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October 04, 2014 - ASL audism cochlear implant CODA deaf debate ethics sign language
There’s a poignant sign to start my story if I were telling it in ASL. You take your index finger like a hook, and drag it across your forehead. It figuratively suggests having something scarred in your brain, and translates to “I’ll never forget.” The reminder is of the importance of Deafhood, and lately, of its missing role in the cochlear implant debate.
About five years ago in a San Fransisco office building I sat at a table translating with my parents on one side and a salesperson on the other. He pushed his product on my folks while we lost our afternoon. At first I hedged his aggressive tactics in my translations, and my parents sat confused by the half-filtered sales pitch and by my obvious frustration. Eventually his tactics became more than I could keep up with, and pressured to keep translating I submitted to merely relaying his assault. The salesman was effectively convincing my parents of a product with the voice of their son.* We left without his blatantly misrepresented product, but I was still bitter.
The translation breakdown felt like a personal failure. One I never wanted to repeat, and would never forget.
Only later in adulthood would I learn that the burden and failure I felt in the situation had more to do with how the salesman was able to take advantage of the situation (even if unknowingly). Wherever you localize the issue, it’s become clear that it divides in another important way, that tends to be the difference between a person who knows about Deaf identity and a person who doesn’t. In light of communication break-downs, the intuition of deaf advocates is less ”I just wish we could hear,” and more “I wish the hearing would try to understand.” The idea that the issue is not about whether or not ears work, but about whether or not people make an effort to connect using other means is integral to Deafhood.
As ideal as it may be to have a world without differences I think it’s easier to imagine building an appreciation and awareness of the difference. This would explain why children of deaf adults (CODA), a statistically hearing group, often commit themselves to a life of reconciling the gap more often than to a life of “fixing” or ignoring it. It’s not uncommon for CODA to become interpreters, educators, social workers, policy makers, writers with the intent to advocate. It’s part of why I study language in the brain.
The “never forget” moment and reaction toward a hearing world might seem counter-intuitive, but they fall within a broader mindset of Deaf advocacy. Deaf advocacy is the push for equality for the deaf and hard of hearing on a range of issues. For instance, many deaf parents would prefer their child to be deaf instead of receive a cochlear implant not out of malice, but out of a deep sense of identity with Deafhood. These parents are saying they would like their kids to have similar cultural values as themselves. So what do we do when, as hearing parents, our kids are born deaf?
The intution is the same: let them be like me. Cochlear implants seem very intuitive. If you type ‘deaf’ in a youtube search and order by most viewed, three out of the top five videos are sensationalizing Cochlear implants as a technological miracle (at the time of writing). Their total views is over 34 million. One of the five is a video about a restaurant advocating sign language. It verges on 5 million views. But cautionary videos on the implant or videos that promote Deaf culture are not terribly viral. People are watching what they want to watch: the world become increasingly hearing. What’s missing in this perspective, is the question about what you’re doing to the child, and how you relate to them as they are. If there was an opportunity for your child to be accepted as they were, and a community for them to fit into, perhaps that would be worth considering.
This is Deafhood. Deaf culture presents a culture-clash for hearing parents left to make a heavy decision about their child’s identity. However, often, this voice never makes it to the table. Left to make their own decision, parents are often unaware of the full extent of the “other option. The National Association for the Deaf has done an excellent job of discussing both sides non-judgmentally, but I don’t know who’s reading it, and if history is any indication, the NAD’s even-handed and non-prescriptive statement will remain largely unnoticed. Parents that see an audiologist for advice on their deaf child may be willing to validate Deafhood as a humane way of life, so long as it’s not theirs or one of theirs. This nearly-ubiquitous preference for a hearing identity ends up oppressing Deafhood at an individual and cultural level, and has for generations, when the Deaf are simply being asked to be heard.
The same was true when my parents were too young to make their own decisions. A hearing society overlooked the possible merit of a Deaf identity, and pitched what seemed the logical choice: try to fix the deafness. Loving, caring people bought into promises to “fix.” Childhoods of therapy, schools that taught lip-reading and gave extra hours toward English comprehension. The deaf were members of a hearing society, and many were so rigorously trained on fitting in they didn’t even know a sign language. Undoubtedly today’s technology and educational advances are leaps and bounds closer to a fix. But it doesn’t change the fact that marketing the cochlear implant without a full discussion of the cultural choice at-hand, and honest representation of Deaf culture, risks being a repeat of history.
I’m no less of a salesman, except I’m selling information: read the NAD’s even-handed and non-prescriptive statement. It’s refreshingly mature. We live in a world where people are made differently, but they can be treated equally. It’s hard to accept this first claim and many don’t. But there’s been an age-old way to deal with it: embrace it, and focus on the latter point.
Don’t get me wrong, I deeply support technology’s capability to be an equalizer. In my parent’s day, public and private transportation improvements made it easier to have Deaf clubs. Today the deaf can be even more connected with text messaging. But technology can also be unwanted. Not all children will take to implants linguistically, or culturally. When it comes to making decisions about how technology might play a role in someone’s life, it’s no light one. All the more important to include consideration toward that second reality: equalizing. And that’s precisely the conversation the Deaf have experience with, regardless of whether you’re committed to a hearing world.
There’s a sign I’m hoping you’ll appreciate. Start with all fingers extended and close your pinky and ring finger. Now take your thumb and touch it to the outside of your eye, and point your index and middle finger straight ahead. Now starts the sign: at the same time, curl the two extended fingers toward your eyes. Show that to someone who knows ASL to begin a good conversation. They’ll know you’re open to learning about Deafhood, and they’d be happy to tell you about it.
Other writing on this topic: Talk about Deafhood, The definition of Deaf
External articles on the cochlear implant debate: The Sound and the Fury, and more recently, this blog
*Years later in interpreting classes I would learn that the problem of a hearing person’s deception being lost in translation has had legal consequences enough to make it an overt responsibility of the interpreter to incorporate in their translations any seemingly suspicious or manipulative overtones.