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.”
The Best of Times, the Worst of Times: This Moment in Disability, Dignity, and Human Rights
An 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.