Bev Biderman wrote “Wired for Sound” about her experience receiving a cochlear implant. It was first published in 1998 and updated in 2016. She is not the only person who wrote about the experience of receiving a cochlear implant but her book has something that is quite unusual. Last week, her book was performed as an opera in Lisbon, Portugal titled TMIE: Standing On The Threshold Of The Outside World. Quite amazing – an opera about deafness. Surely a first! The photo shows Bev with composer, Carlos Alberto Augusto, and the soprano, Marina Pacheco who played both Bev and the 19th century Harvard deaf astronomer, Henrietta Leavitt. (Leavitt made discoveries which Hubble later claimed as his own).
Bev’s book has been well received and she reports that parents find it very helpful. The book is a description of Bev’s experience about having a moderate hearing loss in elementary school, requiring lipreading, to a profound hearing loss by the time she was a teenager. As an adult in her 40s she had the opportunity to take advantage of new technology and received a cochlear implant.
Receiving a CI
The book discusses Bev’s experiences, her goals in being able to hear and what happened after wards. Her goal was to understand speech better, to enjoy music which she had not been able to do for many, many years. Bev discusses how she never considered using sign language. Her community did not sign. She would not have been able to communicate with those she wanted to communicate with using sign. Her description of that first cochlear implant will be familiar to those of us who were involved in implants many years ago. It was not one of those small speech processors that fit behind your year. It was a big grey box that was described as the size of a cigarette case but, in fact, it was larger.
Learning to use the sound
Bev talks about learning to use sound. She, and others who she quotes in the book, talk about what she is hearing and how it takes time to learn to listen. She describes when she could first understand speech without looking at the person talking. Bev describes what I have heard from other adults who received implants. She listened to sound around her and for the first time heard waves and birds and children. She then removed her CI and tried to listen with her hearing aids and found herself in silence. Bev has a very nice chapter about learning to hear with quotes from lots of others. She talks about listening to children’s books (Make Way for Ducklings – one of my favorites). Some talked about learning to play music again.
Hearing with your brain
Bev reminds us that we hear with our brain, not with our ears, and how by providing sound stimulation we are capable of developing neural brain pathways. Parents of young children talk about how their children who received CI’s as infants, learned early to listen, and “graduated” from therapy because they could use hearing to learn.
Deciding on a CI
Bev talks about what it was like as her hearing deteriorated. She talks about the problem being cut off when something got in her eye and she could not see, about problems communicating with friends when she could not use the phone, about living in a hearing world without hearing. She talks about how her hearing loss and that of her father’s caused sadness for her mother and about how her sister played the role of caregiver. She talks about her husband and how he also had the caregiver role because of her hearing loss. Bev talks about how different all this is for children who receive implants as infants and young children and who feel part of the hearing world, who hear all the time and who understand the world. Do they actually hear everything all the time? No, noisy places can still be difficult, but they do not feel the way Bev felt – cut out of the world around her when she could not hear.
Deafness and the Deaf Community
Bev talks about how cochlear implants are a lightening rod for the deaf community. The reason is clear. Those for whom this is a lightening rod grew up at a time when technology that could help you hear was limited. They could not count on hearing and were isolated from the hearing world. They were more comfortable in the deaf community. Everyone signed. Many lived in homes where parents did not learn to sign so they were isolated even at home. As I have said multiple times, “it’s not the same old deafness.” With the technology that is currently available, babies and kids can hear and learn thought their ears. They can develop speech and language which will offer them the opportunity to be anyone they want to be. If they want to learn to sign they can do that too. But, unfortunately, they need to learn to listen first. Once they have developed spoken language, they can go wherever they want to go.
Bev talks about how some members of the Deaf community do not believe that children should receive cochlear implants. She reports on one deaf woman who, through a sign language interpreter, expressed that if she had a hearing child she would find some way to make him deaf. She reports that the National Association for the Deaf said at a conference that if they had been involved in the FDA decisions about cochlear implants they would have discussed the value of staying deaf. She also talks about the literacy levels of children who use sign: 3rd or 4th grade. Not good for employment in today’s economy.
And today?
Bev talks about how things are different in 2016, compared to 1998 when she first wrote about cochlear implants. Implants continue to improve. People are getting implanted earlier, and the devices have better sound quality so that both children and adults are learning to hear more quickly. Things are so much better. Doors are more open. Hearing is a possibility. A great one. Use it – perhaps at the opera!
