A Crip in Philanthropy: Stuff I Know As a Fundraiser Who Has Muscular Dystrophy and Why It’s (Past) Time for MDA to #EndTheTelethon
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
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— Olivia (@BagofSilly) October 17, 2020
Celebrate #OurDisabledLaborDay With the Disabled in Development Project
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.
Behind the DiD Project: One Story About Secrecy, Silence, and Stigma at Work in Fundraising and Philanthropy
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.
Reclaim Labor Day When the First DiD Stories Go Live on 9/2/19
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 the charity model it came from is still all-too alive and well in fundraising and philanthropy.
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.
Foundation 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.
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
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.
This Labor Day, Let’s Commit to Wiping Out the Charity Model for All People With Disabilities in Our Lifetime
The medical model of disability would keep us separated by diagnoses — different and disconnected — but the social model can bring us together — unique and united — through common concerns for our rights.