Disability Rap

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. 

On today’s show, we’re joined once again by Dan and Viola Dwyer, creators of the YouTube channel, The Ginchiest. We invited Dan and Viola back to discuss personal care and how they see robotics playing a role. 

In October, the Social Security Administration announced that it would institute an 8.7 percent increase in all Social Security cash benefits and Supplemental Security Income.  This cost-of-living adjustment, or COLA, which takes effect this month, is meant to counter the soaring cost of everyday expenses due to inflation. For people on fixed income, as many people who receive Social Security or SSI are, this increase will help them continue to put food on their table and pay their bills. This is Social Security’s largest COLA increase since 1981 and it will impact over 72 million Americans.  This got us thinking about other government benefit programs here in California that are either increasing benefits and services for people with disabilities and older adults or expanding eligibility criteria to enable more people to qualify.  One example is Medi-Cal, California’s Medicaid program. In July 2022, the state increased the asset limit for Medi-Cal from $2,000 to $130,000 for individuals and from $3,000 to $195,000 for a couple, and in 2024, these Medi-Cal asset limits will be eliminated entirely. We also saw the state expand Medi-Cal eligibility to some undocumented immigrants here in California last year.  To talk more about these changes and the impacts they will have on people with disabilities and older adults, we’re joined by a roundtable of guests. Ted Mumford is a staff attorney with Legal Services of Northern California, an organization that provides free legal services to qualifying low-income individuals with the goal of empowering them to identify and defeat the causes and effects of poverty. And we’re also joined by Denise Miller and Samuel Jain from Disability Rights California, the protection and advocacy organization for people with disabilities in the state.  

On today’s show, we celebrate the 50th anniversary of the first Independent Living Center in the world, founded in 1972 by UC Berkeley students. Joe Xavier, Director of the California Department of Rehabilitation, tells us how California is leading the way in creating a more accessible, equitable workforce, and why that matters to people with disabilities across the state. Former US Congressmember Tony Coelho talks about how growing up with a disability led him to sponsor the ADA. And we hear voices from the Independent Living Street Festival in Berkeley on October 22.