ABC: Deaf and Proud

Deaf and Proud to Use Sign Language

Many Refuse Cochlear Implants and Other Medical Advances

By SUSAN DONALDSON JAMES and GRACE HUANG

 (National Technical Institute for the Deaf at Rochester Institute of Technology)

Dec., 12, 2006 — Lizzie Sorkin was born deaf to deaf parents, but when she reached high school age, her mother asked her whether she would consider the latest medical technology had to offer — cochlear implants to restore some of her hearing.

Lizzie

Sorkin, now 25, refused and in doing so, set a bold path in establishing her own identity.

“I am deaf first before being a woman, before my faith, my sexual preference, my interests,” said Sorkin via e-mail. “I didn’t see my deafness as a problem. I didn’t need to be fixed.”

She is currently a student at the National Technical Institute for the Deaf (NTID) in Rochester, N.Y..

Sorkin’s attitude is a strong voice that is emerging in the national deaf community — deafness is not a disability, but a way of life that does not call for medical intervention, but rather reinforcement and pride.

About 32.5 million Americans are deaf or hard of hearing, and that is all they have in common.

They represent a wide spectrum of ages and stages — those born profoundly deaf and others who suffered hearing loss as a result of illness or age.

Two to three in 1,000 babies born in the United States have a detectable hearing loss.

About 600,000 to 650,000 of the deaf population are profoundly deaf, according to the National Institute on Deafness and Other Communication Disorders.

Last month, students at Gallaudet University, the nation’s premier liberal arts college for the deaf and hard of hearing, toppled President Jane K. Fernandes for an array of grievances — including the fact that she was not “deaf enough.”

Their victory solidified the university’s commitment to sign language and set the stage for a more aggressive deaf pride movement.

Many who are deaf are eschewing new medical advances like cochlear implants and sophisticated hearing aids in favor of preserving the traditional bonds they feel with others who communicate by signing.

A small, but growing number of deaf parents are even intentionally using embryonic genetic testing to ensure that their children share their deafness.

“I was born deaf, and I believe that I should just leave it the way it is,” said Lisa Velez, a 20-year-old who also attends NTID at Rochester Institute of Technology, the second-largest American university devoted to the deaf.

As other minorities like blacks, women or gays have historically felt the need to find commonality, so have the deaf.

Experts say there are two camps: those who view their world as pathological — deafness as a disability to be overcome — and those who revel in the cultural aspects of deafness, using sign language and sharing a set of values.

Sorkin grew up using sign language to communicate with her family.

American Sign Language, now considered a world language and the third most frequently used in the United States, is a nuanced and visual language that encompasses many dialects and grammatical structures.

Although American Sign Language may see some decline in coming years because of improved hearing technologies, it is gaining popularity among parents who want their babies to learn sign and among hearing college students taking ASL for foreign language credit, according to Jamie Berke, a graduate of Gallaudet.

“Deaf people who can hear with hearing aids or cochlear implants may need sign language to help in closing communication gaps,” she said.

Sorkin is the first deaf president of the student government at the larger Rochester Institute of Technology, where 1,100 deaf students are mainstreamed among the 15,300 that attend the university.

“I was born with deep roots, and I wanted to honor that,” said Sorkin, who is earning a master’s degree in student affairs and hopes to make documentary films for the deaf.

“I cannot imagine being hearing. Because we are a minority, we come together. To be away from that support system is so hard to endure,” she said.

Like Sorkin, only 10 percent of all deaf children are born to families where one or both parents are deaf.

Ninety percent have parents who are not deaf or hard of hearing.

With the advent of screening laws for newborns, parents can now learn early on whether their children are deaf, giving them the opportunity to make early decisions about education, support groups, and learning sign language.

Some choose the medical route.

According to federal data, nearly 22,000 adults and nearly 15,000 children in the United States have received cochlear implants.

The technology behind the implants is completely different from hearing aids, which amplify sounds.

Implants convert sound into electrical impulses that directly stimulate the auditory nerve. The brain, in turn, interprets these signals as sound; implants do not restore normal hearing. Intensive postsurgical therapy is necessary to learn or relearn the sense of hearing.

Angela Earhart, a deaf OB-GYN from Galveston, Texas, who is pregnant with her first child, is keeping an open mind about implants.

She learned to sign and speak at the age of 2.

Although she has not ruled out cochlear implants for herself down the road, for now, she said, “I am comfortable with who I am, and I’m afraid of losing who I am.”

Earhart has also thought about what the future holds for the baby she is expecting in May.

If the child is deaf, she will wait to address the question of implants until the child is old enough to participate in the decision-making.

“I don’t perceive being deaf in a negative way,” she said.

At home, Earhart communicates with her hearing husband by signing and speaking. At work, she relies on her sign-language interpreter.

Meanwhile, half of Earhart’s patients are Hispanics who need an English-Spanish interpreter, resulting in four-way communication that she takes in stride.

Christopher Lehfeldt, who was born profoundly deaf to hearing parents, has made a different decision.

He, too, was not diagnosed until he was 2 years old, and his parents got him hearing aids and taught him to read speech. It wasn’t until Lehfeldt was in his early 20s that he learned to sign.

Today, at 45, Lehfeldt has a thriving business as a dentist in the deaf-friendly community of Rochester, where an estimated 20,000 to 90,000 of the 1 million residents are deaf or hard of hearing.

“I don’t label myself as part of any group,” Lehfeldt said. “I regard myself as being bicultural, bilingual with my deafness. Being a challenge or disability that makes life interesting for me.”

Two years ago, Lehfeldt decided to undergo cochlear implants, a vast improvement over the two hearing aids he had struggled with all his life.

“It’s far better than the itchy ears, ear molds shifting shape all the time causing feedback,” he said. “I can hear so much more, especially higher frequencies. I had to learn how to hear, literally for the first time, like a baby, when I got activated.”

He believes cochlear implants are “just another tool in the arsenal for better hearing that helps with full inclusion in the mainstream.”

But, Lehfeldt said, “No one person speaks for the deaf.”

His patient Tom Rickey, who works as a writer at the nearby University of Rochester Medical Center and has been treated by Lehfeldt for 15 years, has only praise for the dental care he has received.

“When I first went to him, I had this fear that he wouldn’t know if I was in pain — no matter how loud I might yell, he wouldn’t hear me,” Rickey said “But he has been a great, wonderful, kind, sensitive dentist, and my teeth are much improved, too.”

Rochester has become a mecca for deaf professionals like Lehfeldt.

Rickey’s Catholic priest is deaf, and the newspaper has a reporter who covers the deaf community.

Six doctors, as well as a veterinarian and two lawyers, are deaf and serve both hearing and nonhearing clients.

Many retailers sign and have Interpretype machines; movie theaters have open-captioned movies.

Much of the reason the city has been a model for integration between the deaf and the hearing is that it is home to the National Technical Institute for the Deaf, which was established by a federal grant in 1965 to provide a need for technical higher education.

With the technology school, there is also a cochlear-implant center, and about 200 of the 1,100 deaf students have the devices.

The institute is a pioneer in the use of video, CD, DVD and Web streaming so those with hearing loss have constant access to communication and information.

With several hundred videophones in dorm rooms, classrooms and offices, faculty, staff and students can see each other and sign directly.

The university also provides C-print, a speech-to-text transcription service, in classrooms so students with hearing loss can read what the professor is saying in real time, as well as 122 full-time interpreters.

NTID director Alan Hurwitz finds himself right in the middle of the debate on deaf culture.

Born profoundly deaf to deaf parents, with one grown child who is hard of hearing and another who is deaf, he has watched the evolution of the deaf culture.

The 64-year-old feels the emotional tug of memories of his all-deaf home, but he also knows that technological advances have helped level the playing field for deaf and hard-of-hearing people.

Deafness is a “nonissue,” according to Hurwitz, with computers, Blackberries, instant messaging, videophones, and real-time speech-to-text captioning, allowing deaf people to participate immediately.

“Some of us grow up using sign. Others elect to have cochlear implants,” he said. “They are all proud to be deaf.”

Copyright © 2006 ABC News Internet Ventures

http://abcnews.go.com/Health/story?id=2719254&page=1&CMP=OTC-RSSFeeds0312
 

Commentary:  I have no problem with other deaf adults who want to get cochlear implants.  The person is entitled to decide what s/he feels best for oneself without personal judgement from others. Many still see the move to have a C.I.  a rejection to one’s deafhood and the deaf community. I feel that we retain the inner deaf identity, whether we wear auxiliary aids, including cochlear implants, or not. Many deaf people already wear hearing aids and eventually more and more will try cochlear implants.  Personally I won’t go for a cochlear implant for personal reasons, but it has nothing to do with my identity as a deaf person.

12 Responses to “ABC: Deaf and Proud”

  1. IamMine Says:

    Thanks for your comments, elizabeth – that was one of the wonderful feelings I felt when “coming back” to the deaf community during the UNITY period, even though I still had deaf friends in “close circle” but not outside.

    I’ve said over and over, it wasn’t to “fix” my identity. I still feel and view myself as deaf.

    I totally respect those who do not want CI and I would NEVER tell them to go for it. I would only share my experiences if they wanted to know.

    But I am seeing more and more attacks lately and that could easily turn me off and stay out of the deaf community – even though sign language is my primary language. I also think this would hurt the hearing parents of CI children – not wanting to teach them ASL because of the attacks. We need to promote ASL with positive attitude. It’s really very very important.

    Well, anyway, that was a great article, covering different views with respect.

  2. RLM Says:

    I personally do not have any problems with any deaf adults getting hir CI at their own expense (paying out of their pockets), but vermently oppose the parents of deaf youngsters to “frankstenize” their offsprings in mold of themselves. Likeness and societal conformity for the sake of image perfection.

    I strongly oppose the public fundings or private insurance coverage of CI surgery among deaf youngsters and adults at the expense of taxpayers’. We have enuff problem with the costly health care problems.

    Being deaf is not the matter of life and death. CI surgery is a real luxury which have to do nothing with survival to breathe air and drink water.

    Why not the private foundation or organization devote to the funding of CI surgery among deaf adults? Not at the taxpayer’s expense!

    Many state Medicaid agencies cover the expense of CI surgery on deaf youngsters. That is totally unacceptable!!

    Why the state Medicaid agencies refuse to fund the digital hearing aid (removable device)? Ugh!

    Many deaf people were denied the request for TTY within the state VR rehabilation in the 90s. They need the TTY for the job search and necessity of life – emergency calls for amublance and other things.

    The cost of CI surgery within the expense at taxpayers only benefit very few deaf youngsters and adults as compared to the $100K finanical equalivent spending on textbooks, classroom supplies and salaries of the educators of the deaf youngsters.

    $100K for one deaf person (the cost of CI surgery and speech and auditory distinction training) vs.
    $100K for 30 deaf youngsters and salaries for three educators of the deaf.

    Robert L. Mason (RLM)

  3. Deaf Progressivist Says:

    This article shows a variety of opinion among the deaf community and thank you for posting. Let me share mine if you will.

    I have two young deaf children and it have not occurred to me to consider them having C.I. at any point.

    About 7 years ago, my son had a class of 12 students during nursery program at a school for the deaf and half of them got their implants around the age one or two. These hearing parents of my son’s classmates eventually withdrew their children from the ASL environment and transfered them to a total inclusive mainstreaming programs.

    They barely get to have interactive experience in an ASL immersed environment where they are not able to be exposed to deaf role models.

    From time to time, they visited my son and based on my observation, they are able to speak fairly well but struggle to comprehend to read and write. I strongly believe the cause of this struggle was that they were not given the opportunity to analyze the grammar structure between ASL and English.

    I am not questioning about the effective of C.I. technology but the attitude among hearing parents who shunned their children away from ASL learning environment.

    Barb

  4. wolfers Says:

    It reminds me of the movie “Sound and Fury.” Actually do you know there is a sequel to that documentary? “Sound and Fury: Five Years later.” In the end the little girl got CI, family returned to Long Island, and it is more segreated up there. Sad story.

  5. BEG Says:

    I just don’t get it. I think it’s great she made her choice; I think it’s great if someone else makes another choice. Because I don’t think it’s all about *which* choice a person makes, but about choosing what one wants best for oneself — we should *all* be so lucky.

    I’m particularly annoyed by this fatuous comment: “Experts say there are two camps: those who view their world as pathological — deafness as a disability to be overcome — and those who revel in the cultural aspects of deafness, using sign language and sharing a set of values.”

    As long as knuckleheads keep trying to divide everyone up in two camps, it weakens all of us. There is a third way, that embraces everyone and stands together stronger than separately.

  6. The One and Only Ridor Says:

    What? Elizabeth you got it wrong. To have CI does not mean that you reject Deafhood!

    Get educated, please.

    R-

  7. Mishka Zena Says:

    Iam, I agree. Many C.I. people are already in the Deaf Community.

    Barb, yes, a lot has to do with the attitudes of the parents. It’s really too bad the parents took their kids away from ASL when they need ASL to help master English

    Julie, I haven’t seen that movie yet. Did you?

    BEG, Some people are still behind the news that many in deaf community already have C.I.

    Ricky, read it carefully because you misunderstood what I said.

  8. The One and Only Ridor Says:

    D-oh! Thanks for correcting me — I need to read SLOWER!

    Cheers,

    R-

  9. Katherine Says:

    Barb:

    I agree with you. My childhood/good friend, who has two young deaf children, had a similar experience as you.

    Those CI deaf children’s parents at her school kept asking my friend how did her children be so bright whereas their children are delayed and not responsive linguistically.

    Even one of the instructors, who are part of CI program, admitted to my friend privately that her children are up on par to their hearing counterpart their age intellectually, linguistically and socially. It is sad because it’s money that kept them quiet from telling parents truth.

    Imagine how many of them who fell through the crack if they were outside a deaf school without ASL role models.

  10. Mishka Zena Says:

    Katherine, they should publish an article on this in deaf education journals. It’s really too bad that they are sweeping it under the carpet.

  11. Ella Says:

    Critically examining that article…the main problem I believe in that article is the word “deafness”…that’s what makes my stomach churn when media people outside the Deaf world try to describe us. Again and again, I read articles written by people outside Deaf world…no matter how well intending they are, they just do not get it, or do not know how to write things right if they do get the gist. They think they write a “balanced” view of Deaf people. No they didn’t. This article is obviously (although probably unintentional) a mockery of us Deaf people who take pride in our identity and Sign language.
    The bigger problem is their motivation which is seeking fame and wealth off us, our issues, and our bodies.
    CI is a huge money making industry. They even have stocks! The people involved focuses on making profits and they keep on pushing the profits higher and higher. The more Deaf people being implanted and the sooner, the more money they make before the stem cell industry comes in. They do not care about the impact of being implanted has on our emotions, our relations with other Deaf people, our jobs, our self identity. No, they only focus on how much benefit of “hearing” we get (thus more money in their pockets and awards for their fame and success).
    Where is our accountability to our ancestors and our children?! We need to ask ourselves “How have we created our world now to honor our ancestors’ fight to preserve Sign Language and ensures every Deaf child’s right to fluency in Sign Language and healthy self identity that calls for our own “village” where Sign language is the primary and respected language? How have we ensured that all the financial aspects related to our physical condition and our language stays in the Deaf community among Deaf people?”
    We cannot realize the reality of millions and millions of dollars that are siphoned out of our ears and say “oh that is ok if all of us are implanted. After all it is a wonderful choice each of us can make”…WE should all be angry at being exploited (even if it did “benefit” us). We should resist this practice and every practice that exploits us including underqualified interpreters, teachers with lousy signing skills, denying us our academic study of ASL. Those are what we need to fight against.
    We need to also practice critically examining how media portrays us.

  12. IamMine Says:

    MZ – I agree they should do MORE study on the CI kids who do not have access to ASL. Someone has to be neutral on this project – otherwise that person is at risk for being pro or anti on either side.

    ALSO compare them with deaf kids with ASL in a GOOD education program (I notice they study on poorly educated deaf kids due to lousy quality of education or skills of teachers, etc).

    This would provide a good argument, don’t you think? I think this would change a lot of opinions amongst the parents who make the decisions whether to implant their children or not.

    This needs to be documented – not hearsay. Too many of that, I think.

    Ella – I DO realize CI industry make tons of money – and they DO have a “better” support (I quoted better because they can afford to offer that) where parents or CI folks can contact for ANYTHING, or even to visit them prior to their CI surgery.

    I know, because I was offered that and I requested that someone of my similar background to meet with me.

    Now, if the deaf community had this type of support (if they do, then it needs to be promoted more), visiting parents of deaf babies to talk about ASL, various resources, education, etc. But this has to be done in respect. The visitor I had did NOT tell me that I should go for CI. All that person did was providing me her experiences with CI – both negative and positive.

    I also want to say what a lot of parents of CI kids (from what I’ve seen anyway) that they KNOW their child is deaf and want to provide “opportunities” that they felt was not found in current education system. Many did not show satisfaction on the quality of education for the deaf.

    We DO have a lot of work to improve the image of the deaf community, ASL, education, educating the public, etc.

    We cannot afford to fight each other in the community – regardless of their backgrounds – and make this work.

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