Pushing Limits Radio

We've Moved!!

2011-01-21T12:31:00.000-08:00

Click here for the new site
or put our new address in your browser

http://www.pushinglimits.i941.net

The Ed Roberts Campus

2010-12-03T16:36:00.000-08:00

Listen 28 min

After 15 years of planning, seven disability movement organizations have opened an 80,000 sq ft building at a major Berkeley transit hub, the Ed Roberts Campus.photo of large group at groundbreaking ceremony

A little history. In the early 70’s, Ed Roberts was a quadriplegic living in the Cowell Hospital and studying at the University of Berkeley. Change and liberation was in the air, so it didn’t take long for Ed and some other students with disabilities to decide that they didn’t need nurses. They could live independently with attendants. They formed a group called the Rolling Quads which morphed into the next group, which morphed and changed and morphed and started the Center for Independent Living and, in the meantime—the modern independent living movement was born. And that’s not the end of the story.

People with disabilities started other organizations, projects and groups. When seven of these groups got together to dream about a building to house all their organizations they dreamed of a place to share amenities like meeting rooms; centers for computers, child development and fitness; a theater and café. And, since those who used the building would be mostly people with disabilities, it had to be near a major public transit hub. No one doubted the dream would come with a high price tag.

photo of building

The organizations are Bay Area Outreach and Recreation Program (BORP), Center for Accessible Technology (CforAT), Center for Independent Living (CIL), Computer Technologies Program (CTP), Disability Rights Education and Defense Fund (DREDF), Through the Looking Glass (TLG), and World Institute on Disability (WID).

Dmetri Belser came to KPFA's studio to talk about it. Dmetri is the executive director of The Center for Accessible Technology. The buck stopped with him in the fundraising and construction phase.

Raphaella Bennin went over to the Campus to talk to people who use the new facility including Reba Knickerbocker, Julie Fuller, Miley George, Saraswathi Devi, Leslie Simon, and Peter Sussman.

Photo of Dmetri Belser

Eddie Ytuarte and Adrienne Lauby host.

Laura Hershey

2010-11-30T21:29:00.001-08:00

Disability, Women’s Rights Advocate, Poet, Writer and Proud Mother Dies Unexpectedly November 26th After Brief Illness – Death Stuns and Saddens Thousands Who Followed Her Work and Advocacy Across Nation –Known for Her Poetry & Writings Including “You Get Proud By Practicing”/

Photo of Robin Stephens and Laura Hershey in front of magnificant canyon, courtesy Ken Stein

What the heck is going on at KPFA?

2010-11-25T14:28:00.000-08:00

Pushing Limits' Members answer:

picture of Super Magawatt Grover

Eddie Ytuarte (3:34)
Adrienne Lauby (4:38)
Super Megawatt Grover* (3:39)
Mary Ratcliff, Editor of Bay View Newspaper (20-30 min interview by Kate Raphael on KPFA's Women's Magazine.

The world is in a terrible place and desperately needs the ideas, the energy, the enthusiasm, the positive spirit of the people who are on the bottom, who are fighting to rise to the top. That's where the energy is, where the ideas are, that passion needs to be heard on KPFA every hour of every day. And, there are so many people who are dying to be heard on KPFA, dying, literally dying, to be heard and can't get on the station as it is currently prioritized.
- Mary Ratcliff on KPFA's Women's Magazine, 11-22-10

*aka Shelley Berman

Rants, Stories and Lies #3

2010-11-18T16:38:00.000-08:00

Listen


Short opinions, satire, interviews and commentaries from the disability community.

Guests: Bruce Allison, S.F. city hall reporter for POOR News Network  and author of “You’re Retarded; You’ll Never Amount to Anything”;

Photo: Bruce Allison makes a banner for a street protest.
Jon Reed on the left.

Randall Wright, of Berkeley’s Fourth Friday Disability Night Out on how visibility combats discrimination;

Two members of the Sacramento addiction
& recovery community, Hurley Merical,
Executive Director of Oak Park Outreach
& MedMark Treatment Center and
Starvel Junious of Core Medical Clinic.

Eddie Ytuarte, Adrienne Lauby and Shelley Berman of the Pushing Limits Collective with personal opinions on current problems at KPFA.

Shelley Berman hosts.

Original air date: 10-17-10

Biking While Blind

2010-11-11T13:51:00.000-08:00

Photograph of Bobby McMullen and guide biking (courtesy of Poison Oak Productions)

Listen


After countless broken bones, a double organ transplant and sight loss, Bobby McMullen doesn't just ride his bike; this daredevil is a human cliffhanger.

He joins Pushing Limits hosts, Raphaella Bennin and Leah Gardner to talk about his life and the documentary based on his mountain biking exploits, The Way Bobby Sees It.

It’s blind biking, so hold onto your chairs; we're in for a bumpy ride.
Original air date: 1-5-10

Beyond the IEP

2010-10-29T10:13:00.000-07:00

(Individualized Educational Program)

Listen

Cynthia Molina and Christine Zimmerman, mother-advocates for students with disabilities in Oakland's Programs for Exceptional Children talks with cohosts Eddie Ytuarte and Leah Gardner. What is it in the institutional culture that helps students succeed beyond the Independent Educational Program.

With a commentary by Shelley Berman on the upcoming elections.

KPFA

Photo: Three young children face a teacher with her hands up, palms out.
Their faces reflect excitement, withdrawal & caution.
Courtesy Furman University Libraries, Special Education Resources.

Original air date: 10-29-10

Breaking the Ice

2010-10-13T20:27:00.000-07:00

LISTEN 29 min

Photo of dancer, Gregory Jordan.

After hundreds of years of stigma and exclusion, people with cognitive disabilities are out and about in our communities. Many work at jobs with able-bodied co-workers and live independently, or in small group homes, in many neighborhoods.

We visit a class where people with limited speech are learning to choreograph and dance to Taiko drumming from a couple of grandmothers. Then, we talk to Josh Elwood, our sound engineer, who is both a client and board member of the non-profit, Clausen House.

Photo: Gregory J. poised with right arm up, finger pointing, toes turned out.

More guests: Gregory Jordan, Janis Danker, Christy Reed, Peter Brooks, &
Jessica Stiebenmorgen
from Clausen House.
Annie Ong of Heiwa Taiko Drums.
Eric Kupers & Mantra Plonsey of Dandelion Dancetheater.

Photo L to R. Josh Elwood, Adrienne Lauby (sound tech) Gregory Jordan.

Interviews by Josh Elwood, Shelley Berman & Adrienne Lauby.

Hosted by Raphaella Bennin.

Photos By Shelley Berman

Photo: Members of Hawa, Drumming

L. Vera Leo, Center, Annie Ong Class dancing as seen thro wall mirrors.

Watch the dancer's most recent performance: "Speed"

Pushing Limits Radio Joins Facebook

2010-09-22T11:22:00.000-07:00

Pushing Limits has joined facebook with an official fanpage!

If you are a member of facebook, please join the conversation by "like"ing our page. From there, you let us know about topics Pushing Limits Radio should cover in future shows, or share your thoughts about topics presented on previous shows. We would love to hear from you and, this way, you will be sharing your thoughts with the Pushing Limits listener community as well!

You can find us by clicking here, clicking on the "like" button below, or by searching for "Pushing Limits Radio (KPFA)" on facebook.com.

We're looking forward to hearing from you!

Community Voices

2010-09-17T18:25:00.000-07:00

Listen 29 min
Do candidates running for state offices have a disability rights agenda or awareness? We polled candidates for governor. The Peace and Freedom Party and Libertarian Party responded.

People in substance abuse programs showed up in numbers at Wednesday's large protest of the California budget proposals.
Photo: 28 people holding 18 boxes of letters inside the state capital building.
They brought the 4,000 letters defending the Drug Medi-Cal program, the result of a massive street mobilization by addicts from the Oasis Community Clinic in Oakland. Sacramento addicts also joined the protest.

Are you a danger to people with disabilities when you are driving? Check your habits here.

And, the ongoing mobilization against P.G. & E.'s so-called Smart Meters shuts down a warehouse in Santa Cruz County.

http://stopsmartmeters.org

Eddie Ytuarte and Adrienne Lauby host.

Photo: Gathering signatures for drug treatment programs. Three women on street corner.

Gustopo Tactics Against IHSS Users & Workers

2010-09-02T13:59:00.000-07:00

Modesto Bee article

Turning the Ship of State

2010-09-01T20:15:00.000-07:00

LISTEN 28 min

Policy vs Protest. Insiders vs Outsiders.
(R to L) Sunaura Taylor, Jessica Lehman, Marianna Ruybalid surrounded by police. Photo by Jameson Ligni

We look at this centuries-old debate as it plays out for people with disabilities in California's budget debate.

The Supreme Court’s Olmstead decision ruled that people with disabilities have a right to remain in their communities, even if they need government services to do it. But, how can people with disabilities manifest the promise of Olmstead while slogging through the stagnant politics of Sacramento?

Guests:
Mary Lou Breslin, long time disability activist, senior policy analyst & co-founder of the Disability Education and Defense Fund (DREDF).

Mary Lou Breslin as a young activist

Bancroft Library Photo

Sunaura Taylor, one of 23 arrested for blocking a street in front of the state capital two weeks ago. Sunaura is a member of Communities United in Defense of Olmstead (CUIDO), the group who organized the Arnieville protest.

Adrienne Lauby and Eddie Ytuarte host.

Musicians Living with a Disability

2010-08-20T19:15:00.000-07:00

Listen 28 min

A sampling of musicians who found success as they lived with significant disabilities. From pop star Michael Bolton and his profound deafness in one ear to a one-arm drummer with the hard rock band, Def Leppard...

Chick Webb. At a young age, he contracted spinal tuberculosis that left him with a hunchback and little use of his legs.

Rick Allen. Def Leppard drummer, one arm amputee.

Rick Allen, smiling, with one arm in the air. Photo by Matt Becker

Michael Bolton. Vocalist, deaf in one ear.

Jeff Healey. The Jeff Healey Band. Lost his sight to retinoblastoma, a rare cancer of the eyes.

Derek Pavaricini, autistic prodigy, Pianist.

Susannah McCorkle Jazz & pop vocalist who killed herself because of her mental illness.

Leah Gardner and Eddie Ytuarte spin the tunes and talk about the artists.

Twenty Years of the ADA

2010-08-06T16:22:00.000-07:00

Listen (28 min)
Marilyn Golden, policy analyst for Disability Rights
Education & Defense Fund, discusses the merits
and history of the Americans with Disabilities Act.

People in the U.S. are celebrating the 20th anniversary
of the ADA.

Has this law significantly moved the disability rights
movement forward?
Are there some things that cannot be achieved with
the ADA?

Hosted by Eddie Ytuarte and Leah Gardner.

20th Anniversary of the ADA

2010-07-26T09:49:00.000-07:00

By Adrienne Lauby

A few days ago, I heard of a 90 year old woman who refused an IV line because the doctor said she would have to go into a hospital if she had it put in. She wanted to spend her last days at home.

What the...?!?!

I know, and many of you know, that this is a non-issue. There are ways for people who need I.V. treatments to have them at their homes.

A few days ago, I heard that a local homeless advocate wanted to set up a campsite, so those who are homeless would have another choice than sleeping in doorways or sidewalks. But the city didn't think it would work.

What the...?!?!

The L.A. County jail continues to be the largest institution for those with emotional disabilities in the nation. The county where I live, one of the richest in the U.S., has no in-patient treatment for people with emotional disabilities.

What the...?!?!

Twenty years after the Americans with Disabilities Act (ADA) was passed, problems like this, problems with common sense solutions, continue to fester.

ADAPT is a national group with a history of nonviolent direct action group dedicated to bringing people with disabilities out of institutions and into the community. They said it very well:

"...knowing that you are protected against discrimination in employment means nothing when the hub of your life is a bedroom you share with a stranger. Knowing that buildings and public accommodations are accessible means nothing when the facility staff won't let you leave; and even having access to lifts on buses - as dear to our hearts as that is - means nothing when you cannot afford to go anywhere on the allowance that is left over after the institution has taken its share of your money."

The ADA is not a failure. The ADA brought us accessible buildings, bathrooms, sidewalks, buses. It gave many children and young adults the opportunity for education, travel and social lives. Despite the business whining that ADA access is too burdensome for their bottom line, the ADA brought people with canes, sign language, protective masks and wheelchairs into our public spaces. Picture by Neil Marcus. The text reads, "Disability is not a brave struggle or courage in the face of adversity; Disability is an Art. It's an ingenious way to live." The image is a pen & ink drawing of a human and a wheelchair.

I celebrate this anniversary with a re-dedication.

Freedom for people with disabilities is not about bringing more workers into a capitalist system. Freedom is about dignity and membership in the human community. I dedicate myself to the fight for this freedom.

Today, people who could live in the community are forced into for-profit institutions because society believes their physical condition is too troublesome to care for individually. People with mental and emotional disabilities are offered few treatment options and, if they end up on the street, their final destination is often jail.

We have no choice. We must stand with those who are not yet among the free.

Morningstar Vancil

2010-07-15T09:09:00.000-07:00

LISTEN (28 min)

Morningstar Vancil photo courtesy Fabled Asp

To celebrate 2010, The Year of Honoring Lesbians With Disabilities, Morningstar Vancil speaks candidly about her life as a lesbian stage-3 cancer survivor.

Vancil is a butch activist dyke of mixed race who lives with multiple disabilities. She’s traveled with a burlesque show and carried the banner of gay rights into the national American Cancer Society. Morningstar Vancil confronts discrimination and physical difficulties with joy and self respect.

Also, Marion Abdullah, co-chair of the Fabled Asp project, the organization responsible for the Year of Honoring Lesbians with Disabilities.

Hosted by Raphaella Bennin.

Fabled Asp

The 20^th Anniversary of the Americans with Disabi lities Act

July 26^th is the 20^th Anniversary of the American's with Disabilities Act and we’re celebrating!

Photo of vets, man in wheelchair in front

Don't miss the

First Annual West Coast Disability Pride Parade and Festival next Saturday, July 24^th in San Jose. The festival headlines Tristian Thunderbolt a Native American Deaf entertainer and the Disability Pride Quilt will be on display. To find out more: go to the Silicon Valley Independent Living Center at www.svilc.org

For the anniversary itself, a week from Monday, Hayward will celebrate from 4-7 pm in the Hayward City Hall Plaza with Mary Lou Breslin speaking, and the City of San Francisco celebrates in the North Light Court of their own City Hall. In SF, there’s speeches by Judy Hueman, Tom Ammiano and others; another chance to see the Disability Pride Quilt and even make your own square. And a Superfest screening in the SF Library. For more information check out www.itsnormal.org

Arnieville Protest of CA Budget Cuts

2010-07-09T19:38:00.000-07:00

Listen (28 min)

At the
Arnieville Tent City
people with disabilities
and seniors engage
in a living protest
against the continued
cuts in California's
human services.

Two weeks long
and counting...

Photo of Bruce Allison and Jon Reed
by Helen Walsh, Diverse Disability Media

Guests: Marg Hall and Jana Overbo from Arnieville,
Scott Graves from the California Budget Project

Hosts: Eddie Ytuarte and Leah Gardner

Photo: Large banner reads "Our Homes Not Nursing Homes!"

original air date: 7-2-10

Berkeley's Emergency Services for People with Disabilities

2010-06-16T15:06:00.000-07:00

Listen 28 min
It's tax-payer supported & wildly innovative.
It gets people out of trouble. It saves lives.

It's also a nice chunk of money in a community where money is as scarce as a trouble-free wheelchair.

We talk to Bonnie MacFadyen, Executive Director of Easy Does It (EDI) and Yomi Wronge, Executive Director of the Center for Independent Living (CIL) in Berkeley. Both have made proposals for the almost-a-million dollar city contract.

Eddie Ytuarte &
Adrienne Lauby host.

Ayanna Keeton, EDI Services Coordinator.

Other photos: Electric wheelchair abandoned at curb, an emergency attendant helps a man to eat and wheelchair repair shop. All courtesy EDI
Original Air Date: June 18, 2010

When Home Is (or could be) an Institution

2010-06-02T18:32:00.000-07:00

Listen

A discussion of the film, Far from Home,
with director Elissa Moon showing at Berkeley's Superfest.
Saturday, June 5, 2:10 pm
Gaia Arts Center, 2120 Allston Way @ Shattuck,
Berkeley, CA,

A documentary focused on the political and personal realities of living in San Francisco's Laguna Honda, the largest nursing home in the U.S. Laguna Honda houses thousands of people living with severe physical disabilities.

Plus, coverage of the ArnieVille Sleep Out, a protest of California's proposed budget cuts, cuts that could leave many seniors and persons with disabilities homeless or institutionalized. With Syndy Sharp, Hannah Jo Karpilow, Thomas & Nicholas McMullan, & Marissa Shaw.

After a cold night, ArnieVille residents soak in some rays.
Photo: Dan McMullan

We've all heard the adage, home sweet home.
It's that place we long for when we've been away where we seek rest, recreation and a break from the outside world.
(Nicholas & Thomas McMullan, photo by their dad, Dan)
Leah Gardner and Eddie Ytuarte ask the question:

"What does home mean for people who live with disabilities?"

Original Air Date: June 4, 2010

The ArnieVille Sleep Out

2010-05-22T09:56:00.000-07:00

An open-air open-ended protest has begun in Berkeley in an effort to stop the juggernaut of draconian cuts to California’s In Home Supportive Services (IHSS) and Medi-Cal programs. The IHSS program is a model program that pays caregivers to help elderly and disabled persons in their homes rather than subsidizing expensive nursing home care.

On the traffic island on Adeline Street at Russell St. Berkeley

JOIN: FaceBook for Arnold's Orphans

KPFA News Story Start at 4:59

AB 2072 & the Battle for ASL (transcript)

2010-05-05T13:19:00.001-07:00

Listen, 29 min.

OPPOSE AB 2072

Forum Poster

Welcome to Pushing Limits, I’m Adrienne Lauby, the Asthmatic Amazon.

When I was at my sickest and most isolated, I depended on my radio and KPFA for companionship. I don’t think it’s an overstatement that KPFA saved my life. Today, we talk to people who are deaf and don’t share my addiction to radio.

I’m embarrassed to say that, until this week, we’ve never had a written transcript of our show and, to be honest, making a transcript has been time consuming and difficult. I don’t know when I’ll do it again.

We need your help. All of us. I need to find a way to transcribe future programs and others to do the work. The deaf community needs help with a monster in the making called AB 2072 in the California legislature.

This is what 15-year-old Conrad Baer has to say:

CONRAD BAER: We need to fight for our rights and our language. We love this and we cherish the deaf community—all of it.

The voice is that of ASL interpreter Loretta Cappa, who said that ASL, not English, was also her first language. Our other interpreter is Daniel Vilhauer.

Shelley Berman and I went to the “Deafhood Forum” at DCARA, the Deaf Counseling, Advocacy & Referral Agency in San Leandro last Friday night. Like us, last Friday, for the next half hour you’ll become a hearing person in a deaf setting. You can find a transcript of the program on our blog at Pushinglimits@blogspot.com

Here’s 15-year-old Conrad Baer again:

CONRAD BAER: I’m deaf. I want to make sure that I keep my language and my future and my own children, my friends, my family. All of that.

I cherish my language. If you get rid of that, I mean, I can’t talk or anything.

My parents are both deaf. My grandparents, my whole family, is deaf so they taught me ASL. I grew up signing. I had full communication with ASL

ASL is my language and the deaf community, the deaf schools, where we understand each other, we’re like a big family.

ADRIENNE LAUBY: When Conrad Baer makes the ASL sign for “deaf,” he includes a gesture toward his ear. Butch Zein, Organizing Chair of the Deafhood Foundation, used this example in his presentation to show how the concept of hearing, or not hearing, is part of the traditional definition of the word ‘deaf’. Here’s Butch with that discussion.

BUTCH ZEIN: So now we all know what that sign means, ‘deaf’. What I want to know is how can you define that without the use of ‘hearing’? Alright?

PARTICIPANT: Cultural implications.

BUTCH ZEIN: Terrific.

PARTICIPANT: Signing. ASL.

Butch Zein photo

PARTICIPANT: Visual folks.

BUTCH ZEIN: Right.

PARTICIPANT: Visual modalities.

PARTICIPANT: Visual people.

BUTCH ZEIN: Yes

PARTICIPANT: Culture, language.

PARTICIPANT: We have a community.

BUTCH ZEIN: Terrific. Yes.

PARTICIPANT: Deaf ethnicity

BUTCH ZEIN: Yes

I had been traveling around recently and I asked the same question. There was a tendency for the groups to struggle to come up with that.
We were People of the Eye or whatever.

We don't have a great definition, so that’s something that we haven't really ingrained in the deaf community yet. That’s what we’re here to do tonight.

This is what Patty Ladd says deafhood is, ‘The process to decolonize our mind, body, and spirit from colonialism.’

ADRIENNE LAUBY: Here’s another definition of deaf, from someone later in the discussion:

PARTICIPANT: Deafhood is the total sum of all positive meanings of deaf -- past, present, and future. The largest meaning of what deaf people have been, are, and can be.

ADRIENNE LAUBY: There’s a serious attack coming down on Conrad Baer’s language. A bill called AB 2072 is already halfway to adoption by the California legislature. It’s a simple law and the deaf community says it’s very dangerous .

When a newborn baby is screened and found to be deaf or hard of hearing, the parents are given information about what to do. In the past, this information came from non-profit government or community-based groups. If AB 2072 is passed, that will change. The information will come from an audiologist or medical person instead.

Tanja Bierschneider of DCARA talks about the early warnings that this bill spelled trouble:

TANJA BIERSCHNEIDER: Deaf Professionals, parents of deaf children, and the deaf community, were not involved in the development of this bill at all.

Tanja Bierschneider Photo

ADRIENNE LAUBY: Deaf community members met with the bill’s sponsor, Senator Mendoza, to add their perspective. A committee member tells the story:

COMMITTEE MEMBER: Once we objected to what we had seen, Tony Mendoza said, “Oh, we’re willing to work with you.”

And we said, “Why don't we wait a couple weeks for the vote? Let’s not do this soon. Let’s wait. There was rejection of that. They said, “Oh, well, we’ll go forward with the vote. We can change the verbiage of the bill later.”

That's, I think, when we all certainly realized what the real opinion was of everyone: Oh sure, we'll have the meeting with the deaf folks. Check it off the list. Done and done! Now, let’s move forward with the plan.

ADRIENNE LAUBY: There is one big problem with this bill. Parents of a newborn with a diagnosis of deaf or hard of hearing will be sent to an audiologist or other medical professional for advice. Jim Brune, executive director of DCARA:

JIM BRUNE: We want to make sure that the parents are fully informed. We want to make sure that they recognize which of these options work and which don’t. Cochlear implants are not 100% medically safe. Oral spoken language method of education is not 100% effective. Babies will benefit from the inheritance of language and culture from deaf people. Period.

Jim Brune Photo

ADRIENNE LAUBY: Deaf people fear that parents will get skewed information from audiologists and medical people. This fear was borne out by a brochure which the bill’s supporters have already prepared.

JIM BRUNE: So, we had a brochure that was not developed in California, that's certainly an issue. It was an organization, a marketing organization, if you will. That brochure was called “Communicate with Your Child by Letting Them Hear.”

The front, of course, had a beautiful picture of a mother and her baby. It said: If you're a person who had a deaf child who don't know what to do and would have these, "four options."

Total communication had two sentences. That's speaking and signing at the same time, that’s what they call total communication. It’s not communication by any standard. Cued speech had it’s own little blurb. The oral method. There was a lot of information about the oral method.

Of course, the most important was saved for last. It was about the cochlear implant. It was essentially an advertisement! Obviously, quite a powerful message.

There was very little information regarding deaf culture and deaf schools. The question became, “Where was the ASL information?”

There was a lot positive information regarding these other options.

What would happen is these pamphlets would be given to audiologists who would then pass them on to parents of deaf children. What you have to imagine is a person who has a deaf child might say, “Oh, this looks great. Let’s make a decision based on this brochure.”

Marlee Maitlin and Wm. Hurt in movie Children of a Lesser God

ADRIENNE LAUBY: David Eberwein:

DAVID EBERWEIN: What we want to make sure is that most parents know that cochlear implants is actually invasive surgery. That, necessarily wasn’t given in that brochure.

And, again, most of the folks that are funding this and supporting this bill are not deaf themselves. Very little deaf input.

ADRIENNE LAUBY: Tanja Bierschneider again:

TANJA BIERSCHNEIDER: There is confusion about cochlear implants, about cued speech systems, about total communication. That they are equivalent to American Sign Language.

American Sign Language is a language of its own with syntax, with grammar, with history, just like any spoken language such as Spanish, such as French. A cochlear implant or a hearing aid, those are tools. They are not languages. That is confused, that there’s overlap, that this can be as good as the other.

Deaf and hard of hearing children definitely should have options but ASL is something that is fundamental to the Deaf community. Language acquisition, reading and writing, communication and exposure to the outside world, that is definitely important.

Deaf professionals, parents of deaf children (or hard of hearing children, I’d definitely like to include them), deaf community organization’s involvement is key. They are the experts of the deaf life experience.

ADRIENNE LAUBY: Rory Osbrink’s parents followed advice from audiologists and medical people. He had a cochlear implant as a young child. He joins the discussion.

RORY OSBRINK: A person, like myself, who’s had a cochlear implant cannot have an MRI. They cannot do an MRI on a person with cochlear implant and that's a serious downfall.

Now an MRI is magnetic. I had a bicycle accident and I said, you know what, tell them again, just make sure. They said, “Oh well, they’re just doing the legs,” and then the doctor came in and said, “No. If they did that, the magnet would literally suck the MRI from his brain and try to pull it out. It would rip it out of his brain.”

So, I thought about having it removed but it would cost me $35,000. Let's see. I can have it removed or I can put a down payment on a house. Which would you choose?

ADRIENNE LAUBY: You’re tuned to Pushing Limits, KPFA’s disability program. You’re listening to folks from the deaf community who joined together last week at a Deafhood Forum, organized to fight AB 2072 and talk about deaf culture.

That was Rory Osbrink who later told me he was the 2nd child in the U.S. to get a cochlear implant. Here’s more of his story. Daniel Vilhauer is the interpreter.

ADRIENNE LAUBY: …You were the 2nd child in the U.S?

Two ASL learners, Ohio State University

RORY OSBRINK: That’s correct. Yes, I was. So, I definitely have a lot of experience with the issues related to that. I've have done traveling presentations.

I’ve actually collected money for research for the dispersion of cochlear implants and the oralist method. I was shown as a role model for deaf children. I've suffered from it as well.

The issue was, I was only reading and writing at a third grade level though I was 11 years old at the time. When I learned sign language I went on to college and afterward. In one year. It completely changed my life.

Now I definitely support bilingualism and certainly American Sign Language in English when it comes to deaf children. I decided to stop using my cochlear implant at seventeen years old. I consider myself a cochlear implant survivor.

I have seen a lot of children with the same story that I have because their parents were not aware of the full implications. Let me give you one example. It actually just happened to me.

I was in a bicycle accident and I could not get an MRI because of this cochlear implant -- which is still present. It was free to put a cochlear implant in my head but it costs $35,000 to remove it. To remove a cochlear implant mechanism from my skull is called ‘cosmetic surgery’. Now, if I wanted to go in and get another cochlear implant, lo and behold, it would be free.

So now we're starting to see where the motivation behind all of this is. It’s very, very interesting. Cochlear implants and oralism have a very strong, almost unbreakable bond.

I started to learn ASL at 11. Previously I was a cochlear implant person. And at 11 years old I jumped from a third-grade level to a post-collegiate reading level. And that is why it's so important. I definitely support language development.

Now my speech also improved with ASL because of fully functional language. I took Spanish classes. I graduated with advanced-placement Spanish testing all from ASL. Language is the key and that is really what we're trying to say. American Sign Language can lead to success with second languages, spoken languages, reading.

It is really about the natural visual language of deaf people. That's where it all starts. It is part and parcel with the community. Obviously, our language carries a lot value and a lot of weight in the community.

http://www.sweethoney.com/about/asl.php

ADRIENNE LAUBY: A lot of times in the media this is portrayed as ‘do you want your child to be part of the deaf community?’ Or, ‘do you want them to be part of hearing community?’ How do you respond to that kind of thinking, because the hearing community, heck, they control all the wealth.

RORY OSBRINK: Well, often people who are involved and have followed that paradigm are not confident that their children can be successful. Their children will not be able to socialize with the hearing community.

Most of those cases (and research proves this) become isolated adults. They have the work. They go home. They watch television. And, the cycle begins anew the next day. They do not have what we consider full life. That is a simple reality. It's hard because they cannot find common ground with other people.

Now with the deaf community we have people, in fact, who swing through both communities. They work. They socialize. It doesn't matter who they are with -- hearing and deaf people.

For instance, with me involved with bicycling. I do it for fun. There are hearing people there, of course. But, I'm confident. I know what I can do. I know how to find different ways to communicate it they don’t understand me. I have built in solutions and that is something that is irreplaceable because it comes from my experience as a member of the deaf community.

ASL sign: I Love You

ADRIENNE LAUBY: What was wrong with the cochlear implant that you could not advance educationally?

RORY OSBRINK: Suppose you have a television. It’s got a hundred channels, okay? But you have no remote control. You are watching the same thing over and over again. And sometimes the TV you see is understandable, and sometimes it isn't, and then it leaves. Eventually, you will sort of figure out what's happening but you won't get the nuances.

That's what happened with me. In recess and social time, when I was one-on-one with a friend, it was fine. When I was in a group, the more people we had the worse it got. The emotional development, dealing with the opposite sex, was seriously limited because of that.

That is the aspect of cochlear implants that isn't told. Those stories aren't told. And again, we are talking about children here implanted at five. And you know, with their one-on-one relationship with Mom, terrific. But as they move on, the problems start to show up.

ADRIENNE LAUBY: You need a language before you're five. If your mother isn't signing to you... There's always the language of touch, but that only goes so far.

from slowdownchief 'Mom's cochlear implant scar'

RORY OSBRINK: Precisely!
Not only that,
but cochlear implant and,
of course, oralism, there's a lot of therapy, a lot of parent involvement, a lot of repetition. So the success rate here, when you see these negative actors stacked against it, are pretty limited.

With American Sign Language it is all there and it doesn't limit your academic success. Everything is present.

ADRIENNE LAUBY: Let’s go back to Jim Brune for more about AB 2072.

JIM BRUNE: Many folks come in and say, “I don’t understand. What is the big deal with this? ASL is listed there. I don't see what the problem is. Parents have options. You know, why would I oppose something like that?”

I would like to clarify that. Yes, we do have ASL listed in the options but what we have to remember here is we’re dealing with two philosophies. We have English/spoken language, ASL. Total communication, that is not a language, that is a philosophy itself. Cued speech is a philosophy rather than a true language.

From: face me, i read lips

We’re sure that not all parents would understand the difference with that and that’s why we’re opposed to it. We want to make sure that the parents are fully informed. We want to make sure that they recognize which of these options work and which don’t.

We have to figure the appropriateness of the information that’s being given, the funding that’s involved. We have to view this bill in its gestalt and, then when you add the no-cost system, it fails utterly.

ADRIENNE LAUBY: Right now, the California legislature does not want programs that cost money. So, the sponsors of AB 2072 agreed that the information for parents would not cost the taxpayer’s one thin dime. David Eberwein explains:

DAVID EBERWEIN: Where is this money coming from? We should have a problem with where these funds are coming from. These are coming from audiologists, from oralist programs. What has happened is that these companies who are not particularly aligned with the deaf community are looking to fund these no-cost systems.

Again these companies have agreed that they will take care of all this but because of this financial obligation they’ve agreed to take up they now have “control” over the government by having exceptional input into what goes into the bill. Again, all this leads to profit. Profit that goes directly against the deaf community.

Virginia State School for the Deaf, Hampton VA
mid-19oos, The Black ASL Project

ADRIENNE LAUBY:

Shelley Berman asked someone
in the
crowd for his opinion.

PHILIP SMITH: My name is Philip. It's signed like this. My last name is Smith.

When I read about a cochlear implant, I don't want it. They leave the ugly scars, and it’s dangerous and scary. ASL is so much easier. The cochlear implant is internal. It's invasive. They cut into your brain. ASL is out here is beautiful and I love being deaf. Like my girlfriend, she’s hearing.

SHELLEY BERMAN: What's your name?

LINDSEY: Lindsey

SHELLEY BERMAN: And you’re Philip’s girlfriend?

LINDSEY: Yes. He's a wonderful guy.

SHELLEY BERMAN: What can you do as a hearing person?

LINDSEY: As a hearing person, I can listen to what the deaf community has to say, what they feel about it, and respond to their decision.

If they feel it's not up to the hearing person to decide if newborn babies need a cochlear implant, then that probably is a very good decision, to say, “Hey look, this isn't right.” If the deaf community says it's not okay, I'm going to go with the deaf community. They know more about how it is to be in a deaf community. How it is to be deaf.

ADRIENNE LAUBY: Philip Smith again.

PHILIP SMITH: When I was born I was hearing first, and I lost my hearing and became deaf. I grew up here in Oakland and I started noticing deaf people all over. I grew up with my family and my family does not sign at all. They thought it was more important to teach me to be oral and to talk. I learned to sign but my mother thought that because if I signed …she wanted to know about my education… so she kept putting me in different schools all the time. Finally I decided that I didn't want to talk anymore. I told her I just wanted to sign.

As I was growing up I wanted to lead people in the community. I started realizing there was community deaf meetings and things. I got involved with NBDA, National Black Deaf Advocates, and I was really excited about that. I started to learn a lot more there, that I really did want to lead. And, I got involved here with DCARA.

You know I look out and it's like, “Wow, it's mighty white.” They started last year. They had a woman who asked us about wanting more people of color and more diversity. So we are working hard for Black History Month, which was last February. A lot of people showed up and we had a lot of diversity and it was packed. I mean, it was really packed. So we are really happy with that. So now, people of color, I'm trying to let them know how important it is for them to get involved. I mean deaf culture’s a family and that's what matters.

ADRIENNE LAUBY: Powerful forces threaten the deaf community, its language and institutions. Butch Zein explains:

BUTCH ZEIN: Now in Australia there is a class of people, the native people, the dark-skinned people of Australia, aborigines. They have suffered from the same colonialism. What has happened to them is their cultures become dispersed and they become assimilated into the dominant culture, to the white culture of Australia. What we're fearing is that the same effect will be happening with deaf folks here in America. With assimilation might come more and more rejection of sign language.

Only 6% of teachers who teach deaf folks are classified bilingual. Many are completely sign language illiterate.

ADRIENNE LAUBY: We have an interpreter change, from Daniel to Loretta.

BUTCH ZEIN: Most foundations when they look at deafness focus strictly on the beautiful ear: “Just look at it. Isn’t it beautiful? It’s deafness from a medical perspective. How to heal you? How to cure you. How to rescue you. How do you assimilate the deaf person into the hearing world?”

book cover
Understanding Deaf Culture
by Paddy Ladd

And that’s what they are trying to do. That’s their perspective. Their goal is to stop deafness.

The people who make cochlear implants, that company have different cochlear implants in production and, they’re making a huge amount of money off such a small percentage of people. The bottom line is about keeping investors happy. And paying the lobbyists and everything else so they can make money. Think about it from that day look at it from that approach

All of the oral research is based on speech only. Once they can talk, they call that a success. The research is not based on reading. It’s just from talking. Who verbally speaks better?
So they say 90%, 99% success rate, but it’s not based on real life situations and what the people are facing. What about their emotional status? Do they have critical thinking abilities? Yes, they can talk but are they like a parrot? Do they have communication abilities?

I’m sorry, I insulted a parrot. I am so sorry to you parrot lovers out there.

Like Gigi’s example, they went to one conference and they were saying, “Oh, it’s a 70% success rate.” And then she raised her hand and she got up and said, ”Those statistics is awful high with oralism. How many subjects are involved in this?”

And they went, “Ah hummmm ah, well, ah -- six. Six people”

And they’re saying, “Oh, seventy percent.” There are six individuals. That is not a representation of America.

[Missing line by Adrienne: Butch looked at the assets of non-profits who fund raise to help deaf people, although they don't encourage ASL learning.]

BUTCH ZEIN: Oh, Deaf Research Foundation. Oh, how sweet? They have earned $1 million every year in assets. Now, you look at Starkey Hearing Foundation, 1.35 million in assets, and there’s Deaf Kids Talk, $3.5 million in assets.

Now you guys have heard of John Tracy Clinic right? That's in Los Angeles County. Remember Spencer Tracy? I don't know. He used to be an actor. I admit I don't know who he is either. For the older folks here, you might know who he is. Anyway he opened this clinic and he has $21.2 million. CID, which is the Central Institute for the Deaf, they have $47 million in assets. Wow!

ADRIENNE LAUBY: Before we go, here’s two more cultural developments to chew on, courtesy of Butch Zein.

BUTCH ZEIN: In American today, we encourage hearing babies to learn to sign but yet they're telling the deaf kids, the deaf babies, not to sign. Why? Wow, isn’t that sad?

Not only that but a lot of community colleges and universities now have American Sign Language programs. It’s been a 432% increase in American Sign Language classes and they don't even have classes for their own deaf students, for these kids. What's wrong with this picture?
Really, we face these issues every day and we just highlight a few of them.

ADRIENNE LAUBY: A huge thanks to Tanja Bierschneider of DCARA for making this program possible. Thanks to all the deaf folks who trusted us and talked to us. Thank you to our professional and attentive ASL interpreters. Thanks also to Jean Stewart, Robert Miller, Doyle Saylor, Clay Leander, Jan Santos, The Deaf Foundation and DCARA, our engineers, Oscar Hernandez and Josh Elwood, my co-producer, Shelley Berman, and the entire Pushing Limits gang. You can find a transcript of the program and a list of deaf resources at our blog, pushinglimitsradio at blogspot.com.

Pushing Limits is stepping aside for a few weeks to make room for KPFA to raise some money. It seems like a good time to say thank you.

Truly, those of you in the disability community, and those of you who are our allies, are the people who keep Pushing Limits pushing forward. You are our guests. You do the community work we highlight. You get up every day and face the difficulties of living with a disability. Thank you.

We bring you this program to make some days go easier and we hope you enjoy it. We need your financial help too. Right now, KPFA is collecting pledges of $200 or more for challenge grants. Could you do that? We would appreciate it. You can find out more about this project at KPFA.org.

Pushing Limits is produced by a collective of people with disabilities. We are open to new members. Especially if you want to be in charge of transcribing our future shows….PLEASE contact us at (510) 848-6767 ext 636 or by e-mail at pushinglimits at kpfa.org. When the fund drive begins, please call. Become a member of the radio station that brings you this program.

I’m Adrienne Lauby. Thank you for listening.

air date:
May 7, 2010

Finished

AB 2072 and the Battle for ASL

2010-05-03T11:47:00.000-07:00

Listen 29 min.
Transcript
Passion, strategy, big money opponents, race issues, counter narrative discourse, and children. The Deafhood Forum was nothing if not stimulating. Challenge your ear-to-mind connection.

GUESTS:
--Butch Zein, Executive Director of the Deafhood Foundation,

--Jim Brune and Tanja Bierschneider of DCARA,

--Rory Ostrink, the 2nd person to have a cochlear implant in the U.S.,

Photo courtesy of Tanja Bierschneider

--David Eberwein, Conrad Baer, Philip Smith, and many others.

Shelley Berman and Adrienne Lauby join a meeting organized to oppose the fiendish AB 2072 and learn the context of that fight. This law would send parents of newborn deaf and hard-of-hearing children down a path to partial fixes, medical intervention and adult isolation. The deaf community shines a light on the lesser-known road of ASL where adults communicate with fluency and affection.

More about AB 2072

DEAFHOOD RESOURCE LIST

Virginia State School for the Deaf, Hampton VA
mid-19oos, The Black ASL Project

Air date: May 7, 2010

Deafhood Resource List

2010-05-02T11:13:00.000-07:00

Most of this list comes from the Deafhood Foundation

book cover

Understanding Deaf Culture: In Search of Deafhood
by Paddy Ladd

On-line Film

"Re-defining Deaf" logo

Highly recommended!

Re-Defining Deaf - www.mosinternational.com

Video and DVDs

The Preservation of American Sign Language. [Videotape]. Sign Media, Inc. 1997. 77 minutes.

Audism Unveiled. [DVD]. DawnSignPress. 2008. 57 minutes.

The LACD Story. [Videotape]. DeBee Communications, Inc. 1993. 30 minutes.

The Treasure Poems by Ela Mae Lentz. [Videotape]. Inmotion Press. 1995. 60 minutes.

Radio

AB 2072 and the Battle for ASL, Pushing Limits: KPFA's disability program. May 7, 2010

Recommended Web Sites

Dr. Don G’s Deafhood Discourses - www.deafhooddiscourses.com

Deafhood Workshops - www.deafhood.us

Joey Baer on Deafhood - www.joeybaer.com

Orange Brown Coalition - orangebrownrit.blogspot.com

Stone Deaf Play - www.stonedeafplay.com

Deafhood on Wiki - en.wikipedia.org/wiki/Deafhood

Deaf Bilingual Coaliation - www.dbcusa.org

Audism Freedom America - audismfreeamerica.blogspot.com

Books

See Paddy Ladd’s book, Understanding Deaf Culture: In Search of Deafhood above.

Bauman, D. H. (Ed.) (2008). Open your eyes: Deaf studies talking. Minneapolis, MN: University of Minnesota Press.

Branson, J. & Miller, D. (2002). Damned for their difference: The cultural construction of deaf people as disabled. Washington, DC: Gallaudet University Press.

Breivik, J-K. (2005). Deaf identities in the making: Local lives, transnational connections. Washington, DC: Gallaudet University Press.

Freire, P. (1970). Pedagogy of the oppressed. New York, NY: Seabury Press.

Gladwell, M. (2000). The tipping point: How little things can make a big difference. New York, NY: Back Bay Books. hooks, b. (2003).

Rock my soul: Black people and self-esteem. New York, NY: Atria Books.

Jankowski, K. (1997). Deaf empowerment: Emergence, struggle, & rhetoric. Washington D.C.: Gallaudet University Press.

Lane, H. (Ed.) (2006). The deaf experience: Classics in language and education. Washington, DC: Gallaudet University Press.

Lane, H. (1992). The mask of benevolence: Disabling the deaf community. New York, NY: Alfred A. Knopf.

Lane, H., Hoffmeister, R. & Bahan, B. (1996). A journey into the deaf-world. San Diego, CA: DawnSignPress. McKee, R. (2001).

People of the Eye: Stories from the Deaf World. Wellington, New Zealand: Bridget Williams Books.

Memmi, A. (1965). The colonizer and the colonized. Boston, MA: Beacon Press.

Padden, C. & Humphries, T. (1988). Deaf in America: Voices from a culture. Cambridge, MA: Harvard University Press.

Van Cleve, J. V. & Crouch, B. A. (1989). A place of their own: Creating the deaf community in America. Washington, DC: Gallaudet University Press.

Westen, D. (2007) The political brain: The role of emotion in deciding the fate of the nation. New York, NY: Public Affairs Books.

Wrigley, O. (1996). The politics of deafness. Washington, D.C.: Gallaudet University Press.

Among Ourselves

2010-04-28T12:57:00.000-07:00

LISTEN 29 min

What do people with disabilities talk about when no able-bodied person is in the room?

Starring Kris Yates & Mary Ann (Tidwell) Boussard

A scene from the original play, Blind Man’s Bluff: Our heroine Geri interviews for a job at the Independent Living Center.

Also starring Doyle Saylor, Leah Gardner, Jan Santos & Patty Nash.

From the memoir of the same name by Geri Taekens.

---

"I wanted to be the innkeeper where people could come and sit by the fire and tell stories."

Stephanie Sugars talks about a community of 200-350 people who live with Peutz-Jeghers Syndrome, a rare genetic disease. She facilitates the on-line group.

Photo courtesy Stephanie Sugars

The Peutz-Jeghers Syndrome E-group
Hosted by ACOR

Stephanie's peutz-jeaghers syndrome Resource List

Original air date: 4-10-10

Blind Man's Bluff

2010-04-13T19:12:00.000-07:00

LISTEN
Air date: April 16, KPFA. 94.1 fm, www.kpfa.org

Original drama, Blind Man's Bluff,
Starring Kris Yates & Mary Ann (Tidwell) Boussard

Adapted from Geri Taecken's memoir of progressive blindness and coming of age in the disability movement.

A poignant, funny story
produced by a team of people
with disabilities
(and one able bodied engineer).

Original book cover

Cast

Geri ... Kris Yates .
Cheryl ... Mary Ann (Tidwell) Boussard .
Airline Steward ... Ammy Joseph .
Ticket Agent ... Shelley Berman
Conductor ... Doyle Saylor
Cliff ... John Healy
Nina ... Leah Gardner
Helpful Man & Bus Driver ... Patty Nash
Incidental Characters: Jan Santos, Adrienne Lauby, & Leah Gardner

Engineering by Lamont Young
Screenplay by Leah Gardner & Adrienne Lauby
Direction by Shelley Berman & Leah Gardner
Audio Editing and Sound Effects by Greeta Ahart & Adrienne Lauby
'Diary' music by J.S. Bach played by Ayaka Isono

Thanks to the Shoestring Radio Theater for sound effect assistance.

Author Geri Taeckens uses her website to raise money for health care for service animals. You can read all her adventures in her memoir which is available through her website, locally at Waldon Pond Books, or at the usual on-line booksellers.

Photo of Geri & her dog

poster for the broadcast

PJS/JPS Resource List

2010-04-07T12:57:00.000-07:00

Provided by Stephanie Sugars

* June 26, 2010, PJS Meet & Greet in Santa Rosa, California. Details at: http://pjsmeetandgreet.blogspot.com/

* For researchers of the PJS gene, LKB1, there is a conference titled "The Tumor Suppressor LKB1" From Basic Science to Clinical Applications" in Marseille, France June 24, 25 & 26, 2010. More information at http://www.lkb1.com/

* Peutz-Jeghers News blog by Stephanie Sugars - http://peutz-jeghersnews.blogspot.com/

* Updated & revised listserv for people with PJS and JPS (juvenile polyposis syndrome). The affected, family, friends, medical professionals and researchers are welcome to join the free online support group http://listserv.acor.org/archives/pjs.html If email volume is a problem, join digest mode for one daily email. Or go nomail to search the archives as needed. If you'd like to join & need help, please write to Pj4steph@aol.com

* New screening guidelines for PJS and Juvenile Polyposis Syndrome from National Comprehensive Cancer Network at http://www.nccn.org/about/news/newsinfo.asp?NewsID=227 (free registration required). These are different and more up-to-date than the attached guidelines.

Also available at http://img.medscape .com/pi/editoria l/articlecme/ 2009/712885/ Colorectal_ Cancer_Screenin_ g_V.1.2010_ Medscape. pdf

* Trouble with bowel preps - Fleet Phospho-Soda and the pill preps (Visicol and Osmoprep) have caused harm to patients - read more about FDA warning at http://www.webmd.com/digestive-disorders/news/20081211/black-box-warning-for-bowel-prep-drugs

* PJS in the news - June 2009. This story is about mice, not people. And no, these drugs aren't currently available to PJS human patients, though there is a small trial of them in Utah & Hawaii (see below). And the suggested FDG-PET scans for screening have several drawbacks including accuracy, expense & radiation exposure. Still, it's interesting that mouse PJS polyps show increased glucose metabolism. The PJS gene LKB1 affects both metabolism and cancer risk. Press release: http://www.eurekalert.org/pub_releases/2009-06/si-hc061209.php Free full text article: http://www.pnas.org/content/106/27/11137.long

* Psychosocial impact of Peutz-Jeghers Syndrome - free full text report

http://www.springerlink.com/content/l7217g4u05u81651/fulltext.pdf

* PJS people - photos, locations and comments, add yourself at http://www.frappr.com/pjspeople

* How to have a PJS-free baby. This is a report that I wrote for the PJS Online Support Group (http://listserv.acor.org/archives/pjs.html). Posted at http://peutz-jeghersnews.blogspot.com/.

* Genetic mosaicism has now been described in PJS people. This is something patients and family members should discuss with genetic counselors…but they don't have the information yet. Posted at http://peutz-jeghersnews.blogspot.com/

* A 50+ page report from Mayo Clinic on PJS, appropriate for patients, family, doctors and genetic counselors at http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=famcan or at pjsinfo.com

* Recent addition to the above resource - Peutz-Jeghers syndrome in Children and Adolescents by Warren Hyer at http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=famcan

* Peutz-Jeghers Syndrome and Management Recommendations. This 2006 article from Johns Hopkins includes suggested screening for PJS people & at-risk family members. Click on full-text pdf for free full text.

http://www.cghjournal.org/article/PIIS1542356505010931/abstract?source=aemf

* 2007 Medscape article on PJS & similar polyposis syndromes www.medscape.com/viewarticle/561747

* 2009 eMedicine article on PJS

http://emedicine.medscape.com/article/182006-overview

* 2006 Frequency and Spectrum of Cancers in the Peutz-Jeghers Syndrome. Click on full-text pdf for free full text. http://clincancerres.aacrjournals.org/cgi/content/full/12/10/3209

* The Genetest PJS entry is good to share with medical professionals. Also includes genetic testing laboratories. http://www.genetests.org/

* The new genetic test method, MLPA, has increased the accuracy of genetic testing. Those with previously negative or inconclusive test results may wish to be retested. Labs are listed at the genetests.org website.

* Learn more about the PillCam for small bowel imaging at givenimaging.com

* Learn more about double balloon enteroscopy, a new surgical method and get referrals to doctors who use it at www.fujinonendoscopy.com This method allows the entire small bowel to be scoped and replaces major and endoscopic surgery in some PJS patients.

* Olympus has developed a similar method called single balloon enteroscopy. www.olympusamerica.com/

* There is a third type of enteroscopy called spiral enteroscopy that has been used in PJS patients. http://www.spirusmed.com/enteroscopy.html

* There's a very small chemoprevention clinical trial for PJS people. Participants must live in Utah or Hawaii. This trial uses the rapamycin analogue RAD001 to target mTOR, a downstream target of the PJS gene LKB1. Link to trial information

http://clinicaltrials.gov/ct2/show/NCT00811590

* A list of many laboratories providing genetic testing for PJS is available at http://www.ncbi.nlm.nih.gov/sites/GeneTests/lab/clinical_disease_id/21338?db=genetests

* Genetic testing is available (no travel necessary) through Professor Rodney Scott, Division of Genetics, Hunter Area Pathology Services, John Hunter Hospital, Lookout Road, New Lambton, NSW 2305 Australia. Check with Dr. Scott for cost Rodney.Scott@newcastle.edu.au

* A Funny Polyp Study for those with unexplained polyposis. Please have your medical care professional contact them for more information www.lerner.ccf.org/gmi/research/funnypolyp

* Johns Hopkins in Baltimore, MD also has a pancreatic cancer screening study called CAPS4 that is open to PJS participants http://clinicaltrials.gov/ct2/show/NCT00714701

* H. Lee Moffitt Cancer Center in Tampa Florida also has a pancreatic cancer screening study http://www.moffitt.org/site.aspx?spid=CABF01C1E2F4447983BDD663F9FAAC09 Here's an article by the study's principle investigator, Dr. Klapman www.moffitt.org/moffittapps/ccj/v15n4/pdf/280.pdf

* Dr. Stratakis continues to study PJS patients in Bethesda, MD, USA http://clinicaltrials.gov/ct/show/NCT00001452?order=2

* European laboratories, research studies and information

http://www.orpha.net/

* For more resources, go to peutz-jeghers.com

* There are many new articles on PJS and the PJS gene LKB1 or STK11 available at http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed

* Many free, full-text, old articles on PJS are available at

www.jeghers.com/pj_pubmed.aspx

*************

ONLINE SUPPORT GROUPS - INHERITED CANCER SYNDROMES

PJS & Juvenile Polyposis

http://listserv.acor.org/archives/pjs.html

Sindrome de Peutz-Jeghers en Espanol

sindromedepeutzjeghers@googlegroups.com

http://groups.google.es/group/sindromedepeutzjeghers?hl=es

Peutz-Jeghers syndrome in China

subberry@gmail.com

HNPCC

http://health.groups.yahoo.com/group/HNPCC/

FAP/Gardner syndrome

http://listserv.acor.org/archives/fap-gs.html

Gardner

http://health.groups.yahoo.com/group/gardnerssyndrome/

Li-Fraumeni

http://listserv.acor.org/archives/li-fraumeni.html

Colon Cancer

http://listserv.acor.org/archives/colon.html

Cowden/PTEN

http://health.groups.yahoo.com/group/cowdensyndrome/

Stephanie Sugars

pj4steph@aol.com

Intersexuality

2010-04-02T20:40:00.001-07:00

Listen 29 min

Caster Semenya photo by Andy Lyons/Getty Images

Olympic runner, Caster Semenya, showed up to race in Stellenbosch, South Africa, this week and the International Association of Athletics Federations (IAAF) wouldn't let her run because she is alleged to be an intersex person.

Hida Viloria, the spokesperson for human rights from Organisation Intersex International (OII). and

photo courtesy Hida Viloria

Curtis Hinkle,
the organization's founder, join us to talk about their petition in support of Semenya and bring us some of the complexity behind these news headlines.

Organisation Intersex International believes that intersex is not primarily a medical condition. They say intersex children should not be subjected to surgery and hormones without their consent -- unless there is a critical need.

With active affiliates in six continents, OII creates community and activist support across cultural and language barriers.
Eddie Ytuarte and Adrienne Lauby host this mind-expanding discussion.

PLAY BALL!

2010-03-15T09:13:00.000-07:00

LISTEN 29 min.

One-handed big league pitcher, Jim Abbott,(1989-1999) joins us for a discussion of disability in professional baseball.

Also, current Oakland A's stars Mark Ellis and
Eric Chavez talk about the reality of playing baseball with disabilities. A few managers take a swing at discussing disability on the field as well.

Grab a bag of peanuts. . .

Abbott photos
courtesy Jim Abbott

Leah Gardner &
Shelley Berman host.

(Our broadcast of excerpts from Blind Man's Bluff has been postponed due to producer illness. Watch for a new broadcast date soon.)

Texas Rangers Manager Ron Washington talks to
A's 2nd baseman, Mark Ellis

Eric Chavez comes up to bat in Phoenix spring training. Notice his back, which has been a problem since high school and recently was the focus of two surgeries. Now, notice the photo of Eric Chavez coming in after another home run.

Spring training photos by Shelley Berman

Smell hot dogs on the wind,
feel the sun on your face in the bleachers and
know magic might be made
with the next pitch. . .

Original Air Date: March 12, 2010

Haiti’s Disaster & Oakland’s Disaster Plan

2010-02-03T13:46:00.000-08:00

Listen: 28 min

In a natural disaster like the Haitian earthquake, people with disabilities suffer the highest death rate. Moreover, for every person killed, three more are likely to become disabled.

We talk to Portlight Strategies, a grassroots group providing supplies and support for disabled Haitians.

Paul Timmons & friend with hospital beds

& other supplies ready to load.

We also talk to Karla Gilbride,

an attorney from

Disability Rights Advocates,

whose settlement* with the

City of Oakland brings

people with disabilities

firmly into Oakland's

planning for disasters.

What helps prevent death and injury to those who live

disability during an emergency? How can we support Haitian people with disabilities after an earthquake that killed two hundred thousand people?

Adrienne Lauby and Shelley Berman

pose the questions.

wheelchair with seat

repaired with a lawnchair

photo from: hishandsforhaiti.org

DRA Logo

Local shoe drive for Haiti:

A shoe drive for Haiti is accepting new and “almost new” shoes for the next two months. Askanez will collect them at 1317 San Pablo, any evening except Monday. The HUP Foundation (with local help) will ship and distribute them.

For Better or Worse:

2010-01-29T10:08:00.000-08:00

The National Health Care Bill

Listen 28 minutes

Will people with disabilities, seniors and low-income
folks benefit if the health care bill is passed?

After nine months of political wrangling and back door
deals, the US congress was set to put a universal national
system for health care insurance in place. Then,
Massachusetts’ voters sent a Republican to congress --
and everything changed.

As we linger in the morass
of Congressional uncertainty,
we talk with BOB KAFKA,
a national organizer for the
grassroots disability organization, ADAPT.

He’ll tell us what to celebrate
if the bill is passed,
and why we can be happy
if it is not.

With an essay by Shelley Berman.
Hosted by Adrienne Lauby and Ruthanne Shpiner.

Original air date: 1-29-10

(If you know the cartoonist who did the picture above, please tell us.)

Sticks and Stones

2010-01-12T14:19:00.000-08:00

Listen (28 min)

Shocking Statistics: Teenagers and middle aged people with disabilities suffer criminal violence twice as often as the able-bodied. Women are two time more likely to experience violence if they live with a disability. And, there is more. . .

Horrific Social Context:
People with disabilities
not served well or at all
by domestic violence agencies.

Cover art by Carli Scales

Little or no attention to abuse and violence
by traditional disability non-profit agencies.
Widespread perception of disability as a weakness,
dependency and less-than-human condition.
Centuries of documented mistreatment.

Moving Past
Shock and Horror
to Defiance and Resilience:
The stories from a new book,
Sticks and Stones,
edited by Marsha Saxton,
lay out the problems and offer strategies
to confront this multi-pronged beast.

Editor, Marsha Saxton

CAPE: Curriculum on
Abuse Prevention and Empowerment

Hosted by
Adrienne Lauby and Leah Gardner.

original air date: Jan 15, 2010

It's The Attitude

2009-12-26T15:57:00.000-08:00

Listen 28 min

If you are one of these people, you should listen to this show:

Do you often know more than your doctor?

Do you freeze up when someone says, ”How are you?”

Have you ever done something

you know will make you sick?

Do you believe you personally

caused your own illness

or other problem?

Do you believe your disability

or other problems were caused

by the Great Sea Monkey?

Do you have cancer or know someone with cancer?

Do you hate chess?

Have you ever had to fight

with a drug or insurance company?

Do you like to laugh?

Carolyn's book recommendations:

Illness as a Metaphor

Susan Sontag

A Spot of Bother

Mark Hadden

Carolyn Epple, who lives

with bladder cancer and

chronic inflammatory demyelinating polyneuropathy

(and happens to be a cultural anthropologist)

joins Shelley Berman &

Adrienne Lauby, the Asthmatic Amazon,

in the studio.

Halloween photos courtesy of

Redwood Rainbow Square Dance Club

The Reckoned and the Reckoning

2009-12-16T13:54:00.000-08:00

Listen 28 min.

Drawing by Neil Marcus

We celebrate Winter Solstice,
the day the earth turns back to the light.

George Louie

one of the plaintiffs in the Contra Costa pedestrian access lawsuit,
speaks frankly about his role
in this controversial case.

In Home Supportive Services (IHSS) activists

Tom Ross
Carman Rivera-Hendrickson
Kenneth C. Johnson
Cheryl Powell Smith

Plus,
Shelley Berman, Eddie Ytuarte, Leah Gardner, and Adrienne Lauby
send out year-end honors,
raspberries to the inexcusable,
blueberries to the indestructible.

Janus (or Ianus), the Roman god of gates, doorways, beginnings and endings

2009-12-09T10:09:00.000-08:00

Archives Return
Want to hear a past program from Pushing Limits? Just click on the title to the right! (This is part of our effort to revive the archives we lost early this year.)

Dancing With Disability

2009-12-02T11:18:00.000-08:00

Listen (29 min.)

This program is dedicated
to the memory of Peggy Hecker,
long time Pushing Limits member,
who died earlier this year.

The complex history of the word cripple

How to include

people with verbal, cognitive,

developmental, emotional

and other discounted disabilities

The story of a disabled woman

powering a diesel truck

through the Australian desert

Excerpts from a steamy love story called Cripple Poetics.

Wha Hoo!

Performance artists and poets join us in the studio!

Neil Marcus

Petra Kuppers

Amber DiPietra

Audio describer, Lakshmi Fjord

Produced by Adrienne Lauby

Seashore

by Amber DiPietra

Set to music and sung by Mindy Dillard

A seashore inside her, she is

drifting

in the shallows

of a short

nap's trip

inland

and when

you put your arm leg hand near

enough to mine all my

cheek cells will come wading, swinging

lanterns and singing, out to

meet you

Upcoming

Somatics/Expression Disability Culture Workshops

with Neil Marcus and Petra Kuppers

Two Sundays, December 20 & 27, 2009, 3-5 pm

Subterranean Arthouse,

2179 Bancroft Way, Berkeley,

www.subterraneanarthouse.org.

Suggested donation: $15.

no one turned away for lack of funds.

Next Performance
March 19th at 8pm.

Subterranean Arthouse,

2179 Bancroft Way, Berkeley,

www.subterraneanarthouse.org

Neil played a clip from the 1950 film

Cyrano de Bergerac

and joined José Ferrer in this statement:

No thank you, no, I thank you,

and again I thank you.

Neil & Jose: To sing, To laugh

To walk in my own way

free with an eye to see things as they are

Neil: A Poet!

A voice that means manhood.

To [put?] my head where I choose.

Not a word, a Yes,

Neil & Jose: a No

To fight

Neil and Jose: for right

But never to make a line

I have not heard in my own heart.

Original air date: December 4, 2009

Get In The Game

2009-11-21T00:49:00.000-08:00

Listen 28 min.

Who says a one-armed man can't pitch a no-hitter or
shoot for the net in a Division I college basketball game?

photo by Neil Marcus

Who says a deaf man can't wield the bat
in a major league baseball game?

And who says disabled kids
don't make good athletes?

A discussion of possibility,
triumph -- and kids.

Guests:
Commentator Gary Gray, who covers disabled athletes at BlackAthlete.com and on his internet radio program, Gray Leopard Cove.
U.S. Adaptive Ski Team

Doug Pringle, President of the Far West chapter of Disabled Sports USA

Hosted by Eddie Ytuarte and Leah Gardner.

Resources:
Bay Area Outreach and Recreation Program (BORP)
www.borp.org
Activities for youth include wheelchair basketball, power soccer, track and field and hand cycling.
For adults, they have the same sports plus goalball.
BORP's outings and adventures program offers hiking, skiing and other outdoor expeditions.

Tandems Across the Bay is composed of a number of volunteers with tandem bicycles. They offer excursions on weekends and some holidays. These trips often start in San Francisco in the Fisherman's Wharf area. For more info, e-mail tandemsacrossthebay@gmail.com.

The Bay Area Association of Disabled Sailors (BAADS)
They meet every Sunday at noon from Pier 40 in Sf.
www.baads.org

Disability Rights California

2009-11-04T12:50:00.000-08:00

Disability Rights California Logo

Listen (28 min)

Do non-profits operate
under too narrow
a charge?

Are they just plain
too conservative?

Catherine Blakemore

Eddie Ytuarte and Leah Gardner puts these questions to Catherine Blakemore, the executive director of one of the highest funded disability non-profits focused on California issues, Disability Rights California (DRC) -- It's also one of the most successful.

Sins Invalid

2009-10-29T21:53:00.000-07:00

Take a good look
in the mirror.

Do you feel pride
in what you see?

Pushing Limits
ogles --
Beauty in the Face of Invisibility.

Listen, 28 min.

Nomy Lamm
photo by Richard Downing

Leah Gardner interviews Patricia Berne and Nomy Lamm from the groundbreaking organization, Sins Invalid.

This troupe of artists and performers use storytelling, music and dance to demonstrate
that disabled bodies are beautiful. Artistic director Patricia Berne and performer Nomy Lamm will discuss their work with Sins Invalid as well as what it takes to break down the barriers of shame and fear to create beauty

Best Websites For California Budget Advocacy

2009-10-18T10:14:00.000-07:00

IHSS Coalition
www.ihsscoalition.org
Consumers, Providers and Advocates
Working Together to Protect and Improve
California's Home Care

Disability Rights California
www.disabilityrightsca.org
California's Advocacy and Protection System

A website of in-depth information

They will send copies to people without web access.

1-800-776-5746

United Domestic Workers of America

www.udwa.org

Serving Homecare Providers

across California

Bi-Lingual, English and Spanish.

(619) 641-1190
(800) 621-5016

Oakland Rally 10-19-09
in support of lawsuit challenging IHSS cuts

County Welfare Directors
Association of California
To promote a human services system that encourages self-sufficiency of families and communities, and protects vulnerable children and adults from abuse and neglect.
Sacramento, CA
916-443-1749
916-443-3202 FAX

California Communities United Institute
Coordinates timely letters and e-mails to California
legislature committee members and the full Senate
and House on a variety of progressive issues.
Features regular updates of California budget actions.

IHSS Appeals and Daily Help

2009-10-16T23:21:00.000-07:00

(Picture: University of Alaska at Anchorage, Disability Support Services

Appeal Assistance

1. Training and Orientation for IHSS Appeal Assistance Volunteer Corps. Westside Center for Independent Living Los Angeles, IHSS appeal mechanics and our Volunteer Corps process, quality control, confidentiality, and record keeping. Call Janet (323) 294-4565 weaver1245@aol.com

2. Recorded message about appealing the cuts, in English and Spanish: 1-877-601-4477 receive additional information on what to do.

3. In San Francisco: CRIL (415) 703-0286

Help with Daily Living

1. Tuesday Lunch Group
Every Tuesday, U.C. Berkeley, Bear's Lair 12-1 pm
can be fed, no money required.
With a day's notice, Serene Vannoy will do lunch
Monday through Thursday with anyone who needs it.
Disabled Students' Program office on Upper Sproul.
(510) 643-6473
(510) 642-6376 TTY

2. Ongoing Discussion and Coordination
of Community-Based Help in the East Bay.
Send a blank email to
DisMeals_EB-subscribe@yahoogroups.com

3. Free Assisted Lunch
"a while back I had checked with St. Vincent de Paul's on San Pablo Avenue in the East Bay. If people with disabilities go there for their free lunch, they will provide a person to help feed you if that is necessary."

Service Cuts -- Will You Stand With Us?

2009-10-13T10:48:00.000-07:00

Listen. 29 min
Original air date: Friday, Oct 16, 2:30 pm

KPFA, 94.1 fm

Critical cuts and unannounced home visits have begun for people with disabilities who rely on California’s In Home Support Services (IHSS).

Pushing Limits talks to Bobby Bogan. Executive Director of Seniors Organizing Seniors.

graphic by Soujaboy

Bogan sees both fear and courage as the State of California implements massive cuts.

On November 1st, 130 thousand people will be reduced or axed from the IHSS program. Over 450 thousand people face unannounced home visits and routine fingerprinting. Seniors, people living with AIDS and the developmentally disabled community face similar and overlapping slashes to programs they depend on.

Bobby Bogan’s San Franciso organization based in the South of Market area, Seniors Organizing Seniors, deals with the effect of these cuts first hand.

He joins Pushing Limits producers, Eddie Ytuarte, Adrienne Lauby and Nick Feldman.

Tune in to hear:

--stories of resistance,

--stories of community self-help, and

--advice about appealing individual cuts.

Letter From IHSS?

2009-10-12T22:43:00.001-07:00

If you received a notice like this,
file an appeal today or tomorrow!

(See below for a
sample appeal letter. )

Send it to
State Hearings Division,
California Department of Social Services,
744 P Street, MS 19-97,
Sacramento, CA 95814-6413.

You can also request a hearing by calling
(800) 952-5253 or TDD: (800) 952-8349

You have the right to appeal regardless of what the notice says. If you cannot travel to the hearing office, you can request an in home hearing which is required by the judgment in the case of Tesluck vs. Swoap.

Keep a copy of the request for hearing you send.

SAMPLE APPEAL LETTER

Your Name ________________________________

Your Address_______________________________

_______________________________

Your Phone Number _________________________

Date ______________________

To:

State Hearing Division

California Department of Social services

744 “P” Street, MS 19-97

Sacramento, CA 95814-6413

Regarding: Request for Hearing

Case No.: ____________________

Dear People,

I am appealing the 9/16/09 IHSS notice form that I received AID PAID PENDING. The notice is not understandable. I do not know if the notice applies to me because there is no particularized information. The notice says I do not have a right to a hearing. But that is not correct. I do have a right to a hearing, if the notice does not explain what action is being taken and how it applies to me. I am requesting that my IHSS aid be continued at the same level until my hearing, even if I requested this hearing after 10/1/09. This notice does not comply with the federal or state regulations and therefore my aid must continue.

Yes__ No___ I need a home hearing because I cannot get to the hearing office for my hearing. A home hearing is required for all those who cannot make it to the downtown (or to the county location in other counties) hearing office as per the class action Judgment of Tesluck v. Swoap.

____________________

Your Name

IHSS Appeals -- Make a Huge Difference

2009-10-07T22:09:00.000-07:00

This urgent appeal toward a grassroots network comes from a group in L.A. It could be utilized around the state and replicated specifically in each county.

As you probably know, there are thousands of In-Home Supportive Services consumers who are threatened with losing their in-home services on November 1. The Personal Assistance Services Council is organizing an Appeal Assistance Volunteer Corps to work with IHSS consumers who want help to file an appeal.

I am contacting you because you may know people who would be interested in participating in this Volunteer Corps. I know that you are already very busy and, hopefully, you can suggest 1 or 2 people who would be interested in doing this. After you send me their names, I will call them to talk about the program and see if they are interested. If you would rather call them, feel free to forward the attached description for their information. For people who want to participate, we are scheduling a 3-hour training session by October 16th.

As the attached description outlines, we are looking for IHSS consumers, advocates, parents, and/or retirees. We will provide training, materials, and on-going assistance as they work with the consumers who call in for help. Generally speaking, the work with the consumers can be done on the phone.

Please let me know if you have any questions or suggestions. With the state sending the notice of action to consumers by October 19th, we need to act fast. I hope to hear from you by the end of this week, October 9th.

This is a very important undertaking and I thank you for your help. I look forward to hearing from you soon. Janet

Janet Heinritz-Canterbury, M.S.W
Board Treasurer, Personal Assistance Services Council for IHSS
4434 9th Avenue
Los Angeles, CA 90043
(323) 294-4565
weaver1245@aol.com

4730 Woodman Avenue, Suite 405, Sherman Oaks, California 91423
www.pascla.org
Tel: (818) 206-7000 Fax: (818) 206-8000 Toll Free: (877) 565-4477 TTY: (818) 206-7015

IHSS APPEAL ASSISTANCE VOLUNTEER CORPS

What is the IHSS Appeal Assistance Volunteer Corps?
Recent legislation has drastically changed the In-Home Supportive Services (IHSS) program. One of the changes will result in the loss of some or all services for certain IHSS consumers.

These IHSS consumers have the right to appeal changes in their services. The IHSS Appeal Assistance Volunteer Corps will help these consumers file and go through the appeal process. This Volunteer Corps includes individuals familiar with IHSS and, ideally, with the IHSS hearing process from the Personal Assistance Services Council (PASC), United Cerebral Palsy, CALIF, Ability First, SEIU-ULTCW, AARP, and many other organizations and networks.

The Volunteer Corps members will be trained in the specifics of IHSS and how to file and prepare for an appeal. The PASC will provide training, informational materials, and forms to keep track of consumers who Corps members assist between now and the actual hearing date which may be several months from now. The PASC will also talk with Volunteer Corps members periodically about their cases and provide assistance if necessary.

How does the Volunteer Corps work?
The State Department of Social Services will send a notice of action to these consumers by October 19, 2009. The PASC is also sending a letter saying we can help with their appeal if the consumers call us at our 800 number. We expect that consumers will begin to call for help after they receive the Notice of Action or when they receive the PASC letter.

When the consumers call, the PASC will refer them to a Volunteer Corps member who can help them with their appeal. The Volunteer Corps member will have intake and follow-up forms and will have informational materials to answer questions that come up as they work with the consumer. Generally speaking this assistance will take place over the phone. Volunteer Corps members will also go out to senior centers and community centers to make presentations and provide one-on-one assistance to consumers who attend these presentations.

Who are the Volunteer Corps members and what will they do?
* They are IHSS consumers, seniors, parents, advocates, retirees, and/or are part of a network
* They are organized, keep good records, and pay attention to detail
* They are advocates and people who know about IHSS or social services
* They receive training, including role plays, on procedures and outcomes of the hearing process
* They do lengthy phone conversations and keep records on potentially complicated situations

How can I or my organization participate?
If you are or know an IHSS consumer who has been through the appeals process, or know an advocate, activist, parent and a person who is willing to volunteer for this program, please contact, Janet Heinritz-Canterbury, (323) 294-4565 or email Janet at: weaver1245@aol.com

People with disabilities need help now, please call as soon as possible!

Settling for Defeat (Update)

2009-09-23T15:35:00.000-07:00

Judge David Flinn rejected the tentative settlement re. Contra Costa county pedestrian access rights. Apparently he received a lot of comments against the settlement and not too much support for it. He pretty much had made up his mind, even before he began the hearing.

In fact, it was so one sided that neither Plaintiff attorney Morse Mehrban, nor anyone from his Los Angeles law office, showed up. The plaintiffs attorney seemed to be lost. Morse did send a "messenger" with three pages of notes; literally a messenger. Judge Flinn cautioned the messenger that this class action matter was a very serious law case and he should be careful as to how he is employed in such situations. The Judge was not very happy about the counsel's absence and that pretty much sealed his decision to overturn his initial ruling in favor of the settlement.

The judge will schedule another hearing in about sixty days. This hearing will be for the purpose of the possibility of coming up with a different settlement. The attorney for the cities will still be involved as well as anyone from the much expanded members of the class; or those who commented on the suit, including Terry Kilpatrick, the attorney who appeared on Pushing Limits.

Presumably, the original three plaintiffs and their "lost" attorney Mehrban would still be free to try to fashion a new settlement. This turn of events was very unusual in Judge Flinn's courtroom. In most cases, there are few objections once settlements of this kind are initially approved. But losing the counsel for the temporarily victorious three plaintiffs is an almost unheard of situation. Well, Attorney Mehrban got his little butt spanked pretty good this time by aware and knowledgeable members of the disability class.

Wildfires, Earthquakes, and Hurricanes, oh my...

2009-08-27T20:57:00.000-07:00

Are people with disabilities ready for a disaster?

Listen to program. 29 min

We talk to Ana-Marie Jones and Tracy Baker of Collaborating Agencies Responding to Disaster (CARD) about how to prepare.

Karla Gilbride, of Disability Rights Advocates, a Berkeley legal non-profit, also talks about their suit against both Oakland and L.A. for their lack disability access in emergency planning. The suit changes Oakland with
* The failure to conduct adequate surveys of the accessibility of potential shelter sites, resulting in a list that contains many inaccessible shelters;
* The failure to revise the City’s Mass Care and Shelter Plan from the 1980s to address the needs of men, women, and children with disabilities;
* The failure to make arrangements to provide prescriptions, medical supplies and equipment, or accessible transportation to people with disabilities in an emergency.

On August 12, the National Council on Disabilities released a Report on Emergency Management sub-titled "Making Improvements for Communities and People with Disabilities." Here's some inclusive planning, except--oops -- they forgot prisons.

We can't ever forget that more and more people with disabilities, especially mental disabilities, are housed in prisons and jails. Many baby boomers live within the enormous U.S. prison-industrial complex and they aren't becoming more able-bodied as the months pass by.

Hosted by John Healy, with tips by Adrienne Lauby.

Settling for Defeat?

2009-08-20T18:13:00.000-07:00

Listen to the show
28 minutes

UPDATE: 9-23-09

Has a private attorney (with the cooperation of just three people with disabilities) gone too far in concocting an unusual class action settlement agreement affecting fourteen cities in Contra Costa? The proposed settlement allots five percent of a city’s gas tax on the condition that people with disabilities be prohibited from taking legal action having to do with pedestrian access--for the next 30 years.

Disability access specialist Richard Skaff and attorney Terry Kilpatrick discuss this controversy with hosts Adrienne Lauby and Eddie Ytuarte.

The 14 cities are Antioch, Brentwood, Concord, Danville, El Cerrito, Martinez, Moraga, Orinda, Pinole, Pittsburg, Pleasant Hill, Richmond, San Pablo, and Walnut Creek

If you to object to the proposed class-action settlement, do something about it. Please be aware that all objections must be in writing and postmarked no later than September 8, 2009. You can either object in writing or you can write to the attorneys and the court to let them know that you plan to appear at the Superior Court hearing in Martinez at 9 a.m on September 22, 2009. You can also go to the hearing and hope to be allowed to speak. Either way, please write and get your objections on file by September 8th. A copy of your objection must be sent to each of the following people:

1. Morse Mehrban, Esq.
Law Offices of Morse Mehrban
12100 Wilshire Blvd., 8th Floor
Los Angeles, CA 90005-1206
(Attorney for Plaintiffs)

2. Eugene B. Elliot
Bertrand, Fox & Elliot
The Waterfront Building
2749 Hyde Street
San Francisco, CA 94109
(Attorney for Defendants)

3. Honorable David B. Flinn, Dep. 6
Contra Costa County Superior Court
725 Court Street
Martinez, CA 94553
(Judge Assigned to the Case)

Smoke and Vaporizers --

2009-08-06T17:14:00.000-07:00

Medical Marijuana and Disability

Listen to program

The fascinating intersection between disability and medical marijuana.

Guests:
Bill Fold aka the man who replaced his anti-depressant, Wellbutrin, with medical marijuana.

photo: cannabisculture.com

Steve Howdyshell, a gulf war vet who lives
with the multiple side effects of war.

Lisa Gygax, an attorney living with a disability,
who represents The Organic Cannabis Foundation
of Northern California, a collective of patients and their
primary caregivers, which runs the largest medical marijuana
dispensary in the top half of the state.

Hosted by Shelley Berman and Adrienne Lauby.
Original air date: 8-7-09

Correction-SSI Cuts

2009-08-04T18:21:00.000-07:00

There is a reduction in SSI/SSP grants in this California Budget. On Friday's program we said that SSI had gotten a pass. However, starting October 1, 2009, SSI/SSP will cut $5-per-month from individuals and cut couples to the federal minimum. The maximum grant for an individual will drop from $850 to $845, and the maximum grant for couples will drop from $1,489 to $1,407. This is especially traumatic for many couples.

In addition, the Democrats also agreed to put our Cost Of Living Allowances (COLA) into the pot that requires a 2/3rd majority vote. Will we ever get a yearly 5-15 buck raise again? Stay
tuned....

Thanks to the listener who first brought this to our attention.

Beyond the Devastation

2009-07-30T20:03:00.000-07:00

Stop Gov. Arnold Schwarzenegger's new line-item veto budget cuts. Contact Speaker Karen Bass and Senate President Pro Tem Darrell Steinberg and urge them to call legislators back to Sacramento to override the cuts

Download this Program 26 min
Evan LeVang and John B. Kelly talk about
what California's people with disabilities
can do to stop the slide toward death and
nursing homes.

Disability rights activists regroup after passage of a criminal California budget that devastated IHSS, Medi-Cal, Cal-Works, cities, regional centers, AIDS programs and more.

John Kelly works with Neighborhood
Access Group (NAG), a grass-roots
organization dedicated to improving
street-level access in Boston. His
writing has appeared in the Boston
Globe, Counter Punch, and the Ragged Edge.

Evan LeVang is Executive Director of Independent Living
Services of Northern California. He is also the founder
of DOGFITE, Disability Organizing Group for Initiating
Total Equality, ”an advocacy group which includes universal
health care, tax justice, immigrant rights and no offensive
military spending among it's goals.

Hosted by Adrienne Lauby and Eddie Ytuarte

photo by John B. Kelly
No Room on this Sidewalk for You!
Neighborhood Access Group

dog cartoon courtesy of D.O.G.F.I.T.E.

What I've Witnessed

2009-07-18T15:45:00.000-07:00

photo by Joy Taylor

Robert E. Miller [speaking through a sign-language interpreter]

Download audio 2:43
On July 7, more than 250 protestors blocked the front entrance to the governor’s office in Sacramento for six hours in an attempt to force Schwarzenegger to speak with them. When he left the building by another door at the end of the day, twelve people, most of them with severe disabilities, refused to leave. Several were part of a similar civil disobedience action in San Francisco in June. The twelve were arrested, cited and released. Robert E. Miller was among them.

The People’s Day of Reckoning Coalition, which often includes unionized in-home health care workers, has been targeting the Governor’s many offices around the state for over a month. Among their demands is shared sacrifices by the wealthy -- that is, new taxes. Next week, Thursday, July 23, they plan to take their growing frustration to elected assembly members and senators at their local offices.

To find out more about the People’s Day of Reckoning Coalition, call Jessica Lehman at 510-881-5743. She’ll put you in touch with the group closest to you.

We're Here, We're Proud, Together and Loud

2009-07-09T17:18:00.000-07:00

photo by Joy Taylor

More than 200 people with disabilities and their friends demanded to speak directly with Governor Schwarzenegger, Tuesday, July 7.

They blocked the front of his Sacramento office for more than six hours. Twelve protesters refused to leave the building at the end of the day. Each was arrested, cited and released.

Download Interview 2:24

I depend on my Aids.

(Unidentified protester)

The protesters were there to support In Home Support Services, full funding of Medi-Cal, and other state programs which enables people with disabilities to survive and thrive. They demanded that the Governor sign a budget with increased tax revenue.

"We are calling for a budget solution that is based upon shared responsibility and shared sacrifice -- not a solution that falls squarely upon on the shoulders of children, people with disabilities, elders, the chronically ill, the unemployed and the impoverished," they said in a written statement.

Inter-Dependence Day

2009-07-03T12:03:00.000-07:00

Painting by Patricia Waters

Listen to entire program, 28 min.

Listen to Patricia Waters, 5 min
Listen to Concetta DeLuca, 5 min.

As the nation heads into the
Fourth of July weekend,
Pushing Limits interviews
people pushing for
independence
for people with disabilities.
Blane Beckwith, local
representative of ADAPT,
is in the studio.

Blaine Beckwith

Plus, Patricia Waters and
Concetta DeLuca tell personal
stories of passionate lives
in these difficult times.
Interviews by Adrienne Lauby.

ADAPT fights "so people with disabilities can live in the community with real supports instead of being locked away in nursing homes and other institutions."

Eddie Ytuarte & John Healy host.

People's Day of Reckoning

2009-06-22T09:43:00.000-07:00

Photo by Riya Bhattacharjee of The Berkeley Daily Planet

Lost Services
become Lost Lives
The California Budget
is Killing Me!!

Tuesday,
June 23, 2009
11:00am - 3:00pm
San Francisco
City Hall to
the Governor's Office
455 Golden Gate Ave

California's safety net is rendered and torn -
we must fight to restore
benefits lost and fight to keep what remains.

As we celebrate the tenth anniversary of the Olmstead supreme court
decision - that community living is a civil right guaranteed under the Americans
with Disabilities Act - we must not lose the supports and services that
make community living possible.

Our Homes - Our Dignity - Our Civil Rights

Sacramento must stop the shell game - where California's vast resources
are segregated into "protected" pockets - and only the general fund is
subject to the vagaries of the economy and the budget process.

Vision Loss Resource Center

2009-06-18T15:06:00.000-07:00

listen to this program

Pushing Limits sheds light on the Vision Loss Resource Center with guests, Jessie Lorenz and Amber Dipietra.

What issues are affecting
people in the blind
and low vision community?

Amber Di Prieta

Jessie Lorenz
&
Amber DiPrieta

of the
San Francisco Lighthouse
for the Blind
discuss coalition building
in the face of state budget cuts,
accessibility to the internet,
and their new free advice service
(888-400-8933)
with hosts
Adrienne Lauby and Eddie Ytuarte.

Jessie Lorenz
with Olympic Torch

San Francisco Lighthouse
(415) 431-1481

2009-06-18T11:00:00.000-07:00