I’m a crip in grant-making philanthropy! 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 #DisabledInDevelopment. 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.”

About Hitting the Porcelain Ceiling and Getting Special Tracked

I’ve always been disabled in development but only recently had  short-hand terms for the seemingly endless obstacle course: Hitting the porcelain ceiling, the final destination point for disabled, chronically ill, and/or aging employees who’ve been put on the special track.

A disabled employee like me still can’t count on something as basic as a toilet in public spaces, let alone the private venues where a great deal of development work gets done.

Yes, that affects only people with certain types of disabilities but the message it sends is addressed to all of us. That includes people who hold down jobs in development and senior-level positions with fundraising responsibilties.

The message is: It’s natural, it’s normal, it’s inevitable that disability, chronic illness, and aging shove people onto the “special track.”

If you don’t think there’s a cumulative effect of never knowing where your next pee can actually take place, try holding it through 30 years of work-related business trips, restaurant meals, and meetings.

My Experience of Being #DisabledInDevelopment 

Spoiler: It Involves a Whole Lot of Pee Math

I thought about the grantees’ training I flew 2,000 miles to in 2004, the one where I had prepped them re access and they forgot the only bathroom was down a long flight of stairs. While they talked oppression, I did #PeeMath.

I thought about wracking my brain on how to staff a major donor’s exclusive party in her fabulous beach house that I couldn’t enter.

I thought about the gorgeous Victorian where our board thank you event was being held where two colleagues carried me up the back steps and I panicked when they left before I could.

I thought about turning down or not extending invitations for informal coffees or drinks with people who might have become donors or connectors to career opportunities.

I thought about the pressure to always push for the face-to-face meeting when I was more anxious about the multiple barriers to it than the meeting itself.

I thought about being a new development manager and waiting outside on a December evening for paratransit for 3 hours to go home after a long day, knowing I had a meeting the first thing the next morning and I’d been warned not to be late again. 

I thought about my first day on the job as a development and communications officer at a women’s rights advocacy organization where I had to have my boss take me to the bathroom and wait for me because it wasn’t accessible.

I thought of being at a civil rights grantees’ convening in 2006 and knowing I was the advocate who was denied a bathroom I could use because Marriott said my confirmed ADA room wasn’t *really* confirmed.

I thought about the diversity exercises we did 1991-1994 — from a training manual called Todos — that didn’t mention people with disabilities, much less what it’s like to fight publicly to pee.

I thought about the retreat I went to in 1996 as a prospective board member where I had to use the freight elevator and was supposed to raise my hand if I needed the bathroom.

I thought about staying in jobs that were toxic because I wasn’t sure if I could afford the COBRA payments for my health insurance that covered my respiratory equipment.

I thought about paratransit rides that added so many hours to my work-day that I couldn’t imagine going for director-level jobs where after-hours gatherings were routine.

That’s the truly insidious nature of structural ableism: It made my reluctance to be ambitious seem so unremarkable, so inevitable given my circumstances, that the external barriers weren’t seen as in need of removal. That’s just the way the world is. I was doing fine. This was how I saw me. Structural ableism is its most effective when it’s internalized.

After 30 years as a proud, out disabled woman in the workforce, I wonder how many of us would be the bosses of today if the required schmoozing, travel, beverage-enjoying didn’t come with fear that we wouldn’t be able to #PeeToo.

Work doesn’t happen just at work. If you want to be in a decision-making position, you have to “show initiative” and “develop relationships.”

What’s your story? Contact me if you’re #DisabledInDevelopment! Compensation available because I don’t expect unpaid consulting from disabled people.