The DiD Project Includes Disability, Chronic Illness, and Aging

Disabled, Chronically Ill, and Aging People’s Representation Matters in Philanthropy and Fundraising

Our expertise and our stories can transform philanthropy and fundraising 
Disabled people, chronically ill people, and aging people can be a powerful coalition in philanthropy. But stigma is also a powerful force that keeps us silent, invisible, and isolated from each other – some of us, for decades. I’ve been an openly disabled fundraiser in the Bay Area for 25 years and I want things to be better for the people coming up.
I want the many people who have quietly persisted in philanthropy and fundraising for years and decades to be included in the equity work happening now.
Telling the truth about work and life by telling our stories is how we connect, belong, and succeed in philanthropy and fundraising.

Do you work/volunteer in philanthropy, work as a development non-profit professional, or hold fundraising responsibilities in your non-profit senior-level position on the staff or board?

Do you also live with one or more disabilities, chronic illnesses, and/or aging-related issues? (The term “disability” need not be used by you but here is used as a catch-all word that includes learning differences, neuro-divergencies, addiction/recovery, and mental health issues.)

If so, philanthropy needs you! Your knowledge is an inside track for how to put disability inclusion principles into practice in the philanthropic sector, as a workplace and social justice force for ending ableism.

Connect. Belong. Succeed.


Contact me to become a DiD Storyteller: Ingrid@talesfomthecrip.org

How You Can Participate in the DiD Project

Here’s how you can share your expertise and experience through Disabled in Development:

First Steps:

  1. See if it’s for you: Check out the process (below), preview the questions.
  2. Send questions or confirm with me at ingrid@talesfromthecrip.org: 1) that you’d like to participate; 2) how you’d like to be compensated (info below); 3) your decision about anonymity; 4) that you accept the Agreements.
  3. I email you a link to a Google doc that only you and I will have access to, where we’ll complete your interview/story.

Then:

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Compensation and Agreements Between You and the Disabled in Development Project

Agreements:

  • I’ll be grateful to you and, as a gesture of thanks for your time and expertise, I’m offering $40 to you through an Amazon gift card or a contribution in your honor to the organization of your choice.
  • None of your answers to the questions below will appear without your permission in anything I post publicly.  
  • You can participate anonymously and use general descriptions for Job Title and Organization, for example.
  • You’ll provide selected specifics at your discretion, rather than try to convey your entire history or the entire details of a situation.
  • You won’t share any information with me that’s connected to an administrative or legal case that you’re involved in and that’s open.

Preview Sample Questions

Want to see a sample of the DiD’s All About You and All About Your Experience sections? Of course you do!

REMINDER: You control what you share. We communicate privately and nothing goes public without your permission.


The ALL ABOUT YOU section gives context for your stories section. Most questions can be answered with Yes, No, N/a. Longer answers are welcome but not expected.
Name or Anonymous:

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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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An Open Letter to Advocacy Funders: #FundDisAdvocacy Because Disability + Ableism = Structural Discrimination

 

Want in on the conversation about ableism? Check out what disabled advocates, civil and human rights activists, and philanthropic leaders had to say at the Twitter chat on 10/12/18 about philanthropy and inclusion. Then make your voice heard at #FundDisAdvocacy.


A Crip in PhilanthropyFoundation funding for disability advocacy dropped 23% between 2011-2015. Disabled people were the only group to see a decrease. Most funders are “aware” of disability but do they see ableism and structural discrimination? How do we make funders see disability civil and human rights as areas of actionable, urgent advocacy? A first step is recognizing disability as a constant but hidden set of variables in nearly all formulas for civil and human rights. 

I’m writing to you in my capacity as a community organizer – which is another name for a social justice fundraiser.
I believe you and I share common ground on the importance of advocacy:
We know that the great civil and human rights gains of the last century, envisioned and organized by the grassroots, were built to last through the courts and legislation, and they will continue to be the battlefields for preserving them.
I’m writing because disability civil and human rights advocacy is missing from your funding portfolios.
The first step in changing that is frank communication.

When you do not explicitly say “disability” in funding advocacy, you send a message to us: Deny, disown, and downplay your disability identity. That denies all marginalized communities access to our hard-won legal tools and, worse yet, our expertise in using them.


You may understand this letter, at first, as pertaining to a discrete group: disabled people. But it is a fundamental mistake to think that civil and human rights for any community can be fully achieved if we neglect, forget, or disregard such a basic human condition as disability and allow it to be the “natural” cause of poverty and abuse. If we are not safe or free to be vulnerable, then we cannot call ourselves safe or free. Our society is not safe or free.

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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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