I Remember This: I Am Thirteen and in the Recovery Room After Spinal Fusion Surgery

Cover of Mythology by Edith HamiltonYou are flat on your back under a glaring light. The bed is hard. It hurts. You don’t move because it doesn’t occur to you to do so, it’s so far beyond you. Each part of you that registers – reports in, so to speak – registers through pain. You body is mapped as a topography of pain. No face or distinguishing characteristics. You are a ground-colored shape dotted with points of glaring, popping pain. Where your head aches on the stone-stab mattress, where the gravel of the sheet is under your arms, where it rasps all along the tube that snakes down your throat, to an unidentifiable pressure on your front, low down.
Your back. Oh. Your back is a barely contained thorn patch in a mad stabber’s arsenal.
You’re not alone. There are voices, professional ones. But no one is talking to you.
There is a nurse above you, meeting your eyes. Her head blocks the light. “You’re awake,” she says. “You’re in the recovery room.”
You make a sound. It sounds dreadful. The first sound Frankenstein made on his slab. The thought of the monster brings back your past, all there was before this light, this slab, this pain. And the face in your reunion with memory itself is: Gene Wilder in Young Frankenstein.
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There’s No Cure for Gretchen Lowe: Dignity Is No Accident(s)

Another Excerpt From There's No Cure for Gretchen Lowe a novelThere was a remarkable lack of public debate in San Francisco — or anywhere else — on Adult Diaper Dispensation (ADD). All costs were loudly underwritten by The Dignity Foundation, a charitable body dedicated to community development, medical research, K-12 education, and, now, small businesses hit by the “squat-by defecation” of serial defecants.

Would you like a TDF annual report? We have one for you right here. It makes no mention of our corporate sibling and sponsor, a disposable paper-goods manufacturer that is aging out of infant goods into a more mature market. Our Dignity Initiative public information campaign takes a broad-based social education approach to bring the public up to speed on what we can do — together — through top-level messaging in high-traffic spaces with framing that deploys innocuous word-play rather that blunt fear.
This top-level messaging was visible to all who cared to look out the car window at the blinking billboard near the off-ramp at Duboce. Dignity Is No Accident(s).
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My FEDup ™Rant: 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.

FED UP TM Ideas worth ranting about

I’m FEDup with transactional philanthropy that presumes disrespectful behavior can be overlooked if the price is right.

I have now been witness to: RespectAbility’s President, Jennifer Laszlo Mizrahi making a mistake; the unpleased reactions by disabled women of color; some thoughtful initial responses; Mizrahi’s 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. [2018 UPDATE: Moving on didn’t work out so great.]

Part of me — the part that’s still polite to boundary-busting missionaries who ring my doorbell — 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.

There’s an odd segue from mentioning a nonspecific action plan to the information that Mizrahi gives to many worthy causes.

“…It takes a deliberate action plan, education and implementation.
“Outside of RespectAbility, I donate to many worthy causes….”

Translation: “Giving money is a transactional arrangement for me; it’s either outright proof that I’m a good person or at least suitable cover when my behavior is criticized as racist.”

You can’t buy back respect. That’s not philanthropy.

Not even when you’ve laid claim to the word “respect” in the name of your organization. This is one place where class privilege hopes so very much to neutralize racism.

Understanding and dismantling my own race and class privilege is a lifetime of work. Being required to clean up my repeated failures was how I learned to act on — rather than merely speak of — these precepts:

  • Transparent processes and equitable systems are far more trustworthy than promises made by an individual.
  • Women of color do not exist to teach white women how not to be racist.
  • Vague reassurances about doing better do not qualify as “accountability.”

Picture it: 1994-ish, the dilapidated second-floor gyn clinic, up from an iron-gated door open during clinic hours to the Upper Haight, San Francisco. A bunch of us staff are in the shabby waiting room with the furniture that will, at one point, give some of us scabies. It’s Wednesday morning, 10:30 or thereabouts, and the gate is closed because we’re having our weekly staff meeting.

Group color photo of a diverse group of women in casual wear in front of a door with a sign that reads, "Women's Needs Center.'As we do every blessed week, we’re doing some kind of diversity exercise.

Everyone takes a turn, everyone complains.

Nobody gets out of it.

Everyone is deeply offended and affirmed at some point.

It was during one of those weeks that I got religion, disability-rights-wise, and that was liberating but lonely because I was the only one crip who was out. It was where I became visible to myself and then to others. But it was the example of the women of color and/or queer women who showed me how to show up. I had to follow before I could lead.

Our Director had talked our CEO into funding a 2-year Diversity Specialist consultant who will work with our whole staff. Our goal was to improve our healthcare delivery for a diverse group of women. The weeks when she is with us are rough and there are relationships that are strained and sore afterward.

We do it. We keep doing it after the funding is gone. We bake what we’ve figured out into clinic procedures, position qualifications. It’s not about us individuals, our emotional reactions, anymore. We went beyond ourselves to build a better system.

We did what we could to level the erring field without limiting the heavy labor to the women of color who were involved.

Given that Mizrahi may be Too Big To Fail, here’s my (unsolicited) action plan for RespectAbility:

  1. Do not put Mizrahi in charge of the action plan.
  2. Do not put Mizrahi on the team in charge of the action plan.
  3. Accept that Mizrahi’s leadership position is another ethical hazard waiting to happen, and could be in conflict with the mission of the organization. (When reducing disability stigma and advancing employment best practices are part of your mission, your President’s ableist statements and expectation of unpaid labor from women of color with disabilities constitute conflicts.)

Yup, that’s the plan. You’re the board. Figure out the action plan for the organization.

Too drastic? Way harsh?

This is awkward necessary to say: Mizrahi is an affluent white woman executive whose manner in asking for help was that of someone Summoning The Help. The very people she had just offended. And when disabled women of color didn’t come a’runnin’, she was publicly resentful. That behavior was out of bounds.

Again:

  • It is not the job of women of color with disabilities to educate a white, affluent executive with a disability about racism.
  • If it is a job for women of color with disabilities, pay them for it. Budget for it.
  • If it’s not a job, then be honest and admit it’s not a serious commitment.

In 2016, How To Relate To People Who Don’t Look Like You is an essential qualification for any job — paid or unpaid — in disability rights. Period. If you’re not prepared, it’s on you to get prepared.

It’s not quick or easy to truly understand intersectional oppression, nor does it make you perfect. It makes you a better imperfect person. I know because I was willing to do the work.

So. Get to work.