Building a Disability Organization Rooted in Disability Justice
By Dom Kelly
There’s a lot to say about the nonprofit sector and how it so often burns out, underpays, and devalues the humans who do the labor. There’s a pervasive narrative that this should just be accepted as a cost of doing good in the world. But for marginalized people who find themselves in this work for reasons that are connected to their identities, this kind of thinking ultimately pushes us out of the sector altogether.
Disability organizations are no exception to this.
Underpaid workers, toxic leadership, white supremacy culture, consistent urgency, exploitation of multiply-marginalized talent – the list goes on. On top of that, we witness these organizations using the term “disability justice” while in no way–publicly or internally–exemplifying the values developed by Patty Berne and Sins Invalid that define and set the agenda for Disability Justice. While I’ve seen numerous disability justice practitioners give grace to those on their journeys toward adopting and adhering to this framework–I myself have made mistakes and learned lessons in this regard–there are still far too many disability organizations who purport their work as disability justice, but that fall into the typical ableist trappings of the nonprofit industrial complex.
This can be different, though. Not only should disability-serving organizations build themselves on disability justice principles, both internally and externally, but if we’re going to achieve liberation for our people, they must.
Disabled activist, writer, and scholar Liz Jackson, founder of The Disabled List, has been sounding the alarm about corporate disability inclusion initiatives for years. Liz rightfully critiques organizations such as Disability:In for not only aligning themselves with corporations that are consistently anti-worker, but actually awarding them for their supposed disability inclusion efforts. The organization’s Disability Equality Index scores companies on their disability inclusion initiatives, and year after year, they award huge corporations like Amazon and Disney perfect scores that permit those companies to pat themselves on the back. They also give high scores to airlines like American Airlines known to destroy wheelchairs, drug companies like Eli Lilly who gauge their prices, and health insurance companies like Kaiser who have destroyed disabled lives through delay and denial.
Disability:In is just one example of a disability-serving organization whose practices align themselves with companies that actively harm disabled people. There are far too many disability-serving organizations led by nondisabled people who perpetuate stigma and stereotypes by using outdated language and paternalistic messaging. There are ample examples of disability organizations that hold certificates that allow them to legally pay disabled people pennies per hour, even while their executives make six-figure salaries. There has been a long critique of Goodwill Industries for paying subminimum wages to disabled employees – all while Goodwill bills itself as offering programs to support disabled workers. And then there are the organizations who do really good work but who fall into the capitalist beliefs that it’s “too expensive” to give their employees – many of whom are disabled – opportunities for fully paid leave, 100% covered health care, living wages, and more.
Our sector can and must do better.
At my organizations, New Disabled South and New Disabled South Rising, we are actively working for better. Both our governing board and staff are made up entirely of disabled people, the majority of whom are queer, BIPOC, trans, religious minorities, and from a variety of ethnic backgrounds. We are a fully remote workplace that offers employees fully paid health insurance, unlimited PTO and sick leave, one year of fully paid parental leave that includes six months off and six months part time hours to transition back to work, a four-day, 32-hour work week, complete flexibility in working hours and location, and more.
None of this is to brag, but is to show that it can be done. We can build a disability organization built on disability justice principles like “sustainability,” “anti-capitalist politic,” “leadership of the most impacted,” and ”recognizing wholeness,” among others. We can hire and retain disabled people and treat them like the human beings they are, recognizing them as multi-faceted and understanding and trying to mitigate the harms of living under capitalism as a disabled person. We can follow the advice of brilliant minds like Maurice Mitchell, who calls on movement leaders to build resilient, sustainable organizations that “exude joy, build power, and secure critical victories for the masses of working people.” Disability organizations can and must be a part of that vision.
There is also the reality of being a nonprofit organization supported and maintained by philanthropy. I acknowledge that my nonprofits survive thanks to wealthy philanthropic organizations. If we are to achieve disability justice, however, philanthropy cannot exist. So many of us rely on grant funding, which often comes with strings attached that limit how it can be used. As the leader of an organization working toward this collective vision of disability justice, I often battle with this juxtaposition. What I do, however, is use that funding to do the work that I know will move the needle toward justice: paying disabled people who so often do unpaid labor and working to make their lives better day to day; organizing our community across the South and getting our region and people access to the resources they need to survive; fighting back against the harms of the nonprofit industrial complex – government, corporations, and more – and working toward a more just society for our people.
My hope is that we can collectively shift course before it is too late. The ongoing COVID-19 pandemic is adding tens of millions of people to our community, and our health care infrastructure is beyond repair. Structural racism, rampant gun violence, environmental warfare, abortion bans, police militarization, incarceration, and so many other ongoing issues feel at times to be insurmountable.
There are bright spots, however. 2023 has proved to be the year of the worker, with working people protesting, striking, and organizing against unfair conditions across the country. Voters are finding new ways to take back their power, like ballot referendums for abortion access in Ohio and against Cop City in Atlanta. Disabled people are uniting in the fight for deinstitutionalization and gaining more traction than ever before. But the work has to continue, and disability organizations must adopt new ways of operating if we’re ever going to see true justice and disabled liberation.
Dom Kelly is the Co-Founder, President & CEO of New Disabled South, a 501(c)(3) nonprofit organization, and New Disabled South Rising, its 501(c)(4) arm.
