Deaf community finds controversy with cochlear implants

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Nikki Buck sat in anticipation, smiling and joking with her parents about what she might hear. Her hopes were high, despite the doctors saying it could sound horrible at first. Or it might not work at all.

For a minute she heard nothing, not her parents’ voices nor, the doctor’s. Then, as the doctor slowly raised the volume, Buck lowered her head to her hand and began to cry.

Buck, a 32-year-old from Perth, Australia, began losing her hearing when she was about 18. She’d grown up in the hearing world with hearing parents, so it was a mystery to everyone as to why her hearing was deteriorating. Nearly 10 years later she decided to get a cochlear implant to help her hear once again.

A cochlear implant is an electronic device that essentially does the work for a damaged inner ear. Sounds are gathered by the device, sent to electrodes placed in the cochlea and are turned into messages that can be sent to the brain.

Consisting of both internal and external parts, the implant can help a person pick up and understand noises that devices like a hearing aid would be unable to detect. Unlike hearing aids, which simply amplify sound, the implant can pick up sounds that a damaged ear cannot.

“My doctor always kept me informed about the cochlear implant, but I wasn’t deaf enough to get one,” Buck said about her choice to get the implant. “When I lost enough hearing to become eligible, it was an easy decision because I didn’t think I could be much worse off than what I was with just hearing aids.”

A Cultural Attack?

It would seem that a technological advancement like the cochlear implant would be welcomed with open arms in both the hearing and deaf community. After all, it could allow a child deaf since birth to hear for the first time, or it could bring back old sounds that people like Buck once heard. But the cochlear implant has been surrounded by years of controversy.

Although experimentation with stimulation in the ear has been around since the late 1700s, stimulation of a deaf individual’s auditory nerve, which sends sound from the cochlea to the brain, took place in the late 1950s. The implant is now approved by the U.S. Food and Drug Administration for both adults and children.

So, what’s the controversy? Why would people be against something that is meant to help the deaf community?

One response is as simple as the old cliché, “If it ain’t broke, don’t fix it.” The deaf community sees itself as more than just a group of people with a hearing impairment.

Instead, it is a culture.

Just as the Chinese are proud of their Chinese heritage, or Hispanics celebrate their Spanish roots, the deaf community celebrates its culture as well. Sign language is not a coping mechanism, but rather a language just like any other culture would share. So, a technology like the cochlear implant, designed to help reverse a hearing impairment, can be seen as an attack on the culture of the deaf community.

The National Association of the Deaf says its stance on cochlear implants is based on its belief that “many within the medical profession continue to view deafness essentially as a disability and an abnormality and believe that deaf and hard of hearing individuals need to be ‘fixed’ by cochlear implants.”

NAD works to empower people in the deaf community and advocates for their equal treatment in society. They stress on their website that any individual with or without an implant has the same opportunities to be an active and successful member of society.

Whose Choice Is It?

But another controversy surrounding the cochlear implant involves choices, and who is entitled to make them.

The American Speech-Language Association states on its website children who have some sort of hearing impairment can experience delayed development, especially in language and speech. It also states the earlier the hearing loss, the more delayed development can be.

Since the FDA approved cochlear implants in children as young as two in 1990, many parents have taken the implant route in the hopes of providing their children with a better chance to develop, as well as with the opportunity to hear as other children do. In 2002 the FDA lowered the approval age to 12 months.

Denis Figlia, whose daughter Adriana was implanted at the age of four, said for him the decision was a no-brainer.

“The choice was made immediately, that if I could have her be a part of the hearing world, that’s was what I would choose,” he said.

Adriana is now eight, and Figlia said the choice to give his daughter the cochlear implant was absolutely the correct decision. While he said he knows some children are better off in a signing environment, the overwhelming majority of the people he has talked to see the advantage of the cochlear implant.

“The cochlear implant is much more effective at opening up the world to deaf people,” he said, acknowledging that this is part of the controversy.

“From my perspective, the cochlear implant has opened a world she would have been deprived of, like sounds of nature, music, other children, animals and pets.”

However, the idea that the ability to hear is an important part in a child’s development is a debated topic as well.

“Deafness does not cause developmental delays,” said Joan Macy, head elementary teacher at the Kansas School for the Deaf located in Olathe, Kan.

Macy said early intervention and access to a language will help children develop language and concepts at a rate equal to their hearing peers. She also said while a cochlear implant can be a tool used in an overall learning program, it is not a necessity in the learning process.

At the Kansas School for the Deaf, 18 percent of the children have received a cochlear implant. However, KSD still works to ensure that every child has a strong sign language base, a skill that Macy said compliments the English language as opposed to competing against it.

Macy said one of the more important aspects to focus on when it comes to the future of the deaf community is not on cochlear implants themselves, but how every deaf person, with or without the implant, is viewed in society. She said the cochlear implant is not impacting the culture of the deaf community as much as negative attitudes toward deaf people are.

“If you can’t hear or talk, then you are not equal. It is that attitude that must be changed,” she said. “We must recognize the strengths of deaf people and the magnitude of contributions they have made, and continue to make, to our world.”

Is it Worth the Risk?

Apart from the debate about whether implants can help a child develop any faster, there are also risks. There are the common dangers of anesthesia and surgery, but the FDA also lists many of the possible risks associated specifically with getting the cochlear implant.
Several of the major risks stated include injury to the facial nerve, development of meningitis, loss of residual hearing, inability to have some examinations such as MRIs and the possibility of implant failure.

While some people feel that taking these risks are something children should be able to choose for themselves, others say an informed parent should be able to make the decision as well.

Joanna Burk, a speech pathologist assistant from Midland, Texas, who holds a degree in speech, language and hearing sciences, said she believes this is something a parent should be able to decide for their child.

“Surgery to correct a cleft palate or lip holds similar risks, yet operating on a healthy infant with this condition is not questioned,” she said.

Burk said if spoken language development is the main goal, then a cochlear implant for a profoundly deaf child is worth the risk.

Mishka Zena, a deaf civil rights activist, said the age a person is implanted is vital to how well the implant will actually work.

“By the time the child is at an age when one can understand the risks and the benefits, the optimal oral benefits of cochlear implants would have expired a long time ago,” she said. “The child would benefit from environmental cues at the most.”

After receiving her implant, Buck said if she had been younger, she would have trusted her parents to make the decision for her.

“I have the benefit of hindsight now, but I’d be pretty disappointed if they made the decision not to implant me,” she said.

The FDA reported in April 2009, that about 188,000 people had received the implant all over the world. In the United States alone, 25,500 of the 41,500 implants were given to children.

Buck said she remembers just how she felt the moment her cochlear implant was switched on.

“I could not believe how awful it sounded. I was warned about how awful it would be but it was still a shock. I think I still had high expectations of it,” she said. “I think my parents thought they were happy tears because it actually worked, but no, I was horrified by the noise!”

But Buck said since that day things have only improved. She said she can talk on the phone again, an essential part of her job, she can understand conversations in the dark without the need to read lips and she feels so much more confident in social situations.

“The best part of having the implant is the effect on my self-esteem,” she said. “It improved immeasurably. I have lots more confidence in what I’ve heard in conversations, instead of doubting that I’ve heard the right thing. There are absolutely no regrets.”

While debate on this controversial issue has no end in sight, and there may be no right or wrong answer, stories like Buck’s will continue to be the driving force behind the hope that many people hold for a world one day filled with sounds.

 

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