Deaf community does not always accept implants

From: Council Bluffs Daily Nonpareil, IA
Nov. 25, 2002

BRIEN T. BOYCE
Staff Writer

Editor's note: This is the second in a two-part series.

Cochlear implants are not restricted to young people. Jody Bethards, now in her 40s, got her cochlear implant in April 1993. She, like Nic Upchurch and Lauren Wellman, is profoundly deaf but was of the age where she decided herself to get the surgery.

"I wanted to hear music, and I wanted to hear things," she said.

Before the surgery, Bethards wore a hearing aid and said sounds were usually muffled and hard to disseminate.

"I'm starting to identify some words, and I can understand more of what people say now," she said. "I'm picking up more words here and there."

Some students are aware of the risks and ridicule involved and still want a cochlear implant. Senior Susan Haynes said she feels left out when trying to communicate with her seven brothers and sisters.

"My youngest brother is starting to learn how to communicate," she said, "and it's hard not being able to communicate with them."

Haynes said her mother is against the implant, while her stepfather supports it. She has worn both digital and analog hearing aids and is not satisfied with the end result from either.

"If I don't do anything to help myself, I'll be upset with myself later. If I destroy my hearing, I don't think it will profoundly affect me," she said.

Criticism from other members of the deaf community is also a drawback. Upchurch said he dealt with more criticism from the deaf community than from those with hearing when he came to ISD.

"Some people here started calling me 'machinehead,' ?metalhead,' or would tell me I needed to re-charge my brain.

"A lot of students here are against wearing the implant. The deaf people know what a cochlear implant is, but hearing people don't know what a cochlear implant is, so they'll ask about it and learn about it. But the deaf know what it is, so there's more insult involved with that."

While not critical of those who have a cochlear implant, junior Katie Romey is vehemently against getting one.

"I'm very against it," she said. "I would not like having a piece of metal being stuck in my head. Besides, God made me the way I am, so I'm not going to get surgery to change anything."

Romey, who has between 60 and 70 percent hearing loss in both ears, personally considers the surgery too big a risk.

"Scientists and researchers didn't conduct enough experiments before they just did it on a person," she said.

Wellman said she enjoys her cochlear implant and being able to hear sounds. Unlike Upchurch, she has not endured any negativity from her peer group.

Bethards, a counselor in ISD's girls dorms, received a mixed reaction from the deaf community.

"Some members of the deaf community do not consider me to be a deaf person, simply because I did not graduate from the Iowa School of the Deaf," she said, even though she did attend ISD at one point in her life.

"Some have asked me why I did it - 'Aren't you proud of being deaf?' My feelings of being deaf is probably different from the majority of the deaf community. To them, it's part of who they are. To me, it's a handicap, and that's how I look at it."

"Many of my friends support me," Haynes said. "For themselves, they say no, but they support me and whatever decision I make."

Despite the drawbacks, Upchurch said he may wear the cochlear implant again.

"After I graduate, I'm going to be around hearing people again," he said. "So maybe I'll use the cochlear implant again to improve my communication again."

Should he decide to wear his implant again, Upchurch would take the device to a medical facility that specializes in cochlear implant technology, such as Boys Town, where a technician would readjust the sound levels in his processor during a procedure called mapping. Once adjustments are made, the implant would be refitted to his ear and become operational again.

Upchurch wants to bridge the gap and exist in both deaf and hearing worlds.

"Most deaf people think that you should be with the deaf community and not be with the hearing community. My family is hearing, and I want to learn both, I want to learn how to communicate with the deaf and hearing."

For students who wish to get the implant, Upchurch would share with them what he felt during the time when he wore his implant.

"I would just inform them how it feels. I'm not going to tell them yes or no. I'll just them them what I feel, that way they can make up their own minds," he said.

Romey knows deaf students will continue to get the cochlea implant, and encourages parents to wait getting one for their child until he or she reaches a certain age.

"When the child reaches that age, then the parents can talk to them about it, and they can decide if they still want to get it."

As an audiologist with the Loess Hills Area Education Agency, Jennifer Bakkerud said her biggest concern is that people - both the family and the individual getting the surgery - need to be completely informed of life following the surgery before they go under the knife.

"I think they think that the kid is going to automatically be able to talk, and that's not the case," she said. "I don't think they understand the degree they need to be involved. They need to know they're going to be investing a lot of time and energy into the rehabilitation process if they want it to be a success."

Bethards said the choice should ultimately be up to the individual who will get the cochlear implant.

"I think it's about the individual, and what they want. My first question is, 'Why do you want one?' Many times I hear, 'My husband wants me to have one,' or 'My family wants me to have one.' I tell them I don't care what they think, I want to know what they think.

"I tell them it is not an easy thing to go through. I don't think I'd be willing to go through it again. You have to think about all the (speech) therapy, and the six weeks of recuperation. You have to want it really bad, and for the right reasons."

©2002 The Daily Nonpareil. All rights reserved.