Author: FREED

Jennifer Gasner’s ‘Unexpected Life’ with Friedreich’s Ataxia

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.

Click here to listen to the broadcast version of this interview and/or read the transcript.

Greg Marshall’s Discovery of His ‘Leg’

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.

Click here to listen to the broadcast version of this interview and/or read the transcript.

The audio and transcript of an extended version of our interview with Greg Marshall is available here.

Read More “Disability Rap – July 3, 2023”

Life with a Traumatic Brain Injury

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.

Click here to listen to the show and/or read the transcript.

Ryan Prior on the Covid-19 ‘Long Haul’

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.

Click here to listen to the show and/or read the transcript.

Self-Acceptance and Inclusion: A National Disability Awareness Month Special

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.

Click here to listen to the show and/or read the transcript.

Inclusivity in the California Court System

On today’s show, we’re joined by Sacramento County Superior Court Judge Andi Mudryk, the first openly transgender person in California history to be appointed by a governor to a seat on the California bench. Disability Rap listeners may remember that Andi joined us on the show last year when she was Chief Deputy Director of the California Department of Rehabilitation. In that interview, we talked with Andi about her career in civil rights law, primarily focusing on advocacy for people with disabilities, as well as her personal experiences as someone with a physical disability. On this episode of Disability Rap, Judge Andi Mudryk speaks to us about the intersection of LGBTQIA+ Pride and Disability Pride and about how representation in the courts builds trust with communities and helps create a more just and equitable future.

Read More “Disability Rap – July 4, 2022”

Ford Foundation’s Rebecca Cokley on the Infrastructure Bill and the State of the Disability Rights Movement

As Congress and the White House actively negotiate the terms of the Build Back Better package, we spend today’s show with Rebecca Cokley, a Program Officer in the President’s Office at the Ford Foundation, where she develops the US disability rights program strategy for the Foundation. On the show, Rebecca provides analysis on how some of the proposed elements of the Build Back Better package would greatly improve the lives of people with disabilities in this country. She also tells us about her ground-breaking work at the Ford Foundation, supporting disability rights and justice initiatives throughout the United States.

Read More “Disability Rap – November 1, 2021”