“Watching this film certainly brought up some issues - but one quote jumped out at me. When Marlee’s character says (to the best of my ability to remember) “What does that make him, a hearing child who can’t hear, or a deaf child who can hear?” (as regarding getting a CI for Adam). For those with CIs, which side do you stand on? Are you “hearing” but can’t hear, or “Deaf” but can hear? [...] What do you think about that line?” — Kate (Comment #28 under “Sweet Nothing in My Ear: Elizabeth’s Opinion)
Think about the power of a name. It’s who you are, your identity, a marker of your individuality, an acknowledgement of your membership in a group, all of these things wrapped up in what is often a single, short word. Our names change throughout our lifetimes, shifting as we grow and change into the people we are today. Of all the words in the world, our names are the most common and familiar, the words we are quickest to hear, detect, and respond to when called. Wow. So much for just a few short letters!
So how do we give names to situations, like cochlear implants, where medical science and auditory training have produced a state of existence somewhere along the continuum between ”deaf” and ”hearing”? Well, first of all, I strongly believe in the right of self-determination for each and every person. There are few things more irritating than being told by someone else exactly what and who you are!
How do I describe the children at the oral school where I work? Here are some examples (totally fictional, none of this is real information, of course!):
- “Janie lost her hearing as a baby due to meningitis. She is profoundly deaf but is able to listen and speak with the help of her cochlear implants”
- “Jack was born profoundly deaf. He hears with his bilateral hearing aids.”
I don’t claim my way is the best, or only, way to identify these children. When they’re old enough to choose for themselves, I’ll certainly respect their decisions. But I do believe this method has several strengths:
- Person-first language. She isn’t a deaf kid. She’s a kid who just happens to be deaf, just like she happens to have red hair and love the color purple.
- Avoiding labels — describing that a child hears WITH such-and-such assistive listening device (or, conversely, that a child communicates WITH such-and-such sign system) describes HOW the child does something, not WHO or WHAT they are (she’s deaf, he’s a signer, etc.)
So… I’m curious! How do you define yourself/your child(ren)?
Elizabeth, that’s exactly how I describe my boys, when asked. I don’t tell people, especially strangers, that they are deaf– I feel it would misrepresent them and confuse others about the amount of hearing which they do have (98% in quiet, 89% in noise). I say that they were born deaf, and they hear with cochlear implants. In lengthier conversations, or if sleeping and bathing come up, I would also say they are deaf with their CIs off. Since they obviously hear well with their CIs and since they function as hearing children, we have no reason to call them deaf. But for us, it is a purely functional term, since we don’t have any background of Deaf Culture. But the reality is that we rarely discuss that whole issue with them unless it is brought up. One cool thing is that two of our boys both have CIs, several family members have glasses, grandpa has a hearing aid, etc. They see it as just one of those things that some people have. The older son is aware that noise could be an issue, and recently when he took state testing he knew to sit near the teacher at the front, but when I picked him up he said, “You didn’t need to worry, mom, I heard everything the teacher said and the test was easy.” I have been known to say very little, just the basics, to babysitters, preschool teachers, nursery workers, etc. We usually just highlight that when the coil’s on, they hear; if it falls off, they don’t, and that the CI can’t get wet. If it’s a place they will spend more time, I might show them how to change batteries. Less is more, in this regard, and they are treated just like any other kid. It’s not about having our “head in the sand” as we’ve been accused, but about living life to the fullest.
Comment by Amy — May 13, 2008 @ 8:45 am
These are excellent questions sure to provoke deep thought. I’m likely to describe myself and my son as Deaf people, or people who are Deaf, and leave it at that.
This is because being Deaf is an ethnic category; to us, it goes from a physical description to imply an identity, a lifestyle, a visual way of processing and response, a certain mindset that combines a pragmatic philosophy, resilience, and optimism. It means a heritage that includes folklore, literature, the visual arts, and history.
It is also because it gives the world an unambiguous understanding–not to assume we are “hard of hearing” (and that yelling in our faces is NOT the way to communicate.) It suggests a way for interaction with us–on our (visual) terms, since their (auditory) terms would not work.
Now for those who wear enchancements such as CIs and hearing aids, the word “Deaf” could be used to signal something else: a gentle warning not to rely too much on the devices.
Other people who function at a hearing level with no problem could simply avoid all mention of their hearing abilities, because for them it truly is a nonissue.
My guess is that most fall in between these extremes and are in a marginal position: how to communicate their hearing status without encouraging wrong assumptions? How to live as a hearing person while not quite hearing it all? How to avoid awkward situations? To date, society has not developed a response to these marginal situations and must work it out afresh with each person.
Labeling can be useful when done with an eye to cueing appropriate responses.
Comment by Dianrez — May 13, 2008 @ 9:04 am
I personally say that “my kids are deaf but can hear with cochlear implants”…because I want people to understand that when they don’t have their equipment on or batteries run down, whatever…they are in silence. I also use that as a way to educate people so they understand that the preconceived notion that all deaf people remain in silence and sign only is not necessarily true. Some do and some don’t. This lets them know that times are changing, just like computer upgrades, tv upgrades, all technology upgrades…most people in my area have never heard of cochlear implants…like me before I had my kids, I didn’t know there were options.
Comment by Val — May 13, 2008 @ 9:05 am
I say that my girls were born deaf but hear with cochlear implants. If further clarification is needed, I explain that, when they take their processors off, they are deaf, but with them on they function as mildly hard of hearing people.
Comment by Melissa — May 13, 2008 @ 10:11 am
I always prefer to refer to people by name. Heh heh.
No two people are alike, so it can lead to misconceptions about a child’s hearing. Suppose one person had experience with someone like Rachel, then met someone who is deaf but only hears environmental sounds with their CI, and assumed they were the same. Hmm…
Comment by Rox — May 13, 2008 @ 10:31 am
Since my son was born with some hearing and lost it, I tell people (just received a ci in Dec) he has hearing loss and hears with a ci and hearing aid.
Comment by Just a mom to three boys — May 13, 2008 @ 7:05 pm
My little guy has a moderate level of hearing loss, so the term “deaf” doesn’t quite fit when people ask about his hearing aids. I usually tell them that he has some hearing loss, or that he is hard of hearing and hearing aids help him hear speech better. People are often confused because they usually think hearing is an all-or-nothing proposition.
Comment by Leah — May 15, 2008 @ 11:10 am