Alongside some of this moment’s biggest grassroots struggles — mass movements to transform American policing, labor, health care and voting rights — the fight against ableism has been a constant undercurrent. During the late 20th century, the disability rights movement emerged in tandem with the long civil rights movement, leading to major reforms at the federal level. In 1990, the Americans with Disabilities Act, or ADA, formally banned discrimination against disabled people in employment, public services and commerce — a watershed moment for anti-ableism work.
At the same time, policy wins like these have been met with continued structural violence and neglect against disabled people in recent years. For example, as much as “50 percent of people killed by law enforcement are disabled,” including some of the most well-known cases of the Black Lives Matter era. As the 2024 election quickly approaches, a majority of polling places in the U.S. are not fully accessible to voters with disabilities — while an unprecedented number of new state laws have restricted voting access across the country.
Disabled organizing has also fundamentally transformed during the COVID-19 pandemic, a “mass disabling event” that continues to expose millions of Americans to chronic illness and preventable death. Although President Joe Biden signed a bill ending COVID’s “national emergency” status in April, the U.S. has seen a major surge in cases throughout the summer and fall. Disabled organizers — many of whom are immunocompromised or at high risk for severe complications — have consistently argued that the removal of COVID precautions and testing infrastructure are excluding many disabled people from public life.
More than 30 years after the passage of the ADA, the stakes for disabled people’s liberation are higher than ever. Disabled communities continue to experiment with new models for spurring social change, and a standout example is New Disabled South: a regional nonprofit founded last year “to improve the lives of disabled people and cultivate strong disability rights and disability justice frameworks in the South.” Through grassroots coalition-building, legislative advocacy and research, New Disabled South has taken a multi-faceted approach to building political power — grounded in abolition, popular democracy and the long history of disabled struggles in the U.S.
As New Disabled South prepares to roll out a slate of new programs, I talked to its president, CEO and co-founder Dom Kelly. We discussed the group’s organizing principles and tactics, the unique challenges of “building a political home” for disabled Southerners and the close connections between disability justice and other liberation movements.
New Disabled South works in a few different spheres, including organizing, policy and research. Talk me through some of the big campaigns or initiatives you’re working on at the moment.
First off, we’re the first and only regional disability organization in the country: there’s no one else doing this work at a regional level, and there’s so much opportunity and need in the South. So that’s where we come from in all the work we’re doing.
We’re working on launching an electoral organizing program between New Disabled South and our 501(c)4 arm, which is called New Disabled South Rising. And we’re launching a health justice organizing program, which will have organizers in key states across the region engaging with the community on issues that are determinants of health. That might be getting folks educated on how to enroll in Medicaid, working with community members on organizing care collectives [or] helping folks understand why abolition is a health justice issue.
We’re also about to launch a plain-language policy dashboard that in real time translates legislation into plain language. A big issue for a large segment of the community is that a lot of the laws that govern us are unintentionally (or even intentionally) written in a way that can be confusing. And that can really intimidate people and be a barrier for their participating in civic life. As legislative sessions across the South begin next year, we’ll be able to get really accurate plain-language information out in real time as bills are moving. That’s a piece of our legislative advocacy that I’m really excited about.
On the research side, we’re about to put out two reports before the end of the year. One is looking at the waiting list in Georgia for home care waivers: waivers that would allow for people with intellectual and developmental disabilities to receive care in their homes, rather than being institutionalized or forced into nursing homes. We were able to get data which shows that it’s majority white folks who are receiving waiver services, and majority people of color (particularly Black folks) who are on the waiting list for these waivers.
The other report is a landscape analysis of our community’s interaction with the carceral system, which is a precursor to a larger project we’re doing to make the case for more funding for non-police crisis intervention models. We’ve seen that police continually harm disabled people, and we want to prove that non-police intervention models are important for not only saving disabled lives but improving outcomes.
Disabled organizing in the U.S. has relied on a few different approaches, from the disability rights movement in the 1970s and ‘80s to the more recent framework of disability justice. When New Disabled South was founded last year, where did you see yourselves within that history?
My co-founder Kehsi Iman Wilson and myself, we’re both members of the “ADA generation.” We were after the “Capitol crawl” that got the ADA passed, long after the 504 sit-ins. Disability justice, as a framework, was developed in the mid-2000s, so it’s still relatively new — although disability justice work has been going on for a long time.
We both come from very different backgrounds, and we come from both having protections in school like Section 504, [and] for me, having physical access in a lot of places thanks to the ADA. Because of that, and knowing the history of the disability rights movement, we recognize that disability rights has not gone far enough, that [it] has often fed into a capitalist system that continues to harm and disable people.
As myself and Kehsi Iman were both politicized, radicalized if you will, we understood the harms of capitalism, the harms of the carceral system, the harms of policing. And as students of the incredible work of Mia Mingus and Patty Berne — and all the incredible folks who came up with disability justice principles — we understand that these spaces have been historically white, cis, straight led, and that disability rights movements didn’t really think about the intersections of disability and so many other issues.
We say we do both disability rights and disability justice: because the legislative piece is really critical, [but] we also see the shortcomings of these systems that we live under. And we want to have a place where we can recognize that work to tear down systems that harm and build new systems.
When there are clear limitations when it comes to policy and legislation, how do you find the right balance between working inside and outside of the electoral system?
That’s such a great question, and it really is difficult. For instance, our work around Home- and Community-Based Services, or HCBS, requires us to be lobbying our elected officials — to do a little bit of the, for lack of a better term, “bootlicking” that you’re often required to do in order to get what you’re asking for.
How I feel okay about doing that is that we’re also holding these folks accountable. I’m not going to the [Georgia] governor’s office and asking for dollars to fund these waivers while also not publicly speaking out about the atrocities of our governor: the anti-trans legislation that he’s tried to push, and the voter suppression that he’s been the architect of.
And that’s not a partisan thing, either. We’ve been very active in the Stop Cop City referendum campaign, and Democratic politicians in Atlanta have done some egregious stuff to try to squash the will of the people. We have been outspoken about that, and organizing to make sure that our communities’ voice are a part of that effort to stop the construction of Cop City.
The balance, I think, is being a part of the conversations that we have to. Our voice is needed in the fight for things like HCBS waivers or the abolition of subminimum wage. But we’re gonna say things and organize in ways that also fight the machine, if you will, that makes those decisions — and mobilize our community to think about how we can care for each other. We can’t always wait on the government to give waivers, for example. We have to figure out how we build systems of care within our own communities.
Disabled people can often be very isolated from each other for a variety of reasons. How do you effectively build solidarity among disabled people who may not always see themselves in the same category?
That’s the base-building challenge for us. There are people who maybe don’t identify, who have felt excluded because of ableism, or have felt excluded from disability spaces because of racism or classism. I think one of the tactics that has worked has been not trying to push people toward their disability identity, but to figure out where the common ground is and what issues resonate the most.
I can make a choice to talk to someone about disability pride, and how important it is for us to identify as disabled, and what that means as a cultural identity, a political identity, and the power behind that. But that probably isn’t going to move the needle as much as me saying, “Hey, I benefited from Medicaid as a kid, and this was my experience with it.” And someone saying, “Yeah that’s also my experience”: so, connecting with them on the issues and politicizing them around these issues.
It really takes thoughtfulness and dedicated investment and time with people. If we can show them that they’re not alone in [their issues] — and that we don’t have to accept that as par for the course, we can actually work to disrupt those systems and change that — that brings people in.
Something that really stood out to me about New Disabled South is how you talk about the connection between ableism and policing. I’d love to hear you speak more on the institutionalization of disabled people, and the relationship between that and the prison system.
When we talk about policing, oftentimes the abolitionist movement doesn’t talk about all-congregate settings and institutions [like group homes, nursing homes and psychiatric facilities], but we need to — because they harm the same way that prisons do. So a role that we play is trying to be a part of other movement spaces, and bring a disability lens to those spaces, and organize in partnership with them. When you have those conversations with people, they really do see, “Oh yeah, this work we’ve been doing all along is a disability issue,” and they didn’t even realize it.
We have a system of government that doesn’t value giving people the resources they need to live full, healthy lives. We can talk about “crime” and how that’s manufactured — but if people’s needs were met, we’d have less people interacting with the carceral system. Instead of doing that, our government funds prisons, puts more money into police and more people are criminalized. It’s the same sort of thinking with disability. They’d rather throw people away than invest in giving them full lives and autonomy.
The prison-industrial complex and institutionalization are cut from the same cloth. It goes back to eugenics, it goes to back to “ugly laws”: we still live in a country where there’s bias toward sending people away instead of giving them the opportunity to live in community. Recent stats show that we still have extremely high rates of institutionalization for disabled people in this country — despite the fact that we had a Supreme Court decision in 1999 that guaranteed the rights of disabled people to live in community.
Oftentimes, it happens because folks wait for Medicaid to be able to receive care, and institutional bias guarantees that you have a spot in nursing homes or any other sort of congregate setting — but doesn’t give you the money to live independently. It actually costs more to institutionalize people than to give them the care they need in their homes. But people of all ages are thrown into nursing homes every single day because their families can’t afford to hire a caregiver, or take care of their family member themselves.
And our community gets caught up in the prison system as well. Disabled people live in poverty at twice the rate of non-disabled people. So when you have a mental illness and end up on the street, sometimes you’re left with no choice but to find yourself in a jail or prison — because you’re gonna get your needs met more there than you would out on the street. It’s a cycle that our government continues to feed without investing in people and their needs.
This past fall, President Joe Biden declared on “60 Minutes” that “we still have a problem with COVID … but the pandemic is over.” As an organization that’s working closely with immunocompromised and high risk people, how are you thinking about COVID when much of the country has “returned to normal”?
For us, it is top of mind in our organizing. We know that in-person conversations and gatherings are really critical for so many people in our community and so much of the work we do — and for so many people, virtual access is also critical. So we really try to find ways to do both as much as possible.
A good example is we’re having an inaugural gala in November to showcase our work and celebrate with our community. We’re making it hybrid, and we worked with a public health expert to make sure we have a mask-mandatory policy where we give out N95s to everybody. We worked with the venue on their HVAC and air filtration. We have these Corsi-Rosenthal boxes, which are one of the best air-filtration [devices] for COVID you can have. We’ve been very thoughtful in our approach, and also privileged to be able to have COVID experts at our disposal. We’re not just doing “masks recommended” or “masks required” — we’re taking those extra steps to make sure that the air is clean and that we’re thinking about COVID mitigation holistically.
But it’s just not happening in other spaces, unfortunately. It makes me sad. I still wear a mask in public, and that’s just important to me and my health, and also community care. I also haven’t been perfect in the last couple of years either, and that’s been something that I really have to grapple with. But it’s really tough to live in this society right now where the majority of people have all but given up on COVID mitigation.
It’s hard to be a person who’s conscious of COVID in this current moment while also recognizing that we have all been let down by these systems that are supposed to be there to protect us. And so now it’s like everyone for themselves. As an organization, we’re just trying to make sure that we’re doing our part so that all of our people can be involved in our work.
Are there collective demands that people could be making in this moment to reduce some of the ongoing harm of COVID?
One I can think of is requiring masking in health care settings. To me, it is an absolute no-brainer to require that when you go to a doctor’s office or hospital where there are sick people, that not only do [visitors] have to be masked, but doctors and nurses have to be masked. I don’t see any reason why we can’t have that, and I know there are organizing efforts around that that are active and ongoing.
Do I think we can win it? I don’t know. We’re in a COVID surge right now and it’s still not happening. Coming up into an election year, I would guess that the Biden team probably feels that they can’t talk about COVID because it would lose them votes. It’s become such a partisan issue, an issue where if they say or do the wrong thing around it, they’re gonna lose power. And the sad part is, I’m pretty sure all these folks in power do every possible thing to mitigate COVID behind closed doors.
Do you feel like the model you’re building in the South could be useful for disabled communities in other parts of the country?
For sure. I would say the tactics and the kind of work that we’re doing, I wouldn’t call that original. I think for us, what’s unique is the approach that we take to it: thinking about this work from a regional perspective, [approaching] issues holistically, together rather than in silos. And you’re absolutely right — we actually want to replicate it. My intention is to have a regional organization for every region in the country. That’s the goal in the next five to 10 years, [and] we’re starting in the South.
And also, I hope other folks do this too. I want other folks to be able to start this kind of thing, have it really be led by folks who are most impacted. So many disability organizations are run by non-disabled people, and that’s the opposite of what I think we need. I hope that [people] think, “Hey, we can think differently about how we organize in the South.”
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