The Ed Roberts Campus

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

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?

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

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

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

(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

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

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

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

Modesto Bee article

Turning the Ship of State

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

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

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

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

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

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

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

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

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)

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