As evidenced by many comments and off-line reactions to my blog, hearing people automatically assume all Deaf people want to hear, of course. In fact, hearing people often cry with joy to think I am hearing anything with my implant. But I think a clarification may be helpful, explaining why I got an implant and what I want to do with it. After all, most hearing people aren’t understanding what I’m trying to do.
I was born hearing and was way way way hearing. Like 150% hearing. In fact, I was so hearing that I wanted to make a career out of it as a musician. If you look at comments by my old high school peers, you’ll see many of them remember me for all the piano playing I did – accompanying shows, performing, etc. I even won music scholarships to college. So when I realized I was becoming hard-of-hearing (in 8th grade, after years of faking and lying my way through hearing tests), it was difficult. And when I realized I was becoming deaf (in my junior year of high school, just as college acceptance letters were arriving), it was a tragedy of Greek proportions. It’s really hard to explain to people – just remember that many musicians say they would rather be dead than lose their hearing.
By the time I was a junior in college, I was not only deaf according to hearing tests, but deaf in terms of being able to talk with others, hear on the phone, attend class, etc.
When I started learning American Sign Language (ASL), I thought it was a joke. I figured it would be an elaborate sort of mime that was pretty useless in the “real world.” Instead it was like the Matrix, where I took a pill (or in this case, an ASL course), and discovered a parallel world that was vibrant and a language that rivaled English in its complexity. All the doors that were shut opened up again. I went back to college, got a job, learned how to use a TTY to make phone calls (now I use a much cooler Videophone), and started becoming involved in the Deaf world and all its history, arts, traditions, and so on (if you have Netflix, check out the movie “Through Deaf Eyes” to learn more).
Learning ASL also meant I got involved in the Disabled Student Cultural Center (the DSCC) at the University of Minnesota. I started learning about the medical model and social model of disability that exist in society. The medical model meant I was broken and needed to be fixed up or cured. The social model meant society was set up for nondisabled people and they were all jerks for thinking I was stupid or incompetent if I was deaf. This resonated with what Deaf people were teaching me about Deaf culture (notice the capital “D”) vs. deafness (lowercase “d”) as a medical condition. Most Deaf people loved ASL and were proud to be Deaf. I was starting to feel proud, too. The DSCC introduced me to many people with different disabilities who felt the same way, and my work at the DSCC convinced me we need to celebrate how disabled people add diversity to this world. No matter how much medical technology advances, we will always have people with disabilities, and most ideas about disability are rooted in fear, shame, and misconceptions about what “disability” means.
So given all this Deaf pride and Deaf culture and community stuff, cochlear implants have a troubled history with Deaf people. At first it was seen as a form of medical genocide, and a final attempt of doctors and audiologists to wipe out deafness once and for all. Doctors didn’t help this by touting implants as a “cure” for deafness.
Most Deaf people I know are fine with adults getting them, shrugging with an attitude of “If you want to go through all that for no good reason – that’s up to you.” Children with implants is a whole different story. Most deaf children have hearing parents who have never met a Deaf person or learned any ASL. Most of these parents want their children to hear and speak, and doctors are still insisting implants are a cure of sorts. So Deaf people worry that children are getting surgery due to a lack of information for parents, and then the children are being encouraged to deny their deafness. They are all still deaf. So Deaf people worry that deaf children will grow up thinking there is something wrong with them, when all of us would tell them how beautiful they are and how they are joining generations of amazing Deaf people.
Doctors have wanted me to get an implant since I was 18 years old. I resisted because I knew the technology was pretty basic and because I knew there were some serious side effects (like not being able to get an MRI, an increased risk of meningitis, all the risks of general anesthesia). I also didn’t want one. I liked being Deaf. I was doing well. I was learning and pursuing my education. I was content. Why bother?
In August, 2011, I worked with a grad student named Alex Umstead. He helped me plan a national conference for students with disabilities – “Disabled and Proud.” Then a few months later, I realized I couldn’t lip-read Alex. My residual hearing was continuing to fade, and the quality of the sound was so bad that I couldn’t lipread familiar people in 1:1 situations. Then my wife Tracy (who is an ASL interpreter) interpreted a conference about cochlear implants and came home impressed with the improvements in implant technology. So we started talking about it. Privately. By Christmas time last year, we had pretty much decided to move forward. We talked to a very dear Deaf friend who got an implant. And we talked to my brother, who is always able to think calmly and coherently when facing complicated questions like “Should I get a cochlear implant?”. Tracy and I both started warming up to the idea of me having an implant.
But here’s the kicker – I don’t want to be hearing. That’s not even reasonable. I will never be hearing. When I take off my external processor, I’m deaf. When my implant is on, I will hear noise, and hopefully that will help me lipread and get environmental cues. I would love to be able to lipread Alex and others in a 1:1 situation. But honestly, music will never sound the same again. Even if I talk on the phone someday, I will always be functioning as a hard-of-hearing person who misses a lot of information (and would probably rather just use my good old Videophone). But this isn’t sad for me – this is just a fact. I do sometimes miss music dearly, but the beeps and sounds of my implant can’t give me back music like a hearing person would hear it. I mourned for music a long time ago – it’s like an old friend who died, and sometimes I see glimpses of that friend in others, but that particular friend is gone. So my implant might give me a ghost or shadow of music, rhythm, tone, loudness, etc. but I know it’s not the same and never will be.
So I’m hoping people understand that I’m trying to learn how to hear like a Deaf person. I am trying to embrace what the implant is giving me and figure out how to use it. It’s just a tool, like a hearing aid, e-text for people with dyslexia, braille, or a wheelchair. Deaf people in Scandinavian countries think of implants this way, and it makes sense to me. I get the tool and figure out how to use it in a way that meets my needs. This involves a lot of experimentation as I figure out when I can rely on the implant, when I need to have interpreters, when I want sound from the implant combined with ASL, when I can take of the processor and enjoy the silence and ASL, and so on. How I use it will be unique and suited to me alone, and will not be the same for any other person. Even if I end up being one of the success stories who can suddenly understand 90 percent of spoken speech, I will still be Deaf and deaf.
So it’s awkward when hearing people get too excited about me being able to hear. Please understand that the decision to do this was not an attempt to be hearing, and my hearing will never be like a hearing person’s hearing. I will be experiencing a Deaf person’s hearing. And that’s just fine, even if I still haven’t figured out exactly what that means. If people get too enthusiastic about me being able to hear, then it’s like my whole experience in the amazing Deaf community has just been minimized or dismissed out of hand. If you don’t know ASL, you don’t know anything about being Deaf. And if you’ve never had a quiet world, you’re missing out – in my opinion, hearing people’s world is too full of sound, and hearing people are way too hung up on needing to talk to communicate. And I speak with some authority because I’ve been hearing, hard-of-hearing, deaf, Deaf, and now Deaf with an implant. I’ve covered a lot of ground and now I’m on another part of the journey. So wish me luck as I figure out how to hear like a Deaf person.