Wednesday, June 26, 2013

Deaf Boy Hears Dad for First Time - Is It Right or Wrong?

If you are on Facebook, you may have already seen this video, but if you haven't seen it - you should. Imagine being three years old and hearing a sound for the first time. And that sound is your dad's voice. (You can watch the video here.) The look of amazement on his face is priceless.

Grayson Clamp, the boy in the video, is one of the first children to receive a new type of implant that helps the brain hear sound. He had been fit earlier with a cochlear implant, but without the necessary nerves for the implant to work, he was not able to benefit. This newer type of implant Grayson received has been around for a while for adults, but only recently was approved for a trial among children.

There is debate among the deaf community about this procedure. I worked with hearing impaired children in the early 80s and I learned of the debate then. There are many who feel that the push to have deaf children hear can be damaging, that by trying to "fix" them, society is teaching the children that there is something wrong. There are some groups in the community that are vehemently opposed to teaching deaf children how to lip read and speak, if possible. Yet there are some in the community who equally opposed to sign language, while others say it is the only way to go. And now that helping children hear has gone beyond external approaches (lip reading and signing) and gone to invasive procedures (implants), the debate is even stronger.

When I was younger, I often thought that being blind would be the worst disability in terms of losing a sense - but when I worked with the hearing impaired, I learned that when you can't hear, you are so isolated from the rest of the world. You can't hear the person behind you on the bus saying "excuse me," has she tries to pass. You can't hear the warning sirens nor cheers of joy. You can't communicate easily with the hearing world. So while I can understand that some people may not want the children to feel they are broken and need to be fixed, I can't understand why some people would want to restrict their children to a world where they can only communicate with others who can sign.

What do you think? Are we going too far in trying to help children with no hearing gain that sense? Or should we continue to do what we can to give the children what we can?


Anonymous said...

As an adult with adult onset mild hearing loss, I can tell you that it is both isolating and exhausting to have even diminished hearing. Hearing is not just about being able to participate in human conversation, so signing and lipreading will always leave children without the ability to comprehend musical communication (of things that words can't express), the sounds of nature, and many other sounds that the hearing community takes for granted. I say push science forward and give people a choice to balance the risk and rewards.

Jennifer Fink said...

I think that we need to let the medical science advance and support families as they make decisions. There is no right or wrong here; there is only the decision that best serves that patient's goals while respecting his/her values.

What I also think: we as a society are too likely to grasp onto individual decisions and make them a group cause, and I think that's wrong. If I undergo a mastectomy, I may opt to undergo reconstruction. Or not. Either choice is OK and medically appropriate, and my choice, one way or the other, should mean nothing to any larger group. It wouldn't mean that all women should refuse reconstruction, and it wouldn't mean that all women should get reconstruction. As a human and a healthcare provider, I believe we need to provide information and support so individuals can make the decision that's right for them.

DaveJ said...

I have heard the arguments against cochlear implants, lip reading, etc. And I disagree with them. If you had a child with scoliosis, you would have it fixed, because it's broken. Same with a treatable hearing loss. You don't blame someone for it, but it is a disability.
@Jennifer, I don't think this is truly analogous. In the mastectomy, it's an adult making a decision, and rightfully so. In the case of implants for a child, the parent is deciding something that will have a profound effect on the child's entire life.