Disability Rap: Recent Episodes
KVMR-FM
FREED’s monthly radio show on KVMR 89.5 FM Nevada City. Listen live on the first Monday of each month from 6:30 to 7 p.m.
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.
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.
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.
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.
We're joined by a roundtable of guests from across the country.
- Lilian Aluri, REV UP Voting Campaign Coordinator at the American Association of People with Disabilities.
- Michelle Bishop at the National Disability Rights Network.
- Molly Broadway, Training and Technical Support Specialist, Disability Rights Texas.
- Barbara Beckert, Director of External Advocacy, Disability Rights Wisconsin.
- Bill Crowley, Supervising Attorney, Disability Rights Wisconsin.
- Gabe Taylor, Voting Rights Senior Advocate, Disability Rights California.
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.
Vance Taylor is a San Francisco Bay Area native. He was diagnosed with muscular dystrophy as a child and uses a power wheelchair. He has worked in Washington, D.C. as an advisor for two different members of Congress, has directed security policy at the Association of Metropolitan Water Agencies, and has been a principal with Catalyst Partners, LLC. He is currently based in Rancho Cordova, California.
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.
Today, 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.
On today’s show, we focus on resources here in California for people who are unable to speak or whose speech may be difficult to understand. Through the Voice Options program, eligible Californians who are unable to speak or who have difficulty speaking can receive a free speech-generating device. They can also test out various speech-generating apps in order to know which app is best for them.
We’re joined by a roundtable of guests with deep knowledge in this area. Tim Burkhart, Elizabeth Wood and Megan Sampson are with us. They are with the Voice Options Program at the California Department of Rehabilitation. FREED is one of 24 Voice Options providers in the state.
And Annette Seabury is also with us. Annette is one of FREED’s Assistive Technology Specialist and coordinator of the Voice Options program at FREED. She is a Speech-Language Pathologist with a long history of working with assistive technology, particularly in schools.
Today, a follow-up on our January show looking at transportation challenges and opportunities for people with disabilities. We’re joined by Prashanth Venkataram. Prashanth is a postdoctoral researcher at the Institute of Transportation Studies at the University of California, Davis. In that role, he focuses on the state of current and future transportation systems for people with disabilities and what policies may lead to better outcomes for our community. He is currently co-facilitating a study looking at the needs, desires, and challenges that people with disabilities in California face with transportation and housing. Prashanth received a BS in physics from the Massachusetts Institute of Technology, and an MA and PhD in electrical engineering from Princeton University.
Calls to expand Long Term Services and Supports are growing here in California, in Washington, D.C., and across the country. For people who may be unfamiliar with the term, Long Term Services and Supports, or LTSS, is an umbrella term that encompasses all the supports people with disabilities and older adults need in order to live independently in the community of their choice.
Long Term Services and Supports include home health aides and personal care attendants, but LTSS also include services like medical and non-medical transportation, durable medical equipment, home modifications to make someone’s living space more accessible, and much more.
In President Biden’s Build Back Better agenda that has been stalled in the Senate since last fall, he proposed investing $400 billion in the nation’s LTSS system. Washington State enacted a public LTSS insurance program in 2019, and momentum is growing here in California for universal LTSS for all people who need it in the state, regardless of income or assets.
For more on the calls to expand Long Term Services and Supports, we’re joined by a roundtable of guests from the LTSS4All Grassroots Coalition, a cross-sector campaign for universal LTSS, representing people with disabilities, older adults, family caregivers and homecare professionals.
Monique Harris and Carrie Madden are with us. Both Monique and Carrie receive In-Home Supportive Services, or IHSS, which is California’s Medicaid-funded homecare program. Monique is a graphic artist based in Emeryville, and Carrie is a (Systems Change Advocate) at Communities Actively Living Independent & Free, or CALIF, the independent living center in downtown Los Angeles.
Allen Galleon is also with us. Allen is a homecare worker, family caregiver for his mother, and an organizer with the Pilipino Workers Center. And we’re joined by Kayla Shore, Southern California Research Manager & Organizer with Hand in Hand, The Domestic Employers Network. And we’re getting support today from Lindsay Imai Hong, the California Director of Hand in Hand, who will be revoicing for Monique.
As mask mandates and other Covid-19 precautions are being relaxed across the country, we look at a group of people who are being left behind as the country races to return to a pre-pandemic normal. There are 7 million people in the US with compromised immune systems, making up just under 3% of the population. For many of these people, the risk of severe illness, hospitalization, and death from Covid-19 is substantially higher than it is in the general population, and since their immune systems are compromised, they are at much higher risk of contracting the virus, even if they are vaccinated and boosted. On the show, we hear what immunocompromised people are experiencing at this stage of the pandemic and hear what they are calling for now.
We’re joined by Jillian Parramore, an educator, writer, speaker, and disability rights advocate based in southern California. She has a compromised immune system and other disabilities. Near the start of the pandemic, she was laid off from her job as a school district adviser because she couldn’t work in person. Jillian is a Board member of Disability Rights California.
We’re also joined by Ed Yong, staff writer at The Atlantic. He recently wrote a piece headlined, The Millions of People Stuck in Pandemic Limbo: What does society owe immunocompromised people? In the article, he documents the challenges immunocompromised people are facing right now and amplifies their calls for systemic change. Ed Yong won the Pulitzer Prize for Explanatory Reporting last year for his coverage of the Covid-19 pandemic.
On today's show, we focus on the intersection of disability and climate change and the disproportional impacts extreme weather can have on people with disabilities and older adults. We start local here in Nevada County and then zoom out for broader perspective and context.
On December 26, Nevada, Placer, and El Dorado Counties were hit with a massive snowstorm, the likes of which we have not seen in recent memory. The snow caused downed trees and widespread power outages that affected over two-thirds of Nevada County, over 60,000 households. While some power was restored within a matter of days, other residents went one and two weeks without power.
As we have discussed on this show before, Nevada County has, for better or worse, gotten used to Public Safety Power Shutoff events, when our power utility, PG&E, shuts off service to reduce the risk of wildfire. Usually, these events last between two and four days, not two weeks as was the case with this snowstorm.
People with disabilities and those who use life-sustaining medical devices were significantly impacted by this storm. We’re joined by Cathleen Parsons, a FREED consumer who had to evacuate during the storm. We’re also joined by Alex Ghenis, the founder of Accessible Climate Strategies. Alex is a climate resilience and disability rights researcher and advocate, dedicated to safeguarding the well-being of people with disabilities in a changing world.
On this episode of Disability Rap, we hear from YouTube personalities Dan and Viola Dwyer, creators of The Ginchiest, a series of videos highlighting their lives as people with disabilities who envision a society where differences are intriguing and accepted, not shameful and feared. Dan and Viola discuss the opportunities and challenges of transportation for people with disabilities. They share their experiences with both public and commercial transit, as well as wheelchair accessible personal vans.
Disability Rap listeners may remember Dan and Viola from our February 2021 show, when we did a Valentine’s Day special. Dan and Viola are a married couple living just outside of Philadelphia, Pennsylvania. In 2020, they 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.
In addition to their work on The Ginchiest, Viola is now a lead recruiter at La Jolla Logic. She was born with a genetic neuromuscular disease called Spinal Muscular Atrophy. She grew up using a wheelchair and continues to do so today. Dan was in a hit and run accident at the age of nine that left him in a coma for three months and resulted in a traumatic brain injury that he lives with today.
We spend today’s show with Amee Medeiros, the Executive Director of Neighborhood Center of the Arts, a nonprofit in Nevada City that supports people with intellectual and developmental disabilities to make and sell art. Amee tells us how Neighborhood Center has been supporting their artists remotely through the pandemic and shares her vision for the center going forward.
In non-pandemic times, Neighborhood Center of the Arts is a working studio for artists with intellectual and developmental disabilities. They offer classes and workshops in woodshop, ceramics, photography, weaving, mixed-media and visual arts, digital arts, and more. The mission of the program is to enable artists with disabilities to create and sell their art. 50% of the artwork sales goes to the artists themselves to supplement their income, and the other 50% goes back into running the center. In March of 2020, like so many other programs and nonprofits, Neighborhood Center of the Arts had to pivot and reorient in this time of the coronavirus pandemic, closing their physical doors for a time but continuing to support and create spaces for artists to make and sell their work. We’ve invited Amy back on Disability Rap to give us an update on the program and tell us where Neighborhood Center of the Arts is heading.
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.
Disability Rap listeners may remember that we had Rebecca on the show one year ago, right before the November 2020 Presidential Election. At that time, Rebecca was a senior fellow at the Center for American Progress Action Fund. Click here to listen to that interview.
Previously, Rebecca served as the executive director of the National Council on Disability, an independent agency charged with advising Congress and the White House on issues of national disability public policy. She also served in the Obama Administration for four years, including time at the Department of Education and the Department of Health and Human Services, as well as a successful stint at the White House where she oversaw diversity and inclusion efforts. Rebecca got her feet wet in advocacy while working at the Institute for Educational Leadership, where she built a number of tools and resources designed to empower and educate youth with disabilities and their adult allies. Rebecca is a California native, growing up in the Bay Area during the heart of the Independent Living Movement.
On Monday, September 27, California Governor Gavin Newsom signed SB639, which will phase out the ability for employers in California to pay people with developmental disabilities below the federal minimum wage. Under federal law, companies can apply for special waivers, called 14(c) certificates, which allow employers to pay people with developmental disabilities below the federal minimum wage. Starting on January 1, 2022, no employer in California will be able to obtain a new 14(c) certificate, and by 2025, the program will be phased out entirely.
We spend today's show honoring this important milestone in California history and celebrating National Disability Employment Awareness Month. We are joined by California State Senator María Elena Durazo, who introduced SB639, and by Jessica Grove, Assistant Deputy Director of the Vocational Rehabilitation Employment Division at the California Department of Rehabilitation (DOR). Jessica tells us how DOR supports people with disabilities in California to find and keep jobs. She also shares her experience as someone with a psychiatric disability in the workforce.
It’s September and we’re in the thick of fire season here in the Sierra Nevada foothills of northern California. We spend today's show talking about emergency preparedness, evacuation planning, and preparing for Public Safety Power Shutoff (PSPS) events, which are another common occurrence this time of year. We focus on the disability community here in the foothills, but this conversation is relevant to people and communities nationwide. We discuss how our community can stay prepared and stay safe before, during, and after emergencies.
We’re joined by three guests with first-hand knowledge of emergency planning. Brian Snyder should be a familiar voice to many listeners of Disability Rap as he was our Disability Community Advocate here at FREED and often co-hosted Disability Rap with Ana Acton. He is now FREED’s Emergency Preparedness Coordinator and runs our program supporting people with disabilities and older adults to prepare for evacuations and PSPS events.
Yinnon Hiller is the Emergency Preparedness Specialist at FREED and he supports Brian by providing equipment and resources to people with disabilities throughout FREED's catchment area and beyond. When he is not working for FREED, Yinnon works closely with the Left Coalition, providing mutual aid here in Nevada County.
And we're joined by Brian Terhorst, the current KVMR Board President and the former General Manager of KVMR. He is also the host and producer of Harmony Ridge, which airs on KVMR alternate Wednesdays from noon to 2 p.m.. Brian lives with a rare neuromuscular disease called Late Onset Pompe Disease that requires him to use a power wheelchair and non-invasive ventilator. Brian is a FREED consumer and is one of many community members with disabilities we support through PSPS events.
Today, we air highlights of the Our Community: An Aging & Disability Conference, which FREED hosted jointly with the Agency on Aging Area 4 on July 8, 2021. At this year’s conference, we focused on local implementation of California Governor Gavin Newsom’s Master Plan for Aging, which the administration released on January 6, 2021. We heard from local elected officials, representatives from the California Departments of Rehabilitation and Aging, and a representative from the California AARP. We also had breakout sessions by county for community members and leaders to start to plan local Master Plan for Aging implementation efforts.
On this show, we air an excerpt of a presentation on the Master Plan for Aging given by Amanda Lawrence of the California Department of Aging. We also hear from Grass Valley Vice Mayor Jan Arbuckle and from Ana Acton, longtime Executive Director of FREED and Disability Rap host, who is now the Deputy Director of the Independent Living and Community Access Division at the California Department of Rehabilitation. The entire conference was recorded, and those recordings, as well as the transcripts and slideshow presentations, are available here.
Today, we're joined by Andy Imparato, the Executive Director of Disability Rights California (DRC). DRC is the federally funded legal services agency that serves Californians with disabilities across the age spectrum and across disability. The organization offers a wide array of advocacy services, which Andy tells us about. Also in the interview, Andy looks back on lessons learned from the pandemic and expresses hopes for the future of people with disabilities in this country. He also tells us how his lived experience with bipolar disorder led him into a career in disability public policy advocacy.
Andy grew up in Los Angeles and graduated from Stanford Law School. He then had an impressive career in Washington D.C., serving as the Disability Policy Director for Chairman Tom Harkin of the US Senate Committee on Health, Education, Labor and Pensions and leading the American Association of People with Disabilities and the Association of University Centers on Disabilities. Earlier this year, President Biden appointed Andy to the Biden Harris Covid-19 Health Equity Task Force, which develops recommendations for the White House Covid-19 response.
Today, we bring you a very special show. Ana Acton, who started at FREED in 2004 and has been our Executive Director since 2012 and previously from 2007 to 2010, has been appointed by Governor Newsom to the post of Deputy Director of the Independent Living and Community Access Division at the California Department of Rehabilitation. Since 2007, Ana has hosted Disability Rap. On this episode of Disability Rap, Ana joins us as a guest to talk about her own life, her time at FREED, and her new role at the California Department of Rehabilitation.
Later in the show, we hear an update from the Disability Rights Education and Defense Fund about vaccination efforts for the disability community here in California.
Ana is a Nevada City native. She grew up on the San Juan Ridge. When she was fifteen, Ana was in a serious car accident that left her paralyzed from the waist down. Her journey to accept her disability eventually led her to FREED, where she started as our Systems Change Advocate in 2004.
Dan Okenfuss, the Public Policy Manager at the California Foundation for Independent Living Centers (CFILC), joins us this month to discuss his extensive career in California state politics, as well as his leadership in Little People of America (LPA). He also tells us about starting a family with the help of LPA’s adoption program.
In his post at CFILC, Dan advocates for the rights and increased supports and freedoms of people with disabilities in the state. He tracks bills moving through the California state legislature that would have a positive (or negative) impact on the lives of older adults and people with disabilities. Dan has an extensive background in public policy work, both here in California and in our nation’s capital. He has worked for at least six California Assemblymembers. Early in his career, Dan was a Legislative Aide to US Congressman David Mann of Ohio.
Dan has achondroplasia, which is the most common form of dwarfism. He is a lifelong member of Little People of America and has served as National Vice President of Public Affairs and a Chapter President for that organization.
His wife, Ericka, is also a little person. They have two remarkable children, and we say remarkable because, as we were doing research for this show, at least half of the articles we read were about their sons, Hai and Jude, and only mentioned Dan as their proud father. Hai and Jude have won numerous athletic awards. They represented the United States at the 7th World Dwarf Games in Guelph, Ontario, in 2017.
Here’s a video about the Okenfuss family, and here’s another video about Hai at the World Dwarf Games.
To mark International Transgender Day of Visibility (March 31), we spend today's show with Andi Mudryk, the Chief Deputy Director of the California Department of Rehabilitation. For over thirty years, Andi has been advocating for policies, programs, and legislation that benefit the lives of people with disabilities. She is a person with a disability who has Osteogenesis Imperfecta, commonly known as Brittle Bone Disorder. Andi has been a member of the LGBTQ community for 35 years and has recently found the courage to come out as a transgender woman. She talks to us about growing up in a multigenerational disabled family and about the process she went through to accept her sexual orientation and gender identity.
From 2006 to 2017, Andi Mudryk held several positions at Disability Rights California, including deputy director, director of litigation and managing attorney. She joined the staff at the California Department of Rehabilitation in 2018 as Chief Counsel and became the acting Chief Deputy Director of DOR last year. On March 25, she was unanimously confirmed by the California State Senate for the Chief Deputy Director position. She is also Co-Chair of SacLEGAL, Sacramento’s LGBT Bar Association.
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.