Issue No. 1: Ableism Speaks
In which The Crip gives very special ableist remarks the 2¢ they deserve
“If you’ve got your health, you’ve got everything.”
Sure, health is important but if you’ve always lived with a chronic condition and/or a progressively degenerative one like I have, hearing this most common of platitudes leads to a waxy bummer build-up in the psyche. It is no pleasure to ponder the possibility that you regard me as having…nothing. Nor do I want to reprise my role on Emotional Labor: Special Cripple Unit where I tell myself you don’t actually mean anything bad by that. I would prefer instead that people express gratitude for what health they have (I know health is a nice thing!) without making such a sweeping generalization about what a good quality of life requires.
Did You Know?
A disability does not necessarily mean “sick.” Unless you mean, “sick of discrimination.” Then — oh yeah. #CripTips
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.
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:
- Do not put Mizrahi in charge of the action plan.
- Do not put Mizrahi on the team in charge of the action plan.
- 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?
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.
- 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.
5. Why is suicide being presented as a solution, rather than a problem, when the people involved have disabilities?
September is Suicide Awareness Month and September 10 is World Suicide Prevention Day. I’m writing this because media coverage over the past year alone seems to warrant an explicit reminder that:
- We don’t lack awareness of people with disabilities committing suicide; we do allow vulnerable people to feel shame over chronic pain and depression.
- Our suicides deserve prevention, not encouragement and cultural misrepresentation, as in films such as Me Before You.
What’s the context beyond the medical? What are the underlying attitudes guiding how the media’s coverage of people with disabilities who have committed suicide or who are planning to do so?
5. Because we need to support the decisions of overburdened parents/caregivers of severely disabled children right up until the time when their decisions require public funding for adequate and affordable in-home supports.
It’s feels like it’s 2007 all over again, what with “growth-attenuation therapy” for severely disabled children – many of whom are girls – being back in the news. And today, just like then, people with disabilities are trying to make this all about them. But there’s no unrecognized ableism framing this “ethical debate.” It’s not as though fearful parents who really do care about their children — who really are severely disabled — are being given an absurd and brutal choice:
The medical model of disability would keep us separated by diagnoses — different and disconnected — but the social model can bring us together — unique and united — through common concerns for our rights.