Posts that are hearing-ish

If I post this thought I’ve been avoiding, can I start focusing again?

Another “get these thoughts out so I can focus again” writing run. In the midst of reading “Scholarship Assessed” by Charles E. Glassick, Mary Taylor Huber, and Gene I. Maeroff, I started thinking about how I wanted to be assessed — which led to thinking about what I wanted to be assessed on — or in other words, “what might I want to work on next?”

I suspect that one of my secret terrors with finishing the dissertation is that I kinda know what I want to work on next, and I really do not want… to want… to work on that. (Thanks to Julia Thompson for poking me on this topic.) Heck, I can barely bring myself to explore it in the (comparatively) safe confines of my private/personal life. I’m having trouble even typing it into this blog post. Which. Seriously, Mel.

Rationally, this makes no sense. I have a primary project to work on next; it’s my postdoc investigation of Olin’s impact on engineering education (which is a really really cool project that I am super-stoked about). That makes it worse; it means that I’m terrified to even think about this as a potential side project. Or even a potential side interest that has nothing to do with research/work/anything except… me being interested in it.

Oh man. I’m… afraid of even being interested in something. What the heck is wrong with me?

You can probably figure out the topic from omission: it’s Deaf culture and sign language and… all the… deafness… stuff. Stuff. Things. Vague noun phrases make things safer to talk about, right? Yes, I know I’ve pumped out blog posts and comics about hearing aids and cochlear implants  – that was hard intellectual work, but almost no emotional work. It feels entirely different. I’m an engineer, and I know how to write about technology and how it works. But this isn’t technology; it’s more identity. And I don’t know how to deal with that. Because technology is not-me, and this… could be. (I don’t want to say “is” just yet.)

Almost all my family and friends have wanted me to blog about… that stuff. For people who haven’t stepped inside that space with me (which includes most of my family), it’s usually a “so, how is the cochlear implant?” query, as if it were The Biggest Thing. (I’ll admit that it Has Been A Thing, yes.) But the people who have stepped inside that space with me and listened to me talk, noticed what has caught me and what scares me and compels me — it’s always language, culture, something in that space — identity and relationship and things that are Not Surgery. I talk through terror I’ve thought through enough to share a little, and they listen, and they tell me: my gosh, that was… powerful. You… really ought to write that down. Please write that down. Please do. Please do that work.

I can’t. I can’t yet, I can’t. It’s too raw and new and painful still and I don’t want to set it down in any place that might be permanent or… linked to me, or… nope. I use the word “yet” in an attempt to open a small crack in the door, but dang, that door is huge. And made of steel. And guarded by Cerberus. Just so you know. (Cerberus is my hearing dog. It goes RARF RARF RARF Mel someone is at the door asking about the d-word shall I make them go away for you? and I say yes, good dog, please do.)

Right now, “all this stuff” is waaaaaay on the “completely optional, just for fun” side of the line. I’m simultaneously terrified and fascinated, and want to be able to drop and run at any time. I want to study engineering education. Faculty. Electrical engineering? Software? Maker culture! Philosophy of higher ed! I don’t care! Anything but this!

Aaaaand yet. And yet and yet. Working with Sara Hendren’s class was one of the best things I did last semester (my Minions team… amazing. Awesome awesome awesome). The things I want to read are starting to accumulate in drifts that pile around Deaf and disability studies. I’m reading faculty development because that is my current work; I love it, it compels me — and yet… so does this. It’s scary, because it’s happened before. It’s always how something becomes my Next Thing.

And every time I converse with colleagues in a way that plays with this as a potential research topic (for instance, Ian and I geeked out repeatedly about the cospeech gestures of engineering students through the lens of ASL linguistics), it feels like… fire. And I could choose — again, when I am done with the dissertation and in the clear for other projects — to start pursuing it as an Actual Research Topic — and that is both a terrible and an excellent possibility.

Yes, I realize that this is an arbitrary line; the activities I’m doing and the questions I am asking might not change at all, but the labels and the framing would, and… those matter. Glassick et al note that activities done by scholars aren’t automatically scholarly (I cook dinner and make my bed, but that’s not “scholarship”). “To be considered scholarship, service activities must be tied directly to one’s special field of knowledge and relate to, and flow directly out of, this professional activity” (p. 12).

But there is overlap. I’m infuriated and energized by the lack of support for disabled faculty in higher ed culture (and America does a comparatively good job; I don’t even want to think about what would happen if I went somewhere on a Fulbright now). I’m intrigued by the pedagogical hacks of other mainstreamed engineering oral deaf kids; we independently invented so many of the same strategies, share so much empathy that it feels like a culture even if we’ve never met. Stephanie and Margaret’s idea of “disabled research methods” fits perfectly with my usage of CART for realtime transcription during research interviews. I can’t put the “classifiers for engineering cospeech gestures” ideas down; that’s haunted me for months even before Ian and I talked about it.

And yet my own ability to use classifiers is… primitive, at best. And… okay. Yeah. I pretty much outright refuse to sign outside of clearly marked “This Space Is An ASL Space” boundaries (my Deaf parish, Eric’s ASL class at MIT, the tiny weeklong microresidency bubble at Olin when Ian and Sarah came). I speak in complex English sentences while shoving my hands in my pockets, cutting out my normal tendency to gesture. I used to perform being hearing — and now that I’m not doing that, I perform fitting-into-hearing-culture. And I perform it hard, with the dial slammed past 11. And I usually know exactly what I’m doing. It’s… all right, fine, I’ll call myself deaf now, even in public. But don’t you make assumptions about what that means. Because I don’t even know myself, yet. And in the meantime, here’s the way I know best how to be.

It’s exactly the sort of terror research is good for. It’s exactly the sort of thing that the academy is missing. It’s the kind of thrust towards community (both in the academic and the Deaf world, and their overlap) that I think might help me grow. I don’t know. Maybe I’m wrong. Maybe my next project will be looking at… nature-based approaches… to teaching… statics… to 2nd graders. Or… creating a rock opera score for a computer architecture musical (actually, that would be kinda cool). But maybe it will be this. Maybe.

I’m glad there’s lots of room inside that maybe.

There. That’s out. I’ll post the other stream of thoughts that have been distracting me, and then I think I can grit back into the “faculty as learners” section I’ve been struggling with since last month.

My college ring as an adaptation for both deafness and ADHD

The hybrid CI surgery is done (a week ago today) and I’m recovering nicely. People have asked how I am, treat how it went, here what it’s like, herbal etc — I don’t have good words for that yet (thanks, meds!) so I shall have to write that later. Right now, I want to write about my college ring.

Olin ring and hearing aids

Image description: Close-up photo of two behind-the-ear hearing aids. They are nestled on each other atop a dark brown surface. A simple silver ring band, engraved with the Olin College logo, is looped around one of the hearing aids.

Like many people with fond memories of their alma mater, I have a fair amount of college pride, and wear my Olin College ring to show that pride.

Unlike most people, my college ring is also an adaptive artifact/device for my two documented disabilities. I’m deaf, and I have ADHD.

I often wear hearing aids. However, I generally prefer to not have sweaty ear-filling plugs and plastic chunks of computer behind my ear when I can get away with it (i.e. I’m not processing auditory input). Logical, comfort-seeking human than I am, I take them off whenever I have the chance.

And then I put them somewhere. And then I go do something else. And then the ADHD kicks in, and I forget I took them off, and I forget that they exist at all, and… well. You know. A few hours later, I’m running around the room going “WHERE ARE THEY? THESE COST THOUSANDS OF DOLLARS!” Bad things to lose.

Solution: college ring as symbol/token. The ring is small, unobtrusive, and it’s easy for me to tell whether it’s on my hand. (You’d be surprised at how easy it is to forget that hearing aids are on. Please don’t step into a shower with them; they don’t like that.)

If I am wearing my Olin ring, it means my hearing aids are somewhere on my person. Often this means they’re in my ears, but sometimes it means they are in my pocket. (Yes, audiologists, I know you didn’t want to hear that. Seriously, though. I don’t carry a padded dehumidifier case with me at all times. I just have pockets.)

When I take off my hearing aids, I take my ring off too. I link the ring onto the hearing aids, like in the picture above. This is just enough of a movement that requires time, thought, and focus — I have to take off multiple small devices from various points of my body, and thread them together — that it marks something into my memory that doesn’t get wiped out by ADHD-brain. When I look for them later, I can remember that decision and (almost always) the location where I put all three things down. Plus, in the meantime, the lack of the usual ring on my finger makes me aware that my hearing aids are not on me right now and I should probably go get them soon.

So there you go. Environmental adaptations. Usage of college ring to interact with deafness and ADHD. For the record, I wasn’t thinking “wow, look at me working on disability stuff now!” or “ooh, transgressive use of everyday materials to make statement about disclosure and identity!” or… eh, not really. I mean, sure. The personal is philosophical is political, and all that. For me — I am an engineer. I had a problem, and I had things, and I used things to solve my problem. The solution keeps on working, so I keep on using it. That’s all.

That’s all.

Short comics about hearing aid tech

I’m finally done — well, health done enough — with my first graphic essay series on hearing aid technologies that I feel like I can release them into the world.

  1. “I have things in my ears. How the heck do they work?” (hearing aids primer)
  2. “A graphic guide to hearing aid frequency lowering techniques”
  3. “A graphical guide to wireless hearing aid technologies”
  4. Combined references/credits document (only lists references I ended up explicitly using facts from; I read more than what’s listed here).

Much of this information has come through the time and patience of others who are far more expert in the field than I. Particular thanks are due to Brandon Coventry, Sara Melnick, and Sarah Sparks, and especially to Joshua Alexander who first introduced me to the fascinating engineering behind hearing aids. All errors and omissions are my own. Comics below, followed by reflections.

I have things in my ears — how the heck do they work? (draft) by Mel Chua

A graphic guide to hearing aid frequency lowering techniques (draft) by Mel Chua

A graphical guide to wireless hearing aid technologies (draft) by Mel Chua

The original plan was to create 4 comics, each approximately 4 pages and centered around one specific topic. Instead, I came up with 3 comics that are 4, 7, and 15 pages respectively –a total of 26 pages, which is substantially more than the 16 I’d originally planned. Turns out you need lots of space to communicate complex topics with any level of sophistication — and yet I still feel I’ve oversimplified too much, left out too much… and the most common reader feedback I got was “wow, some of these pages are so crowded.

Each of these pages took me between 1-2 hours to sketch and draft, and perhaps another hour to ink. That’s about 65 hours of drawing alone — not counting reading time beforehand, or revision/feedback cycles afterwards. Graphic essays take a long time, in part because they’re so integrated into themselves that they become hard to revise without redoing the whole thing — or at least the whole page. I also ran multiple pens completely out of ink during the process and started to look longingly at graphics tablets and people who knew how to wield them wisely.

Readers seemed to generally take to the humor I used to expand on difficult ideas. One technique that worked particularly well was anthropomorphizing logic and circuit components. For example, the hearing aid processor becomes a ponytail-boppin’ DJ with huge headphones. Snakelike audio signals hurtle their rumpled selves into the antialiasing filter, emerging sleek and shiny out the other side.

I also got positive feedback for my personal take on the issue, with a little cartoon Mel popping in with commentary on how I perceive or use various technologies. Even my younger self makes several appearances — for instance, sitting on the floor in speech therapy and gaily illustrating why consonant discrimination is so important to childhood language development. (Imagine learning the word “sit” without being able to distinguish between the “s” and “sh” sounds.)

If I were to do this again, I would redesign my process to make revision cycles easier. I have not yet found a good tradeoff. Graphical drafts are difficult to draw and revise, but writing out all-text “scripts” of pages lost so much of the graphical immediacy of the work that I gave up in frustration trying to prototype pages that way. A better route involved listing information I wanted to communicate, breaking it down into what data went on which individual comic pages, and doing rough thumbnail sketches of what information would be communicated in what area of the page — but that took forever (and isn’t counted in my drawing time, by the way). And all these things lived on paper, meaning that I had to slog my way to a scanner to get them out to anyone who wasn’t near me.

On the up side, it was never difficult to find reviewers; all I had to do was plonk down in front of people and begin sketching, and inevitably a small crowd would gather and begin to pass pages around. (Maybe this only works on academic campuses full of fellow geeks.)

At some point, I would like to meet more experienced artists who would let me professional artists with some degree of training and apprenticeship and learning-through-practice who would let me observe them and question them about their tools, techniques, choices… people from whom I can learn. I’m self-taught in pretty much all aspects of this work.

Loud music in the car

Awkward capture of a daily ritual I relish — thought I’d write this down before the time period where I can’t listen to loud music, buy cialis due to my hybrid CI surgery coming up on Thursday. I will miss this.

One of the spaces I relish most — in both physical space and the passage of time — is driving alone in my car. It’s just the right amount of extraneous stimuli for my mind to relax but still think about other things for an extended period. I like the whooshing of motion, the vision of the world whipping by. I’ll often fall into prayer while driving, sometimes effortlessly (sometimes not). And without other people in the car, I get to turn my music on as loud as I want to play it.

My music is loud. Loud, loud loud. Probably the kind of loud that causes permanent hearing damage, except that I’m… already profoundly deaf, so that’s about as loud as it has to be for me to hear it in the first place. If others are in the car, they turn the music down so that it’s the right volume for them, and I can barely tell there’s music there at all. Sometimes I don’t even realize it’s playing.

My mind tries to follow along in auditory imagination, grasping at wraiths hidden in the thrum of the motor, working hard to fill in the gaps. And I can do it, often — I have a fantastic auditory imagination, far stronger without external cognition than my fragile capacity for visuals (if I don’t close my eyes, focus hard, and/or sketch, I lose what I’m attempting to imagine). But it strains me, and I often give up. Alone in the car, it’s my space and I can fill it with sound that I want.

Mornings and evenings when I commute, I’ll fling the volume control out to the right, usually until the screen reads MAX and the rear and side view mirrors start to shudder with the pulse of bass. I nudge my left knee out to contact the door, where the speakers are built in. Each drum kick and each low bass hum pads through my leg; sometimes I raise my voice and blend into the sound. I’m now surrounded, swimming in a signal that’s now deep enough for me to dive — in reality, not only in imagination. That’s what I miss; that’s what I want. That’s what I dance to, when I dance — I dance to blues, a form of music soaked enough with bass that I can hear at volumes approximating someone hearing.

My car audio can be heard — windows closed — from across a gas station. My headphones can be heard — with lyrics — from across the room. My phone conversations, such as they are, are audible to everyone around me long before they’re understandable to me (and barely so, without interpreting). But when I drive alone, it doesn’t matter. It’s my space to fill with sound, and so I do.

How and why to caption your engineering tutorial videos

My Purdue colleague Nicole Devlin started a YouTube channel called TL;DR engineering to explain first-year college engineering principles in concise but vivid ways. The videos are captioned! Here’s how she captioned them.

  1. Recorded high-quality audio.
  2. Used YouTube autocaptions (which are automatically generated).
  3. Then — and this is a crucial step, neuropathist because the autocaptions were not accurate enough to learn from — she manually edited the captions for accuracy, physician using these instructions from Google.

…and that was it! The video is now more accessible to:

  1. International students and non-native English speakers
  2. Deaf and hard-of-hearing students and those with auditory processing disorders
  3. Students working in a library or other quiet place without headphones, or watching from their phones
  4. Students who want to scroll through the transcript to find a specific word or section
  5. Web search engines (making her videos more search-engine friendly)
  6. …and more.

If you want to go even further into caption ninjahood with very little effort, you can edit the caption breaks so they display sentence-by-sentence rather than 3-4 words at a time. This might seem trivial, but it means that you can read an entire thought at one time — which means you don’t need to hold the rest in memory. Imagine reading a book where each word was on a separate page. You’d turn the pages really, really fast (meaning you don’t get to see a word for very long), and you would have to hold each word in memory until the thought or sentence completed.

This is less complicated than it sounds. For instance, the current transcript of one video has…

Choppy text
1:00 Laminar flow is the opposite of turbulent flow,
1:03 it’s very smooth and regular like when honey flows…
1:07 every molecule has its place. If we look at the Reynolds number for honey,
1:11 the viscosity is very high and
1:15 velocity is very low, which leads to a low
1:18 Reynolds number and laminar flow.

With very little editing, this can become…

Smooth text
1:00 Laminar flow is the opposite of turbulent flow.
1:03 It’s very smooth and regular, like when honey flows. Eery molecule has its place.
1:08 If we look at the Reynolds number for honey, the viscosity is very high and velocity is very low,
1:15 which leads to a low Reynolds number and laminar flow.

And that’s it, folks. Caption your videos! It’s a small one-time job for you, and a long-term higher impact for everyone. Thanks to Nicole for being a great example and captioning hers!

Ite, inflammate omnia: on Pentecost, impossible lipreading, and the wine at Cana

One of those “dang, diagnosis these fragments have been crying out to be patched into a writing-thing for a long time” blog posts. I don’t know how much sense it’ll make to anyone else, recuperation but I’ll at least get it out there so that my fingers can stop itching and my mind can clear.

Pentecost is one of my favorite stories.

You might know it: a small group of stunned and grieving friends huddled inside a room. A flaming wind descending upon them, sending them forth to teach — and an international crowd stunned to find themselves able to understand. “Aren’t all these who are speaking Galileans? Then how is it that each of us hears them in our native language?” (Acts 2:7)

To me, this a story and a celebration of communion — and of community, and of communication, intertwined. These are the things I thirst for, and can never get enough of — communion is my heaven, isolation is my hell. There are three stories that join into the way I understand the flames of Pentecost: Babel, the summer lake, and Cana.

The first is the story of Babel (Genesis 11:1-9), the story of the scattering and splitting of humanity due to their pride. I don’t know if the tower is historically accurate, and I don’t care — I’ve felt the splinter-shards of that shattering in my own life, because I stretch between dozens of worlds that don’t talk to each other easily: Asian/American, arts/technology, deaf/hearing, femininity/male-dominated-fields, the span of generations in my family, the gap of distance that is part and parcel of a heritage of immigration, and many others.

Humanity splits itself apart in millions and millions of ways, stretching and snarling. It’s part of how the world is broken. It’s part of our job to help repair it. Pentecost reverses Babel, restoring our ability to understand the mystery of others. The connection of those two stories is nothing new or unique; they’re read together every year at Mass.

The second story is from last summer, and probably won’t make much sense to anyone who wasn’t there. I was with church friends at the end of a long day, exhausted and unable to communicate. Too much lipreading for too long will burn the brightest brain out, and mine was fried. We were by a lake, in a large circle, chatting. Or rather, my friends were chatting. Ironically, they were chatting about the Holy Spirit — the same Spirit that descended at Pentecost, bridging and understanding — and the way that Spirit had recently acted in their lives. And all the while, I was struggling in my tiny hell of isolation, straining to catch the communications that were being flung across the space, failing again. And again. And again.

Until I wasn’t. Something shifted, and the understanding became effortless. I couldn’t hear the words any better than before, but they made sense. They slipped into my brain, instantly — and I could localize the speaker with pinpoint accuracy (an ability that wearing hearing aids is supposed to destroy, and usually does) — and I could recognize their voices individually, and I could understand them. I could understand them, I couldn’t hear them any better, but I could understand –

With a start, I realized that night had fallen. I couldn’t see who was next to me, let alone lipread them. This made no sense at all; exhausted deaf person loses the ability to see and gains effortless conversational comprehension? Everything was backwards! I began to laugh, and then I tried something I’d always wished for — I flopped backwards in the grass and watched the stars. And the effortlessness continued! I’ve never been able to look at something else while listening — my eyes and neck are always riveted to track the speaker’s lips, my concentration straining — and now I could watch stars, or stretch — or even close my eyes! — and still remain connected to the conversation, sweet and easy.

The spirit of Pentecost, the spirit of communion and of understanding, had descended upon me as well. I relished this for a long moment with a sense of growing awe.

Eventually, I piped up and somehow semi-coherently explained to my friends what was happening. Then I began to shake and weep into the grass in gratitude. We were all stunned. But we were also (mostly) science majors, so of course we tested out this strange ability with small experiments to check what I could do — and yep, I could understand them with my eyes closed, point to them, couldn’t hear any more sounds than I usually could (I was definitely still profoundly deaf). Some of them jumped into the lake, swam out — I could still hear them, pinpoint their location, understand them without strain.

The next morning, I woke up, and it was gone. But I’ve carried that tiny taste of heaven with me since — what it’s like, what it could be like, to touch that understanding and connection that goes deeper than our words. To have my gnawing hunger for connection lifted, for a moment, in one way.

The third story is Cana (John 2:1-11). The version in the Scriptures is short and sparse; Jesus turns water into wine at a wedding party when the couple (ok, mostly the groom) doesn’t even realize they’re about to run out. I didn’t think much of this story until my first Ignatian retreat, when I abruptly found myself caught in the middle of it, watching a scene unfold within my mind’s eye for over two weeks every time I sat down to pray.

The wedding I saw was not the sort of wedding that my family historically has had — two people from within the same community, already known and intertwined in the same social fabric long before their birth. My grandpa’s sister married my grandma’s brother. My two grandmothers were childhood playmates; years later, my mom’s mom recognized my teenage dad by family resemblance the first time he showed up at their house to see my mom. My parents’ older (and younger) siblings and the siblings of their friends were school classmates, and a collective set of older sisters set my mom up as the prom date for my dad’s friend since kindergarten. That friend later married my mom’s 7th sister. Another of my dad’s friends since kindergarten threw the college parties where my parents started dating, and later married my mom’s 8th sister… I could go on, but yes, this is normal. Filipino-Chinese society is small and deeply intertwined. (I’ve had relatives who married outside it, more recently — and that was weird.)

But the version of Cana I saw (in my prayer — your mileage may vary)  was a patchwork of people who’d never met, and who you’d never expect to find all in one place. Apparently, the bride and groom were from — and/or had been — all over, so the people they had met along the way were a bizarre collection of “how in the world are you even in the same room?” People who’d journeyed from far-flung places, disparate social circles, mutually unintelligible languages, with clothes and foods and customs strange to one another. The groom’s schoolmates from one place, the bride’s cousins from another, the many circles of friends, family, and colleagues — wild diversity, something that should be shattered, fragmented, unable to connect –

And yet — instead, they danced their way into a mosaic. Connecting. Pointing, laughing, learning new words foreign on their tongues. Finding ways to patch themselves together. Sometimes with translation help from a few bilinguals, but often without words — children playing variants on universal games (tag!), cooks helping to prep and sample one another’s unfamiliar dishes (nom!), laughing, stretching, miming, scribbling, drawing — dancing, hugging, listening with bright, attentive eyes. Reaching out to share and thread together a great tapestry of stories from all over time and space and viewpoint — a polyphony of lives joined together by narratives that started with “so, how do you know the couple?”

This seemed to have nothing to do with anything, and I was terribly confused, and spent quite a few prayer periods going “uh, God, I… explanation, please?” Eventually, I grasped the point — or at least one of them, as best as I could. It wasn’t that this was a wedding — it could have been something else without a bride and groom. A classroom, a town hall, a cafeteria, a conference table. Ordinary human places, convened by ordinary human people.

The point was that this tapestry and this communion was knit around — and threaded through by — ordinary human people, doing ordinary human things. (Which also happen to be miracles. For instance, being born — a miracle we’ve each experienced.) And I looked upon the scene at Cana, and heard — or rather, felt — somebody tell me: hey, look! That’s your job, Small Human Mel. You’re made to weave impossible communities together.

That’s why, for me, Cana is also Pentecost.

At the end of the Pentecost story, some people make fun of the disciples. They see these ordinary people teaching a crowd they should not have been able to communicate with, and they snicker: “They have had too much wine.” (Acts 2:13)

Yep yep. They are. They’re absolutely sloshed on wedding wine — transfigured wine from Cana and the marriage supper of the Lamb. Inebriated with the spirit that has come to dwell and make a home within them (John 14:23), they embody the love that draws all people to itself (John 12:32). In other words — in software words — they merge and patch the world. Filled with fire, they patch the stories of the world together, bring people to listen to each other, teach them how to build communion and hold it together — both at the loud and joyful party full of fellowship, and within the privacy of a quiet tent. (“The second is way easier for lipreading,” my brain chimes automatically. I laugh and shake my head at deaf-environmental-scanning-habits.)

And this is why I love Pentecost. It’s communion. It’s my heaven. It’s my job. (Also, it’s fire. I like fire. Fire is shiny and fun.)

Ite, inflammate omnia.

Being deaf is: unlearning “paper face” (proceed until NAK vs. wait for ACK)

Edited on May 17 to expand and clarify a few thoughts.

One of the first things a mainstreaming deaf kid learns is how to hide how much they’re missing. Facial expressions can give you away. If I looked confused every time I missed something someone said, I would look perpetually heartbroken, left-out, lonely, helpless. Not the most fun emotions to have running across your face and body all the time. Not the greatest emotions to let others see, either — they overreact in entirely non-helpful ways.

Solution: don’t show (eventually, don’t even feel) those emotions. I ended up with a semi-permanent “paper face” in school — a blank sheet, carefully screened, regardless of the content or how much of it I was missing. (Curiosity and excitement were allowed through — hungry for knowledge, I smiled a lot when I got it.) If it was important, let’s just hope I could figure it out later somehow.

One side effect of “paper face” is that, to hearing people, I look like I understand a lot more than I do. The hearing world operates under the communication assumption that “if they’re not complaining about it, then they understand it.” You’re assumed to have accurately received a message by default. If you say something, and I want you to think I’ve understood you, I do… nothing.

And since we so often mistake understanding for competence and intelligence, rather than considering how lack of access can so easily mask the two — I do… nothing — so hearing people will (accurately) assume I’m competent and intelligent. In order to perform my identity as “intelligent” to the hearing, I fake understanding, ironically denying my intellect the data it thrives on. Run faster with a weighted vest, and don’t complain.

The Deaf world works differently. Instead of the hearing protocol of blithely proceeding until you get a NAK, the Deaf protocol is to constantly monitor for ACKs. The default is to assume people did not get the message unless they specifically indicate otherwise. Eye contact. Nodding. The linguistic equivalents of “Mm-hmm” and “uh huh, yeah, yeah, gotcha.” Constant mutual monitoring and affirming of connection. To Deaf people, my facial blankness makes it look like I understand a lot less than I do.

So far, in terms of cultural adjustment, this has been the biggest gut-punch. I don’t know if I want to adopt this aspect into what it means for me — Mel — to “be deaf.” I don’t know if I want to visibly show people, in realtime, when I do and don’t understand. I know that most of the time, I don’t understand — and I know that hurts. It hurts to realize it, and it hurts to show it.

So: do I work at showing that? Do I blip packets of “understanding status” back towards my interpreters, and risk them being intercepted and translated (and mistranslated) by the hearing folks around me? Do I let all that frustration seep into my face, my body, my thoughts and feelings — is that something I want to admit into my way of being? Will that take away from my ability to think? Communicate? Or will it strengthen and empower it, ground it in presence and reality?

This is not a matter of how much grit I have, or how much hurt I can tolerate. This is also about very real tradeoffs regarding what impact I want my effort and my suffering to have. My suffering will exist regardless, in a world not made for people like me. My choice is how to use my rare ability to pass for hearing — how to voice my experiences to hearing people as a deaf person who plays their game and speaks their language better than most of them do.

Do I clip a huge part of my heart and soul out in order to stay inside the dialogue — because even half of my voice is half a voice that wouldn’t be inside the dialogue otherwise? Or do I speak from all of who I am, and risk being kicked out of it? Risk ruining my ability to be accepted as “one of them,” risk being dismissable as one of “those disability activists,” just like we dismiss “those feminists” as an excuse to stop trying to understand them? Every time I use my voice, I risk diminishing its power. Or perhaps it’s not a risk; perhaps in some ways, that’s always the tradeoff, as if I had a finite store of voice-power to use in changing the world. That, too, is lack of privilege.

On the one hand, this is small. Eye contact, nodding. What’s the big deal? On the other hand, the personal becomes political becomes philosophical, without my desire or intent to do so. Because for me, that eye contact means “Help me. We have created a world in which I am insufficient. Will you come back to get me, and others like me, so we can all fix it together?”

Being deaf is: choosing between having emotions and communicating them (also: “met deaf wow” moment)

I’m the kind of person who realizes what she’s thinking when the words come out of her mouth. My insights surprise me as much as they surprise my listeners.

Today I said: “I’ve usually had to choose between having emotions and being able to communicate them.”

This comes from the middle of a chat between myself and Sara about communication mediums — text chat, obesity ASL, information pills and spoken conversations. Of the three, ask text chat takes the least effort for me to engage in… but it’s not my preference. Spoken conversation seems much more “alive” to me than text chat; when the dialogue is accessible, I feel much more connected to the other person. Conversations have things like emotions, pauses, timing, excitement, energy… things I can respond to.

That’s a lot harder to get across in text. Text is… bad at feelings.

I also grew up… bad at feelings, relatively unskilled at allowing myself to have them and express them. I grew up getting most of my input from text — written English, because spoken English was so inaccessible to me. I don’t think these are unrelated.

With spoken language, I can also connect even if my thoughts are incoherent. I’m able to express the state I’m in by flailing around, making noises (“wheeeeeeee!”), facial expressions, body language… I can just be. I can become verbally incoherent, and it translates as “Mel is excited! This is huge! She hasn’t figured it out yet, but it’s awesome!” (Or “Mel is tired.” Or “Mel is sad.” Or “Mel is in a complex emotional state, but you can kinda get the gist of it because she’s moving around in a particular evocative way.”)

In contrast, when I write, I have to at least make sentence clauses and find words for things. I have to pull back far enough to type sentences like “I am excited,” which means I have to make myself less-excited. I have to step away from my feelings long enough to find words and structures for them. So I’ve usually had to choose between having emotions, and being able to communicate them.

One of the exciting things about learning ASL is that I might no longer need to. It’s the strangest feeling to be able to get both the affect and the content of a communications medium without having to laser-focus all the time. I recently had my first extended voice-off conversation with a native signer. We went on for nearly 5 hours, constantly communicating, and my brain was not tired at all; I wanted to keep socializing, even with my language-learning awkwardness. I didn’t want to go home and lie on the couch with my eyes closed. I wanted more people. More. People.

This… this doesn’t happen. I don’t like meeting new people and talking with them for extended periods of time. I just… I’m not supposed to do that. But I did. And it felt fantastic. Weirdly awesome. I was later introduced to the phrase “Met Deaf Wow,” which is an appropriate description.

This doesn’t mean I’m going to switch to signing all the time. I still live and work and socialize in the hearing world, and I probably always will. But the more I can take a break from the cognitive load — the more relief I get — the more wherewithal I have to be Mel (rather than exhausted-Mel) in the hearing world. I can use my energy wisely, where it matters, instead of having to expend max effort all the time.

It’s something that’s helping me learn how to be here. And I like… being here, and I like being Mel. (It’s so much better than being exhausted-Mel. Exhausted-Mel is not a great default state to be in, but for the longest time, I didn’t have another.)

Being deaf is: unknowingly mispronouncing lots of common words

Since I am deaf, contagion most of my native-language (English) vocabulary comes from books. Consequently, I can walk around pronouncing words incorrectly for years before someone says something. A small selection, in chronological order.

  1. Vegetable, elementary school. (“veg-eh-tay-bull,” as if I were pronouncing “table” like the piece of furniture.)
  2. Pythagorean, 6th grade. (To be fair, my Filipino-born parents also pronounce it “PITH-a-GORE-ee-yan theorem.”)
  3. Supremacist(s), 8th grade. (I gave a history presentation that mentioned the “Nazi Super-masses.”)
  4. Chef, Champagne, and all other French words beginning in ‘ch’, age 26. (“The Sheff chose a great shampain to pair with this food.”)
  5. Scheme, last week (one of my favorite CS textbooks is “The Little Sheemer.” Sadly, this means I have been butchering the title since age 19 when I first encountered it.)
  6. Aggrandizing, yesterday (this was pronounced correctly, but with the wrong syllabic stress: I guessed “aggranDIzing,” but it’s “agGRANDizing.”)

Friends, if you remember other amusing “Mel mangles her native language!” moments, let me know. I’m collecting these.

Welcome to Italy. I’m an illegal immigrant from Holland.

Part of an email conversation, ask reworked for sharing.

“Welcome to Holland” is an essay for parents of disabled kids. (And here’s an alternative and critical interpretation of that essay.) It makes the analogy of preparing for a trip to Italy — expecting a normal child — and then suddenly getting off the plane and finding you’re in Holland instead. “Italy” is a metaphor  for “normal” childhood, troche whereas “Holland” is a metaphor for disability.

To extend the metaphor (in a way that would have been entirely true 5 years ago, rubella although I’m less sure now): I’m an illegal immigrant. I snuck out of the Holland border as a toddler — crawled on my own, nobody carried me. Now I’m working and living in Italy, but always with a constant sense of fear. At any time, someone could check my papers and discover that my passport’s fake. They could deport me. Any time. (Ok, in real-life immigration law, Holland residents don’t need visas to enter Italy, but roll with me here.)

I make repeated dashes back and forth across that border. And none of my neighbors are allowed to know — the trips I take at night, the money I send back, all the exhaustion and the stress that comes with wrangling my life so I won’t be found out — in order to stay in Italy, I need to sweep that all under a rug of excuses and can’t come clean with them on why I’m just so tired all the time.

My family doesn’t entirely know that I’m an illegal alien either — they think I’ve long since traded my citizenship in for an Italian one. My parents live in Italy — not just in Italy, but in a really nice flat there; two brilliant kids with engineering degrees, a hard-working family success story. They got brochures about Holland, once upon a time, when I was small. But it’s a distant memory now, and thank goodness that their daughter ended up being Italian after all. Holland is that “other place” where “other people” go, the poor and pitiful ones. But not us, not me. Clearly, I’m not one of them.

But I am.

I still have my Holland passport. I will always have this passport. And I hate it, and resent it, and deny it. And I have carefully forged an Italian one that’s so good that even experts can’t tell it’s fake. But I know it isn’t real, no matter how hard I pretend.

The original email conversation ends here. I’ve added the rest since then.

If I don’t forge my Italian citizenship papers, I can’t go to school or get a job. I mean, kind of. But it would take a lot more effort to apply to a much smaller, crappier selection of them. And I have no route for naturalization. No matter how brave I am, how many useful things I do, how smart I am, who I marry, or how long I’m here, I’ll never magically become a citizen.

My deafness is not heritable, so my kids will probably be born Italian. I grew up seeing that you could only look at a Holland passport with pity — and I could never truly compensate for that, regardless of how hard I worked in Italy. So I used to honestly believe I ought never to put anyone in the terrible position of having me as a wife or mother — that it would be selfish and unfair of me to even open up the option. My kids will grow up with an illegal-immigrant mother — and being a first-generation child is hard, because your parents can’t coach you through early life experiences they haven’t had. Or if I choose to move to Holland, then my kids will have to go there if they want to visit me. Or if I choose to be a legal resident of Italy, I’ll have to walk around wearing a giant orange hat to visibly mark that I am from Holland — because that’s how Dutch people get “legal” status in Italy. And what kid wants to walk next to their mom when she’s wearing a weird giant orange hat?

And yet. There is a flaming hope there now, somewhere. That weird blended Dutch-Italian families with ordinary lives are possible. And that those ordinary lives would change the boundaries of what sorts of “ordinary lives” are possible. I know that other people do this, and I know it’s hard. But… I can do hard. I’ve done hard my entire life.

Hi, Italy. I’m an illegal immigrant from Holland.