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Cochlear Implants Redefine What It Means To Be Deaf

 
 
Reply Mon 9 Apr, 2012 09:58 am
Cochlear Implants Redefine What It Means To Be Deaf
by NPR Staff All Things Considered
April 8, 2012

There was a time when a child born deaf had few choices. For more than a century, the only option for parents was to send their son or daughter away to a boarding school for the deaf. There, the children and the schools thrived in the shadows, embracing a distinct culture of silent communication.

Recent advances in medicine and technology are now reshaping what it means to be deaf in America. Children who could never hear a sound are now adults who can hear everything. That's having a dramatic impact on the nation's historic deaf schools as well as the lives of people.

One of those people is 31-year-old Shehzaad Zaman, who was born deaf. Everyone else in his family could hear, and his parents worried — they wanted him to fit into a hearing world.

"My parents wanted me to learn how to speak and how to listen, despite not being able to hear," Zaman tells weekends on All Things Considered guest host Laura Sullivan.

He went to a special school at first, but in third grade his parents changed their minds. They sent him to therapy to teach him to read lips and moved him to his neighborhood school in Long Island, N.Y. He learned to play sports and make friends, but it was never easy.

"All my peers were able to use the telephone and have conversations in noisy restaurants, and it was getting harder and harder for me to have a conversation outside of one-on-one or one-on-two," he says.

The summer before his senior year, a small miracle happened. A new piece of technology, called a cochlear implant, was helping deaf people hear. Doctors surgically inserted an implant into one of Zaman's ears. He woke up and the world was an entirely new place.

"At that time, I didn't know what I was hearing. I was hearing so many different things that sounded so mechanical," he says. "It didn't sound natural to me. I was hearing the air conditioner, or running water or a bird chirping and I didn't know what it was, so it really took some time for my brain to process."

Zaman says he would have to sit in the backyard just to try to absorb all the sounds he could now hear.

More than half of all deaf children are now getting cochlear implants, and every year the number increases. One-in-four deaf adults also now have it, though it takes longer for adult brains to adapt to hearing sound.

For Zaman, it was practical as well as emotional. He wanted to go to medical school and he knew a doctor needed to hear.

"In medicine, it's not acceptable to hear 70 percent of information, because that can make a difference in terms of quality of patient care," he says. "So I was always trying to get up to 100 percent accuracy in terms of understanding the information."

Today, he is a physician in Sacramento, Calif., and last year he received a second cochlear implant in his other ear, bringing his hearing close to 100 percent. He says he no longer thinks about not being able to hear. Only in rare moments, if there's a lot of loud, competing noise, does he search for someone's lips.

"We live in a hearing world, a hearing society, and I was just happy because I could have much more ease in terms of communicating with people," he says.

The Cochlear Technology

Zaman is already on his fourth upgrade of the device. Dr. John Niparko, an ear specialist at Johns Hopkins Hospital, says there will likely be many more in the years ahead.

"Just like our cell phones [and] our laptops, cochlear implants are becoming smarter in terms of bringing in the most important sounds to the ear of the implant listener," Niparko tells NPR's Sullivan.

Experts say that while they know that 1 in 1,000 children are born genetically deaf every year, it's almost impossible to track the rate of deafness over time. Hearing impairment is a spectrum — and it changes.

So have its causes. Diseases like rubella, scarlet fever and measles that caused hearing loss have been all but eradicated with vaccines. But more premature babies with hearing loss are surviving. There also appear to be more children with autism, which has been linked to hearing difficulties.

What is certain is that more than half of the children who once were deaf — for whatever reason — can now hear. Niparko has performed hundreds of the surgeries, and calls the cochlear implant a remarkable technology.

"It can take in sound waves much like a hearing aid would," Niparko says, "but instead of simply amplifying those sound waves ... [it] can take that energy and translate it into an electrical code."

That code is then sent along a series of contacts placed next to the hearing nerve, and along with small packets of electricity, that hearing nerve is activated, thus re-creating the act of hearing, he says.

The implant works for the vast majority of deaf people, Niparko says, but unfortunately there is a socioeconomic divide that prevents the availability of the device for all deaf cases.

"The device itself is about $32,000 [and] the hospital costs and surgery adds about another $10,000 to $12,000 on that," he says.

With the invention and improvement of the cochlear implant technology, Niparko says all children born deaf and without other disabilities have the chance to be fully integrated into a hearing society.

So in the future, could deafness be a choice? To that, Niparko says, "We're already there."

The Changing Role Of Deaf Schools

For everything this technology has done for deaf people, it has created an uncertain future for deaf schools across the country.

"Deaf kids have changed, so I think that schools are going to have to change," says Dr. Richard Miyamoto, a former board member of the Indiana School for the Deaf.

More than 80 percent of children who are or were hearing impaired now attend their local schools. Just a couple decades ago, 80 percent of hearing impaired children attended deaf schools.

"In the past, we didn't have much to offer deaf children so they would automatically be in a sign culture and grow up that way," Miyamoto says. "That was comfortable, but when cochlear implants came along and there was something to be done, many of them were successful. So they ended up living their lives in the hearing world rather than the deaf world."

Miyamoto says the drop in enrollment has led many deaf schools to rethink their mission.

"So what deaf schools have done is brought in many more complex kids with multi-handicap situations, which is not part of their usual student population," he says.

Miyamoto says it's critical that deaf schools not disappear, especially for children who can't be helped by the medical advances.

"I think there is clearly a place for the traditional deaf schools because not everybody does well with the current tech," he says.

One such school that is adjusting to the changes is Kendall Demonstration Elementary School on the campus of Gallaudet University in Washington, D.C., the nation's premier deaf college.

The school once had more than 500 students, but that number has shrunk to 256. In 1975, Congress passed the Education For All Handicapped Children Act, which mandated all schools accommodate children with disabilities.

"The law said kids should be, to the maximum extent appropriate, educated in their home school with non-disabled peers," says Ed Bosso, who heads the elementary and high school at Kendall. "So people start there, and what often happens is kids fail their way into the deaf school."

These days, the school has found a niche helping students adjust to their implants before they leave for a traditional school.

"Even a kid who gets implanted, until that implant starts working [and] until they can listen to learn they have to learn to listen," he says. "So while they're learning to use their device, they're missing a lot."

The school is also now reaching out to children with multiple disabilities in addition to hearing loss. One of the more common is autism.

"We are seeing students that have additional disabilities at our doorstep, and people need to know how to serve them," he says. "So we're going to try to fill that gap and support people nationally in that."

It's a touchy subject for some at the school, Bosso says, breaking from decades of tradition and history. The change has already come, however, and this year one-in-five students has a second separate disability in addition to not being able to hear.
 
sozobe
 
  2  
Reply Mon 9 Apr, 2012 10:00 am
@BumbleBeeBoogie,
ARGH.

Bookmark because I'm just here for a minute. But an ARGH-y bookmark.
0 Replies
 
Baldimo
 
  3  
Reply Mon 9 Apr, 2012 03:02 pm
I'm of a mixed mind on this issue. My youngest son is deaf and also has an implant. He hasn't been using it in the last few years due to peer pressure from his classmates about wearing a listening device. He has just let my wife and I know that he wants to try using it again. I appreciate the deaf school he goes to and the ASL skills they have given him, but they have been reluctant to teach any speech or speaking skills. We have considered moving him to a regular school. It would be a blow to this community if the school failed so we are torn.
sozobe
 
  3  
Reply Mon 9 Apr, 2012 03:03 pm
@Baldimo,
That's really too bad about peer pressure.

How well does the cochlear implant work for him, when he uses it?
Baldimo
 
  2  
Reply Mon 9 Apr, 2012 05:44 pm
@sozobe,
That's just it, he hasn't used it in like 2 years. Once he started getting the pressure from his fellow students, he stopped wearing it. As of last week though he told us he wants to try again, so that means starting over with the maps. It a pain in the ass but I hope it will be worth it. I will keep you updated though if you are interested in his progress.
sozobe
 
  2  
Reply Mon 9 Apr, 2012 05:50 pm
@Baldimo,
I'm interested!

How did it work before he stopped wearing it, though?
Baldimo
 
  2  
Reply Mon 9 Apr, 2012 06:08 pm
@sozobe,
It was hard to tell. He is turning 12 at the end of the month. He could hear but I don't think his brain was used to hearing so it couldn't make sense of what each of the sounds were. Since then he has started to read lips better, and this has helped his speech a little. I can tell when he is actually trying to talk instead of just making noise out of frustration. He is known to cuss the wife and I out in gibberish when he's pissed. The other day I understood "****" and "damit". I tried so hard not to laugh but lost it. That only made him more angry because he didn't know why I was laughing. He didn't think it was funny. Oops!
sozobe
 
  1  
Reply Mon 9 Apr, 2012 06:25 pm
@Baldimo,
How long did he have them before he stopped wearing them?
0 Replies
 
JTT
 
  1  
Reply Mon 9 Apr, 2012 07:58 pm
Just a normal BOOKMARK.
0 Replies
 
ossobuco
 
  1  
Reply Mon 9 Apr, 2012 08:21 pm
@sozobe,
Listening, especially Baldimo.
0 Replies
 
sozobe
 
  3  
Reply Tue 10 Apr, 2012 08:02 am
@BumbleBeeBoogie,
OK, to respond a little more thoroughly.

I'll start here:

NPR wrote:
"I think there is clearly a place for the traditional deaf schools because not everybody does well with the current tech," he says.


This little quote, that appears well into the piece, is really the center of the whole thing.

Not everybody does well with the current tech.

Cochlear implants do not always work well.

I lost my hearing between the ages of 13 and 18, and have therefore been considered a prime candidate for cochlear implants for the past 25 years or so. I have both researched them thoroughly, keeping an eye on all new developments, and have talked to many, many people who have cochlear implants to get their firsthand views. I wish I had kept track of how many so I could be more conclusive, but I'd say easily over 100 people.

I am bilingual and bicultural. I'm fluent in ASL and am involved in the Deaf community. I'm also married to a hearing man, have a hearing daughter, and am very involved in my local (hearing) community. I lipread well, and still speak fairly well (people often don't know I'm deaf, even though I can't hear at all -- 120 db loss).

If I could simply take a pill that would restore my hearing, I would. I do not have the sorts of prejudices that are so often (and so patronizingly) employed to explain why there are any objections at all to cochlear implants.

I do know deaf people who would rather be deaf than hearing, given the choice. They get way too much attention in these debates, though. In the interest of trying to keep this post from getting ridiculously long I won't explain the episode of "House" that had me spitting tacks, and why. Suffice it to say, it concerns me that somehow cochlear implants have become seen as a "cure" for deafness.

That is not true.

They do sometimes work, and sometimes work well. That's why the "cure" thing has gotten any toehold at all.

What continues to astound me though is how little coverage or knowledge there is about how often they DON'T work.

Of the 100+ people I have talked to, not one has convinced me that I would be better off with cochlear implants than without.

I recently met a woman who came the closest yet. Cochlear implants are a technology that continues to improve, which is part of why my mind remains open. It's possible that at some point the technology will be advanced enough that I will go ahead and decide the benefits outweigh the risks. (And there are risks. More on that later.)

This woman, who I'll call Carrie, got hers a couple of years ago. She LOVES them, she says. They're amazing. She can hear so much.

I have met vanishingly few people who are this positive about cochlear implants. A good example of the kind of story I've seen more often is the woman who came to visit me in my office in L.A. after reading an article about my organization (a deaf services center). She'd lost her hearing late in life, then got cochlear implants. She did everything she was supposed to do -- trained extensively, etc. -- but they just didn't work. She was heartbroken, and descended into a deep depression. Her trek to visit me and ask for help was the first time she'd been out of the house in a year, except to buy groceries.

This is the kind of story I've seen again and again and again. The rule, not the exception.

So, Carrie. I was really curious about her experience and why she was so happy with them.

She talked about sound a lot -- she could hear this, she could hear that. I was curious about function. Well of course she still had to do a lot of lipreading, she said. Of course she couldn't understand her kids when they were chattering in the back seat of the car when she was driving. But she had to tell me this amazing story... one day after she'd gotten the implants she was laying in bed in the morning with her hearing husband and heard this weird noise. She couldn't tell what it was -- it kept startling her, but her husband seemed unconcerned. She eventually woke him up to try to figure out what the sound was. He didn't hear anything. THAT, she said, as she heard the sound again. Oh that, he said. It's birds!

This was her big success story. Not that she could communicate much better than she did before the implant, but that she could hear birds -- not that birds sounded beautiful, but that the startling, abrasive noise she heard was in fact birds, which she hadn't heard in a long time. (She also lost her hearing when she was young.)

This is what I often see. That the cochlear implants do wonders for NOISE, but not for COMMUNICATION.

That your audiogram looks great -- you can sense that a sound was emitted! -- but that you still have to labor to talk to strangers at a party.

Meanwhile, the conversation with Carrie included a third person who I'll call Nora. I was just meeting Nora and Carrie for the first time, they knew each other though. I said to Carrie that if I was confident that there would be absolutely no side effects from a cochlear implant, I'd be willing to go ahead and try it and see what happens... but that I know too many people who have suffered side effects.

Carrie talked at length about how safe it was. I noticed Nora was looking skeptical/ like she had something to say, and I looked at her. (The whole conversation was in ASL.) Nora said, "well, remember Linda." They then told me a sad story about a woman who had been perfectly healthy when she got cochlear implants but has had severe, debilitating vertigo since. To the point where she can't work anymore. She's just stuck at home. "Oh and then there's Mike," said Nora, as Carrie shot visual daggers at her. Nora went on to list several more people they know -- not that they like read about somewhere, but that those two knew personally. Carrie kept downplaying it -- "but Mike was better after a few years. I had to deal with that myself for a few months, but it got better."

Ugh!

And Carrie's current life just doesn't seem to afford more advantages than mine. I am lucky that I lipread well -- that doesn't mean that it's flawless (it's not) or that I don't have to work hard at it (I do). But from all accounts, people with cochlear implants need to work hard to communicate, too.

A whole other subset of people I know did get cochlear implants just to see what they thought. I think 100% of these people no longer use them.

So. That's my experience, thus far. My mind is still open.
0 Replies
 
ossobuco
 
  2  
Reply Tue 10 Apr, 2012 07:37 pm
Thanks, Soz. I've remembered there are plenty of negs, so the NPR article seemed undiscerning to me.
0 Replies
 
 

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