“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 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.
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.
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.
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
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!
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 firstname.lastname@example.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 email@example.com.