“I sometimes daydream about managing the campaign of a disabled candidate and hiring a staff of all disabled folks – that and maybe even running for office myself one day.“
Photo courtesy of Dom Kelly
“When I asked if I could create a disability council at Fair Fight Action, I was given enthusiastic support and encouragement.“
Name or Anonymous:
Dom Kelly
Please share how you prefer to introduce yourself:
I am a progressive political and nonprofit fundraiser, disability justice advocate and organizer, digital and editorial strategist, and former professional musician.
I am one of a set of triplets with Cerebral Palsy and have been involved in disability advocacy since I was 4 years old. I am currently the Senior Fundraising Manager at Fair Fight Action, a voting rights organization based in Georgia, and I also lead our Disability Council.
Previously, I spent nearly a decade working in leadership positions in the digital media space while touring the world and making records with my rock band. I hold a bachelor’s degree in music production and master’s degree in new media journalism, and I am currently completing a graduate certificate in interdisciplinary disability studies at the University of Maine as well as a master’s in nonprofit leadership from the University of Pennsylvania.Continue reading →
Long before I became a fundraiser with muscular dystrophy, I became a sibling to two nondisabled brothers. Stuff I Know:Access to funding is an equity issue. If it’s an honor for kids with disabilities to fund their own health care, then let’s have all kids be poster children. Also: While my lizard brain loves the BS that I, the disabled child, “taught my parents what love *really* is,” MDA telling siblings this during the Telethon is a lousy thing to do. As fundraisers and humans.
Stuff I Know I Know As a Fundraiser Who Has Muscular Dystrophy
With thanks to everyone’s brilliance in the 10/17/20 #EndTheTelethon Twitter protest and to Dominick Evans for leading our response, which you can get in on until October 24, 2020, the day of the Muscular Dystrophy Association’s MDA Kevin Hart Kids Telethon. There’s lots of great writing about problems with the Telethon’s charity model but this post is from the fundraiser’s point of view, as much as it is from a community member’s.
1. The Past is Prologue
I’ve had more than one person angrily ask how I dare criticize this year’s Telethon when it hasn’t even happened yet. Here’s how:
I know that part of every well-run fundraising event is what’s called its “post-mortem.” The team examines what worked, what went wrong, and (most importantly) how to keep the problems from reoccurring.
I’m worried because early promotion of this year’s Telethon indicates that their last post-mortem missed – or didn’t care about – one of their biggest problems: Jerry Lewis and his legacy of alienating the very people he claimed to serve.
Like most of fundraising, this ain’t rocket science: The best predictor of future behavior is past behavior and we have nearly 50 years of insults and stereotypes at the Telethon that were sanctioned by MDA’s culture and leadership.
This screenshot shows they’re clearly ok with Jerry Lewis’ misconduct.
Promoting the MDA Kevin Hart Kids Telethon by promising to “fondly remember the classic moments from the Jerry’s Kids Telethon,” and include “nostalgic footage” indicates that MDA’s fundraising culture has not really reckoned with its internal ableism.
2. Children – including disabled children – are people. (Again – not rocket science.)
CripTip: Don’t bring children on stage and talk about them in the 3rd-person and how they could die at any time. Please note this is equally bad regardless of whether you know that you’re telling the truth or lying about this PERSON.
I remember being a young kid, maybe 6-7 years old, and going on live TV in front of thousands of people. I remember by parents saying on TV that I was ‘dying’ – and I remember how painful that was because that was honestly news to me.#EndTheTelethon#TurnOffPity
“Linking ableism to other forms of oppression is also critical.”
Photo courtesy of Catherine Hyde Townsend
“Developing relationships between community leaders and philanthropic staff is essential. These social networks not only inform grant-making decisions, but also help reinforce learning and understanding of the disability community. It’s also one of the hardest things to do.”
Name or Anonymous:
Catherine Hyde Townsend
Please share how you prefer to introduce yourself:
I’ve worked in philanthropy on human rights issues since 2002 and became disabled 16 years ago.
Like lots of people, I was pretty clueless about disability before I experienced it myself. But I quickly realized what internalized ableism looked like as well as the social model of disability. I had/have access to incredible support from my family, work and friends, as well as significant privilege within the healthcare system. I haven’t always self-identified for a variety of reasons, but do so now for both political and personal reasons, finding significant community with others in the disability community.
For most of my time within philanthropy, I’ve been trying to educate and advocate to colleagues about how they can better include people with disabilities. One of the things I’m most proud of is helping to launch the Disability Rights Fund, a global donor that uses a participatory decision-making structure.
Most of my past work was at Wellspring Advisors, which works anonymously and takes a very low profile. For obvious reasons that was challenging, but I was able to launch and expand a grant-making portfolio focused on the [UN] Convention on the Rights of Persons with Disabilities with a very intersectional lens. That grant-making was/is really important, but it was also important for donors of women’s rights, HIV, AIDS, immigration, etc., to understand the ways different forms of oppression link and reinforce one another, but also how our advocacy can do the same.
My current work seeks to advance the inclusion of people with disabilities within philanthropy – mostly focusing on the grant-making, but a lot on learning and culture change, as you cannot have one without the other.
“Good introductions should be considered part of universal design.“
Photo courtesy of Alex Tabony
“Employers are often focused on obtaining the ‘best and the brightest’ and have defined that, in part, as having a profile that typically PWD (people with disabilities) do not have because of missed developmental opportunities and/or non-traditional backgrounds for the position.“
Name or Anonymous:
Alex Tabony
Please share how you prefer to introduce yourself:
Call me Alex.
Here’s a little more about me. Since 1999, I’ve dedicated my life to help break the cycle of poverty for people disabilities and the economically disadvantaged. Employment is the key to a life of independence. I develop and maintain programs that go right to the heart of the issues and produce remarkable successes. My hat is off to those who take the challenge and I am so proud to be part of the process of transforming.
As Computer Technologies Program‘s Executive Director, I’m responsible for overseeing the administration, programs and strategic plan of the organization. Other key duties include fundraising and community outreach.
“The biggest gap in organizational commitments to disability inclusion continues to be a lack of inclusive hiring.“
Photo courtesy of Emily Ladau
“Currently, it seems a lot of organizations are beginning to recognize disability as an area for funding, but it’s time to move beyond a charity perspective. “
Name or Anonymous:
Emily Ladau
Please share how you prefer to introduce yourself:
I’m a disability rights activist, writer, speaker, and digital communications consultant whose career began at the age of 10, when I appeared on several episodes of Sesame Street to educate children about life with a physical disability.
My writing has been published in outlets including The New York Times, SELF, Salon, Vice, and HuffPost and I have served as a source for outlets including NPR, Vox, and Washington Post. I have spoken before numerous audiences across the United States, ranging from lectures at universities to conference keynote presentations.
At the core of my work is a focus on disability identity, sharing our stories, and harnessing the powers of communication and social media as tools for people to become engaged in disability and social justice issues. More about my work can be found on my website, Words I Wheel By.
“Philanthropy is not different than other fields. If there isn’t meaningful inclusion of disability across the organization, ableism is occurring.“
Photo courtesy TEDX
“My most positive experience was working at The Ford Foundation when they wanted to learn about barriers we face and what Ford needed to do to become more educated and inclusive.”
Name or Anonymous: Judy Heumann
Please share how you prefer to introduce yourself:
It depends on the situation. Typically Judy Heumann, sometimes Judith Heumann, Ph.D.
Senior Fellow, The Ford Foundation 2017-2018
I’m now building an online presence under The Heumann Perspective through social media platforms such as Facebook, Twitter and YouTube. This new project is intended to broaden and spur discussions on the intersectionality of disability rights.
“My fundraising career has been very affected by the income restrictions imposed by public benefits systems.“
Photo courtesy of the Disabled and Proud Conference
“It’s hard to work in this sector and to be asking mostly people with disabilities for money. People with disabilities are disproportionately low income, and the system keeps us poor… And if foundations aren’t interested in funding disability rights and individual donors just can’t give enough, where does that leave us?”
Name: Cara Liebowitz
Please share how you prefer to introduce yourself:
I’m a multiply-disabled activist and writer. I’m the Development Coordinator at the National Council on Independent Living (NCIL), where I handle all of our grant-writing, fundraising, and partnerships. I like cats, country music, and books about plagues.
“To say that we can only be charity recipients is another way our community is dehumanized.”
Photo courtesy of Tiffany Yu
“I look to other movements for best practices and learnings that we can bring back to the disability community. I also acknowledge that we are still working on making all of our movements more intersectional.”
Name: Tiffany Yu
Please share how you prefer to introduce yourself:
I am building and funding things I wish existed when I was younger. Today, I’m on a mission to increase access and opportunity in the disability community.
I do that as the CEO & Founder of Diversability, an award-winning social enterprise focused on building community through the celebration of our diverse disability lived experiences and as the Founder of the Awesome Foundation Disability Chapter, which has awarded $30,500 in grants to 31 disability projects in 6 countries. I also serve as a Mayoral-appointed member of the San Francisco Mayor’s Disability Council and am 2019 California Miss Amazing, serving as an ambassador for girls and women with disabilities. I have had the opportunity to share our work at the World Economic Forum Annual Meeting in Davos, TEDx, and media outlets like Forbes, Marie Claire, and the Guardian.
“I would like to see nonprofits and NGOs all around the world have more power in relation to philanthropy.“
Photo courtesy of Marsha Saxton
“I would like younger leaders, women and people with disabilities, to not have to go through the tokenization that I experienced as a younger person. I submitted to this because I didn’t really recognize what was happening to me at the time, and was afraid, and made to feel grateful to have a meeting or participate in conference with philanthropy.”
Name: Marsha Saxton
Please share how you prefer to introduce yourself:
I’m a researcher and scholar. I’ve been interviewed on 60 Minutes and Talk of the Nation and served on the boards of Our Bodies, Ourselves Collective; the Council for Responsible Genetics; and the Ethics Working Group of the Human Genome Initiative. I’ve published three books, several films, and over one hundred articles and book chapters about disability rights, personal assistance, women’s health, nutrition, employment, violence prevention, genetic screening, disaster preparedness and climate crisis impact on the disability community.
I like the slogans, “Nothing about us without us,” and “Power to the people with disabilities!” I tell my students, “The Disability Rights Movement is one of the most successful movements for human rights in the history of the world – although we still have a ways to go.”
“There needs to be targeted outreach to the disability community to recruit people into philanthropy. Philanthropy has to deal with its elitism, classism, and lack of diversity.“
Photo courtesy of Alice Wong.
“The philanthropic field has a lot of work to do to learn and reflect on systemic ableism, and take concrete steps (not just lip service) on how their actions and policies reflect their commitment to anti-ableism.“
Name: Alice Wong
Please share how you prefer to introduce yourself:
I’m a disability activist, media maker, and consultant based in San Francisco. I’m the Founder and Director of the Disability Visibility Project® (DVP), an online community dedicated to creating, sharing and amplifying disability media and culture created in 2014. Currently, I’m the Editor ofDisability Visibility, an anthology of essays by disabled people, coming out summer 2020 by Vintage Books. I also work as anindependent research consultantas part of my side hustle. You can find me on Twitter: @SFdirewolf.
Or just think of me as:
“Night owl, picky eater, disabled activist living in San Francisco”
“I was once asked to serve on an evaluation committee that didn’t mention an honorarium and when asked, they replied that they didn’t generally pay volunteers. My response to that absurdity was that this was a policy they should revisit because evaluating applications is a good deal of work…Long story short, they gave my feedback consideration and their parent funder freed up more funding so that they were able to pay the entire evaluation committee. I was asked again and agreed to take on the evaluation responsibility under paid conditions that valued my time as a disabled person.“
Photo Courtesy of Heather Watkins
“Sometimes I feel like there is a lack of racial and cultural understanding/comprehension that does become a barrier.”
Name: Heather Watkins
Please share how you prefer to introduce yourself:
I am a Black disabled woman who is a disability advocate, author, blogger, mother, and graduate of Emerson College with a B.S. in Mass Communications. I was born with muscular dystrophy, serve on a handful of disability-related boards, and am a former Chair of the Boston Disability Commission Advisory Board.
I’m also a co-founder of “Divas with Disabilities Project,” a supportive sisterhood network representing women of color with disabilities. My publishing experience includes articles in MDA’s Quest magazine, Mass Rehab Commission’s Consumer Voice newsletter and I’ve blogged for Our Ability, Artoflivingguide.org, Disabled Parenting, Grubstreet, Rooted In Rights, Womens Media Center, and Thank God I.
My short story, “Thank God I have Muscular Dystrophy” was published in 2013 as part of compilation in the Thank God I…Am an Empowered Woman ® book series. My blog Slow Walkers See More includes reflections and insight from my life with disability.
“The idea of disabled people supporting disabled-led projects resonated with the community organizer side of me that does not often have access to being on the other side of the philanthropic world, as grantors.” -Sandy Ho
“Either I risked losing money because I made “too much” income, or I risked losing it because I didn’t fill out the bottomless pit of forms every year as required by the government. In that sense I internalized money and the concept of philanthropy as something that wasn’t meant for me to access.”
Name: Sandy Ho
Please share how you prefer to introduce yourself:
I’m a disability community-organizer, activist, and disability policy researcher. I’m also the founder of the Disability & Intersectionality Summit, a biennial national conference organized by disabled activists that centers marginalized disabled people.
My areas of work include disability justice, racial justice, intersectionality, and disability studies. I’m a disabled queer Asian American woman whose writing has been published by Bitch Media online.
Your pronouns are: she/her/hers
Current Job Title(s) and Organization(s) (if applicable):
Founder and Co-Organizer of Disability & Intersectionality Summit.
Years in philanthropy on both the fund-seeking and fund-giving sides:
Less than 5 years.
“More often than not, I am asked to provide some kind of advising around physical access.” #OurDisabledLaborDay
Number of years in the workforce prior to 2007, when there was a surge into social media?Continue reading →
DiD’s first Storyteller goes live on Monday, 9/2/19 – and all I’m going to say about them is, “They’re AWESOME.”
We’re taking the whole thing easy ’cause it’s Labor Day! Our next Storyteller will follow the next Monday.
The Disabled in Development Project (DiD) is about advancing disability equity in philanthropy and fundraising. Because access to funding is an equity issue.
Our representation matters because access to funding is a critical component in dismantling structural ableism.
Telling our stories matters because we need to make philanthropy more effective and thus more powerful by centering more disabled people from multiply-marginalized communities.
DiD is our storytelling place to both celebrate advances in disability inclusion and to testify to the ableist structural barriers we’ve encountered, and that may have halted our career advancement or forced us out.Tell your truth about our disabled labor to transform philanthropy!
1 in 4 people in the US has a disability. 3% of folks in philanthropy identify as disabled. 3% of funding goes to disability-related work. Which all adds up to the reality that disabled people don’t typically win in the funding arena.
“1 in 4 people in the US has a disability. 3% of folks in philanthropy identify as disabled. 3% of funding goes to disability-related work. Which all adds up to the reality that disabled people don’t typically win in the funding arena.”
I’m delighted to present The Final Director’s Cut of the presentation given at the 10th AweSummit on behalf of ourAwesome Foundation Disability Chapter.
I had posted an earlier version on Facebook but wanted it to be easier to share and have audio descriptions. Here are two, the first with text-only descriptions and fewer images, and the second with more images and complete descriptions. Scroll down further for a transcript of the second.
Those of us who can tell our stories openly about disability, chronic illness, and aging in philanthropy and fundraising are the tip of the iceberg. Our numbers are small compared to those who feel compelled to keep that aspect of who they are hidden under the water-line. Photo credit: Ales Utovko
I’m not sure when I started to notice the pattern.
I’d raise some disability access issue at work and, not long after, a colleague would tell me privately that they had a disability and/or a chronic illness. They didn’t feel safe disclosing it and, therefore, couldn’t ask for any accommodations for it.
These kind of workplace stories are a big part of what’s behind the Disabled in Development Project and how, when viewed collectively, they add up to system failures and structural ableism that is well beyond any individual’s ability to “overcome.” While DiD’s also about sharing stories of the significant progress toward inclusion being made in philanthropy and fundraising, giving space to testify openly about ableism in our own sector is essential for context.
The situation would be making doing their job harder and they appreciated being able to vent to me. Would I please keep it a secret? Of course I would. And I did. Even when having more numbers on my side would have helped me argue that this-or-that barrier solution should be a priority, despite time and money limitations.
I remember this happening as far back as the late 90s and the confiding confessions continue to this day, socially and at meetings and conferences, though not in my current workplace, DREDF.
I’ll describe one particular situation but keep identifying details out as best I can. This whole episode still bothers me:
I worked with a fundraising teammate who had a different but complementary skill-set from mine. They were very good at what they did, from the outset.
We had a superior, also newish, who was a toucher. As in, a touch on your arm for emphasis, that kind of thing. My teammate told them early on that they did not like to be touched and please don’t ever do it, it was very upsetting to them. (I witnessed this.)
Our superior kept right on touchin’.
Part of any system is access to the system. If access is blocked by stigma, that is itself a system problem.
“Stigma-busting tales of bringing our disabilities, chronic illnesses, and aging to our work in philanthropy and fundraising”
FAQs for Field Allies
What’s the purpose of the Disabled in Development Project?
Founded in 2019 by Ingrid Tischer, the purpose of the Disabled in Development (DiD) Project is to make philanthropy more effective and thus more powerful by centering more disabled people from multiply-marginalized communities.
What do you want from Field Allies?
Field allies of the Disabled in Development Project (DiD) are friends and supporters who help share DiD with potential storytellers and other like-minded allies.
In choosing to let me list your name and a blurb about you as a Field Ally, you show solidarity with DiD’s efforts to dismantle structural ableism and advance representational leadership in philanthropy and fundraising.
You might be a connector — someone who isn’t a DiD story-teller yourself – who knows people who might want to be storytellers.
Or you’re with an organization that wants to stand with DiD in saying,
“Disability inclusion, equity, and representation are essential to powerful philanthropy and fundraising, and centering more disabled people from multiply-marginalized communities is the way to go.”
Or you’re both!
You help encourage your community to participate and share their stories. You also publicize this campaign among your professional and informal social networks.
Here are some general guidelines:
Please let me know if you’d like to help get the word out. If you would, please email me and let me know if I can list you or your organization as one of our Field Allies.
The first DiD stories will go live on Monday, September 2, 2019.
Why that day? Because Labor Day has many wonderful traditions and history associated with it. But one of them wasn’t so great for disabled people or fundraising:
For decades, the MDA Labor Day Telethon was where Jerry Lewis spread such damaging messages about disabled people as,“My kids cannot go into the workplace.”
Yes, that’s the past and name-checked just those of us with muscular dystrophy. But thecharity modelit came from is still all-too alive and well in fundraising and philanthropy.
Disability in Development (DiD) Project: Telling Our Truth to Transform Philanthropy
Connect. Belong. Succeed.
The Disabled in Development (DiD) Project is seeking out non-profit staff who hold fundraising responsibilities, and development and philanthropic professionals already in the field – some for decades – for their constructive advice on how to put inclusion principles into practice.
DiD is our place to document advances in inclusion and to testify to ableist structural barriers that we encounter and that all-too often halt our career advancement or force us out. Your stories are important.
Philanthropy has been changing for the better over the past 2 years or so, when it comes to disability and inclusion. The numbers alone indicate dramatic need for change: Just 3% of philanthropy identifies as disabled and funding for global disability civil and human rights advocacy fell by 23% between 2011-2015.
Getting more openly disabled people at philanthropic tables is the right thing to do. But being at the table isn’t the goal. Our representation matters because of our wealth — of expertise, skills, and relationships. DiD’s goal is to make philanthropy more powerful.
We’re all stronger when we connect, belong, succeed.
To achieve that, DiD will help improve philanthropy’s understanding of what ableism is, and how it — not disability — causes exclusion and inequity. This will strengthen philanthropy’s capacity to fight ableism. Philanthropy needs disabled, chronically ill, and aging people in order to become a better, more powerful force for social change.
DiD provides an accessible outlet for making disability more visible and less stigmatized in the philanthropic sector, increasing the sector’s access to our profoundly marginalized expertise.
Our successes deserve to be known and built on. Our advice should be heard. The barriers that we deal with are often embarrassing, sometimes humiliating, and just as frequently, absurd and infuriating. They make great stories. This is our time to tell them.
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
Here’s how you can share your expertise and experience through Disabled in Development:
First Steps:
See if it’s for you: Check out the process (below), preview the questions.
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.
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.
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.
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.
“When I asked if I could create a disability council at Fair Fight Action, I was given enthusiastic support and encouragement.“
“Developing relationships between community leaders and philanthropic staff is essential. These social networks not only inform grant-making decisions, but also help reinforce learning and understanding of the disability community. It’s also one of the hardest things to do.” 
The Disabled in Development (DiD) Project is seeking out non-profit staff who hold fundraising responsibilities, and development and philanthropic professionals already in the field – some for decades – for their constructive advice on how to put inclusion principles into practice. 
Disabled In Development 