Almost four million people have watched a YouTube video of a baby with a cochlear implant, smiling as he hears his mom’s voice for the first time. What cold-hearted people wouldn’t be sniffling and reaching for Kleenex at the end of this?
Well, to be honest, many of us in disability studies were really irritated by this video. If you watch, the Mom isn’t even looking at the baby at first (although now I know she was probably watching the audiologist), and she only smiles when the baby hears her. Any first-year college student who has taken Psych 101 can tell you that “Mom Smiling + New Experience = New Experience Good.” So many of us cynical (and cold-hearted?) disability studies scholars just saw this as one more video supporting the cultural idea that “Hearing + Speaking = Good” and “Deaf + Signing = Bad.” At that time it first went viral, there was so much controversy about implants and babies that progressive thinkers who understood Deaf culture and American Sign Language (ASL) were as reactive as the Deaf community.
But now I saw a new article about that same baby, all of five years old now. This is interesting for me because I’ve often wondered about what happened to that family after they realized they had years of speech therapy ahead of them, they still had a deaf kid, etc. Turns out the kid is doing great. But it’s not that simple!
For those of you who bawled when you saw the video, you may want to note that Jonathan is still deaf. He has had five years of speech therapy, and I’m sure this family will be sending the audiologist Christmas cards for years to come (they look Christian to me – why is that?). He also needs to sign, which means his parents and siblings need to learn sign, too.
For you disability studies cynics out there, you’ll notice the implant is making a huge difference in his communication, and you’ll also see that we were a bit quick to judge without more context for the story. This poor family had ONE WEEK to process what we’ve spent years studying and debating. I may have made the same decision under these circumstances – it’s called hedging your bets.
People have been asking me to write about kids with implants in this blog, and I’ve been reluctant to do so (until now, obviously). First of all, every person experiences implants differently, so there’s no way to say what’s right for any one kid or family. Second of all, I just didn’t want to get myself enmeshed in a controversy that at one point likened cochlear implants to cultural genocide of Deaf people (here’s an introductory overview). Third, I wasn’t sure what I wanted to say – my own experiences with my implant were too fresh to gain objectivity.
My views of implants in kids has evolved and may keep changing. When I was a young college-aged student who had just learned ASL and became politicized, implants were evil. I still remember telling a whole class of Deaf education students exactly what I thought of parents who would subject their children to such a thing – one guy started crying. It turns out his infant daughter had just had an implant, and he was taking Deaf education to learn more about ASL and the Deaf community. Even that didn’t take me down a notch or two. Luckily I mellowed over the years as I saw many families struggling to make a decisions with everyone pulling them in one direction or the other.
When my own son was born (he happens to be the same age as the boy in the video), he and I went to the Deaf equivalent of “Mommy and Me” classes at the Beverly School for the Deaf. I was the only Deaf mom (and the only mommy fluent in ASL). Zack was the only hearing kid (and the only kid using ASL to communicate). Other moms watched in amazement as Zack asked me for food or drinks, commented on other kids or toys, or expressed feelings of frustration (e.g., “All done! Let’s play now!”) The other children had resorted to grunting, pointing, mime, stilted awkward speech, etc. Not one of them could communicate well in English or ASL – they effectively had no language even though nearly all of them had implants. The parents were at a loss about what to do, torn between wanting to hear a kid say the word “Mommy” but needing to also have an honest-to-god conversation of some kind. And the clock was ticking…I knew that pretty soon these kids would NEVER have fluent language in English or ASL. I was almost in tears just watching them, but the classes were great and the Deaf teachers were good for Zack, so we stayed in the class and I hoped other parents would see what ASL could offer. One mom also told me that the Deaf teacher and I were the first Deaf adults she’d ever met. So we kept going.
As I read about Jonathan and his family, what stands out to me is that his parents and I appear to share a similar parenting philosophy: a parent’s main job is to give kids as many opportunities as possible. It’s not about what I need. It’s not about what Zack wants. It’s about Zack having lots of opportunities to be the best Zack he can be. Likewise, Jonathan, who I once pitied for the oppressive implant he had to endure, is now thriving with opportunities to use his implant AND to use ASL. His implant is like his walker – it’s just a tool. We’re the ones putting meaning on that and deciding whether it’s right or wrong, good or bad, or Deaf or hearing.
But at the same time, I wonder whether his parents’ hours of ASL lessons have been anywhere near the number of hours Jonathan has spent in speech therapy. I wonder whether his grandparents or any other relatives ever bothered to learn ASL (most never do). I wonder whether his parents will ever decide Jonathan’s speech is “good enough” and let him do other things during the time he’s spending with speech therapists. See, the problem with seeing an implant as a neutral tool like a walker is that it’s lovely in theory. But 99 percent of all hearing people don’t see ASL as a useful neutral tool – it’s something you do as a last resort if everything else fails. Until people start to think of ASL as an option that’s just as valid and wonderful as speech and an implant, it’s still entrenched in ableism (or audism, as Deaf people would say). And society certainly doesn’t help, with insurance companies gleefully spending $75,000 on a surgery (yes, that’s how much mine cost), but balking at $5,000 on hearing aids. They will (usually) cover speech therapy if the school district won’t pay, but good luck getting them to subsidize the cost of ASL lessons for the whole family.
If Zack was Deaf, I must confess that we would talk about getting an implant for him. But whether or not we did, it would only be one tool in our toolbox, and we would follow Zack’s lead with how to use it. For example, I have a Deaf friend who adopted a Deaf boy who already had an implant pre-adoption. He and his partner agreed to get to know the kid before figuring out whether to push speech, signing, both, or whatever. Well this kid would go into speech therapy and every time the speech therapist said something, the kid would sign his response without even moving his lips (this story about a first-grade activist always cracks me up…). He absolutely refused to speak in any context. His dads thought, “Well, ok…he is using the implant to lip-read hearing people, but has no interest in speaking back to them, so that’s what he’ll do.” When it came time to determine special education services, his dads agreed to the district insisting on speech therapy (which became lip-reading lessons) BUT the dads also requested “signing lessons” where the child worked with a fluent signer who basically gave him ASL linguistics lessons usually reserved for interpreters and grad students. I love this example because it shows a more nuanced way of talking about children with implants, instead of coming down with either/or, right/wrong, good/bad arguments for or against. I also know these dads will go with the flow if this kid suddenly decides to do something else as he gets older. This is how it should be!
I wanted to end this post by showing all of you a video of a Mom signing to her baby, so you could get out the Kleenex again and see a different kind of Mom-baby-smiling-about-communication interaction. Lo and behold, however, I couldn’t find ANY videos like this!
There were some videos on the Internet (or elsewhere) involving parents holding flash cards to teach signing (because that is SOOO effective with kids learning English from their parents?). Other videos showed Mommy (never Daddy?) sitting on a couch with a book ala’ Ms. Teacher, signing the book while children sat on their knees on the floor. This is so hearing! I have never seen a Deaf parent do these things. Ever. Where were all the videos of Deaf parents (or fluent hearing parents) signing with baby on lap? Or yelling in ASL at kids across the yard or a crowded room? (Yes, I do this all the time because it’s so darn convenient.) Where were the videos of kids learning signs because the parents were signing? For example, my son Zack’s first signs were “lights on” and “lights off” because that’s what he was interested in. He didn’t sign “Mommy” for ages, because he could get my attention by waving or touching my arm or face. I doubt there are flash cards with “lights on” and “lights off.” He also learned the sign for “love” around the same time – because Tracy and I were goofing around with friends about how silly it looks to sign the Beatles’ song “All You Need is Love” (read the lyrics if you doubt me). He learned language in context.
So, thoroughly discouraged, I decided to instead show you a video of how we signed with Zack. Now this isn’t a perfect example of signing with kids, because it’s my wife, who is hearing and doing a combination of ASL and spoken English. But what you do see is the same thing the video of baby Jonathan had – a Mom showing how much she values communication with her child. The difference is that Tracy is valuing all the ways Zack communicates: ASL, gestures, speech, and even nonverbal language like smiling or lunging back when he’s frustrated with her. Plus, if you watch it, you will see that love has nothing to do with whether you’re speaking or signing.
P.S. I know I am absolutely terrible for not captioning this video, but I think Deaf people can follow it. I am trying to caption it, but having a terrible time with all the captioning software. A student of mine has offered to help, so as soon as we get it captioned, I’ll upload a new version and post about it here.