Someone Like You
by Pawel Ngei & Ana Sun
Pulling down the zipper on the black tubular sleeve, Suz opened it so that it folded out flat, exposing the connective wires from the electrodes which snaked into a small pocket she’d made to house the tiny controller.
Make a copy of the wiring, or program a new version? Suz drummed her fingers on the table, pondering what to do next. Her eyes wandered from the splash of vivid colours which resembled Ada Lovelace on one wall, to a 3D printer harbouring quiet ambition in the corner. A rack of transparent boxes sat next to it, stuffed full with projects in various stages of completion.
Mornings were quiet and precious; she often had all the Glider hackerspace to herself for at least a couple of hours. Most of the members either came in the evenings or were night owls who stumbled home at dawn. Such a luxury to be able to hear her own thoughts without being drowned out by the world.
The autumn sun stole through thick clouds, scattering golden light through dust-covered windows, few plants in their hydroponic pots and onto the communal table where Suz inspected her work. The metal on the tiny controller board glinted.
Suz adjusted the placement of the board. Better to work on the controller on the weekend when she wouldn’t be interrupted. It shouldn’t be too tricky—the open-source library she had been using was a good basis to work from—but there were few things worse than having to stop halfway to go to class when she got into the programming flow.
She prodded at the wires, checking their connections. The next prototype would require more electrodes. It would be efficient to make a pattern from her original that she could build upon. She glanced at the clock on the wall. There would be time to finish the pattern before having to go into the campus for her meeting with her new supervisor later on. There, decision made.
Humming to herself, Suz made her way to the stationery cupboard across the other side of the room, past an old Soviet synthesizer and Mandy’s favorite sewing machine—a Victorian Singer installed on a scaffolding plank and a pair of 1960s Marshalls. With one hand, she retrieved a pencil and pulled out a large sheet of tracing paper from a generous stack. She was just starting to trace the two-dimensional locations of the electrodes when the front door clicked open.
“You’re early today, guapa!” A voice full of sunshine called from the doorway.
“No, Mandy, you’re early,” Suz called back to her friend, never once taking her eyes off her tracing. She caught herself smiling. Mandy always put her in a good mood. “Qué tal?”
“Bien! Good, of course! When am I never good?”
There was a rustle—Mandy hanging up her jacket—then a thud—Mandy dropping off her shoulder bag of equipment next to the synthesizer.
Suz got up and greeted her with an air kiss, trying not to get entangled with the huge headphones Mandy always wore around her neck during the rare times she wasn’t listening to music. Her friend was a full-figured contrast to Suz’s stick-thin physique, and a good deal shorter.
“Looking great!” Mandy nodded at Suz’s work on the table. “Working like the way you want it to?”
“Yeah, it does the basics. I can tell the camera to focus and take a photo,” Suz said. “Only in auto mode though. Next prototype, I’m going full manual.”
“Nice! Very nice,” said Mandy. “You realise there’s a problem, right?”
“What?” Worry crept over Suz’s face.
Suz burst out laughing.
When she first joined Glider, she’d found the ragtag group of hackers and inventors to be very different from the clubs or societies she’d been part of at university. It was Mandy who welcomed her and made sure she was settled and supported. Sensing that Suz was shy, Mandy went out of her way to introduce her to the rest of the community, stealthily setting up opportunities for her to interact with the others. Back then, Mandy was regularly decked out in various shades of black and arrays of chrome spikes. Sometime in the last couple of years, Mandy’s fashion sense shifted from being entirely monochromatic to a multicolour explosion. She’d lost the spikes and the black lipstick but kept the piercings and tattoos.
“Seriously, try some colour.” Mandy was grinning. “I’ve got some leftover William Morris’ fabric that has a deep orange accent. Same colour as your hair. It’d look totally sick on you.”
She mimed a little fashion show with the toss of her own hair as she wandered towards the kitchenette in search of coffee.
“No school today?”
“No, no classes this morning, though I have to go in shortly for a supervisor meeting.” Suz drawled on the last two words, trying to give them the weight she felt on her shoulders.
“Oh, that!” Mandy called over the bubbling kettle. “You’ll do fine.”
Suz was doubtful. “I hadn’t gotten any replies to my email.”
There was a tinkling of a teaspoon against a mug as sugar was being stirred.
“They probably get too many. I’m sure they will love your idea, it’s insanely cool.”
The path leading out from Glider was one of Suz’s favourite places. The solar panels glimmered on the low roof on sunny days, and the plants in the communal food garden threw different shadows depending on the time of day and the time of year. Suz loved how the panels were simply imitating the plants in their invisible magic, converting sunlight into energy.
The walk to the campus was actually less than half an hour, but Suz gave herself plenty of time so that she could take advantage of her camera on a clear day. The morning was chilly, and she was grateful for the extra warmth the prototype sleeve gave to her right arm.
She had taken a different route today to avoid the busiest streets. Often, the most interesting subjects for street photography were openly visible to the naked eye. Things that people would walk past because they were too busy getting on with life. Objects imbued with untold stories. An abandoned chair, a child’s lost shoe…or a toy accidentally left behind.
There was a teddy bear on the pavement next to a low fence. It was only slightly dusty, perhaps freshly fallen from a child’s hand or a baby stroller. Suz pulled out her camera from her pocket and switched it on in one smooth, practised motion. Her fingers wrapped around the custom 3D printed left-hand grip she’d had made for it. The camera stayed steady.
She stepped back and crouched down, focusing the camera on the toy in the bottom third of her frame, the rest of the street fading into a vanishing point in the top right of the shot. She flexed her right forearm. The sleeve responded. Focus. Shutter release. Stretching up and standing tall over the toy bear, again, Suz flexed her right forearm. Focus, shutter release.
“Oh my, aren’t you amazing!”
There was a short, plump woman next to Suz, her greying hair tucked under a powder pink beanie.
“Are you a photography student? My son studies photography,” the woman burbled. She waved her hand in a wide arc, as if indicating all the world was his oyster. “He does what you do, stands around and takes photos of things in the street. Does it in studios too! Fancy equipment and everything. But you, my dear! Tell me, how do you do it?”
“I—” Suz started to say, but her voice caught in her throat, a tangle of a thousand tentacles.
“I mean, he normally needs two hands and can barely balance with a heavy camera. How do you do it…with your condition?” The woman looked pointedly at Suz’s right arm, where, instead of a fully grown hand, it ended in a rounded stump.
“I—” Suz tried to keep her voice level. Deep breath. “I find ways.”
“How formidable!” The woman gushed. “I shall have to tell my son that I met this remarkable young woman today—he has no excuse!”
She wriggled a finger in the air in front of her face, as if her son was right there. “Have a good day, my dear! Stay warm!”
Suz stood frozen for a moment as the woman walked away, her lips pursed. She should be used to this by now, but her rage was a cage of angry lions. These episodes happened all the time; someone would randomly tell her how inspirational she was, even when she was just doing her thing. As if it was a miracle that she could get out of bed and put on her own clothes, let alone have the wherewithal to do what she enjoyed?
Pocketing her camera, she picked up the abandoned teddy and propped it on top of the fence.
“Well, you and I have something in common,” she told the bear. “People think we can’t possibly be real.”
Pulling her coat more tightly around herself, Suz made a beeline for the university campus. The light was still perfect for photos, but she was no longer in the mood.
Matthias’ office was on the second floor within the Biomedical Engineering Faculty building. Suz had sometimes wondered how such a young lecturer managed to score one of the few available corner offices. She was well aware of the unspoken but blatant hierarchy among the teaching staff, and made a decision long ago that academia wasn’t for her. Still, only one semester to go, and she would have a degree—a pathway to potential dreams.
Matthias was pacing the narrow space between his desk and the window when he spotted her in the doorway. His tall, lanky form cast a long shadow across the floor, a skinny cactus in a desert.
“Ah! Suzanne!” He waved her into one of the colourful plastic seats across from his sombre black office chair. “Come in, I wasn’t expecting you just yet.”
For the second time today, Suz was early. She slid her backpack off her shoulders and left it at her feet as she sat down. The conversation with the woman in the street had left her feeling off. Her angry lions had been joined by a whole host of restless wild animals. She should have taken some time to compose herself on the way, but well—too late now.
“So.” Matthias leaned forward, making a steeple with his fingertips. “You’ve seen the list of thesis topics you can choose from?”
“Yes, though I replied to say I would prefer not to work on prosthetics, I—“
“Ah, yes. You had a project in mind, you said.” Matthais paused and adjusted the black-rimmed glasses on his nose.
Suz tried to recall the detailed email she sent about creating an electromyography- based interface that could be customised for people who were missing a limb, allowing them to control various devices without the need for clumsy prosthetics. For some reason that she had never fathomed, prosthetics were always modelled on the able-bodied. You were missing a hand, therefore you must have a hand replaced. You were missing a leg, therefore we would make you a fake leg.
The actual challenge was that interfaces always assumed able-bodiedness. Suz was convinced that there was an opportunity here to create examples of technology that adapted to the human being, rather than the other way around. Her own prototype with her camera had proved to her that the concept could work.
It must have been when she was five years old or so that Suz realised she was not the same as the other kids. She felt self-conscious around others, but it never seemed to her that she was missing anything. It was only when she’d grown up and met others that she realised they might have very different views. To some who become disabled later on in life, prosthetics enabled them to get on with the day-to-day; prosthetics gave them confidence. Everyone she had met had a unique view of their own disability in relation to the world. But for Suz, life with one hand was all that she’d ever known.
“Suzanne.” Matthias’ voice cut through her reverie. “If you want to get anywhere in the field after this degree, we need to continue the great work that’s already being done to improve the lives of people. Lives of people who—”
Suz caught him glancing at her arm then looked away hurriedly. The discomfort of someone who could only think of her as defective.
There was another pause.
“Suzanne, you’re special, we need someone like you on the team.”
All at once, exhaustion overtook her. Someone like you.
She tried to keep the resignation out of her voice. “So, are you telling me I have no choice?”
“You do,” Matthias explained. “But I think it would be better for you to pick one off the list.”
He shuffled two printed pages across the table to her. The sheets were neatly stapled in the top left corner. She skimmed the titles of potential projects.
Optimising the prosthetic knee joint for amputee sprinting.
Building a friction-sensing finger for prosthetic or robotic gripping.
Muscle and joint functions during walking in individuals with transfemoral amputation.
“The one on prosthetic gripping has your name written all over it. It’s made for you, Suzanne.”
Suz eyes glazed over. No, this wasn’t right. She had never needed a right hand, she had never felt incomplete. What was the point of working on a project that was trying to make her into something she didn’t want to be?
“Sorry to drop this on you,” Matthias resumed. “But we need you to make a decision by the end of this week—”
“This week?” Suz protested. “I thought we had a couple of months to discuss this…”
“Confirming these projects are condition to a funding grant we are applying for—“
“Suz, it’s how things work.”
Impatience was creeping into Matthias’ usually kindly voice. “Think of it: you will get to work with the other top students of your year. There could only be a good result because we’ll help each other out. You’ll be guaranteed an internship in the prosthetic industry. And there is no doubt that someone like you would be sought after.”
Suz felt as if she couldn’t breathe. Every bone in her body felt like a liability. The wild animals in her head had begun an uncontrollable rampage.
Someone like you.
Matthias was oblivious to her internal war.
“Think about it, ’kay? Just tell me which topic you want to tackle by the end of this week.”
There were no more words to be said, so Suz got up and walked out. She wasn’t even sure if she actually said goodbye, or thank you, or anything at all.
“Lunch doesn’t eat itself, you know.” Suz became aware that her mother was talking.
The plate of spaghetti carbonara on the table in front of her was barely touched. It smelled good, but Suz didn’t feel like eating. Not wanting to cause a scene, she made a show of picking up her fork again.
“You need to eat, Suz, you’ve been losing weight.” Her mother sat down next to her. “So, what’s going on? I thought you were meeting your supervisor today.”
“He has totally ignored my proposal—wants me to work on prosthetics.”
“That’s a good thing, right?’
Suz looked at her mother, trying to keep the agony out of her face and failing. Deep down, she knew that her parents worried about her independence; they wanted her to see through a vocation that would get her a job, a career—some degree of security into the future.
“Ma, you know that feels wrong to me.”
“Yes.” Ma suddenly got up and turned away, deliberately heading towards the kitchen without another word.
It was a familiar moment; Ma walking away from the conversation to avoid the fight that they would have had. How Suz had continually refused special education funding support which could have helped lessen the financial strain on the family. That argument was old, unresolved and painful.
Ma returned with two cups of coffee. Suz knew that look on her face all too well, the poker face she always mustered when she wrestled to remain calm.
“Suz, really, I thought you were past this.”
Suz put her fork down. “I don’t want to spend my life making things that are supposed to make me into something I am not.” The enraged lions were back and had escaped their cage. “I am not…broken. I want people to see that their definition of ‘normal’ isn’t right—that there are many types of normal. For them to stop modelling us after able-bodied—”
“Suz, please.” Ma sounded tired. “Here are people willing to help you get ahead. Why are you pushing back?”
“Yes, yes, I get that.” Breathe. Suz realised she didn’t want to start another fight either. Why doesn’t Ma understand?
“Ma, I…I’m not even part of the conversation about what makes a better world for me. It’s just…assumed.”
Suz looked at her mother, who looked out the window. A moment of silence passed.
Ma shrugged, as if her patience had deserted her. “Try and see if you could find a compromise.”
Compromise? Suz raised an eyebrow. She had to admit Ma could be right. Perhaps there might be another way.
“If you’re not going to eat that lunch, I’m going to have to bin it.” But Ma said that with a wry smile.
Suz gave her mother a quick hug, grabbed her plate and shoved it onto a clear shelf in the fridge. She might eat it later. Even in her worst moments, wasting food wasn’t acceptable.
Her inner raging menagerie was refusing to be tamed and controlled. Suz reached into her backpack for the sheets that Matthias handed to her. She threw them across the room.
There was a ping as her phone buzzed. She dug it out of her coat pocket.
A message from Mandy. How did it go?
Through the window, the world outside was still bright. It had been cloudy around the middle of the day, but there were a few hours of good daylight left.
She swiped a two-word message back to Mandy. Photo walk?
Though for Mandy, it would be an audio walk. Whatever, they’d known each other long enough by now.
Sure. Meet @ Glider in 20?
It was colder by the river than the walk to get there, but the fair weather drew out a number of people, including some tourists. Jimi Hendrix blasted from a beer garden nearby. Some music never got old. The smell of fresh bread from the bakery mingled with the smokiness of coffee from the café-bistro.
Suz knew that Mandy loved it down here because of the opportunities for soundscapes; random snippets of conversation in combination with the unique background noises made interesting raw material for her music. Suz took conscious effort to make sure individuals were not identifiable. In any case, she would rather focus on empty places where people had left behind—to capture traces of humanity’s aftermath.
Her camera was fixed onto a monopod. It looked like a futuristic walking staff. She snapped a stack of crates left by the bistro’s backdoor, a short moment before someone came out from the kitchen and began to carry them inside. Street photography was as much about timing as well as aesthetics.
“Well, that’s disappointing,” Mandy concluded, after hearing Suz recount the events of the day. She was fiddling with a setting on her audio recorder as they rested by the river. “He didn’t even hear you out?’
“That…I don’t understand. You come with intellect and energy, and he just shoved his list of projects at you?”
“They’ve got this setup, that if they planned for projects in a certain way, they could apply for funding,” Suz tried to explain. “The other thing is, some of these projects pretty much guarantee an apprenticeship, so I don’t know. I’m not sure what to do anymore.”
“Huh, I see. Well, fuck ’em.” Mandy picked up a pebble and tried to skim it across the water. It hopped once and disappeared.
“I can’t just tell them to eff-off, I need to complete my degree and—”
Mandy paused to look for another pebble. “The way I see it? Those are vanity projects driven by business interests, right?”
Mandy pointed an accusing finger at an empty point in the air. “They are essentially pandering to those already established in the industry to make more money out of disabled people. It’s ugly, insidious capitalism. Telling you that you need to look a certain way—to be a certain way—to be a valid human being. It’s dirty. Hell on wheels, dirty is an understatement. So I say, fuck’em.”
Mandy always saw through the thin guise that propped up the power dynamics of the status quo. Suz let that sink in for a moment.
“Ma says I need to be pragmatic about things. She wants me to be independent—”
“But you are independent—“
“She is still sore that I refused to apply for disability benefits.”
“Why didn’t you?”
“I don’t know—I don’t want to be seen like I’m taking advantage of the system? It’s not like I needed it? Because I… ” Suz searched for the right words.
“Because you’re afraid you’d be judged as having been given special privileges due to your disability?” Mandy finished her thought for her.
Yes, that was it. Being judged. Suz nodded.
“Maybe I’m being selfish.” She sighed. All of this was getting tiresome. “I should pick one of those stupid projects and just swallow it. Change the system from the inside. It’ll take years but…maybe the best way?”
When Mandy didn’t respond for some minutes, Suz looked up to see her deep in thought.
“So, Suz. Here’s an idea, and of course you can say no.”
“What if—what if you took some benefits anyway…and took a gap year.”
“A gap year—a year off, so to speak, from your studies.”
Suz looked baffled. Mandy let out a sigh.
“Look—money is dirty, right? And capitalism is abhorrent and unkind. But this is the world we live in. For now, we still need money to live. So what if you apply for benefits—”
Suz tried not to balk at the thought.
“—and think of it as a ‘salary’ for you to complete your own project this next year. Consider it as something to help you subvert the expectations everyone is heaping on you—your mother, Matthias. You’ll carve your own way, make your own connections—you would be able to design your own future.”
Design her own future? That seemed such a lofty thought that Suz was laughing aloud before she realised it. Mandy looked amused but wasn’t put off.
“Think about it, guapa. You’ll have something yours to show for it at the end, and all of us at Glider would gladly help you. We’re your other family that love you the way you are. You know that, right?”
The last words in Mandy’s sentence were muffled because Suz had leapt up and given her friend a great big hug.
It was late Friday morning, Suz was back in the faculty building, hovering by Matthias’ door. In her hand was the list, a little crumpled but she had smoothed it out to look as if she had been preoccupied reading it. At the top of her backpack was an application form she’d filled out last night—a request to the dean for a gap year. She hadn’t slept. Her body ached, and her eyes were uncomfortably dry. One version of the future stretched forward like an obstacle course, the other was an open void of possibilities, equally frightening.
“I’m sure you can find some joy in the process,” Ma had said when they talked again. “You’ll be helping out people who are doing good work in advancing prosthetics, making lives easier for others who might otherwise struggle. It might take effort in the beginning, but it’ll be worth it. You’ll see.”
Her heart was beating much too fast. The paper stuck to the sweat on her hands. She swallowed a sense of panic, a fish out of water. A gazelle running away as fast as it could with nowhere to hide.
Matthias’ door was not fully closed. He was speaking to someone. Suz strained to hear but couldn’t detect another voice. He must be on the phone.
“…oh yes, and we have Suzanne, I’m quite sure she’ll agree to join us.”
Suz stopped dead at the mention of her own name. Matthais’ voice continued.
“She’s our trump card. Her…disability will give us credibility and legitimacy. I’m certain we’ll get the funding, and—”
Suz didn’t stay to hear the rest. On her way out of the faculty building, she crumpled the papers in her hand and tossed them into the rubbish bin. Her backpack felt a little lighter too; she’d dropped off the gap year application into the dean’s mailbox.
Her feet walked on autopilot. Before too long, she was standing in front of Glider. The solar panels gleamed despite the grey day. The sunflowers on either side of the front gate were still in full bloom, though the beans that had been part of many communal lunches throughout the summer were definitely on their way out.
She lingered on the path, taking in the scent of the lavender and the rosemary bush. As she walked inside, she paused to retrieve her project from her locker. Mandy wasn’t there yet—she was probably out recording. Robert was in his usual corner, sketching a new design for something, probably for one of his quirky lamps. He threw Suz a salute as she wandered over to the worktable and laid out her prototype.
Once she finished making the version for full control of her digital camera, she wanted to make other things. A way to type more quickly with a modified keyboard input, or to interact with household appliances that did not involve voice. She could potentially create custom interfaces for others to use technology the way they want—whether disabled or not. There was so much she could do.
Suz looked around Glider, its vibrant decor and its constant clutter of projects half-done. This was home. Today, she would program a new controller. Tomorrow, she would file for funding, and make her own way.
Licensed CC-BY-SA 4.0 Pawel Ngei & Ana Sun