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.

Continue reading

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 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


Continue reading

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

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.
 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

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?

Continue reading

The Top 10 Reasons Why Medically Stunting the Growth of Children 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 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:

Continue reading

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.”

Continue reading

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.”

Continue reading