equity

A Crip in Philanthropy: Stuff I Know As a Fundraiser Who Has Muscular Dystrophy and Why It’s (Past) Time for MDA to #EndTheTelethon

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1 white woman and 2 white men, all smiling

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.
Screenshot of the MDA Kevin Hart Kids Telethon that includes "fondly remember the classic moments from the Jerry's Kids Telethon," and "nostalgic footage"

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.

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Disabled in Development Project Storyteller #5: Tiffany Yu

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“To say that we can only be charity recipients is another way our community is dehumanized.”

Color photo of Tiffany Yu, an Asian-American woman in a bright blue shirt, looking off to the side and smiling.

Photo courtesy of Tiffany Yu

Multi-colored hexagons“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.

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Disabled in Development Project Storyteller #4: Marsha Saxton

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“I would like to see nonprofits and NGOs all around the world have more power in relation to philanthropy.“

A white woman of middle-age who has short blonde hair and is wearing a pleasant expression.

Photo courtesy of Marsha Saxton

 

 

 

Multi-colored hexagons“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.”

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Disabled in Development Project Storyteller #3: Alice Wong

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“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.

Multi-colored hexagons“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 of Disability Visibility, an anthology of essays by disabled people, coming out summer 2020 by Vintage Books. I also work as an independent research consultant as 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”

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Disabled in Development Project Storyteller #2: Heather Watkins

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“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.“

ight complected black woman with dark brown hair pulled up into a bun on top of head, wearing light makeup and blue earrings, shown chest up, smiling and looking at camera, wearing blue and white patterned blouse and open button-up olive-colored jacket.

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.

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Disabled in Development Project Storyteller #1: Sandy Ho

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“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

Sandy Ho, an Asian American woman with dark curly hair sits in a black power wheelchair. She is wearing a blue tshirt with a superman logo, she also has brightly colored plaid shorts on and black sneakers. Her facial expression is one of outraged protest and in both upraised fists she holds oversized wooden knitting needles.

Multi-colored hexagons“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.
In 2015 I was recognized as a White House Champion of Change for my work in mentoring for transitional-age disabled women. I’m one third of the team behind Access Is Love, a campaign that is co-partnered by Alice Wong and Mia Mingus, and serve as a Trustee of the Awesome Foundation Disability Chapter.
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.

Multi-colored hexagons“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 →

Celebrate #OurDisabledLaborDay With the Disabled in Development Project

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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.

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