For more, we’re joined by two guests, Tyler Czapkay is a current player of power soccer, and Julie Fuller is a former power soccer coach. And our own co-host, Alexa Guerrero, played power soccer from 2009 to 2018. 

On today’s show, we are joined by Carl Magruder. In August, 2023, he was doing what he loved to do: ride his motorcycle. He got into an accident and, as he says, ”bonked my head.” That ”bonk” resulted in an extended hospital stay and a medically induced coma to give his brain time to heal. He was in the hospital for just over a month and then continued his healing process at home.

Carl Magruder is a Bay Area native. He earned a Master’s of Divinity degree from Pacific School of Religion and followed his calling to become a hospice chaplain. Prior to his accident in 2023, Carl was a home-based palliative care chaplain in Humboldt County and then served as a chaplain at the Zuckerberg San Francisco General Hospital and Trauma Center. Carl is an Advanced Practice Board Certified Chaplain with the Spiritual Care Association, and is endorsed by the Religious Society of Friends.

We’re joined today by two guests who have multiple sclerosis. Kelley Hartman is a retired occupational therapist, joining us from outside of Denver, Colorado. And from Steuben, Maine, Mary Pancoast is with us. Mary is an artist and retired Montessori teacher. Kelley and Mary share with us their experiences of life with multiple sclerosis and the physical, mental, and financial realities - from retirement to relocation and rearranging life priorities.

Jackie is the president of the disability self-advocacy group Sacramento United People First and is a board member of Alta California Regional Center. She works at the Sacramento Municipal Utility District and Progressive Employment Concepts.

Eric moved to California from Oregon in 2024 to be with Jackie. He works at Katadyn Foods in Rocklin, California. In his spare time, he enjoys video games, music, and movies. Eric and Jackie also participate in a community choir together.

For more on all this, we’re joined by two guests. Jessica Roeckl-Navazio is a senior at Sacramento State University, studying sociology. Gus Albertsen attended Santa Barbara City College and California State University at Monterey Bay, majoring in Environmental Science. He graduated in 2023.

For more on the Youth Leadership Forum and disabled youth engagement more broadly, we’re joined by two guests. Matt Baker is the Project Manager for YLF at the California Committee on Employment of People with Disabilities. We’re also joined by Dani Anderson, Disability Access Manager for the Ventura County here in California.

We’re joined by three guests. From right here in Nevada County, Corey O’Hayre is with us. Corey has been the Assistant Registrar of Voters for Nevada County since August 2023 and served as Acting Registrar of Voters from June to October of this year. Donna Johnston is also with us. Donna is the Registrar of Voters for Sutter County. She has served in county government since 1990 and has been the Sutter County Registrar of Voters since 2008.

And from outside of Sacramento, Peter Mendoza is with us. Peter is currently a Community Program Specialist at the Sacramento Regional Office of the California State Council on Developmental Disabilities. He is also a member of the Sutter County Voter Accessibility Advisory Committee.

The California Foundation for Independent Living Centers, or CFILC, is a membership organization comprised of twenty-four independent living centers across the state. CFILC’s mission is to increase the capacity of independent living centers to support community living and independence for Californians with disabilities by providing advocacy, training, and resources. Lisa will officially assume her role as CFILC Executive Director on November 3.

To celebrate our 40th anniversary, we’re hosting a fun-filled night of music and storytelling at the Gold Miners Inn in downtown Grass Valley on Saturday, September 27, from 5 to 9 p.m.. More about that event later in the show. But today, we’re joined by a very special roundtable of guests. Tony Sauer was the Executive Director of FREED from 1995 to 2001. He went on to be the Director of the California Department of Rehabilitation. 

Ana Acton is also with us. Ana started at FREED in 2004 as the Disability Community Advocate and then was Executive Director of FREED for 11 years. She then went on to lead the Independent Living division at the California Department of Rehabilitation. She’s now with the California Department of Aging. Our Co-host Carl Sigmond spoke with Tony and Ana on Monday.

In this episode of Disability Rap, we are looking back to 2020 and the 30th anniversary of the ADA. We assembled a panel of guests from across town and across the country who joined us remotely in studio for a live radio show. The discussion was so remarkable, we are bringing you the highlights to celebrate the 35th anniversary of the ADA.

Our guests were FREED founding member Geeta Dardick, FREED board chair Mark Fenicle, Eddie Ytuarte from Pushing Limits Radio Collective and Ami Hyten who is now the director of the Lois Curtis Center in Topeka Kansas.

Reflecting on what life was like in the days before the ADA, and the struggles that brought the law to fruition, our guests shared both personal experiences and the historical reflections that place this important legislation in context. Their hopes for the current struggles and future of disability justice are as relevant now as they were five years ago.

Meanwhile, here in California, disability rights advocates have been flocking to Sacramento in recent weeks to push back on Governor Gavin Newsom’s proposed state budget, which includes massive cuts to the In-Home Supportive Services, or IHSS, program, as well as cuts to services for people with developmental disabilities. IHSS provides in-home care for people with disabilities and older adults in California.

For more on these proposed cuts at the state and Federal level, we are joined by two guests. Claudia Center is the Legal Director at the Disability Rights Education and Defense Fund, or DREDF, Prior to her time at DREDF, Claudia was Senior Staff Attorney in the Disability Rights Program at the ACLU.

We’re also joined by Ted Jackson, the Director of Public Policy and Community Engagement at the Marin Center for Independent Living. Ted is also the Statewide Director of the Disability Organizing Network here in California.

Xenia Barnes is a researcher, a public speaker, and a life coach. She is the author of two books on navigating trauma: “Grieving to Heal: The Shadow Boarding Experience” and “The Recondition: A Guide to Loving Yourself Through the Trauma.” She has completed one PhD degree in Theology and is finishing up a second PhD degree in Advanced Human Behavior.

Autism manifests in each person differently, but common experiences of autistic people are finding socializing challenging and/or tiring, getting overwhelmed in loud or busy spaces, having intense interests that you keep coming back to, and preferring order and routine. Some people use repeated motions or actions to calm down their nervous system and/or express joy and happiness. Some autistic people hide - or mask - their emotions in order to fit in socially. This can sometimes lead to mental illness.

For more on all of this, we are joined by Kristen Hovet, the founder and creator of The Other Autism podcast. Kristen was diagnosed with autism in her 30s. Before that, she was labeled shy, gifted, intense, sensitive, reserved, but never autistic. This, unfortunately, is a common experience, especially for women and those assigned female at birth. We’ll explore why this is and what factors lead to this underdiagnosis later in the show.

Kristen Hovet has a Master’s Degree in Health Studies from Athabasca University in Alberta, Canada. She’s currently a Research Communications Specialist at the British Columbia Children's Hospital Research Institute in Vancouver. 

Emily Voorde is the Founder and CEO of INTO Strategies, a Disabled-led consultancy firm that assists companies, movements, and political campaigns to develop inclusive access solutions. In 2022, President Joe Biden appointed Emily to a seat on the National Council on Disability, a position she held until January of this year. Prior to joining the National Council on Disability, Emily was the Associate Director of the White House’s Office of Public Engagement under President Biden, where she served as a liaison between the Biden Administration and the disability community. During the 2020 Presidential run, she worked for Pete Buttigieg’s campaign, serving as Trip Director and “Body Woman” for Buttigieg’s husband, Chasten Buttigieg.

Emily Voorde grew up in South Bend, Indiana. She was born with osteogenesis imperfecta, a genetic condition that causes her bones to be brittle and break easily. She uses a wheelchair to get around. Emily first met Pete Buttigieg when he came to speak in her high school Government class during his run for Mayor of South Bend. Emily volunteered for his mayoral campaign and then interned in his office one summer. Buttigieg has credited Emily for his interest in and awareness of disability rights.

Why do a show about polyamory on Disability Rap? Well, there is actually more overlap than you might think, unless of course you are disabled and polyamorous! Last month, we did a show on neurodivergence, and there’s actually quite a bit of overlap between the neurodivergent and polyamorous communities. We’ll get into that in the show. And then in polyamory, there’s this acknowledgement that no one partner should be expected to meet all of someone’s romantic and/or sexual needs, and as people with disabilities, many of us are used to getting our needs met by multiple people. So the extension to the romantic arena isn’t that hard for some people with disabilities.

For more on all of this, we’re joined by a roundtable of guests. Alyssa Gonzalez is a biology Ph.D., public speaker, and writer. She writes about biology, history, sociology and her experiences as an autistic ex-Catholic Hispanic transgender immigrant to Canada on her blog at The Perfumed Void. She also writes speculative fiction that explores social isolation, autism, gender, and trauma. Alyssa’s first book, Nonmonogamy and Neurodiversity, was included in the More Than Two Essentials series, a collection of books by Canadian authors on specific topics related to polyamory and nonmonogamy.

Dr. Elisabeth “Eli” Sheff has studied sex and gender minority families for over 30 years, with a particular research interest in children of polyamorous families. She has written four books on polyamory, including The Polyamorists Next Door: Inside Multiple-Partner Relationships and Families and When Someone You Love is Polyamorous: Understanding Poly People and Relationships. Eli has appeared on CNN, NPR, and National Geographic, and has been interviewed by Vouge, BuzzFeed, and The New York Times.

Leanne Yau is a British award-winning polyamory educator, writer, speaker, certified sex and relationships educator, and trainee psychosexual therapist whose work is all about non-monogamy and sex positivity. She produces educational and entertaining multimedia content about creating healthy and sustainable non-monogamous relationships, drawing from her lived experiences as a polyamorous, bisexual, neurodivergent, and Asian agender femme who has been openly non-monogamous since 2016.

Katie Tastrom is a disability justice activist and writer who has worked as a lawyer, social worker, and sex worker. Her work has appeared in the anthologies Burn It Down: Feminist Manifestos for the Revolution, and Nourishing Resistance: Stories of Food, Protest, and Mutual Aid, as well as all over the internet, including Truthout, Rewire, and Rooted in Rights. She’s the author of A People’s Guide to Abolition and Disability Justice. Her 2018 article, Here Are 7 Reasons Why Polyamory Is More Difficult When You’re Disabled, appeared in Everyday Feminism.

Amanda Kennon is an American Sign Language Interpreter who lives in the Philadelphia suburbs. She, who has a neurodivergent child, was inspired to embark on her own journey of self-discovery about how neurodivergence has impacted her personally and in her professional life. She is currently working on research on neurodiversity in the interpreting profession along with her friend and colleague Dr. Laura Polhemus. Their ongoing research includes the experiences of neurodivergent interpreters and consumers. Amanda and her colleague Laura presented at the 2023 Registry of Interpreters for the Deaf Conference, April 2024 Registry for the Deaf Neurodiversity Webinar Series, and 2024 Conference for Interpreters Trainers.

John Leimgruber grew up in the mid-west in the 1980’s. He turned his developing interest in computers into a master’s degree in electrical and computer engineering. He now lives in Philadelphia where he enjoys exploring his interests including computer gaming, mysticisms, polyamory, and psychology. While not professionally diagnosed, John identifies with late diagnosed Autism.

Mean Dave, who is a fixture in comedy clubs around the San Francisco Bay Area. He is in his tenth year of addiction recovery. In October, Mean Dave MC’d the Comedians with Disabilities Act when FREED brought that comedy troupe to Grass Valley for a fundraiser at The Center for the Arts. Mean Dave has also opened for Josh Blue, Jay Mohr, Judy Tenuta, and Big Jay Oakerson, and has toured many universities across the United States.

David Clark is a computer programmer and systems engineer based in the Boston area. Growing up in Connecticut in the ‘70s and ‘80s, David was quickly identified as a candidate for inclusive education at a time when this wasn’t the norm. He excelled in school and went on to The University of California, Berkeley, receiving a BA in Cognitive Science & Rhetoric. Through his career, he has built vast experience with online application development and server administration. David currently works as a Systems Designer in the Digital Research Applications team at Mass General Brigham.

Whittier Mikkelsen was an emergency room clinical psychologist. When chronic pain forced her to move away from this career and slow down, she took the opportunity to look deeply within herself and at the natural world. Through this, she reconnected with her passion for photography and artmaking. Whittier’s art has been shown at the Stirling Art Gallery in Dunedin, Florida, The Dunedin Fine Arts Center, The Art Lofts in St Petersburg, Florida, and at local cafes. You can see some of Whittier's photographs on her website.

The Comedians with Disabilities Act will be performing on October 16 at 7 p.m. at The Center for the Arts in downtown Grass Valley as a fundraiser for FREED. Click here for more information and to purchase tickets to the show!

Today on Disability Rap, we speak with Nina G, a comedian who performs with The Comedians with Disabilities Act and one of the comedians who will be in the Grass Valley show. Nina is an author who has written three books, including Once Upon an Accommodation: A Book About Learning Disabilities, and she just recently debuted at #1 on two major streaming sites with her solo comedy album, Stutterer Interrupted. Nina has been an advocate for people with disabilities for over 20 years. She has been on many talk shows, radio broadcasts and podcasts. 

We’re joined by two guests. Beck Levin is a Systems Change Advocate at the Dayle McIntosh Center, which is the independent living center in Anaheim, California. Rebecca Donabed is also with us. Rebecca is a Community Organizer with Resources for Independence Central Valley, the independent living center in Visalia, California.

This is not Philip’s first film on the subject of mental illness. His 2009 documentary, “Brushes With Life: Art, Artists and Mental Illness,” won multiple awards and was aired on public television. His work has been featured in the Adelio Ferrero Film Festival, the Mental Filmness Festival in Chicago, and the FILMADRID Festival in Madrid, Spain. 

Nicole is the author of Naked Desires, a book of poetry that chronicles her quest and challenges to find true love. She is a fitness enthusiast and has encouraged others to enjoy fitness and get moving, reshaping our notion of what fitness looks like.

Chris acquired her disability after a fall while hiking in her home state of Colorado in 2016, when a spinal cord injury left her paralyzed from the chest down. She went on to win the Ms. Wheelchair Colorado title in 2020, and she is both an active athlete and advocate for accessibility and inclusion in the outdoors and everywhere else.

Daniel became paralyzed after complications from spinal surgery following a fall down an escalator. After recovering, he became active in the British charity organization Sportability, which supports paralyzed athletes’ participation in sports – from archery and quad biking, to tennis and flying light aircraft. Now an experienced adaptive hiker, he competed in the Race The Sun fundraiser in the Lake District National Park.

We recorded our interview with Chris and Daniel in March, as Daniel was preparing to hike the West Highland Way trail in Scotland. Just this week, Daniel successfully completed that trail, along with ten support volunteers from around the world. Daniel is the first person in a wheelchair known to have successfully completed this historic 96-mile trail. He made the trek as a fundraiser for BackUp, a UK organization supporting people with spinal cord injuries.

On today’s episode of Disability Rap, we speak with Alexis Ratcliff. Alexis is a quadriplegic who uses a wheelchair to get around and a ventilator to help her breathe. She acquired her disability as a result of a car accident when she was 18 months old. We are also joined by Lisa Nesbitt. Lisa is a Supervising Attorney at Disability Rights North Carolina, and she’s part of the team working on Alexis’s case.

Click here to watch the recording of the show.

Special thanks to Ana Acton and the California Department of Rehabilitation for their partnership in hosting this event with FREED!

When Dan was nine, he acquired a traumatic brain injury caused by a hit and run accident. Dan attended Widener Memorial School in Philadelphia with other children with disabilities. He then studied at Edinboro University, where he studied Political Science and pursued a career in government.

Viola was born with Spinal Muscular Atrophy (SMA), a genetic neuromuscular disease. She also attended Widener Memorial School in Philadelphia. Viola attended Johns Hopkins University where she studied Entrepreneurship and International Relations and pursued a career in financial services. After working in different roles in the financial services industry, Viola decided to return to school and earned an MBA from Duke University.

For more information and to register, go to https://www.disabilityrap.org/disability-rap-2024-03-live.

Dr. Alexander is a leader in the field of pediatric rehabilitation. While at duPont Hospital, he pioneered family-centered care, bringing families of children with disabilities into the discussions and planning of their medical care and rehab. He facilitated the transition at duPont from mostly providing inpatient care to focusing on outpatients, providing children with disabilities and diseases the care and supports they need to live at home and participate fully in their community.

We in the disability community know that the pandemic is far from behind us in the United States. Although the numbers have significantly decreased from 2020 and 2021, people are still getting sick from the virus and some still need to be hospitalized.

Although most people who contract SARS-CoV-2 fully recover, some people continue experiencing symptoms long after their initial Covid illness. A new anthology out last month explores the wide-ranging and often debilitating impacts long Covid can have on people’s lives. The Long COVID Reader is a collection of stories, essays, and poems from 45 long-haulers, as they call themselves.

The collection draws works from established writers and poets such as Pato Hebert, Emily Pinkerton, Morgan Stevens, and Nina Storey, as well as from people in other professions. The book reflects broad demographics, diverse skill sets, underrepresented voices, and those with little writing experience. We’re joined by two guests. Mary Ladd is the long-hauler publisher, founding editor, which published The Long COVID Reader. She has written for the San Francisco Chronicle, Playboy Health, and Wildfire Magazine. She’s based in the Bay Area.

Jessica B. Sokol is also with us. Jessica believes Covid-19 hit her in February 2020. She survived intubation on a ventilator. Her first book, For Better and Worse, was published in 2016. Her stories are featured in Dorothy Parker’s Ashes, Music Museum of New England, Forbes Library, and Valley Love Letters project in Northampton, Massachusetts. Her essay, Three Years and Counting, is included in The Long COVID Reader.

Click here to watch the book launch event from Green Apple Books.

At 18 months, Candice was diagnosed with Spinal Muscular Atrophy. This is a genetic muscular disability that affects the central nervous system. She has her B.A. in Journalism with an emphasis in Public Relations and a minor in Psychology. She also has her master's in public administration from California State University, Northridge. She recently attended Cornell University where she received a certificate in Diversity, Equity, and Inclusion. She is an advocate for the disabled community and serves on multiple committees to bring awareness to the public on what the disability community experiences and needs.

We’re joined by two guests. Dr. Eric Peebles is one of the named plaintiffs in this Alabama lawsuit. He currently serves as executive director of Accessible Alabama, an organization that works to increase accessible housing options in communities for people with disabilities and those facing growing limitations as they age. He has a PhD in rehabilitation from Auburn University. Eric has spastic cerebral palsy because of an oxygen deprivation during birth. This trauma has severely limited his motor skills to the point of functional quadriplegia.

We’re also joined by Bill Van Der Pol, senior trial counsel at the Alabama Disabilities Advocacy Program. Bill is one of the attorneys representing the plaintiffs in the absentee voting lawsuit.

In 1989, Michai came to California to attend the University of California Berkeley. She studied abroad for a year in Egypt and then received her master’s in Holistic Studies with a specialization in nutrition from John F. Kennedy University. She ran for Berkeley City Council in 2022. While she did not win in that election, she continues to advocate for the disabled in her communities.

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.

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 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.  

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.

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.  

One example is Medi-Cal, California’s Medicaid program. In July 2022, the state increased the asset limit for Medi-Cal from $2,000 to $130,000 for individuals and from $3,000 to $195,000 for a couple, and in 2024, these Medi-Cal asset limits will be eliminated entirely. We also saw the state expand Medi-Cal eligibility to some undocumented immigrants here in California last year.  

To talk more about these changes and the impacts they will have on people with disabilities and older adults, we’re joined by a roundtable of guests. Ted Mumford is a staff attorney with Legal Services of Northern California, an organization that provides free legal services to qualifying low-income individuals with the goal of empowering them to identify and defeat the causes and effects of poverty. And we’re also joined by Denise Miller and Samuel Jain from Disability Rights California, the protection and advocacy organization for people with disabilities in the state.  

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. 

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.

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.

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.

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 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.

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.

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.

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.

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.

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.

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. 

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.

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.

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.

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.

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.

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.

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.

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.

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

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.

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.