“I would like to see nonprofits and NGOs all around the world have more power in relation to philanthropy.“
Photo courtesy of Marsha Saxton
“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.”
Your pronouns are:
she/hers
Current Job Title(s) and Organization(s) (if applicable):
I’m the Director of Research at the World Institute on Disability and Senior Lecturer in Disability Studies at UC Berkeley.
Years in philanthropy on both the fund-seeking and fund-giving sides:
40+
Number of years in the workforce prior to 2007, when there was a surge into social media?
25
Number of years in the workforce prior to 1990, when the ADA was passed?
8
Number of years in the workforce prior to 1977, when the federal Section 504 regulations were signed?
0
Are you currently opening identifying as disabled, managing a chronic illness, and/or dealing with aging issues in your workplace or with contracting companies, or in volunteer roles?
Yes
Do you have any colleagues on your team or in your organization who identify as disabled/chronically ill/aging?
Yes
Do any of the funding decision-makers who are your peers, or who you report to, identify as disabled/chronically ill/aging?
Yes
“We focused on the local foundations with whom we had connections. Our agencies included about a dozen different marginalized groups– homeless, disability, women’s, housing, education. We were all fairly small organizations. The goal of our meeting together was to create more power in relation to the foundations from whom we were seeking money.”
Have you had any ongoing connections with other disabled/chronically ill/aging philanthropy professionals where you can support each other?
Yes
Have you felt it was difficult to build strong relationships with peer colleagues, superiors, donors because of communication barriers?
No
“Some years ago when I was in Boston, a group of us in nonprofits got together to create a kind of ‘labor union.’“
Have you ever been provided with professional development, mentorship, and/or leadership training programs where you didn’t have to provide informal programmatic and/or physical access advising?
Yes
Have you ever experienced what you consider significant secondary stress, anxiety, and/or fear about meeting professional expectations because of disability/chronic illness/aging-related barriers and/or stigma?
No
Have you ever left a position because of disability/chronic illness/aging-related barriers and/or policies made continuing in the position untenable?
No
Have you ever been told in a work performance-related conversation with a superior that your presence is an inspiration to others, and/or that your presence in the workplace is itself remarkable?
No
Have you ever been physically touched, grabbed, patted on the head, had your assistive equipment handled without your consent by a peer, superior, or donor in a work environment?
No
“The response of the foundations was frustrating. Some that prioritized disability replied, ‘We don’t do race.’ Some that prioritized race responded, ‘We don’t do disability.’ It seemed as if disabled people don’t have a race. They’re just disabled. And women of color can’t also have disabilities.”
Have you ever struggled to participate in team-building exercises, workplace wellness programs, or other initiatives that were optional but not understood as presenting access barriers?
No
Have you belonged to any other employee resource groups (ERGs), affinity groups for disabled/chronically ill/aging people? Any for other groups (parents, LGBT, etc.) where you found support?
Yes
“I wish I had required that there be other people with disabilities invited at these events to back me on these panels so I wasn’t pretending to represent something that wasn’t true, and I wasn’t so often the only one with a disability.”
What type of system changes or workplace policy in philanthropic spaces have/would you recommend, based on your experience of disability/chronic illness/aging?
I would like to see nonprofits and NGOs all around the world have more power in relation to philanthropy.
We’re generally at their mercy — they have the money and they have the power. And we have to grovel to get money. I don’t think of philanthropy organizations as “generously giving away their money.” I think it’s often money they have to give, and that we deserve to put to good use. We just need to think and act thoughtfully and powerfully about how to distribute it well.
Some years ago when I was in Boston, a group of us in nonprofits got together to create a kind of “labor union.” We called it “Community Works.” (That name is now used for a workplace contributions network, so what we did is not available on a website.) The group eventually disbanded and I moved back to California. I don’t know what happened to this effort. But we had something interesting in our minds.
We focused on the local foundations with whom we had connections. Our agencies included about a dozen different marginalized groups– homeless, disability, women’s, housing, education. We were all fairly small organizations.
“As a person with a relatively non-severe disability, I was both privileged and tokenized.”
The goal of our meeting together was to create more power in relation to the foundations from whom we were seeking money. We brainstormed together about how we could:
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Challenge needless or back-stabbing competition.
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Consider the possibility that we could decide together who should apply to which grant opportunities instead of trying to elbow the others out.
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Support each other to thrive and get funding by referring grant connections to other groups that seemed an appropriate or better match than each of our individual agencies.
We had a few meetings with foundation leaders and some of these foundation people were intrigued and heartened. One was named Jean Entine, at the Boston Women’s Fund. She liked our chutzpah!
Here in California, Jean Argoff has been a great ally in disability foundation funding, but we didn’t involve her in this project. Just want to give her a shout out. I wish I had more ideas about how to challenge the one-sided power of foundations!
How would you describe the understanding of ableism within philanthropy, both as a workplace itself and in terms of seeking/giving funding?
A theme, that then was repeated again with different foundations, revealed that some foundations have confusion about disability and racism.
My women’s organization at the time (Project on Women and Disability, in Boston) involved a number of women of color who wanted to create a project specifically for disabled women of color. They wanted to produce poetry, writing and supportive events for disabled women of color. We wrote some grant applications describing our projects in mind.
The response of the foundations was frustrating. Some that prioritized disability replied, ”We don’t do race.” Some that prioritized race responded, ”We don’t do disability.” It seemed as if disabled people don’t have a race. They’re just disabled. And women of color can’t also have disabilities.
We tried to engage them in conversation about this and they weren’t interested. The categories were simplistic and rigid. This was over 20 years ago, and now we see more focus on specific categories of people with disabilities around culture. Of course, people with disabilities are humans –including all other categories, race, class, gender, and so forth. But this revealed that many foundations have really specific categories that they fund, for whatever reasons of their mission, that may exclude the reality of social/cultural intersectionality.
If you could give just one piece of advice to your younger self about being a disabled person in philanthropy, what would it be?
Great question! 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. I now look back and see how isolated I allowed myself to be sometimes. This was in my 20s, and of course, not my fault. Even though we had organizational and personal partners and friends involved in the projects, the process could be hard on us. We, each of us, would go sometimes, and speak separately on a panel “representing disability,” as if I or someone could offer the “the disability community perspective.”
As a person with a relatively non-severe disability, I was both privileged and tokenized. I could be put in the position of being more acceptable to whatever group I was asked to speak to. I didn’t require expensive accommodations, or change or affect the dynamic in a meeting.
This was kind of weird for me– I wish I had pushed harder to include more disabled people, especially more severely disabled people. I was a “bridge person,” perhaps somewhat analogous to “acceptable homeless people” or other marginalized people, who were considered appropriate for the venue, and didn’t ask for too much, or make anyone uncomfortable. I regret speaking on some of the panels and talks. I wish I had required that there be other people with disabilities invited at these events to back me on these panels so I wasn’t pretending to represent something that wasn’t true, and I wasn’t so often the only one with a disability.
I’d like to offer two secrets that have helped me in grant fundraising.
1. One crucial point is to really research what the foundation is looking to fund.
Do your homework—study the website; ask a lot of questions; get on the introductory calls; find out who they have funded before; make relationships with the funders and their board members as much as you can. Make your group visible to them. Figure out who these people are and why and to whom they are giving money. They have money and they want to develop the mission and passion that is THEIR SPECIFIC MISSION. It may seem general or broad in their descriptions. Dig deeper to figure out how to aim for their target. Direct your proposal to that.
2. Write your proposal with heart, not just the requisite goals, deliverables, budget, timeline, evaluation.
Of course you want to sound competent and qualified. And documenting how wonderful and effective you are is great. But reveal this not just with your data and history, but also by telling stories, offering quotes from your people, showing them your soul. They are used to reading dry, stuffy grant proposals all the time. The grant reviewers will respond to passion, depth, excitement.
THANK YOU, MARSHA!
Each Monday, the Disabled in Development Project (DiD) will feature one disabled, chronically ill and/or aging Storyteller who will share their experience in advancing disability equity in philanthropy and fundraising.
DiD’s community development goal is to make philanthropy more effective and thus more powerful by centering more disabled people from multiply-marginalized communities. DiD Storytellers educate funders about ableism, celebrate advances in disability inclusion, and testify to the ableist structural barriers they’ve encountered, and that may have halted their career advancement or forced them out.
All Storytellers self-select questions to answer from an extensive list. All Storytellers are modestly compensated for providing their expertise on how to move disability inclusion from principle to practice in philanthropy and fundraising.
If you’d like to become a Storyteller or Field Ally, contact DiD Founder and Director Ingrid Tischer at itischer@talesfromthecrip.org. Tell your truth about our disabled labor to transform philanthropy!
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