“Lab Girl” with Hope Jahren

Listen (59 min)

Hope Jahren, author of the best selling memoir, Lab Girl, joins us for an hour of discussion about mental illness, plants, and the life of a woman scientist.

Shelley Berman, Josh Elwood, Sheela Gunn-Cushman, Adrienne Lauby and Mark Romoser talk to Ms Jahren, read from her book and entreat listeners to become members of KPFA.

Lab Girl is a book about work, love, and the mountains that can be moved when those two things come together. It is told through Jahren’s stories: about her childhood in rural Minnesota with an uncompromising mother and a father who encouraged hours of play in his classroom’s labs; about how she found a sanctuary in science, and learned to perform lab work done “with both the heart and the hands”; about her bouts with mental illness, and about the inevitable disappointments, but also the triumphs and exhilarating discoveries, of scientific work.

At the core of this book is the story of a relationship Jahren forged with a brilliant, wounded man named Bill, who becomes her lab partner and best friend.

Original Air Date: 3-2-18

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Different Geography; Different Disability Experiences

Friday, Feb. 16, 2:30 pm PST

Food, politics and slang.  In the U.SA it seems like these things very greatly between regions. Could the way people perceive those with disabilities also very greatly between areas?

Join us as we explore some of the variations in attitudes that people with disabilities face throughout the USA

Helping us explore this topic will be Karin Willison. Ms. Willison is the creator of Free Wheelin Travel, a blog about travel and disability. On her blog she shares her experiences with access in many U.S. cities and states including Boston, NYC and Indiana.

Dr. Michelle Hernandez also joins us. Dr. Hernandez is a Clinical Psychologist and will be share the attitudinal differences in she notices in traveling the continental U.S. and Hawaii as a Latina with a disability.

So come along as we explore the disability experience outside the Golden Gate!

Produced and Hosted by Jacob Lesnor-Buxton and Sheela Gunn-Cushman.

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s.e. smith on Disability

Friday, February 2, 2:30 pm PST on KPFA radio

Writer, agitator, and commentator s.e. smith* joins us for the half hour.   Based in Northern California, s.e. smith has a journalistic focus on social issues, particularly gender, prison reform, disability rights, environmental justice, queerness, class, and the intersections thereof, with a special interest in rural subjects.

s.e. smith has been published in The Guardian, Bitch Magazine, Aljazeera America, AlterNet, Yes! Magazine, Jezebel, Salon, the Sundance Channel blog, Longshot Magazine, Think Progress, xoJane, Truthout, Teen Vogue, Time, Nerve, VICE, The Week, In These Times, Vox, Bustle, the Daily Dot, Rolling Stone, Mic, Rewire and other outlets.

Eddie Ytuarte produced and hosts a discussion of s.e.’s recent writings on disability.

(*smith spells ou’s name in lower case letters; pronoun preference for s.e. is “ou.”)

Let’s Mail Our Remains to Paul Ryan When Trumpcare Kills Us …Griffin notes that, in this instance, cremains may act as protected speech, potentially creating some Constitutional issues— especially if the sender is placed on a government watch list.        s.e. smith, from a recent article in Vice

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Universal Minimum Income & Disability

Friday, Jan. 19, 2:30 pm PST, on KPFA radio

Maybe the way to end poverty is to give poor people money.

The idea of a universal basic income in the U.S. isn’t new. Progressives pushed the concept in the 1960s and 70s, and several other countries have tried local experiments. But, tech industry leaders like Tesla’s Elon Musk have recently taken up the idea and that’s making a buzz.

Many of us in the disability community already live on the basic income called Social Security and SSI.   Today, Mark Romoser, Josh Elwood, Sheela Gunn-Cushman, Eddie Ytuarte and Adrienne Lauby examine this new (old) idea.

Would a universal income produce more volunteers for your organization as those who are beaten down by poverty become activated empowered voting individuals. Or would poor people simply have more isolation and personal loneliness without the necessity to work a series of low-wage jobs? Based on the experience of people who currently live on the fixed income of Social Security our panel takes up this and other issues?

Produced and hosted by Adrienne Lauby with audio editing help from Sheela Gunn-Cushman. Audio engineering by Shelley Berman.

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Cognitive Disabilities

Listen  29 min

An informative program about the distinct disabilities of autism and cognitive disorders with two disability advocates.

Austin Tam will discuss his observations and insights about cognitive disorders and disability in the Asian/Hawaiian and Pacific Islander community.  Tam attended the California Renters Power Assembly and helped organize the “Making the Invisible Visible” Disability Summit in Alameda last year.

Mark Romoser was diagnosed with autism at the age of 4, by the renowned Dr. Leo Kanner. After attending eight different schools and two colleges, he graduated cum laude from Yale in 1985.  Mark has worked with top researchers in the autism field, including Dr. Fred Volkmar at Yale. More recently, Mark has been employed at the Silicon Valley Center for Independent Living, in San Jose, California, as a community advocate. Mark has presented on his personal experience with autism for over twenty-five years and is a member of the Pushing Limits Collective.

Eddie Ytuarte produced and hosts this program.

Air date: 1-5-18
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Disability: The Best and Worst of 2017

Listen (29 min.)

Jacob Lesner-Buxton joins our crew for 30 minutes of analysis and reflection on the events of 2017 for people with disabilities.

Some topics:

1. U.S. involved wars cause death and disability in Afghanistan, Mexico, Syria, Iraq, Yemen and elsewhere
2.  Electronic Visit Verification to be required in California IHSS homes
3.  Trump – Defeat of Health Care Deform; success of Tax Deform. This summer’s ADAPT protests and subsequent unprecedented media coverage.
4.  A.C. Transit in California’s East Bay
5.  The Housing Crisis for People with Disabilities
6.  People with Disabilities More Likely to be Arrested
7.  The new leftist president of Ecuador, Lenin Moreno, is a paraplegic who uses a wheelchair. He was supported by Julian Assange of Wikileaks fame.

Produced by Adrienne Lauby.  In-studio panel: Eddie Ytuarte, Josh Elwood, Sheela Gunn-Cushman, Mark Romoser and Jacob Lesner-Buxton

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Recovery and Disability

Friday, Dec. 1, 2:30-3 pm PST on KPFA

Laurie joins us to talk about how living with diabetes, the Epstein-Barr virus, fibromyalgia and other physical problems has been improved by her long-time participation in 12-step anonymous recovery programs.

“I used to say: Food Was Just My Butter’s Delivery Service,” Laurie says as she talks to Shelley about her acceptance of herself as a food addict and her slow recovery of her self-worth through the 12 steps.

“We’re looking at trying to find ourselves acceptable, trying to find ourselves worthy of love, trying to find ourselves able to love someone else — trying to find ourselves,” she says.

Tune in for 30 minutes of meditative wisdom from the Recovery Community.

To find a 12 Step meeting near you, simply put “12 step programs near me” in your browser or call toll free: 844-768-1241.


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Stevland Hardaway Judkin – Stevie Wonder


Friday, Nov 3, 2:30-3 pm PST KPFA

Today we celebrate the musical contributions of Stevland Hardaway Judkins who for decades has delighted the disabled and non-disabled world with his music, commitment to blind and disability rights and to universal peace.

Of course, we are talking about Stevie Wonder who remains a fixture in popular American culture and to think that this is the same musician who presented us with “Fingertips, Part Two” in 1963.  Those years were the time of one-hit popular stars who faded away permanently; but not Stevie Wonder who endured and grew.


Eddie Ytuarte produced and hosts this program.

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Sonoma County Fires and Disability

Friday, October 20, 2:30 pm PST on KPFA

Sharon Rae Robinson who lived with memory loss, Christina Hanson, a 27 year-old woman who used a wheelchair her entire life because of Spina Bifida, and other disabled people were among the 42 who died in the Northern Calif. fires in the last ten days.

Among the 20 thousand people who were evacuated in Santa Rosa were people from numerous assisted living and supportive group homes including 240 people from the Sonoma Developmental Center, 450 people from Oakmont assisted living facilities, and both the Sutter and Kaiser hospitals. A private school for autistic students of mixed income in the Wells Fargo Center burned down.

We talk with Lake Kowell, a staff member at Disability Services and Legal Center who lives with a spinal cord injury, has spent many days working in the Local Assistance and Evacuation Centers.

Some of the information we discuss in this program:

  1. Governor Brown’s veto of SB 649 which would have made it easier to build cell phone towers.

  2. Fire Fund for People with Disabilities.  The California Foundation for Independent Living Centers has established the Richard Devylder Disaster Relief Fund. Donations made to the fund will be used to assist survivors with disabilities across the state who have lost their critical mobility and accessibility devices such as wheelchairs, scooters, walkers, canes, hearing aids and communication devices in the fires.
  3. Gift Cards for people with disabilities.  Sterling Adaptives and Adaptive Technology Service will match donations. For very $10. you give, $30 will be given to people with disabilities. Mail cards to:
    62A Brookwood Avenue

    Santa Rosa, CA 95404
  4. Investigation of Varenna and Villa Capri licensed care facilities in the Oakmont Senior Living Development by the California Department of Social Services.  That department also does routine reviews of all assisted living facilities which were evacuated before people can return. (All 430 residents of these two care homes were evacuated safely.)
  5. Lake Kowell’s “Dancing with the Stars” performance.  A Raven Performing Arts Theater fundraiser, Saturday Nov 4, 7:30 pm.  Some proceeds to fire victims.
  6. Electronic Visit Verification could mean onerous new rules for IHSS workers, the people who help us live independent lives. The State of California is being pressured to comply with a new Federal mandate. It could require workers and people with disabilities to call into an electronic system as they move from task to task. It is being resisted. If you want to get involved in pushing back against these new rules, send me an e-mail at adrienne@sonic.net.

Produced by Adrienne Lauby.  Hosted by Shelley Berman and Adrienne Lauby.


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Opposing Electronic Visit Verification, Statement & Document Links

Statement in Opposition and Questions about Electronic Visit Verification (EVV)

My name is Hannah Karpilow, I have been an IHSS worker since 1981 and I work for people in my community, not family. I have also been involved in recruiting and referring workers, for IHSS and private pay clients. Unfortunately, I have seen the IHSS program go from bad to worse in terms of bureaucratic incompetence. It is this incompetence and the scrutiny that we are subject to, that turns people away from working within the system. Adding this level of surveillance will only increase this problem, and at a time when we desperately need to be increasing the workforce to meet the needs of the aging population. 
Besides the morality of this policy, I am not going to contribute suggestions on how to implement the Electronic Visit Verification because I see it as a completely fraudulent use of tax dollars no matter how it is rolled out. 
I would like to get some numbers. Before you go to far with this, we should have an idea of what it will cost the taxpayers – both State and Federal. I understand the Feds will pick up 90% of the design and implementation, and 75% of the maintenance costs. It’s all taxpayers dollars. What is the ballpark range of the initial phase? What about ongoing? Surely some numbers are available based on other states’ costs. These need to be looked at closely and compared with two figures: One, the projected cost SAVINGS that the EVV is intended to net, based on fraud (real and perceived), and two, the penalties for non-compliance. 
There’s also the question of why this is necessary when we have social workers who visit our clients to assess their needs and confirm that those needs are being met. Can’t we trust them to make accurate observations and assessments based on these visits? 
Our great State of California has fought back against Federal legislation that regards people as criminals simply for being born in another country even when they were brought here as infants. This EVV legislation regards people as criminals simply for being poor and disabled or working in a job that is given such low status that in some cases we earn less than minimum wage. 
I urge the stakeholders and policy makers to consider scrapping the design phase and focus instead on how to repeal this legislation based on the civil rights laid out in the 1999 Olmstead Decision of the Americans with Disabilities Act of 1990. Clearly this policy is not for the benefit of home care recipients or providers, but for high paid consultants and technology companies to profit on our backs. 
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