Disability Rap

On today's show, we look at the movement here in California to grant people with significant disabilities priority access to the Covid-19 vaccine. Studies show that people with certain physical or developmental disabilities are up to three times more likely to die from Covid-19 as compared to the general population. And yet, it wasn’t until February 12 that Governor Newsom announced that people with significant disabilities and people who have underlying health conditions will be eligible to receive the vaccine in California. And this eligibility isn’t even effective until March 15. The announcement was made only after massive outcry and a massive mobilization campaign by people with disabilities in the state.

We’re joined by two leaders of that campaign. Brandie Sendziak is the Supervising Attorney at Independent Living Resource Center San Francisco and was one of the key forces behind the #NoBodyIsDisposable movement, which she will tell us about. Brandie supervises ILRCSF’s legal services program, which offers representation for individuals with disabilities between the ages of 18 to 59 who reside in San Francisco. Brandie is also the Legal Director of the Fat Legal Advocacy, Rights, and Education Project.

Aaron Carruthers also joins us. Aaron is the executive director of the California State Council on Developmental Disabilities. SCDD was created by Congress to find and remove barriers that keep people with disabilities from living as fully integrated members of the community. Aaron has been working on policy in the state government for over two decades, in the assembly, the state senate, and for two administrations. SCDD has been working closely with Disability Rights California, Disability Voices United, the Disability Rights Education and Defense Fund, and the California Foundation of Independent Living Centers to mobilize the community around the vaccine access issue.

Today is the start of February, and Valentine’s Day is just around the corner. So, we decided to mark this time of year by inviting Dan and Viola Dwyer on the show. They are a married couple, and we invited them on Disability Rap to talk about their marriage and common misconceptions about people with disabilities in relationships.

At the age of nine, Dan was in a hit and run accident that left him in a coma for three months and resulted in a Traumatic Brain Injury that he lives with today. Throughout his elementary and high school years, he attended Widener Memorial School in Philadelphia, learning alongside children with physical and developmental disabilities. This experience taught him how to love others and empathize with them. He studied Political Science at Edinboro University and sought a career in government.

Viola was born with a genetic, neuromuscular disease called Spinal Muscular Atrophy (SMA). She grew up using a wheelchair and continues to do so to this day. She attended the same elementary school, Widener Memorial School, as Dan, her husband, but they missed each other by one year! She studied Entrepreneurship and International Relations at Johns Hopkins University and pursued a career in financial services. After working in various roles within the financial services industry, she went back to school to earn an MBA from Duke University.

Last year, Dan and Viola started a YouTube channel called The Ginchiest, where they talk about disability experiences and what these experiences teach people about being human. They are working to create a society where differences are intriguing and accepted, not shameful and feared. Keep an eye on their YouTube channel for an upcoming video with FREED’s very own Carl Sigmond and Brian Snyder. They will be discussing emergency preparedness for people with disabilities.

Here’s their video, 10 Seconds to Love, that we play a clip from on the show.

On today's show, we look at one disabled person’s experience being admitted into a hospital here in California this fall. His name is John Pixley. He was admitted into the hospital for four days this past October for something totally unrelated to the coronavirus. Despite prior assurances to the contrary, the hospital refused to allow his personal care attendants to be with him in the hospital. The reason given was Covid-19. John describes the experience as “unbearable, almost torturous,” and “inhumane.”

John is a columnist for the Claremont Courier and is also a prolific poet and blogger. In the past, he wrote plays and performed. These plays include Jury by Trial, which is based on a real life incident of being dismissed from jury duty on the basis of his speech impairment. He was much more active as a columnist, playwright, and performer before his spinal surgery in 2017, which left him far more disabled.

We’re also joined by June Isaacson Kailes. June is an independent consultant with decades of experience advising businesses, universities, government agencies, and nonprofit organizations on disability-related issues, with an eye towards equity and inclusion. More recently, her work has focused on disaster readiness and response in the disability community, including now during the pandemic.

John tells us his story of being hospitalized without his attendants, and we get response from June.

On today's show, we look back at the November election, and how easily, or not, people with disabilities were able to cast our ballots here in California. We also look forward and hear some of the voting advocacy work in the pipeline for the coming year.

We are joined by two guests. Paul Spencer is staff attorney with the voting practice group at Disability Rights California. Paul follows voting issues and access for people with disabilities across the state and has been at this work for over four years. Paul, it is great to have you back with us on Disability Rap.

And Russell Rawlings is also with us. Russell is the statewide community organizer at the California Foundation of Independent Living Centers, where he also runs the Disability Organizing network. Russell joined the team at CFILC back in April after serving as the systems change advocate at Resources For Independent Living in Sacramento for three years. Russell, it is great to have you on Disability Rap, as well.

And later in the show, we will also hear from our very own Carl Sigmond, who facilitates the Disability Organizing Network’s Voting Access and Advocacy Work Group.

On the eve of the election, Rebecca Cokley of the Center for American Progress Action Fund talks to us about the disabled community’s increasing political power in the United States. She also tells us about her own journey growing up in a multigenerational disabled family. We then hear both Presidential campaigns’ speeches to the Disability & Election Virtual Summit, where they present their disability platforms. We end the show with an announcement about Medicare’s Open Enrollment period, which continues through December 7.

More at: freed.org/2020/10/29/disability-rap-2020-11-02/

On today's show, we bring you extended excerpts of Nevada County's Education Workshop for Voters with Disabilities. This workshop took place via Zoom this past Friday, October 16, and was open to the public. The workshop was hosted by Jaime Melugin from the Nevada County Elections Department. She was joined by our co-host, Carl Sigmond, who is FREED's Disability Community Advocate, Mark Fenicle, Chair of the FREED Board of Directors, and Paul Spencer and Jason Connor from Disability Rights California.

Last week, we brought you part one of our conversation on the disproportional effects the coronavirus pandemic is having on people with disabilities and older adults. This week, we are bringing you part two. We spoke with Monet Clark, a healer and eco-feminist performance based video and photographic artist right here in Nevada City, Meg O’Connell, Founder and CEO of Global Disability Inclusion, Dr. Leonard Abbeduto, Director of the MIND Institute at UC Davis, and Denny Chan, a Senior Staff Attorney at Justice in Aging. We recorded this conversation on September 21, right as we reached the grim milestone of 200,000 deaths from Covid-19 here in the United States. You can go to our website, FREED.org/disabilityrap to listen to part one of our conversation. We started part two of the conversation by asking Denny to talk about the crisis standard of care guidelines here in California.

This is Part I of this conversation. Part II will be released next Monday.

As the number of coronavirus cases in the US tops 6.8 million and the number of deaths from Covid-19 tops 200,000, we spend today's show looking at the disproportionate effects the pandemic is having on older adults and people with disabilities. We've all heard the harrowing stories in the media about some of the early coronavirus hotspots being nursing homes and other long-term care facilities, but we wanted to go deeper. According to the CDC, 94% of people who died from Covid-19 in the US had at least one other health condition or contributing cause of death. What does that mean for the disability community and for older adults?

We are also seeing other ways in which the pandemic is impacting the lives of people with disabilities and older adults. Many are experiencing a disruption in community-based long term services and supports, the services which enable so many of us to live in our communities and get the help we need to do so. We're seeing how the transition to online learning is working really well for some students with disabilities but is leaving others behind. With unemployment numbers soaring, we're seeing people with disabilities being laid off or furloughed at much higher rates than people without disabilities, and once they are laid off, they are having a much harder time finding new work, as compared to their nondisabled peers. And perhaps most strikingly, as the CDC data suggest, we are seeing that the toll that the coronavirus takes on the body can be much more severe for people with underlying health conditions.

The list goes on, and we will get into all of this in a moment, but first we want to introduce you to our guests. We're joined by a roundtable of people from here in Nevada County and across the country who are looking at this issue from multiple perspectives.

We have a very special show for you today. Last month was the 30th anniversary of the signing of the Americans with Disabilities Act. The ADA was a landmark civil rights law that affirmed the inherent dignity of every person, regardless of disability. And today, we’re spending the hour celebrating the ADA, its effects on people with disabilities and all Americans, and its impact right here in Nevada County.

Geeta Dardick is with us. She and her husband Sam were longtime residents and farmers here in Nevada County, and at the encouragement of Ed Roberts, they helped to start FREED in the 1980s. The two of them traveled to Washington D.C. to represent FREED and Nevada County at the signing of the ADA by President George H. W. Bush on July 26, 1990. We're honored to have you with us, Geeta, and we look forward to you sharing some of your stories from that day and from the early days of FREED.

Mark Fenicle is also with us. Mark attended U.C. Berkeley in the early '70s, graduating with a degree in Invertebrate Zoology. After a brief stint at the University of California Marine Laboratory at Bodega Bay, he worked for the VA at various hospitals and clinics for 31 years. Mark moved to Grass Valley in 2006, and in 2015, he joined the FREED Board, where he now serves as Chair.

Joining us from Oakland is Eddie Ytuarte, a producer with the Pushing Limits radio collective at KPFA. Eddie served on the Oakland Mayor's Commission on Persons with Disabilities and served for six years on the Board of what is now Disability Rights California. Back then it was known as Protection and Advocacy, Inc. He’s been producing disability-related content for Pushing Limits since 2003 and has also contributed content to El Tecolote in Oakland.

And from Topeka, Kansas, Ami Hyten is with us. Ami is the Executive Director at the Topeka Independent Living Resource Center. She has been involved in grassroots disability organizing for almost a quarter century as a member of ADAPT and with the Disability Rights Action Coalition in Housing. I attended several webinars Ami gave recently on disability history and the philosophy of the Independent Living Movement, and I learned a ton. We wanted to bring her on the show to share that history and her perspective with our listeners here in Nevada County.