting missionaries — initially wanted to say, “I’ve done this kind of racist shit myself. Sadly.” Then I remembered that much of that shit was when I was near the start of my career 25 years ago. When I would have lost my job — and Bi-Pap-providing health insurance — if I kept that shit up in our very progressive free clinic for gyn care. And how I had no safety net if I lost that job.

Everyone makes mistakes but the erring field is far from equal.

Depending on your class, Repercussions, Consequences, & Accountability are either the Three Furies that dog you even when you haven’t screwed up, or they’re the crisis PR firm you consider for damage control.

When you’re poor, unemployed, a woman, a person of color, a disabled person, or all or most of the above, making mistakes is far more likely to lead to words like “unqualified.” You are threatened with unemployment, fired, and/or are cut off from public benefits. In the worst case scenario, you haven’t made a mistake at all but are questioned, blamed, violated, beaten, shot, killed for being the person you are in public, in school, on the road, and at home.

When you’re affluent or “comfortable,” employed, a man, white, not disabled, or all or most of the above, making mistakes is more likely to lead to words like “executive coaching,” and “Let’s bring our communications person in to help.” In the worst case scenario, you “transition out” to what is often a better-paid job, aka “failing up.” If you are in a position to be a volunteer who has significant authority, the usual checks and balances on your behavior can be even weaker.

That’s when I first realized how integral money, class privilege, and power are to this recent incident. I haven’t seen any real repercussions, consequences, or accountability for Mizrahi — except for a bump to her prestige — and that’s just one infuriating aspect of how race and class insulate those with power.


Then I reread the official statement and I hit a whole new level of disturbed. Continue reading

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.

Continue reading

#WSPD2016: Suicide Is a Problem, Not a Solution for Living With a Disability. Yup, Even One That’s Neuromuscular, Progressive, and Degenerative

September 10 is World Suicide Prevention Day. But for a disabled person like me,  it’s just not my day.

Increasingly:

What would be a “threat of self-harm” for you, is a “personal choice” for me.

What calls for an intervention for you, calls for a pre-suicide party for me.

Your movie is It’s a Wonderful Life. My movie is It’s a Wonderful Death.

When it comes to people like me, suicide is rapidly becoming normalized. Or more exactly, suicide is being erased through re-branding. “It’s not ‘suicide’! It’s ‘ending your life on your own terms’!”

But I want a great pre-end of life. I want to live on my own terms.Ingrid posing with her Respironics Bi-Pap S/T

Continue reading