Letters to a Young Fundraiser: The Philanthropeon Wars and the Fall of Telethonika

My Dear Friend:

You wrote of a growing strain on your spirit that seems to have no reasonable source, as your position is unobjectionable, your master provides you accommodations enough, and your annual fundraising goal numbers not unduly burdensome. What then?
You ask if you are perhaps “a loser.” I think not.
During my youth, my father — a fundraising titan who fought for funding alongside Major Donor — became disgusted with my inadequate Girl Scout cookie sales and sent me away to a notorious fundraising academy, one of the very strictest of the Transactional schools.
I was miserable and branded a failure — a loser — at “working the room,” and “friend-raising,” and so on, until I was confined to the barracks for insubordination after I refused to ply my trade at a memorial service, trading donations for signatures in the guest book.
But then I took a History of Fundraising in Western Civilization class. I learned about the Philanthropeon Wars.
I learned about the lost city-state of Telethonika, where disability democracy had been born around the year 504 BC. It is a loss that echoes down through millennia through some fundraisers who have the disability consciousness and who feel the shadow each year as Labor Day approaches. You may be feeling the echo of the fall of Telethonika, that flattish plain located one mountain over from Sparta.

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TryHarder™ Magazine: Ableism Speaks

TryHarder™ Magazine: The Magazine for People Who Need to Try Harder, 2 cents

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.” 

2 cents symbolSure, 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


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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.

HEY! YOU! MEDIA!: Let’s Make Suicide Awareness Month and World Suicide Prevention Day Inclusive of People With Disabilities

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?

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The Top 10 Reasons Why Medically Stunting the Growth of Girls With Severe Disabilities Continues To Be an Ethical and Well-Thought-Out Solution To the Problem of Financially Stunting Public Funding for In-Home Social Services, Which Is…Huh, How ‘Bout That.

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:

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This Labor Day, Let’s Commit to Wiping Out the Charity Model for All People With Disabilities in Our Lifetime

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.
This Labor Day weekend has me feeling celebratory because there’s no Muscular Dystrophy Association (MDA) Telethon on the air for the first time in 49 years.
This is great. If you’ve got that particular diagnosis. If you don’t, you may still have a problem. If, say, you’re diagnosed with autism.
People with autism are still dealing with the same dynamic of destructive messages in the fundraising that purports to help them.
Criticizing how funds are raised generates a whole lot of anger if the critics are among those who are said to benefit from the efforts.  That’s why cross-disability solidarity, disability history, and telling our own stories are so important. 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.
I’ve said it before and it’s still true: “I look at fundraising as a means of not just supporting social change but in promoting it as well. How we raise money says a lot about our attitudes toward the cause we want to fund.”

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NotPeople Magazine Presents: Star Trek: The Next Intervention

NotPeople Magazine cover with a picture of a pleading Captain Jean-Luc Picard from Star Trek: The Next Generation. Top reads: "The Assisted Suicide Policy Intervention Issue!" Side-by-side with photos text: "Captain Picard Intervenes & It's Patrick Stewart HOT!"Captain’s Log: Stardate 20150808.naptime. The Enterprise is en route after refueling at Carnitas in the Al-Pastor system, but before reaching the Reflux Cluster, we’ve picked up a warning call from the Federation ship Ventilator. The decoded message tells us that a pro-assisted suicide ship, The Good Death, is in the vicinity. We’ve sent them the standard response, U-1st, but The Good Death remains as quiet as a tomb. Then it suddenly appeared on the Bridge’s screen.
Captain Picard on the bridge looking toward the screen.“Tell me what I’m looking at on the screen and how that man can STILL be so damnably handsome.”

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