Also Listen on:
In this episode of Accessibility Now, recorded live at the 2025 National Council on Independent Living (NCIL) Conference in Washington, D.C., we share conversations with disability advocates from across the United States. Each guest talks about the work they are doing in their communities to advance accessibility, equity, and independent living. You will hear about advocacy on women’s health and accessibility, statewide disability policy, community-based services, housing initiatives, youth transitions, disaster preparedness, Medicaid waiver programs, transportation training, and the importance of having people with disabilities at decision-making tables. Watch or listen to the full episode here, or jump to a specific interview using the timecodes below. To see all 20 interviews recorded at NCIL, visit this link.
Timecodes:
00:00 Intro & Monique Stamps – NC Statewide Independent Living Council / Women Embracing Abilities Now
02:20 Harry Weissman – Disability Policy Consortium (Massachusetts)
05:30 Cynthia Coffin – Disability Empowerment Center (Seattle)
07:10 Colleen Roche – New Jersey Statewide Independent Living Council
10:00 Christie Graves – Northern Regional Center for Independent Living (NY)
12:10 Patrick Frozini – Center for Independent Living (South Florida)
16:50 June Kailes – Disability Policy Consultant (Los Angeles)
18:00 Katrina Parsons – Disability Link (Tucker, GA)
19:30 Karen Annette & Mindy – Independence Center (Northern Virginia) 2
1:00 Yao Appiadu – Harlem Independent Living Center (NY)
Link to all 22 interviews from NCIL 2025: https://www.disabilityrightspodcasts.org/ncil-conference
TRANSCRIPT
[Music]
Matt Shedd (Host):
Hi, welcome to Accessibility Now, a podcast from the Statewide Independent Living Council of Georgia in association with Disability Rights Podcast. My name is Matt Shedd, and in this episode, we’re going to bring you some interviews that we did live at the National Council on Independent Living Conference last month in Washington, D.C.
The NCIL Conference is a really special event where advocates come from all across the country and connect and share about the work that they’re doing. I was able to gather some live interviews from advocates all over the U.S. sharing about the work that they’re doing, their path to advocacy, and all kinds of good stuff.
So here are just some of those interviews. If you want to see all 22 that I did, you can check out the link that I’m going to put in the description. And I think you’re going to enjoy this.
Monique Stamps (North Carolina Statewide Independent Living Council / Women Embracing Abilities Now Charlotte):
I’m with the North Carolina Statewide Independent Living Council. I also have my own nonprofit called Women Embracing Abilities Now Charlotte, which is the sister chapter of WEAN Baltimore, founded by Janice Jackson.
Right now we’re focused on women’s health and accessibility—getting gyn care and breast health, and of course just basic healthcare in general. Primary care physicians, overall, we want better and equal access to healthcare and medical diagnostic equipment across the board.
I would say my personal path to advocacy started actually when giving birth, having my first child, when I had my daughter. Having to be lifted and carried and put on the exam table, my dignity being stripped away while getting prenatal care.
I didn’t know any other women with disabilities that had children post-injury, or really any women with disabilities that had babies at all. I had no access to them. So I did some research to find out—I knew they had to be out there somewhere. I found their stories were very similar to mine. I decided something needed to be done about it.
Harry Weissman (Executive Director, Disability Policy Consortium, Massachusetts):
My name is Harry Weissman. I’m the executive director of the Disability Policy Consortium, which is a statewide disability rights and advocacy organization in Massachusetts.
We do a lot of statewide policy advocacy, community organizing, and research. Our motto is About Us, By Us. It takes the idea of “nothing about us without us” in the disability movement and takes it a step further. When decisions are made that affect the disability community, not only should people with disabilities be at the table, but we should be the ones leading those efforts and making those decisions.
We carry that through in our advocacy, policy work, community-based participatory action research, and disability DEI training and consulting as well.
When I graduated college, I studied math and biology—very STEM, very different. I was doing health economics research at the time, and I wasn’t really getting as much out of it as I wanted. I realized I needed more people-facing work.
I was also coming into my own identity around disability and was doing community organizing outside of work. I found a fellowship that built my organizing skills and paired me with an organization where I could put that into practice. That’s how I found the DPC.
It came at the perfect time for me, when I was figuring out my own disabilities, struggling at work, struggling to stay focused, figuring out who I was and what I wanted to do. I needed to motivate myself and commit myself to work with ADHD. Suddenly I found myself in an organization that fully accepted me for who I am, was patient and flexible, and recognized me not for the quantity of my work but the quality.
That led me to stay and move from community organizer to advocacy director to executive director. Part of that to me is living that motto—about us, by us. Over three-quarters of our staff are people with disabilities. We’re leading that internally as a culture, and externally in the advocacy we do.
Cynthia Coffin (Seattle Disability Empowerment Center):
My name is Cynthia Coffin. I work in Seattle for the Disability Empowerment Center, a Center for Independent Living.
What keeps us busiest is community outreach—working with our consumers and helping people meet their goals, whether they want to go to school or find housing. We serve all of King County, with offices in Redmond, Auburn, and Seattle. We’re a staff of 10, and community outreach is what keeps us really busy.
For people who don’t have a disability, my message would be: it’s important to accept people with disabilities and to know that we’re here and we exist.
Because I’m blind, my biggest accessibility goal would be for blind people to have better jobs, to reduce the unemployment rate from 75% to 25%, and for people with all disabilities to be able to hold down meaningful jobs.
Colleen Roach (Chair, New Jersey Statewide Independent Living Council):
My name is Colleen Roach. I am the chair of the New Jersey Statewide Independent Living Council, and we’re here at NCIL 2025.
Our SILC in New Jersey is small—we have about eight members right now. We are working really hard to deal with the federal funding cuts that are coming our way.
I was born with my disability, so I feel like advocacy wasn’t something I chose. It’s something I started doing because I had to find a way to live, work, and play in my community. I was probably introduced to advocacy formally in college, in the late 90s.
I went down to a rally at our state capitol with the New Jersey Council on Developmental Disabilities. That was when I really caught the advocacy bug—seeing disabled peers walking in the streets, advocating for rights of the ADA, which had passed just eight years before, out in the heat of the sun.
Since then, I’ve been advocating around healthcare, public health, domestic violence, emergency preparedness, and more.
If I could change one thing in terms of disability justice, I would want people to be able to lead in their communities everywhere—with power, love, kindness, and collaboration—so we are all thriving, succeeding, healthy, and staying alive. I want to see the ten principles of disability justice spread into all communities.
I want to encourage people not immediately impacted by disability to come alongside us and advocate with us. The fight we’re in is big, and we need everybody’s voices, not just people with disabilities.
Christy Graves (New York Connects Coordinator, Northern Regional Center for Independent Living):
My name is Christy Graves, and I am currently the New York Connects coordinator at the Northern Regional Center for Independent Living in upstate New York.
In independent living, a lot of our time and energy goes toward housing. It’s such a widespread issue—people being unhoused—and in upstate New York, where it’s below 30 degrees for months, it’s critical to have shelters and places for people to stay.
I’m particularly impressed with the work Assembly Member Scott Gray has done. He’s gone to great lengths to understand housing and to see what’s been done in our neighboring counties. He went north to Ogdensburg and south to Syracuse, looked at both models, and secured funding for a housing complex.
It’s long-term temporary housing where DSS will be housed, a wraparound approach with services available right in the complex. It has great potential, and I’m excited to see how far it goes and what it does for our county.
Patrick (Youth Transition Coordinator, CIL of South Florida):
Hello, my name is Patrick. I work for the Center for Independent Living of South Florida in Miami, as the youth transition coordinator.
My path started back in 2006 when I was a student at Robert Morgan Educational Center studying business technology, and also a client of vocational rehabilitation. That year, one of the advocates at the CIL of South Florida recruited young adults with disabilities to join the Florida Youth Advocacy Committee, a sub-council of the Florida Independent Living Council.
I did that for nearly nine years until I aged out. It opened doors for me to work at the CIL, and from then on, I became deeply involved in independent living advocacy.
Our main focus right now is transition from high school to adulthood. Too many young adults with disabilities are underestimated—teachers, counselors, or specialists sometimes believe they can’t do certain things, and decide for them. I believe students should learn to advocate for themselves and prove they can achieve realistic goals.
I want to see more inclusion in the community. Inclusion is independence. The more people with disabilities are excluded, the more stagnant they become. The more you include and expose them to opportunities, the more they achieve.
We focus on adult topics: cooking, budgeting, safe sex education, voting, using public transportation, exploring their community. We take them to museums, movies, out in Miami, and show them how to live like adults, not like children. Parents often say their 18- or 19-year-old is still treated like a little kid in some programs—with Santa visits or Easter Bunnies. That’s not appropriate.
We want them to experience what every other teenager or college student would—real life, independence, and adulthood.
June Kaes (Disability Policy Consultant, Los Angeles):
My name is June Kaes. I’m a disability policy consultant based in Los Angeles.
A lot of my work is in disaster planning—ensuring people with disabilities are included in all aspects of disaster planning, response, recovery, and mitigation. It’s not just theory; it’s about the details of communication, transportation, independence, and safety.
Katrina Parsons (Disability Link, Metro Atlanta, Georgia):
My name is Katrina Parsons. I work for Disability Link, the Center for Independent Living in Tucker, Georgia, in metro Atlanta.
I’m the Independent Care Waiver Program supervisor and community health supervisor. I oversee the Medicaid waiver program that helps people with significant disabilities live in their homes rather than nursing homes.
I also supervise community health programs—weekly health classes, vaccine drives, outreach, and helping people without insurance get coverage through Georgia Access.
People with disabilities are the experts in their own lives. It’s important to emphasize your abilities rather than your disabilities, and to advocate for yourself to succeed.
Karen Anette (Independence Center, Northern Virginia):
Hi, my name is Karen Anette, and I’m from the Independence Center in Northern Virginia.
We teach individuals how to ride the bus and metro system, apply for Metro Access, and apply for different paratransit services like RideOn in Montgomery County or paratransit in Loudoun County.
We can also teach people to use Lyft, Uber, or other modes of transportation. If you need to find a way to get where you need to go, we help you learn all the options.
Mindy (Independence Center, Northern Virginia):
My name is Mindy. I’m also from the Independence Center in Northern Virginia.
We’ve been working with high school students with disabilities in D.C., Montgomery County, and Virginia, helping them travel to and from internships. We’ve assisted with bus travel, Metro, and even with bikes or scooters. Whatever mode of travel they want to use, we help make it accessible.
Yao Aedu (Executive Director, Harlem Independent Living Center; Chair, New York State SILC):
My name is Yao Aedu. I’m from the Harlem Independent Living Center, where I serve as executive director, and I’m also the chair of the New York State Independent Living Council.
This year the ADA turns 35, and so does our center. It’s a magical synchronization. We’ll celebrate with a renovated, fully accessible office reopening on August 13, alongside ADA’s 35th anniversary.
I’ve been in independent living for 10 years. I started as a health insurance enroller at Westchester Disabled on the Move while in grad school. My professor recommended it, and it became my passion. With my lived experience and family members with disabilities, this work has been deeply meaningful.
What we need is a seat at the table. From every angle of policymaking, we need advocates with lived experience at the table, offering perspectives early, so policies are informed from the beginning. If we’re not included, our voices are the last to be heard.
Matt Shedd (Host, Closing):
All right, that’s it for this episode. Thank you so much for joining us for Accessibility Now, a production of the Statewide Independent Living Council of Georgia in association with Disability Rights Podcast.
We really appreciate your support. And just a reminder: a Georgia that includes all of us is better for everyone.
[Music]