“It’s hard to work in this sector and to be asking mostly people with disabilities for money. People with disabilities are disproportionately low income, and the system keeps us poor… And if foundations aren’t interested in funding disability rights and individual donors just can’t give enough, where does that leave us?”
Please share how you prefer to introduce yourself:
I’m a multiply-disabled activist and writer. I’m the Development Coordinator at the National Council on Independent Living (NCIL), where I handle all of our grant-writing, fundraising, and partnerships. I like cats, country music, and books about plagues.
Your pronouns are:
Current Job Title(s) and Organization(s) (if applicable):
Development Coordinator at the National Council on Independent Living (NCIL)
Years in philanthropy on both the fund-seeking and fund-giving sides:
Number of years in the workforce prior to 2007, when there was a surge into social media?
0, I was 14.
Number of years in the workforce prior to 1990, when the ADA was passed?
0, I wasn’t born yet.
Number of years in the workforce prior to 1977, when the federal Section 504 regulations were signed?
0, I wasn’t born yet
“I find that foundations are often very committed to ideas of civil rights, diversity, etc. but do not view disability as a part of that. That’s starting to change, largely due to the efforts of the Ford Foundation, but philanthropy still views disability from a very medical/charitable perspective rather than a social justice perspective.”
Have you held any positions that make funding decisions and/or sets funding priorities?
Somewhat — we do some pass through grants at NCIL to our member CILs and I am part of the team that decides who will be awarded pass-through funds.
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?
Do you have any colleagues on your team or in your organization who identify as disabled/chronically ill/aging?
Yes, and it’s one of the things I like best about working for a disability rights organization.
Do any of the funding decision-makers who are your peers, or who you report to, identify as disabled/chronically ill/aging?
Have you had any ongoing connections with other disabled/chronically ill/aging philanthropy professionals where you can support each other?
Have you felt it was difficult to build strong relationships with peer colleagues, superiors, donors because of communication barriers?
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?
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?
Have you ever left a position because of disability/chronic illness/aging-related barriers and/or policies made continuing in the position untenable?
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?
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?
“There are fewer foundations that will fund, say, advocacy around accessible voting for people with disabilities. There’s less of an impetus to fund societal change when it comes to disability.”
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?
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?
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?
My fundraising career has been very affected by the income restrictions imposed by public benefits systems.
I was on SSI (Social Security Insurance) for a few years when I was in college and grad school. When I started working, I was very clear with the SSA (Social Security Administration) that I was working, I was paying my own rent, and that I didn’t need SSI anymore. Which in itself is a privilege — I don’t rely on Medicaid for personal care attendants like many of my friends do, and I was privileged enough to be able to get off SSI when I could.
But because the SSA is a giant bureaucracy, it took several months for them to cut off my SSI, by which time they had overpaid me several thousand dollars. For awhile I was on an automatic payment plan, and then the debit card that was linked to my payment plan expired, and I didn’t make the connection. So my case was referred for wage garnishment, and there was nothing I could do about it. It was an automatic process that couldn’t be stopped after it had started.
“I’m mindful of how disabled people have been used in fundraising in the past. I never want to objectify anyone. But by the same token, fundraising is all about storytelling.”
For most of the last year, the SSA has been taking a large chunk of each of my paychecks. I’ve had to rely on my parents much more for financial support, and I’ve taken on a lot of side jobs in order to make ends meet. My debt should be paid off within a few months and I will probably actually cry with joy.
It’s hard to work in this sector and to be asking mostly people with disabilities for money. People with disabilities are disproportionately low income, and the system keeps us poor. I know several disabled people who are homeless right now. Organizations get criticized for charging money for things like events, trainings, etc., but we need money to keep our organizational work going. And if foundations aren’t interested in funding disability rights and individual donors just can’t give enough, where does that leave us?
Can you describe any gaps you’ve seen between commitments to disability inclusion in principle versus practice?
I find that foundations are often very committed to ideas of civil rights, diversity, etc. but do not view disability as a part of that.
“I hadn’t even thought to ask this person we were meeting with if their office was accessible and then all of a sudden there I was, a wheelchair user staring up a flight of steps. Eventually, they brought me around the back and I went up a small lift that was crowded with cleaning supplies.”
That’s starting to change, largely due to the efforts of the Ford Foundation, but philanthropy still views disability from a very medical/charitable perspective rather than a social justice perspective.
There are many foundations that will fund recreation for disabled kids, for example. Which is great! Adaptive recreation was a big part of my teen years. There are fewer foundations that will fund, say, advocacy around accessible voting for people with disabilities. There’s less of an impetus to fund societal change when it comes to disability.
Has the focus of your fundraising work ever been disability-related? If yes, did you have any opinions about how disability was framed and whether disabled people were leading it?
Well, I’m a disabled fundraiser working for a disability rights organization, so all my fundraising work is disability related.
What I’ve found difficult is the storytelling piece that comes with fundraising appeals. Since we’re an advocacy organization and we don’t do direct service, there aren’t always those tangible results, those individual people who are benefiting. It’s more about systemic change.
I’m mindful of how disabled people have been used in fundraising in the past. I never want to objectify anyone. But by the same token, fundraising is all about storytelling. The stories of individual people, who donors can relate to, are the most effective.
We want to make the donor the hero of the piece. But what does that say about the people whose stories we’re telling? Are they the victim, the damsel in distress that will be rescued when the donor gives? What messages are we sending there?
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?
I once went to meet with a potential funder in their office, and their office was a very old building and it wasn’t wheelchair accessible!
I often say that I’ve gotten complacent about accessibility, since I’m part of the ADA generation. I grew up after the ADA was passed, so I’m used to things being accessible, I’m used to my rights being protected. I’ve gotten even more complacent since I moved to the DC area, since the accessible public transportation in DC means that I’m able to move around much easier.
I hadn’t even thought to ask this person we were meeting with if their office was accessible and then all of a sudden there I was, a wheelchair user staring up a flight of steps. Eventually, they brought me around the back and I went up a small lift that was crowded with cleaning supplies.
I was honestly really embarrassed. Here I am trying to be professional and woo this funder and all of a sudden my existence is a problem. I have a lot of anxiety around professional events and meetings, because I’m young, I’m a woman, and I’m visibly disabled. I feel like it’s a constant struggle to get people to take me seriously.
THANK YOU, CARA!
Each Monday the Disabled in Development Project (DiD) features one disabled, chronically ill and/or aging Storyteller who shares 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 email@example.com. Tell your truth about our disabled labor to transform philanthropy!