systems

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

/ Ingrid Tischer / Leave a comment
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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