Welcome to Pushing Limits, Iâ€™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 donâ€™t think itâ€™s an overstatement that KPFA saved my life. Today, we talk to people who are deaf and donâ€™t share my addiction to radio.
Iâ€™m embarrassed to say that, until this week, weâ€™ve never had a written transcript of our show and, to be honest, making a transcript has been time consuming and difficult. I donâ€™t know when Iâ€™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 communityâ€”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 â€œDeafhood Forumâ€ at DCARA, the Deaf Counseling, Advocacy & Referral Agency in San Leandro last Friday night. Like us, last Friday, for the next half hour youâ€™ll become a hearing person in a deaf setting. You can find a transcript of the program on our blog at Pushinglimits@blogspot.com
Hereâ€™s 15-year-old Conrad Baer again:
CONRAD BAER: Iâ€™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 canâ€™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, weâ€™re like a big family.
ADRIENNE LAUBY: When Conrad Baer makes the ASL sign for â€œdeaf,â€ 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 â€˜deafâ€™. Hereâ€™s Butch with that discussion.
PARTICIPANT: Cultural implications.
BUTCH ZEIN: Terrific.
PARTICIPANT: Signing. ASL.
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 thatâ€™s something that we haven’t really ingrained in the deaf community yet. Thatâ€™s what weâ€™re here to do tonight.
This is what Patty Ladd says deafhood is, â€˜The process to decolonize our mind, body, and spirit from colonialism.â€™
ADRIENNE LAUBY: Hereâ€™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: Thereâ€™s a serious attack coming down on Conrad Baerâ€™s language. A bill called AB 2072 is already halfway to adoption by the California legislature. Itâ€™s a simple law and the deaf community says itâ€™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:
ADRIENNE LAUBY: Deaf community members met with the billâ€™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, â€œOh, weâ€™re willing to work with you.â€
And we said, â€œWhy don’t we wait a couple weeks for the vote? Letâ€™s not do this soon. Letâ€™s wait. There was rejection of that. They said, â€œOh, well, weâ€™ll go forward with the vote. We can change the verbiage of the bill later.â€
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, letâ€™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 donâ€™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.
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 billâ€™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 â€œCommunicate with Your Child by Letting Them Hear.â€
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, thatâ€™s what they call total communication. Itâ€™s not communication by any standard. Cued speech had itâ€™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, â€œWhere was the ASL information?â€
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, â€œOh, this looks great. Letâ€™s make a decision based on this brochure.â€
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 wasnâ€™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 thereâ€™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, Iâ€™d definitely like to include them), deaf community organizationâ€™s involvement is key. They are the experts of the deaf life experience.
ADRIENNE LAUBY: Rory Osbrinkâ€™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, whoâ€™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, â€œOh well, theyâ€™re just doing the legs,â€ and then the doctor came in and said, â€œNo. 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.â€
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: Youâ€™re tuned to Pushing Limits, KPFAâ€™s disability program. Youâ€™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.
ADRIENNE LAUBY: â€¦You were the 2nd child in the U.S?
RORY OSBRINK: Thatâ€™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.
Iâ€™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 â€˜cosmetic surgeryâ€™. 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. Itâ€™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.
ADRIENNE LAUBY: A lot of times in the media this is portrayed as â€˜do you want your child to be part of the deaf community?â€™ Or, â€˜do you want them to be part of hearing community?â€™ 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 donâ€™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.
RORY OSBRINK: Suppose you have a television. Itâ€™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.
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: Letâ€™s go back to Jim Brune for more about AB 2072.
JIM BRUNE: Many folks come in and say, â€œI donâ€™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?â€
I would like to clarify that. Yes, we do have ASL listed in the options but what we have to remember here is weâ€™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.
Weâ€™re sure that not all parents would understand the difference with that and thatâ€™s why weâ€™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 donâ€™t.
We have to figure the appropriateness of the information thatâ€™s being given, the funding thatâ€™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 taxpayerâ€™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 theyâ€™ve agreed to take up they now have â€œcontrolâ€ 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.
Shelley Berman asked someone
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 itâ€™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, sheâ€™s hearing.
SHELLEY BERMAN: What’s your name?
SHELLEY BERMAN: And youâ€™re Philipâ€™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, â€œHey look, this isn’t right.â€ 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 â€¦she wanted to know about my educationâ€¦ 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, â€œWow, it’s mighty white.â€ 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 cultureâ€™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: â€œJust look at it. Isnâ€™t it beautiful? Itâ€™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?â€
The people who make cochlear implants, that company have different cochlear implants in production and, theyâ€™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. Itâ€™s just from talking. Who verbally speaks better?
So they say 90%, 99% success rate, but itâ€™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?
Iâ€™m sorry, I insulted a parrot. I am so sorry to you parrot lovers out there.
Like Gigiâ€™s example, they went to one conference and they were saying, â€œOh, itâ€™s a 70% success rate.â€ And then she raised her hand and she got up and said, â€Those statistics is awful high with oralism. How many subjects are involved in this?â€
And they went, â€œAh hummmm ah, well, ah — six. Six peopleâ€
And theyâ€™re saying, â€œOh, seventy percent.â€ 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 thereâ€™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, hereâ€™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, isnâ€™t that sad?
Not only that but a lot of community colleges and universities now have American Sign Language programs. Itâ€™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 showsâ€¦.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.
Iâ€™m Adrienne Lauby. Thank you for listening.