Disability Rap

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.