Text by Svetlana Li (a pseudonym) Photos by Vladimir Sevrinovsky Translation by Kat Tancock This article originally appeared in Glasnaya
In the summer of 2024, blogger Alyona Kapustyan, who is fully deaf-blind, and sightless massage therapist Islomiddin Barotov had a son – who can see and hear. Here’s how she, a poet, and he, an athlete, are building a family and undermining stereotypes about relationships and parenthood among people with disabilities.
It’s overcast outside, and the light is on in 26-year-old Alyona’s kitchen. True, she doesn’t need it: she completely lost her sight at six due to illness and an operation. But once, as a child, Alyona got up during the night to get a drink of water. She didn’t turn the light on and accidentally gave her mother quite a fright when they crashed into one another in the dark. Ever since, Alyona has acquired the habit of flicking the switch – for her mother, for guests, and now also for her son, Ruslan.
The young mother is sitting on the sofa. She and her child are home alone; the baby’s father, Islomiddin, won’t be back until late evening. A pink-toned portrait of Alyona hangs on the wall above the sofa: a confident pose, a smile, long locks of blond hair. The reality is a bit less polished, though it reflects mothers’ lives around the world: simple, comfortable clothing for around the house and an infant on the knee.
The other important difference is that Alyona is holding a Braille display that helps her communicate and work. The device looks like a keyboard, but with the dots of the Braille alphabet instead of letters. Since 2022, visually impaired children six and older have been provided these displays through a government insurance program, but Alyona’s stepfather gave her this one 12 years ago, when she was 14.
The device connects to a phone, transcribes any text appearing on the screen and lets users write replies. Communicating is easier with WhatsApp, as the name of the person you’re conversing with is in the screen’s upper corner, while in Telegram it’s at the bottom, so users have to scroll down to know who they’re communicating with. E-commerce site Ozon hasn’t been optimized to work with the display, so it’s easier to shop on its competitor, Wildberries. Thanks to this tool, Alyona is able to order groceries, communicate on social media, and run a blog about her life. The display is easy to use, but you do need to wash your hands constantly or it will get dirty and stop working.
Alyona has hearing aids behind her ears. She lost her hearing when she was two. These devices allow her to make out speech, but only if it’s at the right volume and well articulated. Saying something too loud causes an echo.
Alyona uses her voice reluctantly, and you have to get used to her pronunciation to understand her properly. She prefers to use messaging apps and the manual alphabet, also known as fingerspelling. While in sign language a single gesture depicts a word, in fingerspelling each sign is a letter that people “dictate” by tapping their fingers on the other person’s palm. Alyona learned fingerspelling when she was seven and sometimes even uses it to talk to herself, from one hand to the other – she says she just enjoys it.
Three years ago, the Connection Foundation offered Alyona free implants, miniature video cameras with chips that stimulate the optic nerve. The technology allows users to see outlines of objects and people. The foundation had already helped two blind people undergo successful operations. But Alyona turned them down. She is afraid of doctors, since she lost her sight after an unsuccessful surgical intervention. She worries she could be “turned into a moron.”
Alyona pours tea from an electric samovar by lowering her finger into the cup: once she feels the hot water, she turns off the tap. She drinks tea whenever she has a free moment. Of course, as time goes by, it’s become more complicated: if she lets down her guard, her baby will steal her display right out from under her nose.
A graduate of the Sergiyev Posad Boarding School for Deaf-Blind Children and Youth (now the A.I. Mescheryakov Family Center), Alyona took multiple years to get through the second, third, and fifth grades, due to a shortage of teaching staff. As a result, Alyona graduated late, not long before her 20th birthday. She then completed two programs at Moscow’s International Center for the Training and Development of Massage Therapists and worked as an aesthetician for more than five years. She writes poems and short stories and even won the grand prize in the So-tvorchestvo (Collaboration) literary competition.
If her child is crying, she feels vibrations from a bracelet she wears that responds to those types of sounds
Before her pregnancy, Alyona led an active life: she sculpted clay, went skydiving, attended professional forums and championships, ran 10Ks, and loved to go skating. She carried the flag at the closing ceremony of the Paralympic Games in Sochi, and felt the fans’ voices on her skin. “I’m very sensitive to vibrations,” she recalled in a conversation with Connection Foundation staff member Vladimir Korkunov. “They’re hard for me to tolerate when they’re strong – it’s like they’re beating against my body and nervous system.” She was happy that the ceremony was short.
After the Paralympics, Alyona performed on stage with Inclusion, a theater center that casts deaf-blind actors in leading roles. The play “In Touch/Prikasayemye,” in which six deaf-blind people tell their stories with the help of volunteers, was staged in London, Brussels, and Amsterdam, as well as at the Moscow Theater of Nations.
She gave birth via Caesarean section, with her mother present. The spinal anesthetic worked well. Alyona dozed off and didn’t hear her son’s first cries, even though she was wearing her hearing aids. “Mama shook my hand a little,” she says, “and I came to right away and found out from her that my son had been born.”
Care for her son is possible with help from home appliances and high-tech gadgets. Alyona uses a special device to cut her baby’s nails and prepares lunch in a multicooker. If her child is crying, she feels vibrations from a bracelet she wears that responds to those types of sounds.
Alyona can easily tell where her son is by his scent. “He smells like caramel,” she says. The young mother can sense a change in this scent when her child has spent time with other people. “Imagine a clean, fresh, untouched towel hanging somewhere. Someone comes over, washes their hands, dries them with the towel – and it retains the smell of their hands,” Alyona explains. “That’s what it’s like for me with my son: if someone’s been holding or kissing him, their scent remains.”
She also uses her sense of smell to find her way around. “The landing outside my door smells like the garbage chute by the elevator. And sometimes like men’s cologne. Almost all the neighbors on our floor wear some sort of cologne. There’s no smell like that on the other floors – I checked.”
Her son’s arrival meant Alyona had to take a break from her work as an aesthetician. She also doesn’t have time these days for creative pursuits. The small clay sculptures she made as a teenager are in her parents’ apartment. Alyona doesn’t even see her friends very often. But she’s not sad: “I feel like I’m resting and recharging before I get back to work.” She plans to return to her usual schedule when Ruslan starts daycare. Not long ago, after a year and a half off, she went out for a run.
That said, she hasn’t completely sworn off work – she’s just focusing on those things that don’t need her to be out of the house very often. As an accessibility consultant, Alyona inspects event spaces for inclusivity; once a month she writes articles, mainly essays on social themes, for the magazine Agregator schastya [Happiness Aggregator]. One time she interviewed the Zapashny Brothers: Alyona asked the circus stars questions, and volunteers typed their answers into a messaging app.
Alyona’s writing has also been published by the magazine Vash sobesednik [Your Conversation Partner]; deaf-blind authors produce content for the publication, which puts out a version in Braille. Alyona writes on topics she’s interested in and offers practical advice to those who are blind and hard of hearing.
In one article, she recalled a time when she was taking a taxi and the driver stopped the car unexpectedly and got out. She started to worry, but he came back and gave her a rose. Alyona advises Vash sobesednik readers to always transmit their location by GPS so their friends and family can see where their taxi is going.
Alyona calls 32-year-old Islomiddin her husband, but for the time being he has no intention of officially tying the knot, even though they’ve been together for four years. Islam, as his friends call him, thinks of himself as Alyona’s “pal and friend,” says he’s “a Muslim only anatomically, and otherwise an atheist,” and is convinced that a man “should have more than four” wives.
Islam can hear but, like Alyona, he has been completely blind since childhood: his vision “faded, faded and then disappeared.” He gathers his long hair into a ponytail. His velvety soft voice almost envelops the person he’s talking to. On Islam’s VKontakte page, selfies showing his bare athletic torso alternate with photos from running races and his massage room (he works as a massage therapist at the VKontakte corporate offices, as well as at his own clinic). There’s no mention of Alyona or of any children on his public page.
Besides Ruslan, Islam has a son and a daughter with his (sighted) first wife. They were together for 10 years but split up during the pandemic. “We went through a lot. But I guess she wanted to be free. Well, and I didn’t want to be tied down, so we decided, screw it.” As he discusses his current family, the young father gives a warning: “This isn’t going to be a beautiful love story or anything like that. I believe in supplying information objectively, without sugarcoating it.”
Islam isn’t concerned that he rarely spends time with his son: in his own childhood, he only saw his parents on holidays and during vacations
Islam had been finding women on Twinby, a Russian dating app that became popular after Tinder left the country. He would navigate the selection of potential matches based on his sighted friends’ preferences – or, as he puts it, on “feedback from trusted people.” But he met Alyona in person, when they were both flying to Anapa for a forum of the Abilympics, a group that runs occupational skills competitions for people with disabilities.
They communicated at the forum via WhatsApp, and after they returned to Moscow, Islam learned fingerspelling and asked Alyona on a date. He uses the language rarely now: “You can’t chat for long with your fingers, it’s easier to type a longer thought.” That said, Alyona’s friends say she’s “like T9,” the classic predictive text technology: she understands what people are saying halfway through and finishes their sentences for them. The couple converse using fingerspelling when their baby is sleeping nearby, on the noisy metro, or if they need to discuss something private when there are people around.
Islam went to school in Ufa, at a special boarding school for children with visual impairments. He then studied computer engineering and massage in Moscow. “Plus I also attended a sports university, but I skipped out after third year: I had to pay off my first mortgage, there were debts. Taking time off for exams meant not working for a month.” He’s quite the athlete: he participates in judo competitions, hikes in the mountains, goes skydiving. He runs marathons with a volunteer guide who indicates direction by pulling at a rope with two looped ends that both runners hold onto.
As a child, Islam learned to play the accordion. He drifted from one teacher to another – they would banish him for bad behavior. But he still managed to graduate from music school and now records “lyrical chansons,” a genre he considers to be “music with deep significance, aimed at people with life experience.” He lays down tracks in his apartment, where he set up a soundproof studio. (“It’s for the recording, I don’t give a s— about the neighbors.”)
Despite his blindness, Islam makes his way around fairly well. Thanks to GPS and a white cane, he can get where he needs to go and take the metro. But even he sometimes needs help from sighted people. “Like a while ago, I was looking all over for this one shop,” he says. “I called a volunteer and said, ‘Brother, help me out, there’s supposed to be a Krasnoye & Beloye around here.’ I walked around with him until we found it.”
In cases like this, people with vision issues use the app Be My Eyes, through which sighted volunteers help them in real time: they orient them in space, describe objects and read menus out loud.
Islam says that his “paternal instincts only kick in when the children get older” and that he’s almost indifferent to babies: “When they’re tiny, I feel affectionate for two or three minutes and then that’s it, get away from me.” He found a nanny for Ruslan: “It was important that she be a normal, proper woman and not some kind of stuffy old lady.” The nanny takes Ruslan for walks three times a week.
For his part, Islam goes running on Saturdays with his older son, who is nine. He takes his daughter, his middle child, to cheerleading practice. He believes that parents have a duty to provide children with “basic guidance”: “Children will go on developing anyway, without your involvement, and it’s even better if you don’t impose your worldview on them.” Islam’s mother has already introduced her older grandchildren to her youngest – Islam himself hasn’t taken the initiative to get his previous family communicating with his current one.
Islam isn’t often at Alyona’s during the day. But he shows up almost every evening, because right now his apartment is “temporarily occupied by relatives” who came to visit him in Moscow. Islam isn’t concerned that he rarely spends time with his son: in his own childhood, he only saw his parents (who lived in another city) on holidays and during vacations.
Alyona maintains that she and Islam get along well: “We have a lot in common. We love staying in bed until noon; we don’t stick to a schedule. And we eat when we want, even sometimes late at night. I’m good at adapting.”
Alyona enrolled in a college of the Russian State Social University (RSSU) in 2019. The fact that she and other deaf-blind people are able to receive a post-secondary education is thanks to the 1971 Zagorsk Experiment, in which four graduates of the boarding school for deaf-blind children in Zagorsk (the Soviet-era name of Sergiyev Posad) – Natalia Korneyeva, Yuri Lerner, Sergei Sirotkin and Alexander Suvorov – earned degrees from Moscow State University’s School of Psychology.
Braille versions of books and lectures were created for the experimental subjects. Interestingly, the History of the Soviet Communist Party textbook had already been published in Braille, but a Braille edition of The Foundations of General Psychology had to be produced. The deaf-blind students used a Teletaktor – the precursor of Alyona’s Braille display – to communicate with their instructors and fellow students. Each student had a fan next to them, which the instructor would turn on to indicate they needed to answer a question.
Later, Suvorov earned a PhD and Sirotkin a graduate degree, while Lerner became a sculptor and Korneyeva worked at the Russian Academy of Education’s Psychology Institute.
Deaf-blind students need a tutor able to act as a tactile interpreter: someone trained to translate speech into tactile sign language. But despite requirements from the Ministry of Education and Science, Alyona’s college at RSSU didn’t employ any. So Alyona had to hire her tutors using money collected through the Connection Foundation. Daria Kovalyova, a determined-looking brunette with strong hands, became her primary helper. Strong hands are important in communicating with the deaf-blind.
Daria’s childhood dream was to become a speech pathologist. She attended a kindergarten specializing in speech therapy, where she learned to speak properly. After high school, she trained to work with children with developmental delays but no intellectual deficits, as well as at an institute that prepares teachers to work with visually and hearing-impaired children.
“Deaf-blindness doesn’t make me feel pity,” Daria says. “Obviously, deaf-blind people are cut off from the outside world to a large degree. But at heart they’re people with their own stories and the same kinds of family problems, joys and ambitions that everyone has – only they need to be expressed through gestures.”
As a teacher of the visually impaired at the Yaseneva Polyana Resource Center, Daria works with children with multiple developmental disorders. In her spare time she visits Alyona and chats with her via fingerspelling – but now as a friend, not a tutor. Daria says that few deaf-blind people lead a life like Alyona’s. “Many never leave their homes, or they sit locked up in neuropsychiatric facilities where self-realization is impossible and there’s no talk of being active.”
In late 2024, the Russian government decreed that the state would cover the cost of up to 84 hours a year of interpretation services for those with both hearing and visual impairments and 240 for those with total deaf-blindness. That maximum number of “free” hours is six times less than what would be needed to cover an academic year. That means deaf-blind students can’t afford even a vocational school education without support from their families or various foundations.
According to the All-Russia Deaf-Blind Census taken in early 2025, only 801 (18 percent) of the 4,440 respondents had a vocational school education, and even fewer than that attended university: just 377 (8.5 percent).
Ruslan, who’s not even a year old, keeps interested eyes on his mother as she puts four level spoonfuls of formula into a bottle (she checked with her finger), adds water, mixes it up and places it in the microwave with practised movements. Alyona feeds her son both by breast and by spoon: she locates his little mouth without fail by resting one finger on the baby’s forehead and another on his cheek.
While Alyona seems to be getting by with her baby just fine, help from loved ones is needed now and will be in the future – this is clear from the experience of other deaf-blind parents.
Connection Foundation staff member Vladimir Korkunov spent several years speaking with Alyona and 10 other people supported by the foundation and published their “confessions and monologues” in the book I Speak: Conversations with Deaf-Blind People. The book includes the reflections of Vladimir Yelfimov, who is deaf and blind and thinks that the children of deaf-blind parents need special support, because “on their own, their mother and father are unable to help them fully develop.”
Yelfimov laments that these children “will sometimes be hurt, through no fault of their own, by their schools, where they are viewed as intellectually disabled.” But with the help of sighted friends and family and of specialists, he believes, they will “achieve their full potential and take better care of their ‘disabled’ parents.”
Alyona’s mother, Yuliya Khazova, worries about her grandson even more than about her daughter. “All this time I’ve paid attention to both his vision and his hearing. I would make a racket and jump around to figure out his situation. At the maternity hospital, they said something vague when they checked his hearing, plus he’s had weak eyes since birth. Ruslan is Alyona’s eyes and ears, the one who’ll be doing the hearing and seeing and telling her what’s going on. That’s why I worry.”
When she was young, Yuliya was ashamed of having a daughter with a disability, but now she’s proud of her. “It’s a sin to complain when we have everything. Alyona has a full and happy life, despite everything.”
Alyona takes photos of her son so he can see what he looked like when he gets older. She has fewer photos of herself with his father. “We don’t like to share our relationship publicly,” she says. “There’s nothing wrong with that. Look at my mother, for instance – she’s never posted a photo with her husband: he won’t let her. Sometimes I worry that people think my relationship with Islam isn’t going well, even though everything is great.”
But she has a lot of photos of her son. She collects them in a folder on her phone: Ruslan sitting, Ruslan standing up...
“Why did you give birth to such a handsome guy?” jokes her friend Daria, who laughs as she signs her words on Alyona’s hand.
“I had no idea he’d turn out that way,” Alyona says, smiling. “He’s my helper, too: Islam likes to hide from me when he comes home, but Ruslan turns his head in his direction, so I know my husband is back.”
“That’s what they had you for, get it? Get it?” Daria threatens the boy half in jest, half seriously.
Ruslan is focused on sucking his toe.
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