Disability Rap

We’re joined by Scott Martin, host of the Life’s a Road Trip podcast and author of the new book, Play From Your Heart, which takes us through his journey of accepting his disability after surviving life-threatening illnesses and having to have both of his hands and feet amputated.

Scott is an award-winning soccer coach, educator, and advocate within the disability community. With an advanced national coaching license and more than 30 years of experience coaching select youth, high school, and college athletes, he has earned four Coach of the Year titles and guided multiple teams to state championships. He was a soccer coach and teacher before his illness and amputations. His new book, Play From Your Heart, released yesterday, chronicles his journey to return to the field with his new disability.

As summer draws near, it means hot weather and long days, but it also means the season for Power soccer. Power soccer is a competitive team sport in which players maneuver power wheelchairs equipped with a specialized metal footguard. Two teams of four players each, use their wheelchairs and these footguards to move an oversized soccer ball around a basketball court. The rules of power soccer are similar to traditional soccer, and the team that scores the most number of points after two twenty-minute halves wins the game.

For more, we’re joined by two guests, Tyler Czapkay is a current player of power soccer, and Julie Fuller is a former power soccer coach. And our own co-host, Alexa Guerrero, played power soccer from 2009 to 2018. 

April is Brain Injury Awareness Month. According to the Brain Injury Association of America, 1 in 60 Americans are living with a permanent brain injury, and 2.8 million traumatic brain injuries, or TBIs, occur every year in the United States alone.

On today’s show, we are joined by Carl Magruder. In August, 2023, he was doing what he loved to do: ride his motorcycle. He got into an accident and, as he says, ”bonked my head.” That ”bonk” resulted in an extended hospital stay and a medically induced coma to give his brain time to heal. He was in the hospital for just over a month and then continued his healing process at home.

Carl Magruder is a Bay Area native. He earned a Master’s of Divinity degree from Pacific School of Religion and followed his calling to become a hospice chaplain. Prior to his accident in 2023, Carl was a home-based palliative care chaplain in Humboldt County and then served as a chaplain at the Zuckerberg San Francisco General Hospital and Trauma Center. Carl is an Advanced Practice Board Certified Chaplain with the Spiritual Care Association, and is endorsed by the Religious Society of Friends.

March is Multiple Sclerosis Awareness Month. Multiple sclerosis (MS) is a long-term disease that causes breakdown of the protective covering of nerves in the brain and spinal cord. This breakdown in the protective covering makes it harder for messages from the brain to travel to other parts of the body. MS affects each person who has it differently, and the severity of the symptoms varies widely. People with MS may have chronic fatigue, have trouble seeing, feel numbness, or have difficulty walking. There is no cure, but treatments can help reduce symptoms and slow the progression of the condition.

We’re joined today by two guests who have multiple sclerosis. Kelley Hartman is a retired occupational therapist, joining us from outside of Denver, Colorado. And from Steuben, Maine, Mary Pancoast is with us. Mary is an artist and retired Montessori teacher. Kelley and Mary share with us their experiences of life with multiple sclerosis and the physical, mental, and financial realities - from retirement to relocation and rearranging life priorities.

It’s February, and we have a tradition here on Disability Rap of doing a show focused on love and relationships at this time of year. This year, we’re joined today by Jackie Armstrong and Eric Loeffler, who have been together since 2024. They tell us how they met and fell in love, and they share how their disabilities have enriched their relationship.

Jackie is the president of the disability self-advocacy group Sacramento United People First and is a board member of Alta California Regional Center. She works at the Sacramento Municipal Utility District and Progressive Employment Concepts.

Eric moved to California from Oregon in 2024 to be with Jackie. He works at Katadyn Foods in Rocklin, California. In his spare time, he enjoys video games, music, and movies. Eric and Jackie also participate in a community choir together.

As we begin the new year, many high school seniors are receiving college acceptance letters. For many people with disabilities, especially significant physical disabilities, selecting a college and then attending that college comes with added complexities. They are often faced with having to advocate for themselves and their access needs in a whole new way, while also discovering what their needs are as disabled young adults. And all this while going to classes and having the college experience.

For more on all this, we’re joined by two guests. Jessica Roeckl-Navazio is a senior at Sacramento State University, studying sociology. Gus Albertsen attended Santa Barbara City College and California State University at Monterey Bay, majoring in Environmental Science. He graduated in 2023.

Each summer, California’s Youth Leadership Forum brings high school students with disabilities from across the state to Sacramento for a week of learning and fun. The students stay on campus at Sacramento State University, gaining a taste of college dorm life. Often, this is their first time away from their families and support systems. They learn about self-advocacy, independent living, and life after high school from mentors who themselves have disabilities. Our new co-host, Alexa Guerrero, has participated in YLF as a disabled mentor to the high school students for a number of years.

For more on the Youth Leadership Forum and disabled youth engagement more broadly, we’re joined by two guests. Matt Baker is the Project Manager for YLF at the California Committee on Employment of People with Disabilities. We’re also joined by Dani Anderson, Disability Access Manager for the Ventura County here in California.

It’s November, and we just had a special election here in California. We’re spending today’s show talking about the voting process for people with disabilities, how voting is made accessible, and the importance of voting as a way to engage in the political process.

We’re joined by three guests. From right here in Nevada County, Corey O’Hayre is with us. Corey has been the Assistant Registrar of Voters for Nevada County since August 2023 and served as Acting Registrar of Voters from June to October of this year. Donna Johnston is also with us. Donna is the Registrar of Voters for Sutter County. She has served in county government since 1990 and has been the Sutter County Registrar of Voters since 2008.

And from outside of Sacramento, Peter Mendoza is with us. Peter is currently a Community Program Specialist at the Sacramento Regional Office of the California State Council on Developmental Disabilities. He is also a member of the Sutter County Voter Accessibility Advisory Committee.

Today, we’re joined by the incoming Executive Director of the California Foundation for Independent Living Centers, Lisa Hayes. Lisa has had a long career in health and disability policy, leadership, and advocacy. For the past 7 years, she has served as the Executive Director of Rolling Start, Inc., an independent living center in southern California. She also serves as an appointed commissioner of the California State Independent Living Council and a board member of the National Council on Independent Living. Prior to her service in the nonprofit sector, Lisa worked for more than two decades in healthcare operations and contracting.

The California Foundation for Independent Living Centers, or CFILC, is a membership organization comprised of twenty-four independent living centers across the state. CFILC’s mission is to increase the capacity of independent living centers to support community living and independence for Californians with disabilities by providing advocacy, training, and resources. Lisa will officially assume her role as CFILC Executive Director on November 3.

This month, FREED is celebrating our 40th anniversary. We were founded in 1985 through the efforts of people with disabilities in Nevada County and the Nevada County Committee on the Disabled. This was a natural outgrowth of the Independent Living Movement, which grew out of Berkeley in the 1970s. FREED was one of California’s first rural independent living centers.

To celebrate our 40th anniversary, we’re hosting a fun-filled night of music and storytelling at the Gold Miners Inn in downtown Grass Valley on Saturday, September 27, from 5 to 9 p.m.. More about that event later in the show. But today, we’re joined by a very special roundtable of guests. Tony Sauer was the Executive Director of FREED from 1995 to 2001. He went on to be the Director of the California Department of Rehabilitation. 

Ana Acton is also with us. Ana started at FREED in 2004 as the Disability Community Advocate and then was Executive Director of FREED for 11 years. She then went on to lead the Independent Living division at the California Department of Rehabilitation. She’s now with the California Department of Aging. Our Co-host Carl Sigmond spoke with Tony and Ana on Monday.

As we head into fire season here in the Sierra Nevada Foothills of Northern California, we decided to check back in with Brian Snyder, FREED’s own Emergency Preparedness Coordinator. Brian supports people with disabilities to develop plans for what they will do during wildfires and other widespread emergencies. In addition, Brian runs FREED’s program that supports people who have life-sustaining medical devices - such as power wheelchairs or oxygen machines - during public safety power shut-off events and other natural disasters.

[Editor's Note: We aired this show on July 9, 2025 as a rebroadcast of our August 2020 show. One of our guests was Mark Fenicle, the Chair of FREED's Board of Directors. We are sad to share the news that Mark passed away on August 1, 2025. The following is a statement from FREED's Executive Director, Carly Pacheco: "Mark has been involved in Independent Living since his college days. He was a steadfast leader, passionate advocate, and dear friend to FREED. His dedication to our mission and our community was unwavering, and I will certainly miss his council and support both personally and for the organization. Mark knew the value of our work and reminded us regularly where we come from, both with critical direction and reminders, as well as hilarious stories from 'the good old days.'”]

In this episode of Disability Rap, we are looking back to 2020 and the 30th anniversary of the ADA. We assembled a panel of guests from across town and across the country who joined us remotely in studio for a live radio show. The discussion was so remarkable, we are bringing you the highlights to celebrate the 35th anniversary of the ADA.

Our guests were FREED founding member Geeta Dardick, FREED board chair Mark Fenicle, Eddie Ytuarte from Pushing Limits Radio Collective and Ami Hyten who is now the director of the Lois Curtis Center in Topeka Kansas.

Reflecting on what life was like in the days before the ADA, and the struggles that brought the law to fruition, our guests shared both personal experiences and the historical reflections that place this important legislation in context. Their hopes for the current struggles and future of disability justice are as relevant now as they were five years ago.

Last month, the US House of Representatives passed a budget reconciliation bill that proposes cutting over a trillion dollars in Federal health care spending. The program that would see the largest cuts is Medicaid, which provides health insurance to people with low income and people with disabilities. The Congressional Budget Office estimates that the bill, if passed into law, would cut over 800 billion dollars from Medicaid alone, resulting in nearly 11 million Americans losing Medicaid coverage. The bill also proposes cuts to the Affordable Care Act, SNAP, and to Medicare, which provides coverage to more than 61 million adults age 65 or older and almost 7 million people with disabilities under the age of 65.

Meanwhile, here in California, disability rights advocates have been flocking to Sacramento in recent weeks to push back on Governor Gavin Newsom’s proposed state budget, which includes massive cuts to the In-Home Supportive Services, or IHSS, program, as well as cuts to services for people with developmental disabilities. IHSS provides in-home care for people with disabilities and older adults in California.

For more on these proposed cuts at the state and Federal level, we are joined by two guests. Claudia Center is the Legal Director at the Disability Rights Education and Defense Fund, or DREDF, Prior to her time at DREDF, Claudia was Senior Staff Attorney in the Disability Rights Program at the ACLU.

We’re also joined by Ted Jackson, the Director of Public Policy and Community Engagement at the Marin Center for Independent Living. Ted is also the Statewide Director of the Disability Organizing Network here in California.

Today, we’re joined by Dr. Xenia Barnes. After a 20 year career in education, Xenia turned her attention to social justice work and trauma research, with a particular focus on how gun violence impacts individuals and communities. Then, in 2021, she was diagnosed with pulmonary fibrosis, a lung disease that makes it difficult for the body to absorb oxygen from the air. Her essay “The Invisible Battle: Navigating the Minefield of Workplace Accommodation” was included in the recently published book, “Triumph in the Trenches: Navigating Success for Black Professionals.”

Xenia Barnes is a researcher, a public speaker, and a life coach. She is the author of two books on navigating trauma: “Grieving to Heal: The Shadow Boarding Experience” and “The Recondition: A Guide to Loving Yourself Through the Trauma.” She has completed one PhD degree in Theology and is finishing up a second PhD degree in Advanced Human Behavior.

April is Autism Acceptance Month, and today we’re honoring that by spending the show talking about autism and specifically late-diagnosed autism. Autism is a broad umbrella for describing how some people think, feel, and act differently from what is considered typical or normal. We did a show in January on neurodivergence. Autism is a form of neurodivergence, and autism is a disability.

Autism manifests in each person differently, but common experiences of autistic people are finding socializing challenging and/or tiring, getting overwhelmed in loud or busy spaces, having intense interests that you keep coming back to, and preferring order and routine. Some people use repeated motions or actions to calm down their nervous system and/or express joy and happiness. Some autistic people hide - or mask - their emotions in order to fit in socially. This can sometimes lead to mental illness.

For more on all of this, we are joined by Kristen Hovet, the founder and creator of The Other Autism podcast. Kristen was diagnosed with autism in her 30s. Before that, she was labeled shy, gifted, intense, sensitive, reserved, but never autistic. This, unfortunately, is a common experience, especially for women and those assigned female at birth. We’ll explore why this is and what factors lead to this underdiagnosis later in the show.

Kristen Hovet has a Master’s Degree in Health Studies from Athabasca University in Alberta, Canada. She’s currently a Research Communications Specialist at the British Columbia Children's Hospital Research Institute in Vancouver. 

Today, we are joined by Emily Voorde, a former Biden Administration official and a top staffer in the Pete Buttigieg Presidential campaign. We talk with Emily about the current threats to Medicaid funding that are working their way through Congress. We also hear first-hand about the challenges people with mobility disabilities and assistive devices face when flying commercially, and we get Emily’s response to a recent lawsuit challenging rules set by the Biden Administration that aimed to make air travel safer and easier for people with disabilities. 

Emily Voorde is the Founder and CEO of INTO Strategies, a Disabled-led consultancy firm that assists companies, movements, and political campaigns to develop inclusive access solutions. In 2022, President Joe Biden appointed Emily to a seat on the National Council on Disability, a position she held until January of this year. Prior to joining the National Council on Disability, Emily was the Associate Director of the White House’s Office of Public Engagement under President Biden, where she served as a liaison between the Biden Administration and the disability community. During the 2020 Presidential run, she worked for Pete Buttigieg’s campaign, serving as Trip Director and “Body Woman” for Buttigieg’s husband, Chasten Buttigieg.

Emily Voorde grew up in South Bend, Indiana. She was born with osteogenesis imperfecta, a genetic condition that causes her bones to be brittle and break easily. She uses a wheelchair to get around. Emily first met Pete Buttigieg when he came to speak in her high school Government class during his run for Mayor of South Bend. Emily volunteered for his mayoral campaign and then interned in his office one summer. Buttigieg has credited Emily for his interest in and awareness of disability rights.

It’s February, and Valentine’s Day is around the corner. We have a tradition here on Disability Rap of doing a show focused on love and relationships at this time of year. We’re continuing that tradition on this show with a roundtable of guests to talk about disability and polyamory.

Why do a show about polyamory on Disability Rap? Well, there is actually more overlap than you might think, unless of course you are disabled and polyamorous! Last month, we did a show on neurodivergence, and there’s actually quite a bit of overlap between the neurodivergent and polyamorous communities. We’ll get into that in the show. And then in polyamory, there’s this acknowledgement that no one partner should be expected to meet all of someone’s romantic and/or sexual needs, and as people with disabilities, many of us are used to getting our needs met by multiple people. So the extension to the romantic arena isn’t that hard for some people with disabilities.

For more on all of this, we’re joined by a roundtable of guests. Alyssa Gonzalez is a biology Ph.D., public speaker, and writer. She writes about biology, history, sociology and her experiences as an autistic ex-Catholic Hispanic transgender immigrant to Canada on her blog at The Perfumed Void. She also writes speculative fiction that explores social isolation, autism, gender, and trauma. Alyssa’s first book, Nonmonogamy and Neurodiversity, was included in the More Than Two Essentials series, a collection of books by Canadian authors on specific topics related to polyamory and nonmonogamy.

Dr. Elisabeth “Eli” Sheff has studied sex and gender minority families for over 30 years, with a particular research interest in children of polyamorous families. She has written four books on polyamory, including The Polyamorists Next Door: Inside Multiple-Partner Relationships and Families and When Someone You Love is Polyamorous: Understanding Poly People and Relationships. Eli has appeared on CNN, NPR, and National Geographic, and has been interviewed by Vouge, BuzzFeed, and The New York Times.

Leanne Yau is a British award-winning polyamory educator, writer, speaker, certified sex and relationships educator, and trainee psychosexual therapist whose work is all about non-monogamy and sex positivity. She produces educational and entertaining multimedia content about creating healthy and sustainable non-monogamous relationships, drawing from her lived experiences as a polyamorous, bisexual, neurodivergent, and Asian agender femme who has been openly non-monogamous since 2016.

Katie Tastrom is a disability justice activist and writer who has worked as a lawyer, social worker, and sex worker. Her work has appeared in the anthologies Burn It Down: Feminist Manifestos for the Revolution, and Nourishing Resistance: Stories of Food, Protest, and Mutual Aid, as well as all over the internet, including Truthout, Rewire, and Rooted in Rights. She’s the author of A People’s Guide to Abolition and Disability Justice. Her 2018 article, Here Are 7 Reasons Why Polyamory Is More Difficult When You’re Disabled, appeared in Everyday Feminism.

Neurodivergence is the recognition that not all brains work the same way. It’s a broad spectrum of brain behavior that’s outside of what’s considered standard or “normal.” Today on the show, we explore neurodivergence with two guests who recognized their neurodivergence as adults. They share how this revelation has changed their understanding of their upbringing, their relationships, their work, and their daily lives.

Amanda Kennon is an American Sign Language Interpreter who lives in the Philadelphia suburbs. She, who has a neurodivergent child, was inspired to embark on her own journey of self-discovery about how neurodivergence has impacted her personally and in her professional life. She is currently working on research on neurodiversity in the interpreting profession along with her friend and colleague Dr. Laura Polhemus. Their ongoing research includes the experiences of neurodivergent interpreters and consumers. Amanda and her colleague Laura presented at the 2023 Registry of Interpreters for the Deaf Conference, April 2024 Registry for the Deaf Neurodiversity Webinar Series, and 2024 Conference for Interpreters Trainers.

John Leimgruber grew up in the mid-west in the 1980’s. He turned his developing interest in computers into a master’s degree in electrical and computer engineering. He now lives in Philadelphia where he enjoys exploring his interests including computer gaming, mysticisms, polyamory, and psychology. While not professionally diagnosed, John identifies with late diagnosed Autism.

On this episode, comedian Mean Dave shares how comedy led him to discover his addiction recovery is protected by the ADA, and how he’s bringing disability awareness to 12-step programs, helping people understand meetings as the “ramp” that gets recovering addicts up to the “curb” of a manageable life.

Mean Dave, who is a fixture in comedy clubs around the San Francisco Bay Area. He is in his tenth year of addiction recovery. In October, Mean Dave MC’d the Comedians with Disabilities Act when FREED brought that comedy troupe to Grass Valley for a fundraiser at The Center for the Arts. Mean Dave has also opened for Josh Blue, Jay Mohr, Judy Tenuta, and Big Jay Oakerson, and has toured many universities across the United States.

Today, we are joined by Jared Wikofsky. He is an independent artist and a comic creator. Jared has self-published and produced over 200 pages of comic work. Recently, Jared received a grant from Upstate Creative Corps. This led to his comic book, FALLING. The book delves into a life altering diagnosis and the long-lasting effects of that diagnosis. Jared also runs and edits a podcast entitled PLAYING WITH MADNESS PODCAST. It is a comedy/horror show airing on all the major podcast platforms.

October is National Disability Employment Month, and we’re celebrating with two guests who have cerebral palsy and found fulfilling careers (and even a second career) while overcoming barriers both before and after the Americans with Disabilities Act. We talk with David Clark and Whittier Mikkelsen about their experiences in the workforce, challenges and misconceptions they had to confront and overcome about their disabilities, and how their disabilities have helped to shape their lives and careers.

David Clark is a computer programmer and systems engineer based in the Boston area. Growing up in Connecticut in the ‘70s and ‘80s, David was quickly identified as a candidate for inclusive education at a time when this wasn’t the norm. He excelled in school and went on to The University of California, Berkeley, receiving a BA in Cognitive Science & Rhetoric. Through his career, he has built vast experience with online application development and server administration. David currently works as a Systems Designer in the Digital Research Applications team at Mass General Brigham.

Whittier Mikkelsen was an emergency room clinical psychologist. When chronic pain forced her to move away from this career and slow down, she took the opportunity to look deeply within herself and at the natural world. Through this, she reconnected with her passion for photography and artmaking. Whittier’s art has been shown at the Stirling Art Gallery in Dunedin, Florida, The Dunedin Fine Arts Center, The Art Lofts in St Petersburg, Florida, and at local cafes. You can see some of Whittier's photographs on her website.

Next month, FREED will be bringing The Comedians with Disabilities Act to downtown Grass Valley for a night of laughter, entertainment, and reflections on being disabled in our ablest society. The Comedians with Disabilities Act is a collection of comedians who have disabilities, both seen and unseen, who bring forth the humor they find in their lived experiences as disabled people. 

The Comedians with Disabilities Act will be performing on October 16 at 7 p.m. at The Center for the Arts in downtown Grass Valley as a fundraiser for FREED. Click here for more information and to purchase tickets to the show!

Today on Disability Rap, we speak with Nina G, a comedian who performs with The Comedians with Disabilities Act and one of the comedians who will be in the Grass Valley show. Nina is an author who has written three books, including Once Upon an Accommodation: A Book About Learning Disabilities, and she just recently debuted at #1 on two major streaming sites with her solo comedy album, Stutterer Interrupted. Nina has been an advocate for people with disabilities for over 20 years. She has been on many talk shows, radio broadcasts and podcasts. 

Last month, we marked the 34th anniversary of the Americans with Disabilities Act of 1990. The ADA granted equal rights and equal protection to people with disabilities in the United States. Today, we wanted to celebrate the anniversary of the ADA by looking back and looking forward at all the work that still needs to be done to make a truly inclusive world for all people, regardless of ability.

We’re joined by two guests. Beck Levin is a Systems Change Advocate at the Dayle McIntosh Center, which is the independent living center in Anaheim, California. Rebecca Donabed is also with us. Rebecca is a Community Organizer with Resources for Independence Central Valley, the independent living center in Visalia, California.

Our guest today, Philip Brubaker, notes that there’s unfortunately a real stigma around mental illness, and that needs to change. Philip is an internationally known and recognized filmmaker and videographic essayist. He also has bipolar disorder. In his most recent film, “How To Explain Your Mental Illness to Stanley Kubrick,” Philip tackles head on the often negative depictions of mental illness in Twentieth Century cinematography. In this deeply personal film, he juxtaposes his own journey with bipolar disorder with images from iconic films that show characters with mental illness as violent and suicidal. In the film, Philip challenges a manifestation of Stanley Kubrick to confront the way Kubrick portrayed mental illness and the effects those portrayals had on society.  

This is not Philip’s first film on the subject of mental illness. His 2009 documentary, “Brushes With Life: Art, Artists and Mental Illness,” won multiple awards and was aired on public television. His work has been featured in the Adelio Ferrero Film Festival, the Mental Filmness Festival in Chicago, and the FILMADRID Festival in Madrid, Spain. 

We’re joined today by Nicole Luongo, an advocate, author, and public speaker who has Cerebral Palsy. In 2019, Nicole started The Go Green for CP campaign to raise awareness for cerebral palsy in this country and around the world. Through her leadership, the campaign succeeded in getting at least one building or landmark in almost every state lit up in green on National Cerebral Palsy Awareness Day on March 25th and on World CP Day on October 6th. In 2021, she launched a campaign to have the White House light up in Green annually on March 25th. She also created the social media campaign What CP Looks Like.

Nicole is the author of Naked Desires, a book of poetry that chronicles her quest and challenges to find true love. She is a fitness enthusiast and has encouraged others to enjoy fitness and get moving, reshaping our notion of what fitness looks like.

Today, we are joined by two outdoor enthusiasts and avid hikers, Chris Layne and Daniel Wilson. Both Chris and Daniel are wheelchair users. They work with support teams and use specialized equipment to hike trails that are anything but wheelchair accessible. Chris has hiked up Mt. Elbert, the highest peak in the Colorado Rockies. It’s over 14,000 feet. Daniel has traversed rugged trails in the Lake District National Park in Cumbria, England, which is a UNESCO World Heritage site.

Chris acquired her disability after a fall while hiking in her home state of Colorado in 2016, when a spinal cord injury left her paralyzed from the chest down. She went on to win the Ms. Wheelchair Colorado title in 2020, and she is both an active athlete and advocate for accessibility and inclusion in the outdoors and everywhere else.

Daniel became paralyzed after complications from spinal surgery following a fall down an escalator. After recovering, he became active in the British charity organization Sportability, which supports paralyzed athletes’ participation in sports – from archery and quad biking, to tennis and flying light aircraft. Now an experienced adaptive hiker, he competed in the Race The Sun fundraiser in the Lake District National Park.

We recorded our interview with Chris and Daniel in March, as Daniel was preparing to hike the West Highland Way trail in Scotland. Just this week, Daniel successfully completed that trail, along with ten support volunteers from around the world. Daniel is the first person in a wheelchair known to have successfully completed this historic 96-mile trail. He made the trek as a fundraiser for BackUp, a UK organization supporting people with spinal cord injuries.

Hospitals don’t generally sue patients for trespassing, but that is what happened to Alexis Ratcliff. Alexis is 18 years old and has lived in a hospital in Winston-Salem, North Carolina since she was 13. Last year, the hospital sued Alexis for trespassing to try and force her to move out. Alexis wants to leave the hospital, too, just not where the hospital wanted her to go. Alexis wants to live in her own home with support from caregivers. She wants to live close to family and friends. The hospital, Atrium Health Wake Forest Baptist, wanted to transfer Alexis to a nursing home in another state. Alexis, who won a full academic scholarship to a nearby college and started classes there this fall, is saying no.

On today’s episode of Disability Rap, we speak with Alexis Ratcliff. Alexis is a quadriplegic who uses a wheelchair to get around and a ventilator to help her breathe. She acquired her disability as a result of a car accident when she was 18 months old. We are also joined by Lisa Nesbitt. Lisa is a Supervising Attorney at Disability Rights North Carolina, and she’s part of the team working on Alexis’s case.

In honor of National Cerebral Palsy Awareness Month this March, FREED Center for Independent Living partnered with the California Department of Rehabilitation to host a live recording of the Disability Rap radio show and podcast. The show featured a panel discussion focusing on the transition from youth to adulthood for people with cerebral palsy. Our panelists shared their stories of growing up with CP and the choices, obstacles, and opportunities they faced as they entered the workforce. The panel was moderated by Ana Acton, former Executive Director of FREED and Host of Disability Rap, now the Deputy Director of the Independent Living and Community Access Division at the California Department of Rehabilitation.

Click here to watch the recording of the show.

Special thanks to Ana Acton and the California Department of Rehabilitation for their partnership in hosting this event with FREED!

On this Valentine’s Day, we’re joined once again by Dan and Viola Dwyer, creators of the YouTube channel The Ginchiest, for a conversation about what makes their relationship work, how they’d like to see disability and relationships portrayed in popular culture, and what still needs to be done for greater media representation and disability marriage equality.

When Dan was nine, he acquired a traumatic brain injury caused by a hit and run accident. Dan attended Widener Memorial School in Philadelphia with other children with disabilities. He then studied at Edinboro University, where he studied Political Science and pursued a career in government.

Viola was born with Spinal Muscular Atrophy (SMA), a genetic neuromuscular disease. She also attended Widener Memorial School in Philadelphia. Viola attended Johns Hopkins University where she studied Entrepreneurship and International Relations and pursued a career in financial services. After working in different roles in the financial services industry, Viola decided to return to school and earned an MBA from Duke University.

In honor of National Cerebral Palsy Awareness Month this March, FREED Center for Independent Living is partnering with the California Department of Rehabilitation to host a live recording of the Disability Rap radio show and podcast. The show will feature a panel discussion focusing on the transition from youth to adulthood for people with cerebral palsy. Our panelists will share their stories of growing up with CP and the choices, obstacles, and opportunities they faced as they entered the workforce. The panel will be moderated by Ana Acton, former Executive Director of FREED and Host of Disability Rap, now the Deputy Director of the Independent Living and Community Access Division at the California Department of Rehabilitation.

For more information and to register, go to https://www.disabilityrap.org/disability-rap-2024-03-live.

Today, we’re joined by Dr. Michael Alexander, retired Chief of Rehabilitation Services at the A.I. duPont Hospital for Children in Wilmington, Delaware. Dr. Alexander has a long history at duPont, starting when he first set foot in the hospital as a patient at age 12 after contracting polio. As a teenager, he spent summers as an inpatient at the duPont Hospital, forming relationships and community with other children with disabilities and with the doctors and nurses working there. With encouragement from the lead physician at duPont, he decided to go to medical school at the University of Virginia and enter the emerging field of Physical Medicine and Rehabilitation. After practicing in Ohio and Pennsylvania, Dr. Alexander returned to duPont, now the Nemours Children’s Hospital, as the Chief of Rehabilitative Medicine in 1986. He retired in 2013.

Dr. Alexander is a leader in the field of pediatric rehabilitation. While at duPont Hospital, he pioneered family-centered care, bringing families of children with disabilities into the discussions and planning of their medical care and rehab. He facilitated the transition at duPont from mostly providing inpatient care to focusing on outpatients, providing children with disabilities and diseases the care and supports they need to live at home and participate fully in their community.

Today, we continue our coverage of the Covid-19 pandemic and the long-term impacts of SARS-CoV-2 on people’s health and everyday lives. We speak with two contributors to a new anthology by and for the Long Covid community.

We in the disability community know that the pandemic is far from behind us in the United States. Although the numbers have significantly decreased from 2020 and 2021, people are still getting sick from the virus and some still need to be hospitalized.

Although most people who contract SARS-CoV-2 fully recover, some people continue experiencing symptoms long after their initial Covid illness. A new anthology out last month explores the wide-ranging and often debilitating impacts long Covid can have on people’s lives. The Long COVID Reader is a collection of stories, essays, and poems from 45 long-haulers, as they call themselves.

The collection draws works from established writers and poets such as Pato Hebert, Emily Pinkerton, Morgan Stevens, and Nina Storey, as well as from people in other professions. The book reflects broad demographics, diverse skill sets, underrepresented voices, and those with little writing experience. We’re joined by two guests. Mary Ladd is the long-hauler publisher, founding editor, which published The Long COVID Reader. She has written for the San Francisco Chronicle, Playboy Health, and Wildfire Magazine. She’s based in the Bay Area.

Jessica B. Sokol is also with us. Jessica believes Covid-19 hit her in February 2020. She survived intubation on a ventilator. Her first book, For Better and Worse, was published in 2016. Her stories are featured in Dorothy Parker’s Ashes, Music Museum of New England, Forbes Library, and Valley Love Letters project in Northampton, Massachusetts. Her essay, Three Years and Counting, is included in The Long COVID Reader.

Click here to watch the book launch event from Green Apple Books.

We're joined today by Ms. Wheelchair California 2023 Candis Welch. Much more than a beauty queen, Candis is on a mission to bring equitable inclusion to all communities. In our interview, about her work as an advocate, her advice for disabled people pursing a college education, and her favorite disability representation on TV.

At 18 months, Candice was diagnosed with Spinal Muscular Atrophy. This is a genetic muscular disability that affects the central nervous system. She has her B.A. in Journalism with an emphasis in Public Relations and a minor in Psychology. She also has her master's in public administration from California State University, Northridge. She recently attended Cornell University where she received a certificate in Diversity, Equity, and Inclusion. She is an advocate for the disabled community and serves on multiple committees to bring awareness to the public on what the disability community experiences and needs.

Today, we turn to Alabama, where people with disabilities are suing three counties in that state for failure to provide an absentee voting option that is fully accessible for blind voters and other voters with disabilities. The lawsuit, filed earlier this month by four individuals and the National Federation of the Blind of Alabama, alleges that the counties are violating the rights of blind voters and other voters with disabilities by failing to provide them with accessible means to mark and return their absentee ballots.

We’re joined by two guests. Dr. Eric Peebles is one of the named plaintiffs in this Alabama lawsuit. He currently serves as executive director of Accessible Alabama, an organization that works to increase accessible housing options in communities for people with disabilities and those facing growing limitations as they age. He has a PhD in rehabilitation from Auburn University. Eric has spastic cerebral palsy because of an oxygen deprivation during birth. This trauma has severely limited his motor skills to the point of functional quadriplegia.

We’re also joined by Bill Van Der Pol, senior trial counsel at the Alabama Disabilities Advocacy Program. Bill is one of the attorneys representing the plaintiffs in the absentee voting lawsuit.

We are joined today by Michai Freeman, a Systems Change Advocate at the Center for Independent Living in Berkeley, California. When she was young, Michai developed a neuromuscular disease. Originally from New York, she spent her formative years in Brooklyn and had to be bussed to a community two hours away from her home to attend a school for the disabled. At that time, in the 1970s, children with disabilities were not admitted to the school closest to her home.

In 1989, Michai came to California to attend the University of California Berkeley. She studied abroad for a year in Egypt and then received her master’s in Holistic Studies with a specialization in nutrition from John F. Kennedy University. She ran for Berkeley City Council in 2022. While she did not win in that election, she continues to advocate for the disabled in her communities.

We are joined today by author Jennifer Gasner. At the tender age of 17, Jennifer was diagnosed with Friedreich’s Ataxia, a rare progressive neuromuscular disease. In her new book, My Unexpected Life: Finding Balance Beyond My Diagnosis, she delves into what it was like to start college with this new diagnosis and how she initially coped with her changing body. Turning to alcohol and getting involved in a toxic relationship were ways she could escape what she was feeling inside. Through a friendship with the hit singer songwriter Dave Matthews, Jennifer realized that even though her life had taken an unexpected turn and she was now a wheelchair user, her life was not over.

Today, we’re joined by Andrew Golibersuch, an artist, activist, dancer, and founder of Embodied Inclusion, a project designed to help organizations, communities, and institutions become more inclusive and welcoming to all. In our interview, Andrew shares his journey as a disabled dancer and how his experiences in dance led him to create his Embodied Inclusion workshops, where participants learn what each of us needs to feel comfortable inhabiting space with themselves and others. Andrew is a mental health counselor and art therapist based in western Massachusetts.

This is an extended version of our interview with Greg Marshall. 

Today, we’re joined by someone who has had cerebral palsy since he was born, but no one ever told him that he had CP or even that he had a disability. It was not until Greg Marshall was in his early thirties and applying for private health insurance for the first time that he learned, through a review of childhood medical records, that he actually had cerebral palsy. Up until that point, he just thought he had tight tendons, which was the line his parents used to explain why his feet and legs didn’t work like other kids his age.

Greg Marshall takes us on a journey of discovery in his new book, Leg: The Story of a Limb and the Boy Who Grew From It. It’s a memoir not only about learning he had CP, but about a mom who fights cancer, a dad who gets diagnosed with ALS, and a sister on the autism spectrum. And it’s a coming out story: coming out as gay at age 19, and then coming out as disabled in his early thirties. The book is poignant and also incredibly funny and tells this unique story of a kid who grew up in a small town in Utah where the only person who didn’t know he had a disability was himself.

In our interview, Greg Marshall tells us about growing up not knowing he had a disability and the impact this had on his relationships with family, partners, and most importantly, himself. Coming out as gay helped him to come out as disabled when he discovered his diagnosis of cerebral palsy in his thirties. Greg reflects on his family dynamics and caregiving, how disability made him a better lover, and how he shifted the self-critical voices of internalized ableism to a more gentle and accepting narrative embracing his many identities.

Today, we’re joined by someone who has had cerebral palsy since he was born, but no one ever told him that he had CP or even that he had a disability. It was not until Greg Marshall was in his early thirties and applying for private health insurance for the first time that he learned, through a review of childhood medical records, that he actually had cerebral palsy. Up until that point, he just thought he had tight tendons, which was the line his parents used to explain why his feet and legs didn’t work like other kids his age.

Greg Marshall takes us on a journey of discovery in his new book, Leg: The Story of a Limb and the Boy Who Grew From It. It’s a memoir not only about learning he had CP, but about a mom who fights cancer, a dad who gets diagnosed with ALS, and a sister on the autism spectrum. And it’s a coming out story: coming out as gay at age 19, and then coming out as disabled in his early thirties. The book is poignant and also incredibly funny and tells this unique story of a kid who grew up in a small town in Utah where the only person who didn’t know he had a disability was himself.

In our interview, Greg Marshall tells us about growing up not knowing he had a disability and the impact this had on his relationships with family, partners, and most importantly, himself. Coming out as gay helped him to come out as disabled when he discovered his diagnosis of cerebral palsy in his thirties. Greg reflects on his family dynamics and caregiving, how disability made him a better lover, and how he shifted the self-critical voices of internalized ableism to a more gentle and accepting narrative embracing his many identities.

Here at FREED we’ve recently restarted our Traumatic Brain Injury program, and while providing those services and supports in the community, we began hearing more and more stories about life with a TBI. According to the Brain Injury Association of America, 1 in 60 Americans are living with a permanent brain injury, and 2.8 million TBIs occur every year in the United States alone, and while there are common experiences among those living with TBI, we know – like all disabilities – their journeys are as unique as the people living them.    

Today we are joined by Barb Foy and Calvina McEndree, who both live with TBIs to share their experiences of having a TBI, how it shapes their present and their outlook on the future.  

As the death toll from Covid-19 quickly rose throughout the United States and around the world in early 2020, many health officials, politicians, and media personalities had one clear message about those who contracted Covid-19: For those who didn’t die from the infection, it would be a simple respiratory illness and patients would fully recover in a matter of weeks. But for millions of people around the world, they didn’t fully recover after contracting SARS-Co-V-2; their symptoms lasted for months or years, often with no signs of easing up. This was not well understood by the medical community, and so it was patients who banded together, often online, to support each other and raise awareness of a condition that they themselves termed, “Long Covid.”

This is the subject of a new book by our guest today, Ryan Prior. In The Long Haul: Solving the Puzzle of the Pandemic’s Long Haulers and How They Are Changing Healthcare Forever, Ryan documents the journey that people with Long Covid embarked on to advocate for recognition and understanding of this new condition in the medical community. He also shows how that advocacy was influenced heavily by those with another condition called myalgic encephalomyelitis, also known as chronic fatigue syndrome or ME/CFS. Writing from personal experience as someone who developed ME/CFS in high school, Ryan presents the similarities between ME and Long Covid, how they are both generally misunderstood by the medical profession, and how patients themselves were often on the front lines of understanding their own conditions and educating their doctors. He also connects these patient-led movements to the Disability Rights Movement of the 1970s and 80s and continuing today, and encourages the movements to unite around common goals.

Ryan Prior is currently a journalist-in-residence at The Century Foundation. He has been a health and science writer for CNN since 2015 and has also written for The Guardian, the Daily Beast, USA Today, STAT News, and Business Insider.

Vance talks with us about the intersection of personal preparedness and community resilience and about the future of disaster management.

We mark National Disability Awareness Month by chatting with our FREED colleagues about the journey of self-acceptance as people with disabilities and the pride they feel as part of the disability community. Our guests share what it means to have disability pride in a world where we are still fighting for awareness and inclusion, and they discuss the importance of people with disabilities supporting each other. We’re joined by Brian Snyder, FREED’s Emergency Preparedness Coordinator, Lindsay Wells, our Information and Referral Specialist, and Jennique Lee, the Program Manager for our Yuba City office. We also mark the passing of legendary disability rights activist Judy Heumann, who died on Saturday at the age of 75.