Back in the early 80’s when I was first learning about cochlear implants (CIs), I was dead set against them. I heard they made voices sound like Donald Duck, and I thought it would be cruel to force children to hear like this. I thought embracing American Sign Language and being a part of the Deaf Community made more sense. Fast forward a few decades (yes, I said decades). I finally meet and become friends with people who identify as hard of hearing, people who use cochlear implants, and people who rely on amplification, technology, and speech reading to communicate in their day-to-day lives. These are people who might respond, “Why would I learn sign language? I don’t know anyone who is deaf!”
Not surprisingly, I found out many of the assumptions I had made over the years were wrong. Now I strive to make sure service providers and students in our programs understand and respect the communication choices of anyone with hearing loss, recognize the benefits and limitations of those decisions, and understand the accommodation needs people will still have in different environments.
There is a new video that goes a long way to help people understand both the benefits and the limitations of cochlear implants (thank you Cassie Franklin of pepnet 2 for sharing this!). Hearing…but not as you know it. Helen Willis lost her hearing to meningitis when she was 2 years old. When she was three, she had cochlear implant surgery. (This was about 18 years ago, so the pictures show her with a partially shaved head and a very large scar. Current procedures require a much smaller incision.) Helen provides an honest view of what her life with a cochlear implant is like, how much of a benefit it is to her in so many situations, how she continues to use sign language in some situations, and how she is still left out in other situations. She talks about still needing accommodations in her college classes, something many fear will be taken away from them because they are not seen as “disabled enough” with the cochlear implant.
The video includes a really nice animation and explanation of how a cochlear implant and the hearing mechanism works. More than this, the video includes simulations of what speech, speech in noise, and music sound like through a cochlear implant. This was the one part of the video I was concerned about. The sound is so limited, it is a challenge to understand how hearing this would be beneficial. I didn’t want people to get the wrong idea and misjudge the benefit of cochlear implants. I checked with audiologists at the Oregon Health and Science University Cochlear Implant Program to find out about the accuracy of this part of the video. I was told that it is actually accurate, but that the difficult part to communicate is that people perceive sound differently, and thus will have different reactions or results from cochlear implants.
This is an important concept, and I found I was falling into the same trap I warn others about. Perception refers to how a person assigns meaning to a certain sound or combination of sounds. Cochlear implants generally accomplish what they are designed to do: they stimulate a nerve that relays auditory information to the brain. When a person gets a cochlear implant, he or she must go through a learning process, pairing sounds with meaning and source, until the brain learns to connect the new pairing. Implantees might start by listening to children’s books while following along with the text, and then move to more complicated and faster paced speech. This is the reality of what we mean when we say CIs do not magically restore normal hearing. It’s an excellent video (under 10 minutes) and is open captioned. I highly recommend it.
Other Experiences with Cochlear Implants
If you are curious about what the real-life journey to hearing with a cochlear implant in real-time might be like, Wendy Harbour, a recent implantee, has just started her blog Wendy’s World: Adventures of a Deaf Disabilities Studies Professor. As she is learning to use and getting accustomed to the new sensations, she describes sounds she enjoys, sounds she doesn’t enjoy, and the ups and downs of dealing with her own expectations and those of others. It is really a delight to read.
One of my favorite books about CIs is an older one now, called Wired for Sound by Beverly Biderman. She does a magnificent job describing being a child, adolescent, and then adult with a progressive hearing loss and its impact on her life. She provides in some chapters reviews of the research about the success rates and outcomes for people getting CIs (information she was using to decide whether or not she wanted to go this route). I enjoyed, in particular, the chapters where she describes how the dynamics of her relationship with her husband and children changed as she became more independent with her hearing.
Another interesting documentary is the HBO special Hear and Now. This is the story of a very dear couple in their 60s who both get CIs. I would not have expected that they would be candidates for CIs, since they had both been deaf since childhood. The documentary doesn’t address how they became candidates. The woman is just curious about sound, and noticing how other people and animals respond to something she does not hear. Her husband seems to get the implant mainly to go through the experience with her. Not surprisingly, they don’t respond positively to hearing sound, don’t embrace the technology, and rarely tend to use their CIs. From the wife’s perspective, it is not at all what she expected. The filmmaker is their daughter, and the father was one of the inventors of the TTY.
The Medical Model/Cultural Model Miasma
It is common for both deaf and hearing individuals to expect that when a person receives a cochlear implant they become “hearing” or have normal hearing restored. The assumption on both sides is that the individual will no longer have a hearing disability and won’t need to sign. From the Deaf perspective, though, this isn’t a positive statement about removing a disability and the need for accommodations, but rather a negative one about losing or rejecting one’s Deaf identity (let alone how the magical thinking ignores the reality of life with a cochlear implant). Sound and Fury is one famous documentary following the families of two deaf brothers as one decides to have his child implanted and the other decides against it. It shows at a very raw level how the Deaf community and their families viewed cochlear implants at the time. The brother whose family chooses against it does a good job researching what is required for the implant to be a success and evaluating their family’s ability to provide that environment. Interestingly, there is a followup to this (Sound and Fury: seven years later) which shows how people worked through their fears and how attitudes can change.
I’ve seen many an innocent hearing person bring up the idea of cochlear implants to people who identify as culturally Deaf, expecting that they will be interested in getting a CI. They leave these interactions feeling confused, as if they have said something wrong, but they can’t imagine what that was. They don’t grasp that the cultural equivalent might be to walk up to a Black person and ask “If you could be white, would you?” One video tries to get the audience to experience this: My Son is DEAF, Finally! This video is a challenge to watch if you are hearing and don’t understand the Deaf identity perspective, but it is supposed to be. If you can stick with it, you might start to see what it would be like to be a hearing minority in a society that values something you inherently are not (Deaf), and is willing to surgically alter you to make you more like them. The feelings that it brings up for you should be examined so that you can better understand their perspective. (Spoiler alert: no one (including the dog) is actually deafened in this video.)
Is it Possible to Identify as Culturally Deaf and have a CI?
I was on a Cochlear Implant panel several years ago at a Vocational Rehabilitation conference. One of the panelists was a man who identified as culturally Deaf and who had a cochlear implant. He said that his family, who were also all Deaf, had a difficult time accepting that he wanted a CI. To them it meant that he no longer wanted to be Deaf. His response was clear: “You wear a hearing aid, right? That doesn’t make you hearing, does it? A hearing aid doesn’t do anything for me. The only way I can get that same benefit you get from a hearing aid is to get a cochlear implant. I wouldn’t mind being aware of environmental noises around me. My goal is not to stop signing or to start talking, it is simply to get more auditory information to help me in my day-to-day life.” It took some time for the family to work this out. Everyone had to examine their values and why they felt threatened by his decision.
Cochlear implants do what they are designed to do…they bypass dead hair cells to get sound signals to the brain that the brain must then apply meaning to. Cochlear Implants don’t change your identity. I would posit that if you identify as Deaf, you will likely continue to cherish all of the things about Deaf culture that you have always cherished. You might, however, find yourself interacting with the world somewhat differently, which might result in changing the dynamics among family and friends. They might label this as denying your Deaf identity, when in reality you are just growing and changing as a person. They need reassurance that your new behaviors don’t mean that you value them any less.
What do you think? If you have experiences you would like to share, I’d love to hear them!
Sound Bites 
This article is quite thought-provoking… I’m a profoundly deaf (later-deafened) adult and have found myself in similar situations. I’m approaching the deaf/hoh question about differences and similarities by reminding myself that each individual is different in their abilities and needs, and that there is “diversity” in the hearing-loss world, too. After 20+ years with a cochlear implant, I still do not “hear” in all situations, but “what” I hear makes a huge difference for me and allows me to function within my world. While I love the beauty of sign-language, I will probably never be good at it (I don’t have anyone to practice regularly..just like you said). Great article.
Hi Karin, glad you found it interesting! That means a lot to me coming from you! My goal is to help prevent others from making the same mistakes I made in understanding how CIs work! 🙂
I received this e-mail from colleague and friend, Mitch Turbin and I asked him if I could post it. It really adds clarity to my efforts to describe the process the brain goes through to re-learn how to hear with a CI:
The purpose of a CI is not really just to stimulate the VIII nerve. It’s better described as being to stimulate the auditory nervous system. The auditory nerve functions as the entry point of a system that culminates in the auditory centers of the brain, and the brain is really the point, not the nerve. It is entirely accurate to say we hear with the brain more than even with the ear. That’s why CIs can work.
What you correctly identify as a learning curve can also be described as a process of neural plasticity, actual brain changes directly associated with changes in what stimulate the pathways in the brain. The auditory centers of the brain adapt directly to those new signals received from the CI via the auditory nerve, and over time the adapted, plastic brain pathways are more and more complex, and thus the artificiality of sounds tends to be transformed to more and more “natural” sounds. In many cases these days neural plasticity of the auditory cortex stimulated by a CI happens with remarkable speed, but it’s certainly not learning in the intellectual sense of the word. It’s more like building muscle memory from physical activity, like practicing dance, Ju Jitsu, or shooting baskets.
In my case (and I was able to immediately understand speech, so I was fortunate in the context of that time – 2001 – but these days that’s almost commonplace) I went from sounds being mostly artificial to fairly natural in days, with continuing changes in successive weeks, months and years. I had no therapy of any kind, just kept listening! I was working as a counselor, so I was talking and listening every day. And I kept up my subscription to the Oregon Symphony, among many other musical pleasures. I certainly continue to use ALDs and would never describe myself as other than hard of hearing or late deafened, certainly not “hearing.” I also note that my CI returned my hearing to where it had been 20 years earlier. And yes, I still enjoy using sign language on occasion—when I find someone who signs, which is unfortunately not often enough.
Mitch Turbin, Ph.D.