Disability Rap

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.