Maytte Bustillos: Still Living with Brain Cancer

Friday, June 21 2:30-3 pm PST on KPFA radio

Maytte Bustillos

It’s ten years since her brain cancer diagnosis, a time when doctors gave her two years to live. Now, it’s three days before her fourth brain surgery and Maytte Bustillos is not thinking too much about all these numbers. She speaks with us about finding joy amidst the challenges of living with a chronic and terminal illness.

Since we last talked with her, Maytte Bustilos has been raising her daughter, teaching school and dealing with the end of her marriage.  She speaks openly of the challenges and delights of a life of health routines, family ties and spiritual strength.

Produced and hosted by Shelley Berman.

Heading Home
Day after surgery
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Transportation Justice

Friday, June 7, 2:30-3 pm PDT on KPFA

Are you free to move about the Bay Area? Reliably? Conveniently? Accessibly? Affordably?

Does it bother you that people with cars can go anywhere they wish at any time, while you cannot? Are you forced to ride for several hours in a paratransit vehicle only to arrive at your destination too late for your appointment, or halfway through the concert?

The Transportation Justice Project wants to help. See their vision statement here.

The East Bay Center for the Blind (EBCB), an organization with deep roots in the disability community, is setting a table where users of the system can provide solutions.

Learn what they are doing and how your voice can be heard from our guests, Daveed Mandel and Jenna Rubin.  The EBCB Transportation Justice Project is sponsored by a grant from the San Francisco Foundation

Produced and co-hosted by Eddie Ytuarte.
Co-host: Sheela Gunn-Cushman.

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Transportation Justice Project – Vision Statement

Are you free to move about the Bay Area? Reliably? Conveniently? Accessibly? Affordably?

Does it bother you that people with cars can go anywhere they wish at any time, while you cannot? Do you have to walk a long way and wait a long time in inclement weather for the bus or train? Are you forced to ride for several hours in a Paratransit vehicle only to arrive at your destination too late for your appointment, or halfway through the concert?

Freedom of movement is a fundamental right guaranteed under the United Nations Universal Declaration of Human Rights, yet seniors, people with disabilities, and all other non-drivers are denied it.

We deserve far better!

The transportation justice movement is gaining momentum here and abroad. The East Bay Center for the Blind recently launched Transportation Justice Project, funded by a grant from the San Francisco Foundation, putting the focus on the needs of local seniors and people with disabilities.

We seek to close the gap between drivers and non-drivers by no less than a complete overhaul and integration of all modes of public transportation. We now have allies in the cause, including Urban Habitat, Transform, Seamless Bay Area, and LIFE ElderCare.

Let’s build a coalition! Join the transportation revolution now!

For more information contact:
Jenna Rubin
Outreach Coordinator

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Mental Disability Overview

Today we talk about Mental Disability through many points of view.  We hear a poem about gentrification from an artist living with anxiety, stage two bipolar disorder, and depression.  A psychiatric nurse describes her recovery from severe schizophrenia… and more.

Through the consumer and client empowerment movement, people are on the move.

Hear their stories as well as an analysis of the political and social landscape they navigate every day.

Schizophrenia, obsessive compulsive disorder, depression, and eating addictions. We play excerpts of interviews with consumer advocate Sally Zinman, Catherine Penny and Fable the Poet.

This is a fund drive program and we are asking you to support KPFA, the station that supports our work and the work of so many people with mental disabilities working for their own recovery and the recovery of our culture.

Produced by Adrienne Lauby.  Hosts: Shelley Berman, Adrienne Lauby & Josh Elwood.

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CalABLE Savings Accounts

The disability community can thank people with Developmental and Intellectual Disabilities (and their allies) for an incredibly useful new tool.  ABLE accounts have come to California.  For the first time, many of us can now amass substantial savings without being penalized with dollars deducted from our Social Security or loss of Medi-Cal benefits!

Supplemental Security Income (SSI) benefits limit savings to $2,000. — a very shaky safety net indeed. But the federal and state ABLE programs offer a work-around.

Dante Allen, Executive Director of the CalABLE board.

As usual, there’s twists and turns.  Find out more as we talk with Dante Q. Allen, Executive Director of the CalABLE Board.

Sheela Gunn-Cushman and Adrienne Lauby host.

There is a move to expand these accounts to more people.  To find out more, visit the Pushing Limits website. 

Tell your Congressional representatives to sign on as a co-sponsor.  There are talking points and other support at the link above.

Other contacts for the CalABLE program:
Phone: 833-Cal-ABLE (833-225-2253) between 9am and 5pm PT

Pushing Limits has been selected as one of the Ten Top Audio Podcasts & Radio You Must Subscribe and Listen to in 2019 by   It’s a great list of podcasts and we’re honored to be among them.

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Tell Congress to Support the ABLE Age Adjustment Act!

To find your Senators go here:

Please contact your congressional representatives and ask them to cosponsor the ABLE Age Adjustment Act (S.651) today!

To find your House of Representatives members go here:


--I am your constituent from [name of city and state].

--I am calling to ask Senator/Representative [NAME] to cosponsor the ABLE Age Adjustment Act (S. 817/ HR 1874).
ABLE accounts are important to people with disabilities because they allow them the opportunity to save more than $2000 in assets -to be spent on disability related expenses - without jeopardizing their much-needed public benefits like Supplemental Security Income (SSI) and Medicaid.

--Unfortunately, only people whose disabilities occurred prior to age 26 are currently eligible for ABLE accounts.

--By increasing age of onset from before age 26 to before age 46, this bill will enable at least 6 million more people with disabilities to open an ABLE account and enhance their financial independence and quality of life.

--It will also increase the likelihood that ABLE programs across the country will be sustainable and costs will be kept low.

--I hope we can count on Senator/Representative [NAME] to support the disability community and cosponsor the ABLE Age Adjustment Act!

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Susan da Silva

Friday, March 29, 2:30 pm PST on KPFA

The State of Our Bodies (& Minds)
The State of the World
The State of the Pacifica Network

We’re very proud to bring you a discussion with Susan da Silva, one of the newly elected listener representatives to KPFA’s local station board.

Get behind the headlines on far-right President Bolsonaro’s effect on Brazil. Learn about a big financial challenge for the Pacifica network. All that, and

Shelley Berman & Adrienne Lauby host.

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A Canary Dies – Maria’s Obituary

Maria (Sargent) August Ani Thupten Tsondru
August 3, 1970 – March 12, 2019
Trigger Warning: the following has been written by Maria and subsequently posted by Sarah, Maria’s friend. It contains discussion of self-inflicted euthanasia. If this topic is particularly sensitive for you, please be forewarned. 

On March 12th, I chose to end my Earth Walk and reunite with the Mother of All Things. I wanted to free myself from the straightjacket of electrifying pain and neurological debilitation of Electro-Hypersensitivity (EHS) and Epstein-Barr Virus (EBV). These hidden modern-day epidemics humbled me and connected me to the great suffering of others. Yet, they also shattered and dehumanized me. The constant tension of strange symptoms and crushing pain left me cut off from a life of embodied prayer and active altruism; I felt alienated from my true nature and impotent to be of service. I decided the greater good was to give my life with the aspiration to raise awareness and help others. As Thomas Merton said, “Man has no greater love than that he lay down his life for his friend.”

If anyone asks, you can say I ended my own life. But it would be more accurate to say I died from Electromagnetic Field (EMF) poisoning. I am not ashamed of my actions. They were based on compassion for my own suffering and the desire to prevent more people from becoming sick.

I’m not the first person with Electro-Hypersensitivity (EHS) to die by their own hand, but perhaps I’m the first to publicize it. And that’s my whole intention. Let me be the poster child for this 21st century plague. Let me be the impetus for positive change. What sends a stronger message than death? The message is: seek the truth and learn how to protect yourselves. The message is: create housing opportunities for people with EHS.

Man-made Electromagnetic Fields (EMFs) at current astronomical levels are unprecedented in human history. And they are not safe. Human cells cannot function properly under this 24/7 radiation shower. That is why people are getting sick. I chose to die so you would know how important it is to reduce your exposure to this invisible toxin. I chose to die so the world would see that safe camps for EMF refugees are desperately needed.

EHS has all the ingredients of torture: cause someone intolerable pain, separate them from the community, and prevent them from sleeping. Is that a risk you are willing to take? Is that a life you want for your children? It’s much, much easier to prevent than to cure. And those, like me, who get a severe case, find there is nowhere to live, detox, and recover. Let us care for this growing population of our society. Now is the time to start developing wilderness Safe Havens. Every person deserves a safe place to call home.    

I do not want a funeral, memorial service, or life celebration. Instead, please help the living by honoring my three final wishes. Thank you and may you be well.

  1. Take simple steps to lower your EMF exposure and stay healthy. Organize housing for people sick with EHS. Resources for this are: the fantastic book The Non-Tinfoil Guide to EMFs and the Safe Haven tab at  
  2. Cleanse your body of radiation, viruses, heavy metals, and pesticides, which cause EHS and other chronic illnesses, including lupus, Lyme, MS, RA, and cancer. It’s fun and yummy!  Read the beautiful book Life Changing Foods by Anthony William.
  3. Take extra good care of each other. Spend time each week in loving service to a sick, injured, or housebound person. Let them know they are not forgotten. This is the true purpose of being human. Resources for this are: the books Everybody Always by Goff, Peace Pilgrim, and the TLC Book tab at  

May my death usher in a new era, an era in which EHS and EBV are taken seriously, diagnosed correctly, treated immediately, and prevented widely. May this be an era of permaculture eco-villages, bountiful food forests, abundant altruism and safe technologies. I gladly sacrifice my life for that purpose. May it be so!

Visit my blog,, for more information and continued updates from friends.  Look for me in the sun, the moon, and the stars. Pray that I’ve melted into Mother Luminosity and am helping all beings, in all worlds, in all ways. May the bodhichitta flourish! 

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On Being An Ally

March 15, 2:30 pm PST on KPFA radio.

We’re blowing up language, we’re blowing up humanity in talking about expansion of who we are. JOIN us!
Fresh! “Lev” White

Excerpts from the First Voice apprentice program’s Full Circle show on allyship. This show starts a conversation to re-imagine ourselves and our world…and teaches us A LOT! Jess Dene Schlesinger and Fresh! “Lev” White explore intersectionality and allyship with the LGBTQIA+ community and that of people with disabilities.

Also, news about the Gender Krip Planet event with Rapper AJ420, deaf poet Joy Elan, Lisa Ganser, Leroy F. Moore Jr. at LaPena Cultural Center in Berkeley, March 30 at 7 pm.

Sharon Peterson produced and hosted the original program. Our excerpts were edited by Sheela Gunn-Cushman and hosted by Shelley Berman. Adrienne Lauby also contributed to this program

Glossary of Terms

Cis gender: A person whose sense of personal identity and gender corresponds with their birth sex.

Cis hetero: A person whose sense of personal identity and gender corresponds with their birth sex AND they are attracted to people of the opposite sex.

Microaggressions: Brief and commonplace daily verbal, behavioral, or environmental indignities, whether intentional or unintentional, that communicate hostile, derogatory, or negative prejudicial slights and insults toward members of a marginalized group.

Ally: One who understands basic issues for a marginalized person or group and stands with them, especially when they are attacked or disparaged individually.

Accomplice: (as defined by our guests in this program) One who becomes an ally and also seeks to dismantle the systems that marginalize certain groups of people, one who tried to change institutional and governmental injustice toward a marginalized group that is not your own.

Trauma-Informed: A person-centered response focused on improving an individuals’ all around wellness rather than simply treating symptoms of mental illness or other difficult life experiences.

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Tell Me The Number Before Infinity

Listen (59 min)
Becky and Dena Taylor’s book tells the story of a girl with a quirky mind, an eccentric family, and oh yes, a disability.

Born premature, Becky was given the usual prognosis “probably going to be blind, deaf and retarded.” Yet, at age four she was doing calculus in her head. One day her dad sought to stump his daughter-the-math-whiz by asking, “Is infinity an odd or an even number?” She thought about it for a bit, smiled, then replied, “Tell me the number before infinity.

We talk to Becky and Dena Taylor about growing up with cerebral palsy and their book, Tell me the Number Before Infinity from Many Names Press. Alternating voices, this mother and daughter team explore the obstacles and harassment Becky faces as a person with a visible disability — the bullying, the teachers with inflexible rules and the lack of support even from some Disability Center staff. These are stories of a mainstreamed education told with humor, intimacy and frankness.

We also feature, Every Crumb, Every Minute, Every Day by John McCutcheon, a song he wrote after reading Becky and Dena Taylor’s book.

This fund drive special is hosted by Shelley Berman, Josh Elwood, Sheela Gunn-Cushman and Adrienne Lauby. Throughout the hour, we’ll ask people to become members of KPFA and offer this singular book as a thank you gift. The number to call is (510) 848-5732, or toll free at (800) 439-5732.

“This book should be required reading for teachers and everyone in equity and critical disability studies.” –Gloria Filax, Professor of Disability Studies, Athabasca University

Becky Taylor lives in Santa Cruz where she vice-chairs the Commission on Disabilities, and is involved with other civic organizations. She is a UC Santa Cruz Computer Science graduate. Her mother, Dena Taylor, MSW, is retired from a career in social work and education. She is the author, editor, and co-editor of six books on women’s issues.

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