Disability rights activist Dom Kelly says he jokes that he and his triplet brothers started their advocacy work at the ripe age of 4 years old.
“My mother put us in front of a room of high school seniors and said ‘tell your story, good luck,’” he says.
From those early days in the classroom, he took a detour — to become a founding member of the rock band A Fragile Tomorrow.
Today, he’s back to his roots, leading a new coalition that fights for disability justice across 14 states called New Disabled South.
The group’s goal is to improve the lives of disabled people in the South by advocating for policies that address issues around poverty, criminalization, healthcare and more.
Kelly, and co-founder Kehsi Iman Wilson, hope to inspire more young people to join this movement, as they rally lawmakers to pledge support for services that benefit people with disabilities before the end of Georgia’s legislative session.
Full interview transcript
Deepa Fernandes: “The ADA generation is made up of young people who grew up with rights and protections guaranteed under the Federal Americans with Disabilities Act of 1990. And while that law was a milestone, it did not end the fight for justice for people with disabilities. The fight is now being led by activists in the ADA generation. Let’s meet two of them now to learn more about what activated their advocacy and what issues are most important today. Dom Kelly and Kehsi Iman Wilson are co-founders of New Disabled South, a coalition fighting for disability justice in 14 states across the South. Dom joins us from Atlanta, Georgia. Welcome, Dom.”
Dom Kelly: “Thank you so much for having me.”
Fernandes: “And Kehsi Iman joins us from Tampa, Florida. Welcome to you as well, Kehsi Iman.”
Kehsi Iman Wilson: “Thank you so much.”
Fernandes: “So I want to start because both of you are in your early 30s, so you’ve only known life under the Americans with Disabilities Act protections. Dom, can you tell me about your personal connection to the disability community and how it informs your work?”
Kelly: “Absolutely. So I am one of a set of triplets and the three of us were all diagnosed with cerebral palsy when we were about a year old. For me, it impacts my mobility and my muscles in my legs and really it makes it more difficult for me to move around the world. And, I grew up surrounded by disabled kids, not only my brothers, but in community. My mother worked in the field. My mother had an early intervention agency. And I kind of joke that my brothers and I were thrown into advocacy when we were four years old, when my mother put us in front of a room of high school seniors and said, ‘Tell your story, good luck.’ Which really her philosophy was, I’m going to empower you to tell people who you are before they have a chance to define you.’”
Fernandes: “Okay. And KehsiIman, what about you? What’s been your experience living with a disability and how does that fuel your activism?”
Wilson: “Yeah, so I’m someone who came into a disability identity later on in life due to my mental health disabilities, specifically major depression. And I also have chronic fatigue. And those diagnoses started in my teens. But when I started working full-time, and I was forced to take days unpaid off of work, I realized that it would be in my better interest to make sure I was protected from job loss and things like that. And so I have worked almost exclusively in the social justice space, specifically in the realms of educational access and equity and racial justice work. And because of the intersections of those things with disability justice, I have always been very close to disabled people, the disabled community, and, of course, I have many people who are disabled in my family.”
Fernandes: “You know, we’ve heard from older activists in the disability community like the late Judy Heumann, about concerns that younger people are not as involved in the fight for equality. From your perspective, do you think this is an issue?”
Wilson: “I don’t think so. You know, we have knowledge and language that didn’t exist 20, 30, 40 – even 10 years ago. And I think young people are involved. That involvement looks differently, though. Advocacy looks differently. And I think a lot of people are tired and are exploring ways to be involved that feel more authentic and impactful.”
Fernandes: “And Dom, what’s the power and value of having people who are in their maybe twenties, or younger, involved in this kind of activism?”
Kelly: “Well, I think that, to Kehsi Iman’s point, it brings a fresh perspective. But also, disability justice, it requires us to think about this work in an intersectional way and to think about collective liberation. I think our younger generation has been so politicized by our health care system, in the medical industrial complex, and so much of the racial uprisings that have happened over the last few years around police brutality, that disability justice now is focused on, how do we look at those intersections? And I think that that’s what our younger generation is starting to really think through in a way that maybe previous generations didn’t think about in the same way.”
Fernandes: “Yeah. Kehsi Iman, I wonder if you can talk about challenges there in the South for people with disabilities.”
Wilson: “Poverty is a huge issue for people in the South, and we know a majority of disabled people in the South live in poverty. Large groups of disabled people in the South are impacted by the carceral system and the criminal punishment system. And so if you talk to anyone who’s disabled in the South and ask them how they’re experiencing the crisis of a lack of affordable housing, the crisis of a lack of access to health care, you’ll learn a lot about why this work is so urgent, in this moment.”
Fernandes: “And there are so many big issues there. And I want to just hone in on one, and that is the need for home care. And that’s because a person with a disability can have a range of needs. Sometimes it may include something like assisting a person to get up and get dressed, maybe helping folks with medication. Yet so few people receive in-home care. How do these services work and why are they so critical?”
Kelly: “Well, we have in this country what’s called the institutional bias, which means you’re guaranteed a spot in an institution or a nursing home, but you’re not guaranteed care in your own home or to live in your community. And that’s a big issue across this country. But it’s really, really huge in the South. We have waiting lists of people who are waiting for Medicaid waivers to receive home and community based services, and 75% of people who are waiting for waivers in this country live in the South.”
Fernandes: “And spell it out for us. What’s the difference between being in a nursing home or receiving that care at home?”
Kelly: “Well, I can give you an example (from) someone that I know. His name is Nick. He is a person with cerebral palsy, just like myself, who wound up needing to go into a nursing home because he didn’t have people around him who had the time or availability to provide the access of care that he needed. So he was forced to now live in a nursing home where he’s been for over seven years, waiting for a waiver to receive care in his own home from a staffer. And instead, he’s forced to live in a place where he doesn’t have control over his life. He can’t go out and work. He can’t go out and enjoy going to the movies or hanging out with friends, because if he leaves, he may lose his bed in the nursing home. He doesn’t have autonomy.”
Fernandes: “Now, you shared with us the voice of one mother. Her name is Alicia Boyd. She’s from Georgia, and she’s been on a waitlist for 13 years to get home services for her son. He has autism and she needs help managing some of his anger issues. But she’s been told that vendors do not have enough employees to meet demand. And she says she can’t work because she’s unable to get care for her son and is relying on food stamps and other safety net services to help make ends meet. Let’s take a listen.”
(Soundbite of Alicia Boyd): “I’m like a chicken with my head cut off because I’m all over the place, trying to go everywhere, trying to find anything or anybody (to) get help. And it’s just hard. And I want a nursing service to come in my home for my son because he doesn’t like to take medicine for me. But he’ll take it from a stranger…no problem. And if he can do that, that will stop some of his aggressions and everything that’s going on.”
Fernandes: “So, Dom, you’re in Georgia, where the legislative session is set to end March 29. What are you pressing state lawmakers to do to help people like Alicia Boyd get access to home care?”
Kelly: “Sure. Well, our waiting list for what is called the NOW and COMP waivers that would provide that home care for people with intellectual and developmental disabilities, the waiting list is over 7,100 people. And when they do get a waiver, they’re waiting for staff. Our staff, our direct service professionals, are paid $10 an hour, right now. So what we’re asking our lawmakers to do is fund the waiting list and increase the pay so that people can actually earn livable wages to do this critical work.”
Fernandes: “And as I understand it, Georgia has a budget surplus this year, so it doesn’t seem like it’s pulling money that doesn’t exist. How likely is success on this?”
Kelly: “I am frankly not entirely sure that we will get exactly what we’re asking for, but we’ve been pushing and pushing with advocates and I think we’re going to get something this session. And that means our fight is just going to have to continue even more in the year to come, the years to come. But I think we’re going to get a lot more this year than we have at any point in the past.”
Fernandes: “Kehsi Iman Wilson and Dom Kelly are co-founders of New Disabled South, a coalition fighting for disability justice in 14 states across the South. Dom and Kehsi Iman, thank you so much for joining us.”
Kelly: “Thanks for having us.”
Wilson: “It’s been an honor.”
This article was originally published on WBUR.org.
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