#MoreThanMoney: Turning Disability Into Social Capital in 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.”


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

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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Know Your Rights and Readings

In no particular order!

Ford Foundation’s Disability & Philanthropy Forum

DiD on disability advocacy funding gap #FundDisAdvocacy

Legal Aid at Work’s Disability Rights program

Equal Rights Advocates’ Know Your Rights program

Transgender Law Center Know Your Rights program

National Coalition for Latinxs with Disabilities (CNLD)

Disability and Intersectionality Justice Summit (DIJS)

Disability Organizers Network (DOnetwork)

DREDF’s ADA protection fact sheet

Awesome Foundation Disability Chapter

ASAN’s Autism Speaks fact sheet

Breast Cancer Action’s Think Before You Pink campaign

Jerry Lewis, Jerry’s Orphans, and the Telethon

Myth of the Ideal Worker

Asset Based Community Development organizing model

Unconscious Bias in the workplace  

Rooted in Rights’ video story-telling

Disability Visibility Project story-telling

TRans yoUTH storytelling

More on the way!

 

 

Disabled in Development Project Field Allies FAQs

“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.

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Reclaim Labor Day When the First DiD Stories Go Live on 9/2/19

Coming Soon!

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.

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Frequently Asked Questions

Just the FAQs Version (and DiD Storyteller FAQs):

What:

“Stigma-busting tales of bringing our disabilities, chronic illnesses, and/or aging to our work in philanthropy and fundraising”

The Disabled in Development Project (DiD) is about advancing disability equity in philanthropy and fundraising. Our representation matters because access to funding is a critical component in dismantling structural ableism. 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. The rallying call: Tell your truth to transform philanthropy!

We’ll be speaking as the experts we are in disability inclusion work, regardless of job title or perceived status. We’ll share what we’ve gone through in bringing our knowledge of disability, chronic illness, and aging to work every day in philanthropy and fundraising.

Why:

Because we want to make philanthropy more effective and thus more powerful by centering more disabled people from multiply-marginalized communities.

Though just around 3% of people self-identity as disabled in philanthropy, there are many more of us than that, in addition to disabled, chronically ill, and/or aging non-profit fundraisers. That’s a lot of experience and a lot of it is untapped in current equity and inclusion work.

Who:

I’m seeking the stories of disabled people, chronically ill people, and/or aging people who have experience in one or more of the following roles:
  • You’ve worked/volunteered in philanthropy as foundation staff, consultant, evaluator, trustee, proposal reviewer, board member, or other.
  • You’ve worked as a non-profit’s development staff-person, including in support/admin positions.
  • You’ve held fundraising responsibilities in a non-profit senior-level position, on the board or staff.

How:

DiD will organize and share our (written) stories. Anonymity is an option and everyone will be (modestly) compensated for their time and expertise. Your participation will all be done through Google docs I set up for you that will remain confidential.
Contact to connect and/or refer: Ingrid@talesfromthecrip.org

When:

I’m aiming to go live with the first batch of stories on Monday, 9/2/19. Why? Because it’s Labor Day and we’re going to reclaim it for fundraising + disability from its telethon-related history!

Where:  http://www.disabledindevelopment.org


MORE FAQs

Who’s running the DiD Project?

All blame goes to me, Ingrid Tischer, and all credit is shared between me and various friends who generously gave feedback on pieces of the project.

Where does your funding come from?

That would be from me and the Ironlung Bank.

Whose stories are sought for the DiD Project and why?

I’m seeking the stories of disabled people, chronically ill people, and/or aging people who work/volunteer in philanthropy, work as a development non-profit staff, or hold fundraising responsibilities in a non-profit senior-level position.
Together, our coalition can be a powerful force 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.
Many people have quietly persisted in philanthropy and fundraising for years and decades. They should be included in the equity work happening now. Our expertise and our stories can transform philanthropy and fundraising into a stronger social justice force.

What would I do if I’m interested?

You email me at ingrid@talesfromthecrip.org and I send you links to two private Google docs that you fill out according to the directions.

What do I do as a DiD story-teller?

You’ll answer a bunch of mostly yes/no-type questions and then choose 3-5 “story” questions where you share your experiences. The former gives the context for the latter.
I clarify points with you, as needed. I copy-edit what you write, get your approval on the final text, and format a DiD blog post. You provide a photo and image description, if you wish. When your post goes live, we share it on social media.

When do DiD’s stories start going live?

The current plan is to go live on Labor Day, which is Monday, September 2, 2019. I chose this workers’ rights holiday because of its connection to the Jerry Lewis-led Muscular Dystrophy Association’s (MDA) telethon, in which Lewis mis-used fundraising to excuse such ableist messages as, “My kids [sic] can’t go into the workplace.”

What if I change my mind?

You can pull out anytime prior to the post going live. I will give you a date/time so you know when it’s scheduled for publication.

What can somebody do who can’t disclose their disability or chronic illness at work?

You can participate anonymously and we keep identifying details out. No one but you and me sees your Google docs.

What’s the the DiD Project’s goal?

The goal is to make philanthropy more effective and thus more powerful by centering more disabled people from multiply-marginalized communities.
To do that, DiD will organize and share the stories of often-invisible, often-silenced, and often-excluded disabled, chronically ill, and aging people who work in philanthropy and fundraising.

How does somebody’s story change philanthropy?

DiD’s stories – collectively! – will aim to:
1. Dismantle philanthropy’s charity model and replace it with the social justice model.
How? By improving philanthropy’s understanding of ableism, and getting disability civil and human rights in funding portfolios and on agendas.
2. Increase the representation in decision-making positions of disabled fundraisers and philanthropic professionals from multiply-marginalized communities.
How? By providing a safe and accessible space for sharing  disability cultural fluency and expertise on how to move access and inclusion from principles to practice.
3. Draw attention to the concept of a “work-disability balance” to prevent an effective “special track” from leading disabled, chronically ill, and aging people to “hitting the porcelain ceiling,” aka being demoted, blocked from advancement, or forced out from fundraising and philanthrop y.
How? By connecting the concepts of the ideal worker and unconscious bias to workplace policies and norms around disability, chronic illness, and aging.

Inclusion is great for the people it helps but why would all of this make philanthropy more effective and powerful?

The “people” inclusion helps include nondisabled people in philanthropy who don’t understand yet how the lack of funding for disability advocacy has been harming all marginalized communities.
Much of philanthropy still operates through an unexamined blend of economic privilege and the notion of “the unfortunates.” Historically, “disabled people” have been the embodiment of “the unfortunates.” That ableism is as outmoded as it is unconducive to effective advocacy.
Philanthropy is holding itself back by holding us back. Getting seats at the table isn’t a goal. It’s a means toward an end that benefits everyone.

Why does a space need to be “safe”?

Because in 2019 it’s still not safe for many disabled, chronically ill, and aging workers – especially those without organizational power – to disclose this identity issue.

Why is it such a problem if someone can’t disclose a private, medical matter at work?

Because accommodations are legitimate requests that make working and advancement possible. But your employer doesn’t have to provide them if you don’t disclose why you need them.

Can a parent or family member of a disabled, chronically ill, and/or aging person participate?

The DiD Project centers the first-person stories of disabled, chronically ill, and/or aging people who work in fundraising and/or philanthropy. Parents and family members have important stories that deserve to be heard but the DiD space is currently not focusing on them unless you, as a parent or family member, are yourself disabled, chronically ill and/or aging.

Do I have to have held a Director-type position to participate?

No! In fact, I want to hear from people who are not in senior-level positions because barriers to advancement are rife in our sector – as in most work-place sectors – for people who are managing disabilities, chronic illnesses, and/or aging-related issues.

What’s with all of the questions about age?

From my very limited – and white – point of view, I see older disabled people – many of whom are queer cis-gendered women – not being sought out as resources of knowledge and expertise in the current Diversity, Equity, and Inclusion (DEI) work in philanthropy. That seems wasteful. It also seems ageist in a gendered way, however unconsciously.

You do know there’s usually a separation between people in “philanthropy” and “fundraising,” right?

I do, and I understand that funders fear situations where they could be surrounded by fundraisers pitching them. But. Philanthropy is trying to address representation even as its problem is defined as a severe shortage of disabled representation. Non-profits have disabled people with relevant expertise, especially when you include older disabled advocates who are now in senior positions that have fundraising responsibilities. Now is a time to move beyond old divisions that are largely based on social conventions or fear.

Why do you mention “economic diversity” and ask about experience with public benefits?

Counter-intuitive as it may seem, knowledge of the constraints of, and inter-generational poverty caused by, the severe income and asset limits required by many public benefit systems is essential to disability-related philanthropy and fundraising. More disabled people in funding decision-making positions who have this experience  is the direction we need to go in.
A lack of knowledge about wealth is a terrible thing to waste. Especially when centering that particular lack of knowledge happens to also center people affected by racism, homophobia, transphobia and other areas of oppression, in addition to ableism.

Do I have to personally identify as “disabled” to participate, because I use the term “X”?

No. Your story will use your language because your identity is your choice. But for the purposes of describing the DiD Project generally, I’m using the term “disability” inclusively for learning differences, neuro-divergencies, addiction/recovery, and mental health issues.

Can I refer someone to you?

Yes – please do! Email me at ingrid@talesfromthecrip.org.

Welcome to the Disabled in Development (DiD) Project

Disability in Development (DiD) Project: Telling Our Truth to Transform Philanthropy

Connect. Belong. Succeed.

Access icon in blue and whiteThe 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.

Quick Links to More Information

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.

HERE’S WHAT’S UP, ADVOCACY FUNDERS: You, as part of the incredibly influential philanthropic sector, need diverse disabled fundraisers who are activists fluent in disability culture, politics, and movement history if you are going to achieve inclusion. That means race, class, gender, and LGBTQ discrimination are ALWAYS part of your cross-disability work. A disability organization that says it’s not “strategic” to publicly confront racism or transphobia that devastates disabled lives is not fighting for disability justice. Period. Your first step is realizing that transformation begins within your own organization: ✪ Does your foundation have any “out,” disability culturally competent program staff? ✪ Are your disability-related messages still communicating “charity” instead of justice? ✪ Are your metrics for disability-related projects appropriate? ✪ Do you require fundees to be led by disabled experts in their field? ✪ Are disabled people leading and informing the foundation with regard to work being done in disabled people’s name? If you’re funding other civil and human rights groups, disability justice advocates should be in your portfolio. www.talesfromthecrip.org

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.

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