Last summer’s Zambia reflections

November 30, 2014 – 11:53 am

By the way, gynecologist the whole baseline sound-making anxiety thing? It works the other way, too.

I’m an electrical/computer engineer. I like making embedded systems, which are tiny computers that do tasks while responding to the outside world. (I promise this is relevant. Stay with me here.) There are two (basic) ways for embedded systems to handle external input: they can have polled I/O (input-output), or they can be interrupt-driven. This Calvin College page has a nice explanation for polling I/O:

Think of a game where a basketball player is asked to make as many free-throws as possible in one minute, but the clock is down the hall in another room. The player must run down the hall and check if the minute has passed, and if not, go back to the gym and try to make another shot, then run down the hall to check the clock and run back to take another shot. The player spends much of the time simply checking (polling) the clock.

But wait — what if the basketball player can hear? And if the clock has a loud buzzing alarm? Then they’re fine, and can keep taking shots until they hear the BZZZT! that tells them to stop. This is called being interrupt-driven, and it’s such a gift — I’m stunned how much my hearing friends take this for granted. They can keep shooting basketballs, all the time. They can go right about their business, confident they’ll know when someone knocks on the door, or their food order is ready, or their kid falls down the stairs.

The deaf basketball player, on the other hand, keeps running back and forth along the hallway. I put in a periodic 1000-millisecond delay into my activity loop to stop and check things.

For instance, I enjoy cooking for friends. My kitchen is right next to my front door. At some point this fall, I realized I was constantly tense while cooking, and caught myself pausing periodically to see if somebody was at the door — because I can hear knocks on that door if I’m next to it, and very quiet, and I’m concentrating really hard. It was a totally unconscious programming loop I’d set up, and it basically said:

  1. It would be rude to let guests wait at the door for more than 30-60 seconds.
  2. Therefore, every 30-60 seconds, I will stop cooking and concentrate really hard! to check if guests are at the door.

I decided this was silly. Most of the time, guests aren’t at the door, so the vast majority of this concentration is just wasted effort.

Now I just prop open my front door if I’m expecting guests. (Yes, yes. Safety and heating/cooling bills. There are these tradeoffs.) In the long run, the better solution is getting a flashing door knocker or having a kitchen with big windows with the driveway/door within their line of sight (this is what I had last year, and it was marvelous). So, future Mel-home, you are going to have features.
Originally published in May 2013 on the Purdue SLHS Zambia Trip Blog, internist
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.

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