By Jessie Calero, fundraiser and freelance writer
No one wants to talk about the cold hard truth — that within philanthropy, nonprofits whose missions are focused on disability are often the worst offenders in terms of ableism and its impacts.
As an Autistic woman and as a fundraiser who has worked at a disability-focused nonprofit for almost 10 years, one of the first things I’m asked when I talk about my identity or the work that I do is, “Have you heard of [X nonprofit]? They work with people with disabilities.”
Nine times out of ten I find myself fighting the desire to transparently respond with, “I know a lot about them. PLEASE DON’T GIVE THEM YOUR MONEY, and this is why …”
One thing I’ve learned from navigating an abled world is that this isn’t actually the conversation that these well-meaning people want to have. No one wants to talk about the cold hard truth — that within philanthropy, nonprofits whose missions are focused on disability are often the worst offenders in terms of ableism and its impacts.
As an antidote to this problem, I’m offering five practices abled people can look for when they want to know if a nonprofit that supports disabled people is worth investing in — as well as five ways disability nonprofits can shift their culture in a meaningful direction.
1. Disability organizations should always center the lived experience of disabled adults.
Some of the most ubiquitous nationwide disability organizations are actually prone to dismissing the voices of disabled adults in order to cater to “special needs” parents. (Pro-tip: It’s massively problematic to form an identity around barriers you will never experience, as an abled parent — and “special needs” is a deeply offensive euphemism for disability). These disability organizations often provide services and resources for disabled children and their families, but they usually fail to realize that these children grow up and desperately want to learn, work, and engage in their communities as self-actualized adults.
So, rather than addressing the real barriers disabled people face and resourcing programs that the disabled community has identified as most helpful, many of these nonprofits focus only on providing support groups for the family members of disabled individuals, fundraising in support of “cures” (usually for communities that are not interested in being erased), and shooting puzzle-piece logo-covered paraphernalia into the world with a t-shirt cannon (again, hugely problematic because disabled people are not puzzles in need of solving).
Nonprofits that truly center the needs of disabled people design their services around what disabled people truly want: access to adaptive and individualized education, accommodations and support to allow them to participate in the workforce at an equitable rate of pay, and for communities to embrace universal design (spaces and processes that are created to be accessible to people with a wide range of skills, abilities, sensory needs, body sizes, and ranges of mobility).
2. Disability organizations need to employ disabled people at minimum wage or higher.
I know what you’re thinking: “Isn’t this the bare minimum?”
The short answer is no.
There are only two populations in the United States that are exempt from the protections provided by the federal minimum wage: disabled people, and people who are currently incarcerated.
While no one would be surprised to learn that corporations exploit the labor of vulnerable workers in order to make a profit, many people are very surprised to learn that this practice is also prevalent among nonprofit organizations whose central missions are to provide opportunities for the very communities they are exploiting. These organizations, who maintain something called a 14(c) certificate in order to legally compensate their employees below minimum wage, often created for-profit subsidiaries, wherein they hire people with disabilities from their programs to provide piece-meal labor (stuffing envelopes, shredding documents, packaging products, or stocking shelves).
They then bill clients for these services at the market rate while simultaneously billing Medicaid for providing “job training” to their “employees,” ensuring they turn a profit no matter what level of productivity individual employees achieve. These organizations often hire people for whom they know the work would be largely impossible.
A young lady I know, who had limited use of her hands, worked 30 hours a week stuffing envelopes. She made anywhere between $5 and $7 dollars a pay period because the work required fine motor skills she did not possess. She was later hired as a receptionist within another organization where she was able to do her job using a hands-free headset. In one hour of work in her new position, she made more than she had in 60 hours of work in her previous ‘job.’
These enterprises, known as “sheltered workshops,” are cash cows. With the proceeds from for-profit enterprises, nonprofit organizations are able to fund other areas of programming — programming that is supposed to improve quality of life for people with disabilities.
There are many arguments for why these sheltered work opportunities are meaningful.
But I will not entertain the idea that there are just some people for which real, gainful employment isn’t feasible, or that the ends (funding for other disability-focused programs) justify the means (exploitation). Whether someone has limited physical mobility, is a nonverbal communicator, has significant behavioral needs, or all of the above — with the right support and the right job placement (which takes more time, effort, and planning up front), it is possible for these people to have real, fulfilling jobs.
At the end of the day, if a nonprofit organization can’t rise to the occasion of equitably paying disabled people, they have no business fundraising on their behalf.
3. Disability organizations must never promote inspiration porn, even though it’s effective in fundraising.
We’ve all seen it: the story about the man with an intellectual disability who has never missed a day of work at the local grocery store — the story about the teenager with Down syndrome who got voted homecoming king.
Why are these stories damaging?
Because these stories fail to acknowledge the ableist barriers that make these situations ‘unique.’ The man with an intellectual disability has never missed a day of work at the local grocery store because it took him three years to finally land a job. He’s afraid to take time off because if he causes his employer the slightest inconvenience, he could get fired and never find work again. The teenager with Down syndrome is actually homecoming king because he’s incredibly friendly and has an amazing sense of humor, but it ends up being a featured story on the local news because no abled person finds it believable that someone with Down syndrome could be popular. The local news instead applauds an ‘inclusive’ student body for pitying a disabled person enough to recognize him as their peer.
These are not stories that are written for, or center, disabled narratives. These stories are written for the abled gaze. We could share both of these narratives in a way that honored the experiences of both of these disabled men — but because most organizations have a primarily abled donor base, they cater the stories to that base in order to increase fundraising.
4. Disability organizations must ensure that people with disabilities are included at all levels of the organization.
While this should be the case within every community business — and frankly, every nonprofit organization — this is not even the case at a lot of disability nonprofits who claim to be the experts at removing barriers and providing accommodations.
Disability organizations should actually prioritize hiring disabled consultants and trainers as well as recruit disabled people to serve on their boards. Unfortunately, this is not a priority among many organizations.
In my own experience, a local nonprofit asked myself and another Autistic woman, a dear friend of mine, to serve as unpaid members of an advisory committee. Before agreeing to take this on, me and my friend met with the executive director to express concerns about the way the organization had responded to disabled community members in the past. The conversation, while difficult, seemed to go well. We challenged her to skip the creation of an advisory board and instead hire and pay disabled consultants for their time — as well as engage these potential ‘volunteers’ as full members of the board.
This seemed to resonate with her. I told her that if the organization was truly interested in changing its culture, I would be willing to give my time as a board member, both to assist with program design and to contribute based on my track record as a successful fundraiser and grant writer. The ED expressed interest in this possibility, and we all left the meeting excited.
And then within a month, she reached out to say that she had “forgotten” to invite us to their recent annual meeting where new potential board members were introduced — but that she would still love for us to join the advisory committee.
This organization, whether out of fear, discrimination, or severely incompetent leadership, lost the opportunity to incorporate two deeply committed, experienced, and valuable assets onto their board. People with disabilities, without question, have the lived experience and the capacity to contribute meaningfully as members of any board of directors, if only organizations make the effort to create environments that disabled people are welcome to serve in.
5. Disability organizations must recognize that disabled people are not a monolith.
Disability organizations need to understand the intersections between disability and race, gender identity, and sexual orientation. Also, their employees, volunteers, board members, and the people they support should reflect the community they live in.
In the world of disability, there is an unfortunate and patently false notion that disabled people are primarily white men. A truly inclusive disability organization acknowledges that the disability community is composed of folx who are Black, Indigenous, and People of Color. Truly inclusive disability organizations are able to acknowledge that coming from BIPOC communities deeply influences a disabled individual’s experience — both in terms of accessing support and in terms of experiencing discrimination in their community.
As we continue to examine racial disparities in the United States, it’s important to note the implications of being BIPOC and also disabled. Ableism and racism intersect and intertwine, both stemming from white supremacy culture, where the value of a person is based on “societally constructed ideas of normality, intelligence, excellence, and productivity.”
Furthermore, there is a hesitation in acknowledging that people with disabilities understand their own gender or sexual orientation. Truly inclusive disability organizations have the capacity to acknowledge that disabled people (whether white or BIPOC) can also identify as lesbian, gay, bisexual, and transgender. They acknowledge that people with disabilities have valid gender identities and valid sexual orientations. They dismiss the idea that disability precludes an individual from being able to fully participate in adult relationships, physical expressions of affection and intimacy, and the creation of successful lives and families of their own.
My sincere hope is that transformational change will occur in the disability sector in the coming years, both locally and nationally.
In exploring my own identity, I have had to overcome feelings of internalized ableism. I have had to learn to embrace aspects of my neurodiversity that I have masked or smothered for over 25 years. As a direct result, I now find myself communicating more authentically with the people around me. I also now have more frank conversations with my peers in fundraising, acknowledging the very real equity gaps in philanthropy.
I have learned that there may be hope for the nonprofit sector after all, especially when we acknowledge that the world of philanthropy is still mired in a culture of toxic white saviorism. While it is only beginning to grapple with the realities of racism and its deeply entrenched transactional, donor-centered practices, there is further hope for this sector when we focus on addressing and dismantling the practices and patterns of behavior that have damaged the communities we want to support.
And it is possible to rebuild ineffective organizations in ways that can meaningfully center the communities for whom they were created, whether for disabled people or other communities — through honoring the lived experience of community members, prioritizing equitable compensation and hiring practices, eliminating donor-centered storytelling, and acknowledging the intersectionality between disability and other identities.
As fundraisers and leaders in philanthropy, we can engage in the hard work of re-examining the spaces we take up and ensure that they are spaces we belong in. We can do the even harder work of ceding that space to the people who should have owned it all along, but were purposely prevented from inhabiting it.
My sincere hope is that transformational change will occur in the disability sector in the coming years, both locally and nationally. I hope that my son, who is also neurodiverse, meets a world that acknowledges and values the social and cultural contributions that disabled people make. More importantly, I hope that he is able to see the fingerprints I hope to leave on the disability landscape in our community.
Jessie Calero (she/her/hers) is a life-long resident of New Mexico who earned her Bachelor and Master of Arts degrees from the University of New Mexico. With over 10 years of experience in nonprofit leadership and fundraising, Jessie serves as director of development within a disability organization based in the South Valley of Albuquerque. She enjoys freelance writing and fussing with houseplants in her spare time. As an Autistic woman, Jessie provides training focused on ableism and its impacts to nonprofit organizations and community businesses that want to prioritize accessibility, inclusivity, and universal design. She can be reached via email or on LinkedIn.