“I was once asked to serve on an evaluation committee that didn’t mention an honorarium and when asked, they replied that they didn’t generally pay volunteers. My response to that absurdity was that this was a policy they should revisit because evaluating applications is a good deal of work…Long story short, they gave my feedback consideration and their parent funder freed up more funding so that they were able to pay the entire evaluation committee. I was asked again and agreed to take on the evaluation responsibility under paid conditions that valued my time as a disabled person.“
Photo Courtesy of Heather Watkins
“Sometimes I feel like there is a lack of racial and cultural understanding/comprehension that does become a barrier.”
Name: Heather Watkins
Please share how you prefer to introduce yourself:
I am a Black disabled woman who is a disability advocate, author, blogger, mother, and graduate of Emerson College with a B.S. in Mass Communications. I was born with muscular dystrophy, serve on a handful of disability-related boards, and am a former Chair of the Boston Disability Commission Advisory Board.
I’m also a co-founder of “Divas with Disabilities Project,” a supportive sisterhood network representing women of color with disabilities. My publishing experience includes articles in MDA’s Quest magazine, Mass Rehab Commission’s Consumer Voice newsletter and I’ve blogged for Our Ability, Artoflivingguide.org, Disabled Parenting, Grubstreet, Rooted In Rights, Womens Media Center, and Thank God I.
My short story, “Thank God I have Muscular Dystrophy” was published in 2013 as part of compilation in the Thank God I…Am an Empowered Woman ® book series. My blog Slow Walkers See More includes reflections and insight from my life with disability.
Your pronouns are: she/her
Current Job Title(s) and Organization(s) (if applicable):
Disability rights advocate, writer/blogger, board member for handful of disability-related boards
Years in philanthropy on both the fund-seeking and fund-giving sides:
6-10
Number of years in the workforce prior to 2007, when there was a surge into social media?
Off and on for about 15 years
Number of years in the workforce prior to 1990, when the ADA was passed?
2
Number of years in the workforce prior to 1977, when the federal Section 504 regulations were signed?
0
“It’s depressing, given the fact that often the labor of disabled BIPOC doesn’t get adequately compensated, credited, or amplified in the same ways. It’s not life-affirming and quite devaluing to say the least.”
Have you held any positions that make funding decisions and/or sets funding priorities?
Yes, as a board member and and as a member of evaluation committees.
Are you currently openly identifying as disabled, managing a chronic illness, and/or dealing with aging issues in your workplace or with contracting companies, or in volunteer roles?
I self-identify as “disabled” and, yes, aging as an independent advocate, contractor, consultant, etc.
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
Have you had any ongoing connections with other disabled/chronically ill/aging philanthropy professionals where you can support each other?
Yes and no. Since some connections come from short-term projects and people don’t always identify in the same way or have the same lived experience that I may have as a disabled Black woman/disabled POC.
Have you felt it was difficult to build strong relationships with peer colleagues, superiors, donors because of communication barriers?
Sometimes I feel like there is a lack of racial and cultural understanding/comprehension that does become a barrier.
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?
Yes
Have you ever left a position because of disability/chronic illness/aging-related barriers and/or policies made continuing in the position untenable?
Yes, in both the corporate and non-profit sectors, when the atmosphere and mounting work on the board made it necessary.
“There have been many conversations that view disability from a single lens and white-centered. Disability, of course, has quite a range, nuance, and complexity. It’s a bit alarming but not surprising that this reminder has to be stated repeatedly.”
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?
Yes
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?
Yes
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?
No, not while working officially but much later when I had left the workforce and was on SSDI. It was within advocacy circles and activist groups.
How have you learned from/found support for advancing disability inclusion from other marginalized communities that you’re a member of?
Yes, especially online in social media groups, I learn something new every day and all the time.
What has your most positive experience of being disabled/chronically ill/aging in your philanthropic work life been?
Being part of great learning exchanges and listening actively about many experiences that don’t mirror my own. These have helped increase my compassion and sharpen my advocacy skills.
“It’s been my experience there are far too many persons who have proximity to disability but lack the actual lived experience that would inform their lens in meaningful and comprehensive ways. That is very problematic.”
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’d recommend organizations have disabled persons in executive roles/decision-makers and on boards, not just as as employees and never in tokenized ways. I recommend this because these changes would put the principles of “inclusion and diversity” into normalized practices beyond PR.
What was it like to disclose your disability, chronic illness, and/or aging issue in your philanthropic work life?
It was empowering because it expressed that I’d had lived experience and a lens perspective that helped inform my work.
What have conversations been like in your organization(s) about disability, chronic illness, and aging, both informal and official?
There have been many conversations that view disability from a single lens and white-centered. Disability, of course, has quite a range, nuance, and complexity. It’s a bit alarming but not surprising that this reminder has to be stated repeatedly.
How has your career been affected by the income restrictions imposed by public benefits systems and how do you feel about this particular experience informing/not informing a sector defined by economic privilege?
It’s depressing, given the fact that often the labor of disabled BIPOC doesn’t get adequately compensated, credited, or amplified in the same way as it does for others. It’s not life-affirming and quite devaluing, to say the least.
Can you describe any gaps you’ve seen between commitments to disability inclusion in principle versus practice?
Yes, in not having disabled persons (apparent, non-apparent, chronic illness) at every level of service within an organization, including its board, to help inform its mission and move its work forward.
In what ways has your experience with disability, chronic illness, and/or aging been helpful/a hindrance to your work and advancement?
It’s been a mixed bag — mostly helpful because it’s given me a higher level of sensitivity, plus analytical, adaptive, and logistic skills.
It’s generally aided me in being an out-of-the box thinker and increased my self-awareness and ability to find value in ways I perhaps might not have done if I were non-disabled.
I’d say frustrating aspects are days when I lacked the energy and stamina to power through and overshot my bodily and mental capacity too far, and used a non-disabled barometer for “success.”
“Know that your worth and work are valuable and make sure you’re compensated and credited accordingly.”
How would you describe the understanding of ableism within philanthropy, both as a workplace itself and in terms of seeking/giving funding?
It’s been my experience there are far too many persons who have proximity to disability but lack the actual lived experience that would inform their lens in meaningful and comprehensive ways. That is very problematic.
These persons are determining what constitutes best practices and who is deserving of funding — without that informed lens from first-person, directly-impacted sources.
How has philanthropy’s understanding of ableism affected your work?
I was once asked to serve on an evaluation committee that didn’t mention an honorarium and when asked, they replied that they didn’t generally pay volunteers. My response to that absurdity was that this was a policy they should revisit because evaluating applications is a good deal of work since an evaluator is using their discerning, critical eye. It not only is a fair and respectful way of operating, it’s an essential layer that aligns your organization, values, and partnerships from a comprehensive perspective, in principle and practice.
Long story short, they gave the feedback consideration and their parent funder freed up more funding so that they were able to pay the entire evaluation committee. I was asked again and agreed to take on the evaluation responsibility under paid conditions that valued my time as a disabled person.
Philanthropic and development goals typically require access to spaces where socializing happens, travel, and multiple forms of communication. Can you describe instances when your work was affected by access barriers and/or the costs related to them that you’ve had to cover?
There have been times I could not attend events related to philanthropy I was involved in because of self-care and/or caregiving duties, personal care attendant (PCA) scheduling, etc.
If you could give just one piece of advice to your younger self about being a disabled person in philanthropy, what would it be?
Know that your worth and work are valuable and make sure you’re compensated and credited accordingly.
THANK YOU, HEATHER!
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 ingrid@talesfromthecrip.org. Tell your truth about our disabled labor to transform philanthropy!
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