A Crip in Philanthropy (CRiP)

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

/ Ingrid Tischer / Leave a comment
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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#MoreThanMoney: Turning Disability Into Social Capital in Philanthropy

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“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 our Awesome 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.
/drumroll/
As I’ve said elsewhere about access:

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Behind the DiD Project: One Story About Secrecy, Silence, and Stigma at Work in Fundraising and Philanthropy

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Underwater photo view of iceberg with beautiful transparent sea on background

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:

Multi-colored hexagonsI 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.

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How to Do Inclusive Philanthropy: Introducing #DisabledInDevelopment

/ Ingrid Tischer / 1 Comment

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

/ Ingrid Tischer / 6 Comments

 

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

/ Ingrid Tischer / Leave a comment

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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This Labor Day, Let’s Commit to Wiping Out the Charity Model for All People With Disabilities in Our Lifetime

/ Ingrid Tischer / 6 Comments
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.
This Labor Day weekend has me feeling celebratory because there’s no Muscular Dystrophy Association (MDA) Telethon on the air for the first time in 49 years.
This is great. If you’ve got that particular diagnosis. If you don’t, you may still have a problem. If, say, you’re diagnosed with autism.
People with autism are still dealing with the same dynamic of destructive messages in the fundraising that purports to help them.
Criticizing how funds are raised generates a whole lot of anger if the critics are among those who are said to benefit from the efforts.  That’s why cross-disability solidarity, disability history, and telling our own stories are so important. 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.
I’ve said it before and it’s still true: “I look at fundraising as a means of not just supporting social change but in promoting it as well. How we raise money says a lot about our attitudes toward the cause we want to fund.”

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My Speech to the Graduates, or What I Wish I’d Known As a 5 Year-Old Crip

/ Ingrid Tischer / 6 Comments

Ingrid Tischer on the day of her kindergarten graduation in Greece, New York, circa 1969. She is wearing a rainbow vest and skirt sown by her mom. Note the clutching of the diploma and school-bestowed book-bag, and anxious expression -- all indicate a future in literary fiction writing and nonprofit fundraising.

Ingrid Tischer on the day of her kindergarten graduation in Greece, New York, circa 1970. She is wearing a rainbow vest and skirt sewn by her mom. Note the clutching of the diploma and school-bestowed book-bag, and anxious expression — all indicate a future in literary fiction writing and nonprofit fundraising.

If the grand success of the 20th century was the rise of disability as an accepted political identity, we intend for the 21st century to be the time when disability is recognized as the constant but hidden variable in nearly all formulas for global human rights. Including disability as a given factor in most people’s lives is essential to successfully advancing the rights of people who are members of minority communities, survivors of violence and/conflict zones, and veterans; people who live with chronic ailments and have survived catastrophic illness, people who are young and old; male, female, and anywhere on the gender spectrum. While disability has been understood as “different and divided” I believe it can come to be seen as “unique and united.”

As you sit sweating under an increasingly sweltering sun this day, feeling the inevitable effects of a wasteful attitude toward natural resources, you may not be thinking of another type of catastrophic loss caused by another type of massive denial. I speak of almost no one’s favorite topic: Disability. How denying disability’s central role in just about every human life relegates significant chunks of our lives — and worse still, people-sized chunks — to the rubbish heap. It may be that “disabled” doesn’t feel like a word that fits who you are. Fine. Have you ever felt vulnerable? Think of “vulnerable” as a gateway word to a chronic case of disability-speak.

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