CARE Court Equals Oppression

LISTEN (29 min)

Our governor is racing through the legislature with a bill that will bring huge changes in how homeless people are treated in California.  The so-called Care Court bill is quickly moving through the committees in both senate and assembly without a single “no” vote.  The people who are saying “no” are disability and homeless advocates who are united in calling this an unacceptable racist and classist plan that will harm the very people it claims it will help.

 

Vanessa Ramos

In this program, two of the people who best understand the perils of the Care Court Bill will tell us why it has caused such fury.  Both have lived expertise in mental health and the criminal justice system and one of them was homeless for almost a decade.

 

Vanessa Ramos serves on Disability Rights California’s Public Policy team.  She is the Co-Founder of The Healing Heart Project. She brings her experience navigating both the justice and public mental health system as a person living with disabilities to her work.  She shapes policies and create positive outcomes rooted in self-advocacy for people with disabilities. Inspired by her peer mentor, Tina Wooton, Vanessa is focused on implementing wellness strategies within California’s peer mental health workforce and the prison system.  She is a harm reductionist.

Malini Olono

 

Malini Olono lives with complex PTSD, spent nearly a decade in homelessness, and jailed for the non-crime of being human without a home.  Before and during the Reagan years, she worked as a psych tech with people living with psychosis.  She has seen both sides of this issue.

 

Join the campaign to stop this bill.  Tell your state senators and assembly members about your opposition and ask every organization you support to join the opposition coalition.  Contact Vanessa Ramos at Disability Rights California to sign on: Vanessa.Ramos@disabilityrightsca.org

Western Regional Advocacy Project’s Statement on the CARECourt.

Produced by Adrienne Lauby and Jacob Lesner-Buxton.
Hosted by Adrienne Lauby

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Ted Jackson – E.D. of Berkeley Independent Living Center

Listen (29 min)

Ted Jackson

Disability Activists in Berkeley made history in 1972 when they opened the first Independent Living Center in the country.  All U.S. states and territories now have multiple Independent Living Centers.

Numerous people have served as Executive Directors of the Berkeley Center as the organization weathered ups and downs, grown and survived.  In April of this year Ted Jackson was appointed the new Executive Director.

Ted Jackson is a disability advocate, LGBTQ activist, accessibility consultant, and former political operative with three decades of experience working in grassroots social justice, electoral and nonprofit communities.  Listen to hear his vision is for the future for this half century old institution.

Eddie Ytuarte hosts.

Mr. Jackson has served as the Senior Advisor-Disability at the Democratic National Committee. His consulting work has provided accessibility services and disability-focused diversity, equity, and inclusion training for non-profit organizations. Previously, Ted was the Statewide Community Organizing Director for California Foundation for Independent Living Centers, organizing systems change advocacy with the Disability Organizing Network (DOnet).

His disability advocacy achievements include successful campaigns to increase access in voting rights, healthcare, and transportation, including the Bay Area Rapid Transit (BART). His work has led him to work with Equality California, the American Association for People with Disabilities, The Women’s March, Inc., and the Partnership for Inclusive Disaster Strategies. He is also an adjunct professor at American University, teaching a historical and political disability curriculum.

He volunteers on the LGBTQ Victory Fund Campaign Board and has personal passions for Shakespearean plays and baking sourdough bread.

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Neil Marcus – In Memoriam

Neil Marcus leaning against a dark reflective background, on which we see his reflection. Courtesy of Neil Marcus and Gary Ivanek.

Today we celebrate the life of actor and playwright, Neil Marcus who died last November.  Born with dystonia, a neurological disorder that causes involuntary muscle contractions and affects speech.  Marcus thought of his disability as an art.

Neil Marcus is best known for his play “Storm Reading”, a piece that deals with his day-to-day experiences as a person with a disability. Originally booked as a weekend engagement in Santa Barbara, the play toured the U.S, Canada, and England for eight years and was profiled by major media outlets. The play also was the catalyst for new accessible venues given that each venue of the tour had to accommodate Neil and his wheelchair.

We talk to Rob Lathim, the director of the play, “Storm Reading” and another performer in the show, Katie Voice.

Rob Lathim

 

We will also talk to those Neil collaborated with on pieces after “Storm Reading”:  Eric Kupers who founded the integrated dance program at Cal State East Bay and Neil’s former partner, professor of disability culture, Petra Kuppers.

Katie Voice

 

 

 

 

New York Times Obituary

Report on a Marcus Presentation

“Disabled Country,” piece for the Natural Museum of American History

 

 

 

 

 

Jacob Lesner-Buxton was the lead producer and interviewer for this program.  Mark Romoser, Sheela Gunn-Cushman, Denny Daughters and Adrienne Lauby provided audio editing and narration support.

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Micah Peace – White Disabled Activists Combat Racism

April 8, 2:30-3 pm PDT on KPFA radio

White disabled activists combating racism against the non-white disabled community is the topic of this edition of Pushing Limits radio program.  Producer/host Eddie Ytuarte will interview Micah Peace, a co-coordinator of Disability SURJ, a chapter of the national organization Showing Up For Racial Justice.

 

SURJ is  “a national network of groups and individuals organizing white people for racial and economic justice.”

 

SURJ Activists Photo from https-//surj.org/our-work/surj-disability/

Micah Peace is an Autistic, multiply Disabled organizer, educator, and researcher from Louisville, KY.  Alongside their colleague Amanda Stahl, they are a lead Co-Organizer of Disability SURJ, which works to connect the dots between racist and ableist violence, and bring more white Disabled people into the movement for Racial Justice.

 

Jacob Lesner-Buxton helped produce this program.

 

 

 

 

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Advisory Committees – What Are They Good For?

Friday, March 25, 2:30-3 pm, PDT  at KPFA Radio

 

Christine Fitzgerald, Advisory Committees for VTA, the Santa Clara Valley Transportation Authority

Many nursing homes, transportation agencies, senior services, housing authorities and other groups that heavily impact people with disabilities have Advisory Committees. And, low income and disabled people are often asked to serve on them.

 

Are these committees just window dressing? Is a committee member like a wedding planner who’s only allowed to plan the reception centerpieces?

 

How can a disabled committee member make their committee more useful? Does committee work teach skills to influence governmental decisions? Do the people who sit on these committee end up doing staff work without getting paid for it?

Mr Aaron Morrow, Advisory Committees for VTA, the Santa Clara Valley Transportation Authority

 

In short, are Advisory Committees a valid route to positive change?

 

 

Today, we talk to four veteran Advisory Committee members with disabilities about their work on these committees. And, we air excerpts from Jacob Lesnor-Buxton’s article on this topic, “So The State of California Is Requiring Me to Listen to You People.”

Bonnie Elliott, Access Advisory Committee of the City of Santa Barbara

Our guests are:

Amanda Stahl from Kentucky’s Advisory Board for People with Developmental Disabilities and its Protection and Advocacy Board;

Christine Fitzgerald and Mr. Aaron Morrow from Advisory Committees for VTA, the Santa Clara Valley Transportation Authority;

Bonnie Elliott from the Access Advisory Committee of the City of Santa Barbara; and

Dani Anderson, board member of the State-wide Independent Living Council

Dani Anderson from the board of the State-wide California Independent Living Council.

 

Program Production Team:
Jacob Lesnor-Buxton: Interviewer, lead producer, conception, writer.
Adrienne Lauby: Host, editing
Mark Romoser:  Voicing of article excerpts, editing
Sheela Gunn-Cushman:  Editing

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So The State of California Is Requiring Me to Listen to You People

By Jacob Lesner-Buxton

Jacob Lesner-Buxton

“Jacob, help me understand I keep coming to you with all these great ideas, and you won’t bring them up to the advisory committees you are on. You keep saying it is not the right time, or the committee won’t deal with that issue. I thought you wanted to make an impact.”

Ah, that was Steve, a man about 60 who is a new California transplant and views me as a power broker in the community. For the past year, he has been giving me suggestions for projects that I could do to improve the conditions of those with disabilities in the county. Although he is passionate about these ideas, I am hesitant to bring them to the committees I work with for a variety of reasons.

First, Steve can be flakey. Often when I tried to work on his ideas, he didn’t get back to me. Another challenge with his ideas is they are often unclear.  If I felt unclear about his plan, then chances are the community would as well.  The last challenge is that Steve may have overestimated the power of advisory committees to create change.

For those who aren’t aware that many government agencies, community resources, and others have advisory committees made up of stakeholders to provide input into how that program operates. In California, many policies require an advisory committee to be formed at nursing homes, transportation agencies, etc.  Some bills require the creation of a new committee to advise on senior service projects or to monitor the implantation of a new program.

About 15% of my work is devoted to sitting on advisory committees or finding others to serve on them. In my experience, the role of the advisory committees varies greatly. Some committees meet regularly and take community input seriously.  Others feel like carefully staged press events that happen two or three times a year.

Steve had the impression that I had carte blanche to bring his ideas to the different advisory committees I was sitting on. In reality, my experience on some committees is akin to being a wedding planner who is restricted to only making suggestions about the centerpieces on the tables during the reception.

Recently, I was recently told that a topic I wanted to bring up as chair of a committee was inappropriate.  County staff seemed to have the final say over what my committee and other advisory committees could discuss.  I am sure I could have protested this decision, but it would take up much energy. Plus, I could get this issue addressed in other ways, such as starting a letter-writing campaign or getting a bunch of people to show up outside their offices.

People seem to see advisory committees as the end all be all or they think they are a complete waste of time.  The truth is somewhere in the middle.

Some of my disability rights advocate friends began planning for a particular advisory committee meeting two or three months out. They were convinced that if they could get a large crowd to an advisory board of an agency that deals with home care, the problems in that office will cease.  As someone who has been to many advisory committee meetings, it’s hard to imagine this kind of success.  It’s almost impossible to have a frank discussion about the department’s deficiencies in this – or, indeed, in any advisory committee I’ve been part of.

My friends will have the courage to speak their mind during the meeting, but there is a good possibility that someone in the committee will try to silence them.  I have noticed that on many advisory boards, some members feel a duty to defend the organization’s actions. This is understandable since some of these members communicate regularly with the department they advise.  They might see things differently than the public. However, I have seen instances where the zeal to defend systems has prevented necessary conversations from happening.

For instance, about five years ago, I participated in a focus group hosted by a committee that advises the California government on policies affecting those with developmental disabilities. At the beginning of the meeting, an advocate for families with disabilities started to testify about the issues affecting her community. After three minutes, the chair of the committee stood up, put her hand out, and said, “That’s it. I am not going to listen to you criticize our services for two hours.”

While I could understand if the chair asked the women to make room for others to speak, there were only five members of the public present. Furthermore, none of the others at the meeting seemed to have the urge to speak. The chairwoman’s outburst changed the tenor of the meeting.

Instead of discussing the problems affecting those with disabilities the focus group only made small talk about family and the weather in Santa Barbara.

I wonder if the chair decided felt obliged to defend the work of California institutions to further her career.  If so, she may have been off base.  Unless the meeting room was bugged, I don’t think someone from the governor’s office would have heard about the session.  And, if the governor at the time heard the woman criticizing his policies, I doubt he would have cared.

Once I was interviewed by this Governor’s staff about an appointment to a committee and they asked me to share my honest feelings about him. Despite sharing my frustration at his policies, I was still appointed to that committee.

I am often critical of who gets picked to be on what committee, as well as those who feel the need to defend government officials. My colleague from a different organization got chosen to be on a committee that addressed the needs of people with intellectual disabilities. Although I respected the person’s advocacy, there were dozens of others who I thought might be more be appropriate for the committee.

I notice that some people, including myself, tend to collect advisory committees like baseball cards. And, I have seen a hint of resentment among some advocates who see the same faces on every committee.  It might sound like I am looking for brownie points, but I would happily give up on my seat on many of those advisory committees. I believe that my voice is not unique, and thousands of others can bring what I can to the table. However, I know many other disability activists, particularly people of color, who I believe have unique voices and should be at those tables.

And there are others who feel their voice is more effective on the street than in a conference room.

It’s critical that those on advisory boards be honest with the public on the reality of what that committee can do.  When Steve comes with an idea, he isn’t happy when I tell him that I won’t be taking it to the Committee.  He isn’t happy about the ideological sacrifices I make to pay my rent or keep food on the table.  Still, he has a right to understand my thinking. Maybe there will be an issue where I am willing to do a type of advocacy that will put my job on the line.

In the meantime, Steve and others should understand that change has been created in spaces other than the conference room at 3 pm on the third Monday of every month (excluding December).

If I suggest that a client picket the agency I work for, I might be putting my job at risk.  But, I can refer that person to someone who could teach them how to advocate in a way that I can’t.  If directing clients to others for advocacy advice is not an option, I could downplay the significance of my own advisory committees’ power.

The best way I have heard advisory committees described was from two people who worked at different agencies a hundred miles apart.   They both told me that there was an advisory committee at the place where they worked. However, neither knew what the committees talked about when they met. They said that if I was interested in making changes, they could try and get me information.

These people hit the nail on the head when it comes to many  advisory committees. If these advisory committees really created social change, then employees who are active in their workplaces would know more about them.  These people’s ignorance about the committees shows how many  advisory committees are seen as a legal requirement rather than a catalyst for change

It may appear that I am bad-mouthing the advisory committee in this article. However, they provide insight into how government works and allow the public to see those who are running these systems.  If you know what is possible to achieve and have limited expectations, some of these committees can move the needle a few inches towards social change, especially when paired with other social justice work.

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“Golem Girl” with Riva Lehrer

Listen, Friday, January 28, 2:30 pm PST on  KPFA

Riva Lehrer is an artist, writer and curator who focuses on the socially challenged body.  She is best known for representations of people whose physical embodiment, sexuality, or gender identity have long been stigmatized.  Part of a vibrant Chicago disability activist community, her portraits include Carrie Sandahl, Alice Wong, Lennard Davis, Nadina LaSpina, and many other bright lights of the disability community.

 

Her memoir and audio book, Golem Girl, is a complex story of growing up with a visible disability, undergoing surgeries, finding a path to her artistic self despite a traditional art school, boyfriends, girlfriends, physical struggle, and the connection with a disability culture group that changed this Golem Girl forever.

 

Golem Girl is filled with the awareness of the political nature of disability.  It’s intensely personal observations and memories are illustrated with the bright colors of Riva Lehrer’s paintings.

 

Ms. Lehrer’s work has been seen in venues including the National Portrait Gallery of the Smithsonian, Yale University, the United Nations, the National Museum of Women in the Arts in Washington, DC, the Arnot Museum, the DeCordova Museum, the Frye Museum, the Chicago Cultural Center, and the State of Illinois Museum.

 

Awards include the 2017 3Arts MacDowell Fellowship for writing, 2015 3Arts Residency Fellowship at the University of Illinois; the 2014 Carnegie Mellon Fellowship at Haverford and Bryn Mawr Colleges; the 2009 Prairie Fellowship at the Ragdale Foundation. Grants include the 2009 Critical Fierceness Grant, the 2008 3Arts Foundation Grant, and the 2006 Wynn Newhouse Award for Excellence, (NYC), as well as grants from the Illinois Arts Council, the University of Illinois, and the National Endowment for the Arts.

 

By Riva Lehrer, Self Portrait

Her memoir, Golem Girl, is published by the One World imprint of Penguin/Random House in October 2020. Ms. Lehrer is represented by Regal Hoffman & Associates literary agency, NYC.

 

Ms. Lehrer is on faculty at the School of the Art Institute of Chicago, and instructor in the Medical Humanities Departments of Northwestern University.

 

​Adrienne Lauby produced and hosts the program.

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“Plain Jane – The Shockumentary”

Jane Hash

Today’s show features Plain Jane: The Shockumentary, a film by Jane Hash, who is anything but plain.

Join host Mark Romoser as he talks with Jane Hash.

Find out why it’s called the Shockumentary.
Spoiler alert: Mermaids are involved.

Find out why it’s called the Shockumentary.
Spoiler alert: Mermaids are involved.Jane Hask

From the Holistic Vitality Education Channel!

Subscribe to their channel on YouTube & the blog @ holisticvitalityeducator.blogspot.com
Stay connected on social media Twitter @JaneHashCNHP
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https://www.instagram.com/janehashcnhp

 

Shooting for this documentary began in 2007 and it was released on DVD in 2013 via self-distribution. It made its way around the globe and was featured in the ReFrame Film Festival in Canada.

This documentary is accurately described as a “shockumentary” in that common notions about disabled people are turned upside down and backwards. Part interview, part music video, part animation, part reenactment, and a dream sequence, this film explores new territory in the realm of human experience; a triumph of the will as Jane overcomes obstacles and destroys popular myths.

Jane Hash was born with Osteogenesis Imperfecta, a condition which is manifested by extremely brittle bones. At birth, Jane had twenty-six broken bones and was not expected to live 3 hours. By the time she was in high school, she had broken 200 bones.

With a large dose of dark humor, this independent film is full of social taboos and cult-classic potential. It will make you laugh more than it will make you cry but most importantly, it will make you think. By example, Jane teaches viewers that acceptance of self and of others can pave the road to a fantastically outrageous reality that is full of adventure!

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Crisis and Support with Jim Van Buskirk

Jim Van Buskirk

Friday, November 5, 2021, 2:30 pm PST on KPFA radio

When an old friend went to the hospital and suddenly found his moderate disability had become both severe and life threatening, Jim Van Buskirk wanted to help.  Although he lived over a thousand miles away, Van Buskirk found a useful role in posting daily updates on a Caring Bridge site.  It was certainly emotional but becoming somewhat routine until… Jim found himself lying in a hospital bed too.

Jim Van Buskirk tells this unfolding story.

 

We also talk about Buskirk’s work with the Final Exit Network, a group of volunteers who educate qualified individuals in practical, peaceful ways to end their lives. They offer a compassionate bedside presence and defend people’s right to choose their own death.

 

Produced and hosted by Adrienne Lauby and Shelley Berman.

original air date: November 5, 2021

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High Support Needs? An Interview with Cal Montgomery

In 2005, Cal Montgomery burst into the disability movement as an intellectual who both made sense and was fun to read.  His three-part series on medicalization in the disability magazine, Ragged Edge, took book reviews to a entirely new level. 

Now, after years of writing, entertaining and educating us, Cal Montgomery comes to Pushing Limits.  He’ll be in conversation with Corbett Joan O’Toole to discuss some of the people whom the movement has most struggled to include. They’ll and ask the question, “What does disability rights look like for those with the highest support needs, anyway?”

Here’s a taste of Cal’s Montgomery’s writing:

“I’ve watched people — mostly people who consider themselves to be supporters of disability rights — react to me as my ability to control my body deteriorated again and I slowly slipped across whatever lines they were using to mark the boundary between “high-functioning” and “low-functioning.” A lot of them can’t handle it.  If they’re very polite they make some kind of excuse, but either way most of them are no longer in my life.” (“Defining Autistic Lives: A review of ‘Autism is a World,'” Cal Montgomery, Ragged Edge.)

“…while services for physically disabled people were to a significant extent organized around actual needs that people wanted met and so transition from large institutional settings to the community could be accompanied by significant gains in self-determination, services for people with I/DD tended to center on containment, control, and cost-effectiveness.”  (“Wolfensberger at the Door,” Cal’s Blog)

Cal Montgomery is a white, educated, trans, queer, autistic, physically disabled activist and survivor of long term institutionalization — and is someone often considered outside the reach of disability rights.  He is active on twitter @Cal__Montgomery

Corbett Joan OToole is a white queer disabled elder in that movement that has excluded Cal and others.

Mollie McLeod produced and hosts the program.

Cal Montgomery’s recent writing is available at Cal’s Blog and on twitter @Cal__Montgomery.
Cal’s older writing is available at Raggededgemagazine.com
Corbett Joan O’Toole’s book, “Fading Scars: My Queer Disability History”, 2nd Edition is available at Amazon

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