By Ivan Baidak
I feel that otherness is inside us—in what we think about, in what we consider important, in how we treat people around us. It has always surprised me how different we can be; how different people are interested in different things, from drama to machine-building; how they have different tastes in music and food; how they root for different sports teams. Our appearance can be part of what others like about us, but can it become an object of ridicule, mockery, or discrimination?
Our society has learned to accept people with disabilities even though it can’t always provide the conditions they need. Scared of the words “cancer” and “AIDS,” we’ve developed an empathetic form of response to them. Low-income groups get all kinds of help. We’ve been fighting hard against gender and racial inequality.
Yet, people with disfigurements are left outside this system of acceptance.
One day, on my way back home, I met a man with Tourette’s syndrome on the tram. I remember him taking a back seat—to avoid unwanted attention, most probably. His head jerked. He made some random sounds, and I saw he was trying to control himself. When passengers started to make disapproving noises, his body tensed up, and his tic worsened, so I went closer and, stopping in front of him so he could see my blinking, I tried to make him understand: he was not alone. He took the hint and smiled. His tic attack calmed.
How to respond is always a delicate question. It’s never clear what is the right way to react: to look away—or to let your eyes linger. Either reaction might hurt the person. There was another situation: I saw a girl with Tourette’s syndrome on the bus, but when she noticed my tics, she burst out screaming and crying, and then she hurled insults at me. At the next stop, the girl got off the bus in a fit of tears, and I followed her, trying to excuse myself and explain that I was just like her.
“I’m just like you,” I said, trying to calm her down. “I have tics, too. I didn’t do that on purpose.”
She slapped me. All I remember is her flushed, tear-stained face. Did she hurt my feelings? No, she didn’t.
Back in the days when I was still struggling to work at the factory one of my co-workers tried to copy my tics. It was just a joke for him. He didn’t do it out of spite, I realize now, but at that moment, I felt like grabbing a tool and killing him. Could that girl really believe that I had the same rare disorder like her? Hardly. That’s why I held no grudge against her. That co-worker of mine also remained unhurt, even though I had to describe to him in graphic detail what kind of accidents could happen on the production floor.
Whenever I meet someone with a disorder, it helps me accept myself and understand other people whose attention—just like mine—is drawn to everything unusual. This seems to be human nature: unusual things attract us, and we’re wired to react. We should be aware enough, though, to react appropriately—that’s what matters.
•
How can you explain your disorder to others?
This was the subject of our next group meeting. At these get-togethers, we usually talked about living with challenges, and we listened to people who needed to get it off their chests.
“There’s no way I can do it,” Anna, the first to speak, said. “I just say that I have a hemangioma and let them wonder what that is. Otherwise, I’d spend all day re-telling the history of my disorder to the curious. But then, perhaps, I should charge for that. That would be a nice way to make some cash and entertain people at the same time.”
“How can you explain your challenge to others, and do you have to do it at all?” David, our group therapist, asked, stepping in. “It’s not a good idea to dwell on uncomfortable things or situations if you can help it. When we’re talking to others, our explanations sometimes sound like justifications. But everyone seeks approval one way or another. Especially from the person they’re in a relationship with. And it doesn’t matter if that person has a challenge. We want them to approve our hard work, our opinions, our funny jokes. That’s why you should talk about your challenge to the people you’re working, socializing, or building relationships with. It will put you at ease, both of you, because that person—believe me—also feels discomfort, as they’re not sure if their behaviour hurts you.”
“But what about random people?” someone asked.
“You can tell them all about it, ignore them, or just say that it’s an intolerant question, you’re not comfortable answering it, and could they stop bothering you,” David said. “Do what’s comfortable for you.”
“But some people can react badly to that.”
“Right. But you must learn how to stand up for yourself.”
“I usually joke about it,” Eva said. “Whenever someone asks me about the patches on my skin, I pretend I have no idea what they’re talking about. ‘Patches? What patches? What’s wrong with me? Perhaps, there’s something wrong with you? It’s all your imagination. I don’t have any patches. Are you feeling unwell? Should I call a doctor? It’s so hot today.’ This is my way of dealing with it, and it’s very effective and fun.”
“And how would you like others to treat you?” David asked.
“I wish they didn’t notice us at all,” Anna said. “Or, rather, ignored us. Well … people can get sensitive even about someone’s bright hair colour or unconventional clothes. But I would still like to attract less attention. And it doesn’t really matter whether it’s negative or positive. I don’t care. Once, I volunteered to help a girl in a wheelchair to get to a concert. It was a large stadium, big crowds, so we took a taxi home instead of a bus. I remember how the driver stared at us in the mirror, and when we arrived, he refused to take our money. An act of kindness, alright, but it hurt my feelings. I don’t want anyone’s help when I’m not asking for it.”
The meeting finished, as always, with a heated discussion. People shared their thoughts, healing their wounds.
“I’ll be happy if today’s conversation helps you better understand yourselves,” David said, wrapping it up. “Please remember that you’re just like any other people, and you also have the right to a decent life and relationships. Don’t be so hard on others. They might just need a bit more time to get used to you, but there’s nothing bad about that.”
Then everyone left. But I remember that David’s last phrase ruffled Eva’s feelings.
“What’s the matter?” I asked, seeing her looking annoyed.
“Did you hear what he said? They just need ‘to get used’ to us, but it ‘doesn’t mean anything’! No, Adam, it means a lot. It means that people will always have ‘to get used to’ me, learn to accept me, and understand me. It means that, whenever I meet someone, I have to spend the first ten minutes assuring them that I’m normal. It means that I always have to create a bubble around me. It means that I can never make a good first impression—it’s always a bit weird—and that no one will fall in love with me at first sight. It means a lot more than that, Adam”
•
I have got used to living with tics. But I will hardly ever get used to its surprising new forms, just like I will never make peace with the fact that I have to live through this. I have long been trying to understand my feelings, but I could never put my finger on the format of our relationship. I’m in a constant struggle with my body. Each of its new tricks catches me unawares. My body can make me cough, jerk my neck, blink, raise my hands, stretch my legs, shout out random sounds. It looks like some kind of a role play for domination, but I often get tired of the battle which feels more like a game of anti-chess.
I might find myself buttoning my shirt up and down dozens of times, winding my watch, playing with my phone, opening and closing popular apps as if performing some ritual. I don’t always tie my shoes because I get angry when I can’t align the eyelets. I have to be extra careful when cooking. There’s always a risk I might burn myself. I steer clear of amusement parks because it might have a sad ending. I’m afraid of having sex, too, since I’m not sure I’ll be able to control the moment of orgasm. That’s very distressing.
Sometimes, I want to hurt myself, to punish this body of mine that gets so tired of itself that it keeps aching and causing muscle cramps. If you don’t sleep well, your tic is sure to exhaust you in the morning. If you let yourself drink more coffee or alcohol than usual, it will destroy you. Even if I won a million dollars in the lottery, the joy I’d feel would only make my tic worse. That’s why I avoid all kinds of emotional triggers: I don’t read bad news; I don’t watch dramas; I protect myself from intense emotions. It’s quite uncomfortable. A life like this is not fun. I wish I could make a bargain with Tourette’s syndrome or, at least, take a brief vacation from it.
•
It was curious that the reactions we discussed at the most recent group meeting depended on a person’s age. Seniors were the most annoying—well-versed in pretty much everything, they knew the solutions to all my problems. One woman, an ardent believer, nearly dragged me to a church where they had an icon of some saint on display. That category of people was the most troublesome because they tried too hard to help, to the point of being intrusive. Teenagers shouted insults or made rude gestures, but that also didn’t hurt, since they didn’t fully understand their actions. The reaction of my peers, young men and women, was the weakest. They usually pretended not to notice anything and played it by ear, feigning indifference, compassion, or understanding. That was the worst. In the rare moments when they did notice me, like in a caf., their wordless glances and barely audible whispers always spoke the loudest.
•
The new routine swallowed me whole. Now, the three of us—Anna, Marta, and I—lived together. I continued to work from home. Anna returned after the morning shift around noon. Marta’s schedule remained unclear. She often locked herself in her room. Marta and I didn’t talk much. Each of us had a separate bedroom, and in the evenings, we got together in a large living room to discuss the events of the day or share memories. Eva lived in our neighbourhood, and she often dropped in. We created our own social mini-group.
My reclusive life—working from home, giving Mama some money for groceries, rarely going outside, seeing only a small circle of friends—started to change. The new circumstances were not quite comfortable, as all things new scared me, but I definitely benefitted from them. I had some new household chores, like paying the utility bills. It was stressful, too: I was worried that the post office employees would think there was something wrong with me and call the police … or an ambulance. Anna invited her friends over sometimes and urged me to join her volunteer projects. Finding myself in unfamiliar situations, I built up my confidence. It took me a long while to regain it, though. We were young and carefree once, and we entered adult life with confidence and optimism, but it was amazing how quickly the world put us in our place—and how long it took to recover that positive attitude. Just a short time ago, I had been looking for a job that required lots of communication. I had often smiled, and I could not even imagine that the tic would become such a huge problem.
I had long since forgotten the meaning of friendship. It seemed to be something that had existed only in childhood. But now the four of us cooked dinner together, watched movies, and discussed all kinds of issues—from Latin American literature to how automation would replace the human workforce—devising a few schemes for fighting plastic waste along the way. We chuckled and giggled, and burst into song like drunks whenever Eva brought her guitar.
No matter how awful things had been “outside,” inside, all of us felt at ease. It felt good to be together, and we needed each other.
“I have never ridden a bicycle in my life,” Marta said.
“And I have never smoked,” Anna said. “It would be too dangerous for me,” she added, explaining herself for some reason.
We were playing Never Have I Ever. I remembered so many things I had never tried, or rather, I had never allowed myself to try.
Ceramics had always fascinated me. I wanted to try to make something out of clay, but I didn’t want my tic to bother anyone, and I wasn’t sure I could control myself long enough to finish my work.
The conversation lasted deep into the night. We shared our dreams and made our bucket lists. It felt as if all of it would finally come true. A new stage in our lives had begun. Feeling safe, we looked boldly to the future, disregarding the dark past.
•
The following week, my flatmates and I attended Eva’s exhibition.
Eva had talked about it for a long while. But she had worried about public reaction so much that she’d nearly cancelled it on several occasions.
“You’re almost there. Don’t back out now,” Anna told her, trying to calm her nerves.
It was an exhibition of Eva’s nude photos. She decided to undress and show the public what vitiligo looked like. In a long narrow hallway, twenty photographs of naked Eva hung, showing her body from different angles. I wondered whether the connoisseurs of that photography style appreciated the photos. But it was most curious to watch the public react to vitiligo.
“My wife’s put on a lot of weight lately,” a man in his forties said, “but this looks even worse.”
His was the only negative comment for the entire opening night, though.
People arrived and looked at the pieces in silence or whispered a few words to each other, pretending they understood the key message of the exhibition. After all, that was exactly what you were expected to do when you didn’t understand something. A random visitor might have thought that it was an exhibition of birth defects or a dermatology conference. There was a small reception afterwards, though, and the atmosphere livened up. The guests enjoyed their drinks and had fun, forgetting that they had came there to discuss equality for people with appearance issues. But then, people do joke at funerals, claiming that the deceased was high-spirited and that’s exactly the farewell they would have wanted.
The exhibition was followed by a brief press conference where Eva spoke about the history of her illness, treatments, public moods, and the idea behind her project.
“What are people most curious about in your case?” a woman asked during the Q&A session.
“They wonder if my illness is infectious,” Eva said, smiling. “Most often, I get this question from people sitting next to me on the train or an airplane.”
“Does your vitiligo limit you in any way?”
“I used to have a handful of limitations. But now only one is left. I take care in the sun and cover up when it gets too hot. When I was little, I got a sunburn during a sporting event and developed blisters all over the discoloured areas of my skin. They hurt for a month or so. That was when I realized I’d better avoid the sun when it’s really scorching out. That is my only limitation.”
“What are your biggest fears?”
“I was scared that people would not accept me. I was afraid of insults. Negative stuff is uncomfortable for anyone, after all. But I was anxious that my work, my ideas, my thoughts would not be accepted, just because of my appearance. That is a thing of the past, though. I have already passed that stage.”
“So, you don’t have any fears now?”
“I’m only afraid that my children will get vitiligo. But as far as I am concerned, no, I don’t have any fears.”
“What is the message of your exhibition?” a reporter asked. “And how should people react to appearance issues?”
“They should know that these things exist and that many people around them are different. But I wish they would not react to it at all.”
This was the last question. Informal conversations resumed.
People walked around the exhibition, taking pictures with their phones, or simple came up and thanked our friend Eva—Eva who had made it as a makeup artist and finally achieved emotional closure.
Іvan Baidak (born in 1990) is a daring Ukrainian fiction writer whose debut novel Personally Me Personally for You (2013) became a national bestseller and garnered excellent critical reviews. His two short story collections, Role Plays (2014) and The Shadows of Our Dates (2017), topped bookstore bestseller lists. His latest novel A Man With My Name (2019) was excellent proof of the writer’s maturity. In 2020, he wrote a social novel about the inclusion, (In)visible, which received publicity among the elite of society. The book was recognized as one of the best in 2020 according to PEN Ukraine.
(Read the interview with Ivan Baidak here.)