Category: Disability Rap

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.

The Future of Robotics in Disability Aides

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.

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

Social Security Increases and Medi-Cal Expansion

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.

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

Read More “Disability Rap – January 2, 2023”

Celebrating the 50th Anniversary of the First Center for Independent Living

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.

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

Samuel Habib’s ‘My Disability Roadmap’

Transitioning from high school to adulthood is a big deal – even more so for young people with disabilities. Not content with merely trailblazing an accessible future, Samuel Habib decided to create a documentary film about his journey. On today’s show, we hear from Samuel and his co-director, Dan Habib, about their film, My Disability Roadmap, and their hopes for the future.

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

Voting Access Across the Country

With the midterm elections five weeks away, we spend today’s show looking at voting access for people with disabilities across the country. People with disabilities make up one fifth of the US population, or roughly 66 million people, and yet only 17.7 million people with disabilities voted in this country in 2020. While that was a significant increase over 2016, we wanted to find out what some of the main barriers are that people with disabilities face when trying to exercise our right to vote. We’ll look right here in California and also look at Texas and Wisconsin, where recent laws and court orders have restricted access to the ballot box for voters with disabilities.

Read More “Disability Rap – October 3, 2022”

CalOES’s Vance Taylor on Emergency Preparedness

As we enter fire season here in the Sierra Nevada foothills, we spend today’s show with L. Vance Taylor, who leads the Office of Access and Functional Needs in the California Governor’s Office of Emergency Services. We invited Vance on the show to talk about how the increasing risk of wildfire and other natural disasters here in California is impacting people with disabilities and others with access and functional needs. We’ll also hear what CalOES is doing to support our community before, during, and after emergencies.

Read More “Disability Rap – September 5, 2022”

Celebrating Disability Pride

July was Disability Pride Month, and to celebrate, we bring you a conversation between two women executives with significant disabilities at the California Department of Rehabilitation (DOR). Ana Acton, the former Executive Director of FREED and former Disability Rap host, is now DOR’s Deputy Director of Independent Living and Community Access Division. Last month, she sat down with Kim Rutledge, the Deputy Director of Legislation and Communications at DOR, for a wide-ranging conversation about disability, disability pride, and self-acceptance. This month on Disability Rap, we air an extended version of their conversation.

Read More “Disability Rap – August 1, 2022”

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”