#WSPD2019: Suicide Is a Problem, Not a Solution for Living With a Disability. Yup, Even One That’s Neuromuscular, Progressive, and Degenerative

2018 2019 UPDATE: STILL ALIVE

STILL OPPOSED TO EUPHEMIZING DISABLED PEOPLE BY NORMALIZING OUR SUICIDES THROUGH LANGUAGE

I’m still disabled, still degenerating, and still filled with joie de crip, but even if I weren’t, I still wouldn’t be buying the double-speak that calls my suicide “a rational choice,” “death with dignity,” and “ending my life on my own terms,” while a (seemingly) nondisabled person’s suicide is “a public health problem.”

The terms we use in talking about an issue set the terms of the debate. Suicide is a public health problem. Distorting that through sophistry marketing language feeds suicide contagion.


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

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

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A Crip in Philanthropy: The Best of Times, the Worst of Times

The Best of Times, the Worst of Times: This Moment in Disability, Dignity, and Human Rights

A Crip in PhilanthropyAn earlier version of these remarks was shared at Congregation Beth Jacob in Redwood City, California on March 3, 2018. I deeply appreciated their welcome when I was invited to address their community by Anne Cohen, an activist, disabled parent, and board member at the organization where I am Director of Development, Disability Rights Education & Defense Fund (DREDF) or, as Anne has dubbed it, “the ACLU of disability rights.” CBJ’s cross-disability access allowed me to take the first step in organizing community support: communicate.
I grew up with a disability, one that is genetic. I have been a plaintiff in an ADA access case here in California. It involved a bathroom. That required a lot of talking publicly about my using the bathroom. For disabled people like me – physically disabled — being disabled means never knowing where your next accessible public bathroom is. Today. Nearly thirty years after the ADA was passed. And keep in mind those 30 years coincide with my fundraising career in social justice non-profits and their philanthropic allies. Those are whole decades of trying my best to use empathy and imagination to shift that stubborn disability narrative that says I receive but can’t give. That disability is a health thing. That I need a cure when a toilet would be preferable. That I am charity, personified, not justice, denied.

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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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This Crip Stays in the Picture: A Past Plaintiff on Opposing H.R. 620, the ADA Notification Act

Colorful cartoonized portrait of Ingrid Tischer's face

This crip is staying in the picture of ADA litigation.

I’m Ingrid Tischer. You may remember me as “headless female torso using a walker” from Anderson Cooper’s “ADA Hit-Piece of Horror” on 60 Minutes. But I’m here today to tell you about a different type of horror: Being a plaintiff in an Americans with Disabilities Act (ADA) lawsuit, in which you’re presumed greedy and where whatever happened to you was no more than an inconvenience.

Four years ago, I began a multi-year metamorphosis into “non-vexatious litigant wanting to use a toilet.” That makes me the face of ADA lawsuits. But, in the 60 Minutes segment and the continuing slew of hand-wringing pieces about ADA scam-artists, you don’t see any faces like mine. A face like mine disrupts the narrative of the selfish — or gullible — cripple who financially kneecaps overwhelmed small business owners over access technicalities. You don’t hear much about how the proposed H.R. 620 would also apply to our considerably larger corporate citizens. So I’m putting my face right out there. This crip stays in the picture.

Despite the media’s fixation on “drive-by litigation,” — a completely non-accidental choice of phrase that associates fighting for my civil rights with gang violence – I was using the ADA as it was intended to be used, and should be used. As a civil rights law that, in 1990, made me a full US citizen at the age of 25. But in addition to the external changes in public spaces that have literally opened doors for me, the ADA is responsible for a profound internal shift in my thinking: I have expectations now that I didn’t grow up with: that I can enter a store, eat at a restaurant, cross a city street, open my office door.

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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.