Originally published in May 2013 on the Purdue SLHS Zambia Trip Blog, but I also wanted to have this here.
This is a mixed reflection on events from the past week as a whole, rather than one on a specific day.
I never thought I’d be on the other side of an otoscope. Growing up with a severe-to-profound hearing loss (ototoxic drug, age 2; my audiogram plummets into no-response territory around 1kHz) I was always the kid in the booth raising my hand, the one pulled out of class for speech therapy, the one peppering the audiologist with questions and getting in trouble for disassembling my hearing aids with eyeglass screwdrivers (it turns out first-graders aren’t supposed to adjust their own hearing aids, but nobody had told me that). 2 decades later, I’m an engineering grad student, the sole non-SLHS team member in Zambia, surrounded by 13 speech-and-hearing folks whom I can pepper with questions for two weeks. Somewhere, my tiny-child self is grinning like a maniac.
Except right now I’m staring at a variant on my tiny-child self. A 5-year-old is sitting on her mother’s lap, demanding in a nasal bellow that I blow more bubbles for her; I can’t lipread any consonants in her speech. Most of the other children in the pediatric HIV center have passed, but this time the OAE screen is blinking that the girl’s cochlea isn’t responding properly; she’s failed the hearing screening. I listen as Dr. Krishnan and the other students briefly counsel the mother about following up with the local audiologist (the only one in Zambia). I wonder what the mom is thinking. The door clicks shut. “That’s how old I was when they found out,” I tell my classmates as we prep the probe tips and elephant puppet for the next kid. “That’s what my speech sounded like when I was in kindergarten.” Later, on a sunset walk, Dr. Krishnan will tell me that telling the parents is the hardest part, that they cushion the blow by spacing the tests a week or so apart to “get more detail” and to “check again,” so that there’s time for the realization to sink in and they can start to address the big unknown: what’s going to happen to my child? The ADA doesn’t exist in Zambia.
Another day. We’re at a deaf school, one of only 4 in the entire country. Students swarm through the courtyard, the little ones signing wildly, sloppily, semi-grammatically, thwacking shoulders and waving hands to get each other’s attention. They see me and break into a flurry of questions: DEAF-YOU? HEARING-AIDS, DEAF-PEOPLE-IN-AMERICA? BUT-YOU-SPEAK! And then a sign, a tapping of the nose with a hooked finger, that I don’t recognize. It’s our second visit to a deaf school, so I’m used to the irony of being our primary interpreter (it turns out that ignoring one’s interpreter from 2nd through 8th grades still leaves you with a reasonable ability to communicate in sign). I ask one of the teachers (many are deaf as well) what the mystery word means. “White-person. They never see deaf white person before.” I see the kids miming kung-fu moves – I’m also the only Asian for miles around – and laugh: “I’ve never been called a white person before.”
One teacher and I get into an extended conversation – Zambian sign is close enough to American that our rapid fingerspelling can bridge the occasional gap – and as we speed up (HOW-STUDENTS-BECOME-DEAF? MANY GET-SICK, MEDICINE DESTROY HEARING. AH, ME TOO, BEFORE-WHEN SMALL CHILD, 2 YEARS OLD IN AMERICA) I stop simcomming, I’m just signing, and my classmates are blinking at us in incomprehension. The teacher is asking me questions, amazement on his face. You’re in college? — No, I finished, now I’m getting my engineering PhD. — They allow you into college? Deaf people in America go to college? — Yes, there are even Deaf colleges where the classes are all sign language, no interpreters. I’m sorry my signing is poor, I studied in hearing schools… — How? Amazing, to see deaf person doing PhD, someday they open brain to find out how you did this, that deaf person can go to university, we are so happy to see you, to see it is possible for deaf person to do this…
Small bits of smouldering lava are crumbling inside my chest, frustration at the great unfairness of the world. Thank God my parents immigrated to America, and for a thousand other tiny coincidences that allowed me to become who I’ve become. If the best education and career I could aspire to had been the things I’ve seen in Zambia for deaf folks, I’m pretty sure I would have been a high school dropout; why waste effort trying when the highest you can go isn’t very far off the ground at all?
I abruptly realize my classmates have no idea what we’re saying, and attempt to translate; they’ve been great about relaying things to me on noisy bus rides, in thick crowds, when I’ve turned around and don’t realize someone is speaking, etc., so I’m trying to return the favor. I relay the signed conversations in our evening debrief meetings: kids arguing, teasing, joking – for the first time in my life, I’m the only one who overhears (er, oversees?) and understands these side conversations, instead of being the only one who doesn’t. Some side conversations are just kids being silly (“They’re going to stick injections in our butt!” “You’re a big crybaby!”) but others are more sobering: after getting thresholds for a high school girl, I signed to her that her hearing was better than mine. YES, BUT YOU IN AMERICA, she replied. I NEED SIT IN THIS CLASSROOM, TOO FAR-AWAY TO HEAR. I looked at the metal roof and concrete walls, which turned the place into an echo chamber, and couldn’t reply; I’d recently whispered to the professors that the lighting was too dim to lipread, that the noise was painful, and that I was going to take my hearing aids off and go outside and sign with the students because at least there I could communicate. If some of these kids got hearing aids, I told them, they would have an awful time with the acoustics; turn the lights up, get some books or fabric in there to muffle the din, or nobody will wear them.
It’s these kinds of things, I think, that have been my contributions to the team; I’m less clumsy with an otoscope now and can operate an audiometer at lightning speed, but still ask basic questions nonstop. (What are inner hair cells? So the auditory nerve is embedded in the basilar membrane? No? Oh. What’s a morpheme?) But I’m also the first non-hearing classmate most of the Purdue students have had, and I tell them about that: how my hearing aids can’t noise-cancel the crowd at the mall, how I’d thought I wasn’t understanding the first graders we were testing because I couldn’t hear (it turns out that they actually weren’t speaking English), how the tiny visual cues (shoulder shrugs, eye glances, finger twitches) made it easy to cheat on audiograms, how the ADA doesn’t magically make all jobs equal-access, how people still speak to you as if you were mentally challenged when they see your hearing aids or hear your voice. Why I sometimes just don’t care about trying to listen because it takes too much effort. Why I’d shunned assistive services from high school all the way through college (“…you may not believe me here, but it was easier to go without them.”) I’m a stickler for lipreading during meetings: use a talking stick, one person at a time, face me, face me, FACE ME.
It’s been good to get their questions too, because I take so many of my coping skills for granted. How do I pass my classes? (I read extra textbooks during lecture time.) How did I learn to speak German? (Books and a very patient German grad student who coached the inaudible consonants into my muscle memory.) Why did I like getting pulled out for speech therapy as a kid? (I couldn’t understand group conversations in the classroom, so quiet 1-on-1 time with the therapist was often the most adult conversation I had in school that week.) I apologize to them on behalf of all the future difficult kids they’ll ever work with (“we’ll think of you when we get those kids, Mel”). I ask them to please, please explain things to their patients, feed their curiosity, push them towards possibilities they may not have considered. I don’t have the emotional endurance to be a clinician, but they do – I watch them work patiently with these kids day after day – and I’m glad we’ve got these sorts of people going into the profession.
Oh. And on the engineering side, I’ve now got sketches for portable audiometers and VRA setups and other things that would make good projects for EPICS teams… but that’s another story for another time – perhaps next year.