Posts that are Didn’t fit anywhere else-ish
My philosophy on how to change the world:
- Become part of the world you want to change, as deeply embedded as you can possibly be.
- Change yourself.
If you are truly part of that world, and you have changed — then part of that world has just changed. And all the fabric of the world, the fabric that your choice to join and love that world has woven through you — now it ripples and transforms with you.
It will hurt. That’s what happens when you let yourself love something or someone. It will hurt. Joining sometimes requires piercing yourself over and over with thousands of tiny needles as the fabric weaves you in; stretch out your hands to take those needles, drive them deeper. It will hurt. Changing will stretch and tear you and the people you have come to love, and many of them will not understand. Many times, neither will you.
It won’t be glorious, nor will it be quick, nor will it feel worthwhile most of the time. If someone sells you that, all you’re doing is buying an experience that feels good. That isn’t what you’re here for.
If we want a better world to become enfleshed, then we must dwell as that presence ourselves, among the world that we are given. We must embody what that world can be. Each of us, lamps. Each of us, salt. Each of us tiny seeds, sowed and struggling into the earth, crackling through it, inching up towards the sun. The sprouts are often solitary, but the roots are interwoven.
That’s how change works.
Everyone should be able to move freely about their hometown and go to school, work, the doctor, places of worship, friends’ houses, and wherever else they need or want to go to live their lives. Disabled people rely on public paratransit to do exactly that. On Monday, the MBTA will discuss drastically cutting “The RIDE,” Boston’s paratransit services. Cutting this would strand our neighbors, friends, and family members without an affordable and reliable way to get around their own communities. This is not okay, and we need to tell that to the MBTA. Call Governor Baker at (617) 725-4005 to voice your opposition to paratransit cuts — I’ve provided a call script at the end of this post, along with alternative ways to be a disability advocate on this matter.
What is paratransit?
Image description: A middle-aged black man in a red shirt and crisp white slacks rides the wheelchair ramp of a paratransit van. Photo by Valdosta-Lowndes, licensed CC-BY. https://www.flickr.com/photos/vlmpo/8661677890/
Paratransit is a public transit provision for disabled people who are unable to use fixed-route transit like buses and trains. It is a federal requirement under the Americans with Disabilities Act (see Subpart F of this document for details). Boston’s paratransit service, “The RIDE,” is run by the MBTA. It is intended as a safety net to ensure that everyone is able to get where they need to go. For example, someone with vertigo or chronic fatigue might not be able to walk a mile to the nearest bus stop. Elevator repairs might temporarily block wheelchair users from entering the subway station that takes them to school. On these or other occasions, The RIDE provides door-to-door transit in a shared van.
Using The RIDE isn’t free or easy. You have to pass an in-person interview/screening, reserve your ride 1-14 days in advance, and pay $3 per trip. You have to be ready to go 5 minutes before your pick-up time and willing to wait up to 15 minutes after, although in practice it’s sometimes much more than that. Missing or being late for rides incurs penalties, including losing your transit privileges. In contrast, able-bodied people who miss one train… simply wait for the next one. It is not perfect, but it’s better than nothing, and is often the only transit option for disabled people, many of whom live on limited incomes.
What are the proposed cuts and why are they being proposed?
Image description: an empty wheelchair stands in a dark street, lit by orange streetlights. Photo by Keoni Cabral, licensed CC-BY. https://www.flickr.com/photos/keoni101/5230711826/
Cuts are being proposed because the MBTA is short on money. Cutting The RIDE is one of many options the MBTA is considering to save money. The proposed cuts eliminate The RIDE from everywhere except locations ¾ of a mile from bus and subway routes, the minimum required by the ADA. Allegra Stout writes that this “will leave a whole lot of people with no way to leave their homes or get where they want to go. Last year there were 210,000 of these “premium” trips, including short-distance necessary trips for people who live outside of the “core” RIDE service area.”
In Boston, especially along the Green Line, it’s easy to live or work somewhere that’s more than ¾ of a mile from a transit stop. Plenty of able-bodied people walk farther than that to reach transit, so it’s an unfair standard to apply to paratransit riders. Disabled people living on fixed incomes may need to live far from public transit in order to afford rent. Disabled people also go home to suburban families for the holidays, take their wheelchairs to church, and need to go grocery shopping. The cuts would eliminate a lot of rides for a lot of disabled people.
Additionally, paratransit isn’t just a substitute for buses and trains. It’s also a way for cities to compensate for not having enough accessible cabs. In the town where I work, there are no accessible cabs. Zero. Ride-sharing services like Uber and Lyft also have a dearth of wheelchair-accessible options in Boston. So paratransit is the only way a wheelchair-using colleague could get to my office.
What would happen if the paratransit cuts are passed?
Image description: a group of 10 wheelchair users wearing winter coats, clustered in a circle. Not all their faces are visible, but the visible ones look tired and discouraged. Photo by Fran Urbano, licensed CC-BY. https://www.flickr.com/photos/43334679@N03/6955679613/
First of all, current paratransit riders wouldn’t be able to go to work, church, home, school, see their families and friends… their independence will dramatically decrease. This is not because their capabilities have decreased — but rather because their society’s willingness to let them use those capabilities has decreased. Right now, paratransit users can take care of many things themselves, just like other adults. Without paratransit, they’ll be forced to rely on others to get to doctors, acquire food and medicine, go to work, and reach places with human company. We will have chosen to leave them trapped and isolated in their homes.
Paratransit cuts don’t just affect disabled riders. They affect their families and friends, colleagues and neighbors too — the whole community. I am an able-bodied transit rider who lives in the city close to a T stop. My grandma lives in a different city and now uses a wheelchair. If paratransit services had been cut at the time of my cousin’s high school graduation, I would have to decide between skipping graduation and staying in the city with my grandma, or leaving my grandmother alone while the rest of our family went to the graduation ceremony. There would be no way for my grandma to get to her granddaughter’s school, and that would be terrible for all of us, not just my grandma.
More recently, I hosted a weeklong microresidency at Olin College (my workplace and alma mater) with my friend and engineering colleague Ian Smith. Every morning, Ian took paratransit to campus and we would spend the day hosting workshops, visiting classes, consulting with student project teams, and trying (unsuccessfully) to teach me Ruby on Rails. Every evening, our geeky linguistics-and-life conversations would be cut short by Ian’s phone alerting us that paratransit had arrived to take him back to his hotel. Students are still coming up to me and thanking me for the impact the microresidency had on them. Without paratransit, there would be no visiting Ian. No microresidency.
These examples are told from a highly biased perspective. Yes, I could probably afford a one-time wheelchair taxi ride for my grandmother — but I am relatively privileged, well-educated, middle-class, healthy, and stably-employed young person. If we expect a paratransit rider to take cabs to work, they often won’t be able to afford getting to work. As an able-bodied person, I can get from my home in the city to my job in the suburbs for $2.10 of public transit and a hike on foot. The same journey would be around $60 for a one-way taxi ride. That’s $120 just to get to work and back for one day, or over 13 hours of work at minimum wage — assuming an 8-hour workday, your transit would cost almost twice as much as the entire salary you’d make.
What can we do to help?
Image description: A man using a wheelchair descends a red-colored wheelchair-accessible vehicle, assisted by another man who appears to be the driver. The driver is smiling and wearing an official-looking coat and cap. Photo by Alexander Cunningham, licensed CC-BY. https://www.flickr.com/photos/cessna152towser/8060530882/
If you feel comfortable using the phone, call Governor Baker at (617) 725-4005 to voice your opposition to any cuts to paratransit services. Here’s what to say:
“Hi, Governor Baker. My name is _____. (If you live and/or vote in Boston/Massachusetts, make sure to add “…and I live and vote in ____.”) ADA premium trips serve an important need for disabled people in Boston and Massachusetts, and I oppose cuts to the paratransit service.”
If you prefer to use a web form, you can send the same message via a web form at http://www.mass.gov/governor/constituent-services/contact-governor-office. Note that phone calls are usually viewed as more impactful than web submissions — but I’m deaf, so I’m putting this option in there.
If you are able to attend the transit hearing, go and make sure the people running the meeting know you are there in support of paratransit. It is on Monday, December 14, at 1:00pm in the MassDOT Board Room, 10 Park Plaza, Boston, MA 02116. Right now it is listed as being in the conference rooms on the 2nd floor, but rumor has it that it might move to the 3rd floor. There will be a period for public comment, and if you wish to speak, you can say a similar phrase to the phone call or email above. Make sure to listen to the stories of actual paratransit users — make sure their stories get heard. Use your voice to boost their voices.
Finally, spread the word to your friends and colleagues and encourage them to call the governor, attend the hearing, and let the MBTA know that we will not accept a community where our disabled family members and friends are left stranded. Boston is a beautiful city; I’m proud to live here, and it’s one of my favorite places to explore. Let’s make sure everyone keeps being able to explore it.
Thanks to Ian Smith, Abby Rahn, and Eric VanWyk for helping with this blog post.
This past semester, my friends Jess and Brian and I got together in the St. Tom’s kitchen for cooking lessons every Monday night. I cartooned some of the recipes we made — they’re designed to introduce basic cooking techniques that can be varied to create a whole bunch of cheap (yet healthy and nommy) grad student meals.
Cooking with Mel: Jess & Brian edition by Mel Chua
The recipe cartoons caught on, and I ended up drawing more of them for a service project this past May. A group of us from St. Tom’s helped the kids from the local urban ministry cook a St. Patrick’s Day dinner for their families. The last recipe comic features all the Purdue students who participated (yes, I actually polled people on their favorite fruits). Recipes from this sheet are from John Mohoric; I’m just the artist.
Dinner recipes from St. Tom’s ESTEEM 2014-2015 by Mel Chua
I’m tossing this post out as a project notebook for something I’m building with Davin and Esteban this semester. The project is semi-secret, but the code is public (at least for now).
It’s my first foray into Processing, which I’m glad to say is a phenomenally documented programming languages. So many tutorials and code examples! I can pick it up by writing it, which isn’t true of all programming languages. (Low-level languages, functional languages, and all variants of LISP, I’m looking at you. Yes, you. Maybe there are good books about you, but without a book, there’d be no hope for me.)
Anyway. The current baby experimental code continuously computes and displays the brightness of each quadrant of a video feed. That’s it.
Image description: A video screenshot of Mel standing in front of a whiteboard, blocking out the top-left video quadrant with a black object. The screen is divided into 4 quadrants, and a number in the center of each quadrant displays the brightness level of that quadrant. The blacked-out quadrant’s value is approximately 24, whereas the other (not-blacked-out) quadrants are 122, 107, and 96.
This is enough for Davin and Esteban to start with, but I have a couple possible next steps to improve this code:
- I can probably split some repetitive code out into separate functions. (Not a high priority, I’ll fix it when it starts to hurt more.)
- Scale out to other video sizes/sources.
- Scale the brightness value output so it goes from 0-100 instead of 0 to… some max value I don’t know (but should find out).
- Make a “calibration” function that sets the 0 point of brightness for a quadrant when you click on it. This is sort of like the white-balance setting on cameras — if one quadrant is dimmer than the rest because of lighting, etc. we can have it work off a different baseline.
- Improve the computational efficiency (although I don’t know if I care, since if brute-forcing loops runs fast enough, why bother?)
- Find output interfaces for Processing so I can pipe the quadrant brightness data out to other things (do I want this sketch to output JSON, or… what?)
One of my favorite things is listening to people’s stories. Not the ones we tell of funny things that happened, or impressive feats, or jokes at the expense of others — not the ones that perform status or put on a show or somehow manipulate the levers of the social beast. But stories that are told in hushed tones, with long pauses and incoherent words; stories where voices drop, grow hoarse, and break. The ones told late at night, in empty rooms, or rooms that might as well be empty because the rest of the world has melted away until it’s just the storyteller and the people that they trust to hold their space around the rim of a small, golden cup.
And it seems to me that wine — a deep, red, tannic wine, perhaps shiraz — is pouring out into that cup, and as the story deepens it comes shimmering up towards the rim. You hold it carefully, your side of that edge of that cup. You know you can’t let go. They keep pouring their story in; sometimes it gushes, sometimes it trickles, sometimes it bleeds from them in visible pain — sometimes it tumbles in a sparkling joy, but it’s of a rich substance, and it’s… their life, that you’re helping to cradle, in your hands that breathe steadily to keep from trembling as the story sparkles like warm spiced liquid rubies.
It is rare, this privilege of sharing. And I treasure it, the privilege of listening. Sometimes the cup stays small, but sometimes — on even rarer occasions — wine will fill and curl up to the rim, and you continue holding that gold cup there on the other side, and then you feel the metal warm your fingers. And as the storyteller keeps telling their story, and you listen — hold the edge with listening, with rapt attention and compassion, not trying to shake or fix or analyze the contents, but simply to witness — they keep pouring, and the cup deepens, fills out into your hands; becomes too large to be a cup, becomes a bowl — and the bowl grows, and grows, and it becomes a depth — a massive chalice, and you peer inside and look at their reflection on the surface, marvelling.
And when you cradle it alongside multiple people — which is rarer still — you become aware of their breathing and their care and tenderness as well, and the shared strength and just… the privilege of holding up the rim of that great cup alongside them, right now, inside this moment, with the story of this one person pouring into it.
So they pour, and they pour, and you watch, and you wait, and you’re present. Profoundly present. Not caretaking, not problem-solving, not fixing anything, just being there in witness.
And when they are done, you look at the full bowl trembling there between your fingers, vibrating with life — and he or she who told the story gazes, and sometimes they can gaze a long, long time — and then they start to lift, and you can feel the lift from the thin metal at your fingers, and your hands rise forth and help them lift as well.
And they drink. They drink their cup, they drink their wine, they drink the life that they have poured out in the space between you, in the sanctuary you’ve created with your careful breaths and trembling hands and poised and patient presence. That’s why you’ve held; they need to pour it out, so they can drink — because there was something inside them, and they’re thirsty, but maybe they didn’t realize it — or maybe they didn’t realize how deep it went — that well within them, or that thirst.
They finish — sometimes quickly, sometimes slowly. Some cups are quaffed; some cups are bitter and need to be drank in sips, pauses, great gulps — sometimes you need to speak softly to them, remind them: slowly. You can take your time. We will stay here.
You can’t drink for them, and you shouldn’t; it’s their wine. You can’t eyedropper out a sample and run it through spectral analyzers, figuring the content — that’s not what it’s for. It’s not for product or for profit or for parceling out into watered-down sippy cups for others who weren’t there, so they can give you status for holding that edge, hurrah for you. The cup belongs to the person who has poured out the story. You are privileged to even be there, to even be allowed to hold a living portion of their life between your hands. It is a sacred trust.
It’s not “data.” It’s not “for research.” Sometimes it can be — I’m a narrative researcher, and this great love of stories is probably why — but I am very careful to put on that role with great deliberation, and I usually don’t walk around the world that way. On the rare times I do put on that hat, it’s something the narrator and I have discussed, and we know it’s a cup of stories are going to be shared, and oftentimes because of that they do not run nearly as deep, or taste nearly as rich. A $7 bottle of convenience store zinfandel. And I am bothered by — furious at — researchers and counselors and listeners who do not know how to hold cups, who do not respect that wine, who call a tiny cup a huge bowl because they have never seen one bigger — they can’t steady their hands, the liquid can’t reach the rim, they slosh — who try to drink from wine that isn’t theirs.
It’s one of the best things I know, watching people pour our their stories in that hushed and sacred space. Watching them drink. And they drink, and… it’s done. That was the cup. A story was poured out, and then it was poured in, and there: the world goes on.
I haven’t quite been able to write recently. I miss it. To write, I need safe and uninterrupted solitude within which to unspool whatever novice shreds of craftsmanship I have. I can be surrounded by people, as in a coffeeshop or library or hallway — and sometimes I prefer that — but I need to be safe from disturbance so that I don’t need to keep on anxiously scanning and saving mental stopping points mid-text, always poised to defend my space.
At the same time, I can’t write unless I have poured experiences into my life so I have something to pour out onto the page. As a mild extrovert, I fill the garden of my soul with richness by rubbing up against the world, plunging into the universe of people. Experiences, thoughts and sounds and bustle; organic matter tumbling into a bin of moist heat, crumbing into peat, a sweat-soaked fertile soil for growth. Newspaper clippings, soggy remains of texts I’ve read; eggshells of fragmented conversations, flashes of instinct; observations.
And then I need the quiet rains, and the small stillnesses, where the budded worlds can unfurl through my fingers. And I rummage through them, pricked by thorns and scratched by branches, pruning, propping, pushing, plucking — learning how to garden, learning how to wait until the fruit is ripe, learning how to ferment something into a bubbling sweetness that is more than all that it has taken in.
It’s simple. Life, and sweat, and time — and willingness to let chocolate-bitter notes swirl into the complexity. I bottle bustle in my wine; I need the stillness, but also the full-filled mess of a lively costumed brawl, and I need solitude. I need to run, and then I need to sprawl onto my back under a grassy sky, soak-drenched and gasping in great draughts of wind. I need the grit of rising early morning after morning plunging into soup-pot days boiling with mirepoix and vigor, and I need the lazy nights and mornings with sheets whipped cool around me, only rising drink slowly from cups of milky coffee piled high with pillowed foam.
I haven’t played with words like that for ages. Alliteration (“pruning, propping, pushing, plucking,” “bottle bustle”) and rhymes with delayed fulfillment (“Life, and sweat, and time” holds out for the word “wine” for as long as I can spool it), metaphors (composting, brewing, cappuccino foam and bedsheets), and other forms of wordplay (“full-filled/fulfilled” and “costumed brawl/costume ball”) – I don’t plan this; I just write it, and when I look back, I see those techniques in hindsight. I need to learn the discipline of making this a more skillful and subtle art, so I will leave these words as unrevised right now, and someday I may be able to shape it into better-ness. It’s still too much; I still write with a heavy hand that tries to grasp its way into the world.
My writing, at its best, reaches for something I’ll never hold within this world, a longing that will linger past the edge of my ability. Fecisti nos ad te et inquietum est cor nostrum donec requiescat in te. I ache to share the world as mystery, but how can I? C’est impossible. Live in a mystery, and words are too pale and poor to transmit more than garbled messages incomprehensible to anyone who hasn’t shared it. And those who’ve shared it know: the mystery is always yours alone, and only the transcendent third can span the gap between you. And so I learn to breathe in a great ocean that drenches in solitude; and so I learn to reverence communion, daß zwei Einsamkeiten einander schützen, grenzen und grüße.
I need my space to write; I cannot cross that space into the world you read from. And that’s hard for me, because there’s so much that I want to share. I want to share the worlds that have filled me with wonder — realms of knowledge, circles of friends, communities of practice, safe homes and life-changing schools and great mouthfuls of crisp-spicy food and little moments of experience. And all I can do is open doors into those worlds, and usually I can’t even do that; all I can do is wave my hands around and promise they exist, and that they’re well worth finding. And so I write.
I don’t know what I’m writing any more, or why I’m writing. I write; the images run out, I finish writing, and I wait and wonder. I suppose that’s what I do, in this particular kind of writing. I do a lot of other kinds as well, but none that feel so much like blind trust as this kind of writing — whatever “this kind” is.
And so we write, and so we wait, and so we work — and our waiting does not excuse us from our working, nor does our work excuse us from our waiting.
And with that, it’s time for me to plunge back into the world again.
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.
My cousins, friends, and I played Speakeasy Secret Santa last night, at the suggestion of my brother Jason. (Edit: The game was invented by our cousin Mark.) It was fun. Here’s how it works:
- Go to a speakeasy with at least 4 other friends. (It doesn’t need to be a speakeasy, technically. But it needs to have a wide variety of good drinks, and speakeasies do. Also, alliteration.)
- Everyone pitches their IDs into the center. One person shuffles under the table and hands everyone an ID (also under the table, reshuffling if someone gets their own ID). You are the Secret Santa and will order a drink for the person you draw.
- Go around the table and have everyone briefly state their drink preferences. (“Sweet and not medicinal.” “I love bourbon.” “Girly drinks.” “l don’t like wine, but I love dark malty beers.”)
- Order for your Secret Santa.
- When the drinks arrive, go around the table again and read out drink names and descriptions while others guess who the drink is for.
- Then go around the circle one last time, with each person presenting the drink to its final recipient.
Will play again. Also, I learned that my brother really likes bourbon. (And whiskey, particularly of the Japanese sort.) Good to know.
Short version: I’m looking for someone to take over sponsoring Deborah, a Zambian child with disabilities who is receiving care from Special Hope Network.
Longer version: Most people reading this blog know that I narrowly missed growing up as a disabled child in the developing world. (I am profoundly deaf, and my family is from the Philippines.) Growing up as a disabled kid in the developing world sucks. There aren’t resources to support you, so you don’t get the therapy you need, and have virtually no chance of being educated. Culturally, you’re likely to be seen as not just a burden, but a shame to your family — your very existence is seen as punishment, clear proof that a close relative has done something horribly wrong. Fathers abandon their families to avoid this shame. Mothers keep disabled children confined inside the house at all times for fear of it. There is no witness to society that your life is worthwhile — that your life even exists. You get an entire society who does not know how to deal with a person with a disability, because they’ve never seen a person with a disability, never watched someone else interact with them with graciousness and dignity.
Special Hope is a small organization that works in Zambia with the most marginalized of these kids — those with severe intellectual disabilities. It started with a family who left their comfortable lives in America and moved to Zambia to work and live as a family — who happens to have 3 kids with Down’s Syndrome. After noticing their kids were the only disabled kids they ever saw outside, they asked around and realized the others were being shut in at home — and decided to minister to those kids. They placed themselves right in the center of the poorest neighborhoods, so caretakers don’t need to spend precious cents on a bus ride. They teach siblings, parents, and grandparents how to do physical therapy with the children at home. They feed them (both the kids and the caretakers). They teach these kids whatever they can learn — singing, dancing, the alphabet — kids who would never otherwise set foot inside a school. These families meet other families with special-needs kids for the first time, and learn that they’re not alone, and that their child’s condition is not divine punishment. Most of all, they witness that these kids and their lives are worthwhile, and that these kids are loved.
I met Deborah during my trip to Zambia with Purdue’s audiology program. She was about 3 years old then, sitting on her mother’s lap — a young woman close to my age. They were fairly new to Special Hope, but Deborah’s mom was joyful at her child’s progress, and determined to learn and do whatever she needed to help her daughter — now that she knew she could do something, which filled her with hope. As I followed them into the physical therapy portion of their day, I remembered a photo of my mom coaxing 3-year-old me through physical therapy after I came out of a 7.5-week coma. And when I got back to America, I signed up and started to sponsor Deborah out of my tiny grad school stipend.
Two years later, my tiny grad school stipend has gotten (significantly) tinier, and I need to taper off my sponsorship — but I didn’t want to just quietly drop and run. So in my letter to the Special Hope folks, I promised I’d try to spread the word and ask if someone might be interested in picking up on my monthly $35 contribution for Deborah. They’re a small organization, and cash flow is crucial — and these folks make every dollar count. $35 gets Deborah nutrition, medical care and physical therapy, school for her and education for her family on how to love a special-needs child, and sets her up to do the very important work of advocating — in her own tiny preschool-child, simple-witness way — for a better world for everyone, including people with disabilities.
If this sounds like something you might be interested in doing, head to the Special Hope Child Sponsorship Page and sign up — let me know if I can help in any way. And thanks for listening.
The wonderful and infuriating thing about friends is that they push you to do things you think are beyond your capabilities. Yesterday, during Abbee And Mel Go To the Gym Time*, Abbee started asking me if I wanted to train for a marathon with her.
Now, Abbee is a former high-school cross-country runner. I have never been a runner; my lung capacity has been constricted by chest-tube scar tissue since I was 2 years old, resulting in a constant borderline-asthmatic peak-flow test score. In other words, imagine being on the edge of a very, very mild asthma attack your entire life. Rolfing (deep myofascial therapy) significantly improved my lung capacity a few years ago, but oxygen is still kinda hard. My temperament is also far more of a sprinter’s than a marathoner’s; I work almost entirely in short spurts and am mildly horrified by the idea of doing anything (except sleeping) for several hours in a row.
But I’m intrigued. I thought my brain was a sprinter’s brain, and so my body must be a sprinter’s body, with fast-twitch rather than slow-twitch muscle fibers. But that’s not necessarily the case. Last year, a kinesiology major watching me lift weights commented that I was powering slowly out of lifts rather than exploding through them, and that my agility drills were quick to plateau — indicating that I might have a distance runner’s muscle composition, if only I’d develop it instead of training for exactly its opposite. “You’d probably be a good marathon runner,” he said.
I laughed, and then I thought about it, and then I laughed again. And then I kept thinking about it. I do want to develop the sort of discipline that distance running would force me to develop — the long-term haul, the consistency, the quiet solitude I find so difficult. I wonder what my limitations are. So I told Abbee I’d train for a 5k with her for the end of the semester, and then we’ll decide more based on how that goes.
This post is to remind me of that decision (although I’m pretty sure Abbee is going to do that anyway).
*One of many “Abbee and Mel Do Action X” formats. Other common formats include “Abbee And Mel Cook European Food,” “Abbee and Mel Pray A Multilingual Rosary While Laughing Uproariously,” “Abbee and Mel Do A Late-Night Diner Run,” “Abbee and Mel at Daily Mass,” and dozens of other little things that constantly remind me how blessed I am to have friends like this.