How to Do Inclusive Philanthropy: Introducing #DisabledInDevelopment

A Crip in PhilanthropyI’m a in grant-making ! Whoopee! As of November 1, I became a Trustee of Awesome Foundation’s Disability Chapter. It only took 25 years of being on the grant-seeking side of . I’d like to thank every teacher and boss who helped me with inaccessible toilets along the way.  You had my back when I was angry about something even I didn’t fully understand: I was up against a real thing – ableism – that created structural barriers to doing my job well.

And that brings me to: How to Do Inclusive Philanthropy.

Actually raising money, day in, day out, at DREDF doesn’t leave a whole lot of time for big-vision work. But I have one for inclusive philanthropy:

Philanthropy that has evolved from being the hothouse for benevolent ableism to a force for fighting all forms of ableism. Wash that charity right out of its hair.

I could spend months fine-tuning an inclusive philanthropy action plan but I’ve got a year-end campaign to run. So. Here are what 25 years of being disabled in development tell me are the ways to start scrubbing the charity model out of philanthropy:

1. Go inside out, bottom up.

Start by respecting the knowledge your current staff likely has, especially your front-line, support, and administrative staffs. 

The key: Lose your bias for titles and fancy degrees, and find out who in your organization has an interest in flexible schedules, paid family leave, and other such benefits. Why? Because disability, chronic illness, and aging may be driving that interest. Because they may feel they’ve been “special tracked” and blocked from moving up. That makes them more likely to have a vested interest in disability inclusion.

Why: Real change takes dogged persistence and these employees could well be your long-haul champions for transformative change.

2. Demonstrate that disability inclusion is not “the Other” in your philanthropic organization.

One of the most common misperceptions about disability is that it’s just not something your organization “does.” Fill out this simple “disability inventory” and you may well see disability is all around you, but called something else. 

Why: There absolutely will be folks in your philanthropic organization who believe disability = other people. They’ll be more receptive to the dogged persistence of your disability champions if it doesn’t mean “new stuff.”

3. Organize. Organize. Organize.

Help tell the real-life, true experiences of being disabled in development so that our invisible knowledge can help make glorious, ableism-ending change in philanthropy. Contact me if you’d like to be profiled (by name or anonymously) and featured in my new #DisabledInDevelopment series. I’ve got brief interviews with 3 amazing people — all women of color — in the works.

Compensation available because I don’t expect unpaid consulting from disabled people.

Why: So, so many people in philanthropy do not have the option of being out, safely, as disabled. #DisabledInDevelopment is intended both to help normalize disability in the sector and to provide an accessible platform for describing the structural discrimination they encounter and that all-too often halts career advancement or forces them out when they “hit the porcelain ceiling.”

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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 (TDF), 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.
Allow TDF’s VP of Communications Lucre Smoothjoy to introduce your faithful repertory character, The Poor, who will today be playing semi-malicious poopers out to get Mom and Pop, who put every dime they had into The Backbone of American Business, their head-shop on Haight Street that sells bongs, whippet cannisters, feathered roach-clips, and what appear to be a number of human bones, including a few spinal vertebrae from, not an American Business, but the backbone of an American opossum from Bakersfield.
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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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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There’s No Cure for Gretchen Lowe: The Dignity Initiative

Another Excerpt From There's No Cure for Gretchen Lowe a novelAnd she had made sure the door was locked. She stood there, watching the gray-blue paint and listening to what was happening from within. At first, nothing. Then a murmuring confusion, then a rapid rise in decibel levels, quickly becoming Frank’s singular baritone summoning Gretchen. It didn’t occur to anyone that it was anything but an accident.

She waited and then knocked to get their attention.
“Hi!” she called. She had to knock harder because, as usual, they were still talking. “Hi, everybody! Are you ready to start the meeting?”

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Disabled People Have Waited 30 Years to #PeeToo: Protect the ADA and Tell Congress to Vote NO on HR 620

In a hurry to contact California co-sponsors to say #HandsOffTheADA? DREDF has contact info and scripts.

THE ADA PASSED IN 1990. DISABLED PEOPLE STILL DO PEE MATH IN 2018. THAT ADDS UP TO INJUSTICE. TOILET ACCESS DELAYED IS TOILET ACCESS DENIED CONTACT YOUR REPRESENTATIVE BEFORE THEY VOTE THE WEEK OF FEB. 12: SAY VOTE NO ON #HR620, THE ADA EDUCATION AND “REFORM” ACT OF 2017 IF YOU DON’T GET WHY WE’RE TAKING ACTION TO STALL HR 620 YOU TRY HOLDING IT FOR 30 YEARS DREDF.ORG/HR620/


“Where, after all, do universal human disability rights begin? In too-small bathrooms, of necessity close to home – so close and so small that they still cannot be seen on any radar of Rep. Speier and way too many California representatives.”

It is profoundly demoralizing that Rep. Speier and other California members of Congress are cosponsoring .

Imagine that you have a harasser. Imagine that never know whether he will block you from getting into the public bathroom you need — sometimes pretty badly! — or not.

Imagine hearing that your harasser deserves 6 months to make “reasonable progress” toward not-harassing you — as much. After you wait 6 months, maybe you’ll be allowed to say NO to your harasser. Maybe.

Imagine your Representative is  championing your harasser’s excuse that it’s really hard to not harass you: “You have to understand that, yes, he knows what he’s doing has been against the law for almost 30 years but he needs more education.”

Access to a toilet is about dignity and safety whether the barrier is a harasser or a narrow door.

The ADA has been the law of the land for nearly 30 years and the only “reform” it needs is significantly greater enforcement. Disabled people in 2018 still can’t count on something as basic as a toilet in public spaces. If you don’t think there’s a cumulative effect of never knowing where your next pee can actually take place, you try holding it through 30 years of work-related business trips, restaurant meals, and meetings. Continue reading