Disability Rap

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.