The invisible ones: Growing up blind in Russia
TANYA REACHES HER ROUND HAND INTO THE REFRIGERATOR and snatches Krasik from his hiding place. The 3-year-old hands her small friend to her mother, who quickly pretends along that Krasik (or Red, Tanya’s imaginary friend) has escaped her hold and run away. Tanya squeals and goes off in search of Krasik, who she cannot see for more than one reason.
Tanya has been blind from birth, although the pink-rimmed, thick glasses attached to her head with a yellow cord help her to distinguish some colors. Having lost Krasik, she returns to the fridge, bounces up and down on her toes, and fingers magnetic alphabet letters: a standard colorful set, except these letters have their Braille counterparts etched on them. The letters are the Latin alphabet, because Russia has yet to develop equivalent Cyrillic (and widely available) toys and tools to assist the blind.
Russia is not a comfortable country for the disabled; from my perspective, it can seem downright unfriendly. Visitors might first comment on the surprising lack of handicapped citizens. At second glance, they will notice the total lack of accessibility for the disabled. The only ramp from the curb to the roadside is the slippery packed snow that has formed an impromptu incline.
Here in Syktyvkar, the capital of the Komi Republic situated northwest of the Ural Mountains, there are very rarely elevators in apartment buildings, department stores, schools, or government buildings. There are stairs only leading up to grocery stores, train stations, pharmacies, and university buildings. I have yet to see Braille markers on any public building. The situation in Syktyvkar is not singular to this region, and makes living a non-introverted, non-stationary life impossible for Russians with any severe disability.
I am an able-bodied, full-sighted 20-something young woman who has yet to suffer even breaking a bone. Currently, I teach English at Syktyvkar State University — an opportunity provided by the Fulbright Program and funded through the State Department — and every day here I am reminded how lucky I am to be healthy. Attempting to navigate the icy, potholed sidewalks has left me flat on my back more than a few times.
Climbing the steep, uneven four flights of stairs to my classroom is a conscious exertion. Waiting for the little red man to turn green is not a reliable indication of when to cross the street here; I am often reminded that pedestrians don’t have the right-of-way. But these situations are not only manageable for me, they are what make my life in Russia an adventure. For disabled Russians, these obstacles make daily, independent life close to impossible.
Education for the disabled is also a problem. Although Russian law requires that schools be equipped to teach children across the spectrum of health and mobility, this is rarely the case. Currently, according to the Russian Ministry of Education, approximately two percent of ordinary Russian schools are prepared to educate disabled students side-by-side with their able-bodied peers.
Most commonly, families send their children to free, state-run boarding schools, which provide specialized education for their children’s specific needs. But there is no school equipped to educate Tanya in Syktyvkar, or in the entire Komi Republic, which is approximately the geographical size of California, but with a population the size of Delaware’s.
This will require Tanya, in the next three or four years, to move with her parents closer to a boarding school. Her mother Kate has accepted this. She’s looked into the best schools in the country; she’s taken classes at Moscow’s boarding school for the blind; she’s become trained as a tutor for blind students; she is currently teaching English and leading two blind adults through American correspondence courses designed to give the blind as much independence and confidence as possible. But Sergei, Kate’s husband of five years, has no plans to leave the house he has built, the town he has grown up in, or the life he has made in Syktyvkar.
Kate says she is prepared for the possibility of divorce.
“In Russia, in a family with a disabled child, usually somehow, the husband goes away.”
Kate’s brown eyes don’t make contact with me from behind her rimless glasses as she adds up the odds against her. Her husband treats Tanya like a normal child, she says.
“It’s good, but sometimes he should notice.” She stands up to demonstrate her point. When Sergei is walking with Tanya, holding her hand, he doesn’t always think about navigating Tanya. “He goes through the door and she goes straight into the wall. When I am going, I am always thinking about her.”
Tanya is fair-skinned and does not closely resemble her olive-toned mother. She flits from seashells to flashcards to handmade vegetable toys, all specially designed to give her context and information about a world that she can only hear and touch and taste and smell. She’s never known a world different than the environment she lives in now.
She knows the house’s layout to the last detail: not only where her toys are kept, but where her mother’s papers are stacked and, to Kate’s frustration, Tanya playfully shuffles them around on the floor. She doesn’t know of the hopes and expectations her mother held when she carried Tanya inside her. She doesn’t know of the pain and despair her mother felt when told her beautiful, perfectly formed daughter was blind. She doesn’t know about the question of her education, the question of her parents’ marriage, the question of her future.
In 2011, Russian legislature passed the Accessible Environment law, designed to increase access for residents with disabilities to stores, schools, and all essential buildings, as well as provide accessible transportation for the disabled. This program is in effect from 2011 to 2015, and during this time the government plans to spend 50 million rubles (about 1.6 million dollars) to increase services for the disabled.
This initiative is Russia’s attempt to comply with the UN’s Convention on the Rights of Persons with Disabilities, which labels lack of access as a form of discrimination. The law will take some time to earn its name and, as with most things in Russia, positive changes will slowly trickle down from the larger cities to the provincial towns like Syktyvkar, with its population of a quarter million.
The evidence of change even in Moscow is slow to appear. One resident reported the installation of wheelchair ramps on the outside of buildings in her apartment complex, but lamented that once inside, the only means of reaching the higher floors was still the stairs.
When Kate learned that her daughter was blind as a result of a genetic defect, she just cried, she says, for maybe six months. She didn’t even leave the house. She says even three years later her relatives still tear up with they visit Tanya. They can’t imagine how Tanya will have an enjoyable life in Russia.
Eventually, Kate decided to take control of her daughter’s situation. She started looking online and making phone calls, trying to find a lifeline or network that would give her the answers.
How does one raise a blind child in Russia? She found an Association for Blind Citizens in Syktyvkar. Tanya was less than a year old and Kate wanted to know what resources were available to them both. She called the association and explained her situation. They told her to call back in 18 years, and then Tanya would be old enough for their services.
“The only thread to somewhere was this organization in our city,” says Kate, “and it was broken.”
Later on that year, Kate received a phone call from Olga Minina, the head of the linguistics and cross-cultural communications department at Syktyvkar State University, where I teach. The women were not acquainted, but Olga had seen Kate on television, giving an interview about her daughter, and thought Kate might be interested in joining a new project to teach English to blind and visually impaired students. Olga had spearheaded this project after the appearance of a blind student in her department.
The same year Tanya was born Masha Kochedykova entered the university, creating a unique problem for her teachers, who were completely unequipped to teach her.
Olga, who is also my supervisor and teaching mentor, wanted to involve Masha in regular university courses.
“We had a crazy idea,” she said. “Because at that time we weren’t yet speaking about inclusive education.”
There were no specialists available to consult and no previous examples to learn from in Syktyvkar, so Olga tried self-designed teaching techniques on her sighted son. She developed tapes where she would repeat an English word with the translation five times, building up to phrases that were repeated five times. Her son would listen to these tapes while walking to school or in his room, and they worked, said Olga.
But when Masha listened to the tapes, she got bored hearing the multiple repetitions. Once was enough, because unlike Olga’s son, Masha was not distracted by the faces of passers-by, or by the light hitting a tree in a certain way. She gave her full attention to the tapes and learned the material quickly.
According to Kate, there is not a large blind community in Syktyvkar, because most leave to pursue education in a different region. But Masha’s parents didn’t move. Instead, Maxim, an IT specialist, and Irina, a physiologist, took steps to design their own education for Masha, who was born prematurely which resulted in blindness and other health complications including cerebral palsy.
Since the third grade, Masha has studied at home, assisted by tutors and her parents. Before that, she studied at a school for children with mobility disabilities, and does not remember enjoying her time there. Masha was excited to start school at home and began learning through any means available: history through audiobooks, biology through plants and animals fashioned with clay, geography with a homemade 3D globe. These tactile learning techniques kept Masha interested in school, but she remembers the day her family bought their first computer, and what an immediate difference it made in her life.
She was 15 years old. Since the fifth grade, when her mathematics tutor taught her how to read and write in Braille, Masha had been composing her essays in Braille script, a tedious task that left her hands sore and tired. For every one piece of typed paper, at least three pieces of paper are needed for Braille. This would make War and Peace, a book Masha listened to on tape for half a year, fill up at least six volumes.
Being able to type instead of handwrite Braille is just one of many ways Masha has benefited from her computer. It also allows her to access electronic textbooks, and not lug around large Braille tomes. A software program called Jaws reads aloud the text on the computer.
Eventually her computer would provide Masha with access to the internet, which widely expanded her education and communication abilities through programs like Skype, which she uses to communicate with other blind friends in Syktyvkar in conference call style chats.
Masha is now 21 years old, and the only blind student enrolled at Syktyvkar State University, which has approximately 3,500 full-time students.
“I saw my friends, disabled people, staying at home and I saw what they were missing,” says Masha. Her parents and grandparents encouraged her to make this transition to traditional education, but she was nervous about entering the university. Masha heard stories of university students staying up all night to study and other behaviors she wasn’t used to, like cheating or skipping classes.
She also simply wasn’t prepared for the structure her higher education would take. She envisioned that even at the university, she would continue to study one-on-one with a tutor, just at a higher level of learning. But Masha was put into a regular cohort of first-year history students and from her first day she has been listening, reading, and writing at the same level, if not higher, than her peers.
Kate and I take turns teaching a conversational English course, where Masha is a student. This is how I met both of these women during my first week in Syktyvkar. As a first-year teacher, I was intimidated when I learned I would be instructing a blind student, and immediately turned to Kate for support and advice.
But Masha is one of the strongest students in the class, and Kate suggested that during class activities I pair her with a weaker student to share reading and speaking duties. Masha’s classmates describe the task or picture in the assignment and in turn, Masha translates any words or phrases they are unfamiliar with.
Masha’s strength of spirit contradicts her frail frame. Her fingers are long and thin, encircled by bright blue veins. She rubs a motley-colored metal pendant up and down a string around her neck, the thread worn by the habit. Her light brown hair is pulled back, but with many fly-aways escaping from the ponytail.
Her blue eyes are clouded over and obscured by useless, thick glasses. Masha has several blind acquaintances who are not comfortable with their disabilities, and sometimes go as far to try to hide their lack of sight. Masha’s glasses are a sign to the outside world, alerting them to her disability so that she doesn’t have to.
In the Russian university system, groups of students stay together for almost every class for all four years, so it’s important to form bonds. Masha says softly, touching the familiar necklace around her neck, that maybe in the beginning her classmates were scared of her. “They didn’t know how to speak to me.” In the second year of her studies, and after Masha became friends with some classmates, Masha asked them what their original thoughts were about her.
One of her friends answered, “I could see you had so much strength to study. I also had the strength, but I could tell I wasn’t using it at all.”
Masha records all of her lectures, and instead of her classmates assisting her, she says it is often the other way around. But for classes like Renaissance Art, where many pictures are shown, learning becomes more difficult. Some of her teachers don’t take the time to describe the contents of the pictures. Masha imitates one professor, “Now we are seeing a picture of Raphael, what do you think the artist wants to tell us?”
In this type of class, “I can’t work to my full ability,” but other teachers are more understanding and have inclusive teaching styles. In a class on medieval culture, the professor excused Masha from coming to lectures where she will only present slides, but Masha enjoys the way the teacher describes the pictures and explains their origins, and she chooses to attend.
Masha is a wonder to most people who become acquainted with her. She is well-versed in Komi and Russian history, and can easily switch into tour-guide mode when talking about her hometown. On our way to a Komi Ethno-cultural park (think Epcot, but displaying one nationality and without Disney funding), Masha introduces me to the original pagan gods of the Komi people, ceremonies that they held, traditions they followed, and the history of their conversion to Russian orthodoxy through the oft-times forceful Stephen of Perm, now the region’s patron saint.
She converses in English without hesitation and very rarely relies on Kate, who is in the car with us, for assistance. Masha tells me about the only time she received a “C” mark in her life, in ninth grade Russian literature. She was so worried that her mother would scold her and command her to study harder. Instead, her mother took the news quite differently. As Masha retells it, her mother exclaimed, “At last! You’re finally a normal child.”
Walking along the shoveled paths of the park, Masha is assisted by her father, a tall, soft-spoken man with a hint of a graying mustache. He quietly narrates the landscape, whispering “upstairs” or “downstairs” when Masha needs to pay attention to her step. If the incline is particularly steep he calls it a mountain.
As he guides Masha’s hands to fur hats, floral blankets, and holiday costumes, Masha explains the use of these artifacts in Komi life. She enthusiastically cheers us on when her father and I enter a two-legged skiing race — part of the guided tour of the park — and joins in the commotion when we almost win.
Kate has helped organize this day at the park, which in addition to Masha, her father, and me also includes a group of Syktyvkar students and teachers. One of the biggest assets to Masha’s university education is the increased social interaction between her and her sighted peers, a phenomenon that Kate and Olga are trying to make happen more frequently. Last year, as part of SSU’s initiative for blind and vision-impaired students, Kate traveled to the Hadley’s School for the Blind in Chicago.
“It was the center of my dream[s],” she says about the all-inclusive organization that provides a rehabilitation program, kindergarten, musical ensembles, a radio station, and a job placement office, to name only some of the services. “I want a center like that to appear in our city, or in our country at least.”
Once she returned to Syktyvkar, armed with toys and teaching materials designed for blind students, Kate began guiding Masha and another blind young woman, Lena, through Hadley school correspondence courses. These courses range from academic topics to lessons on raised markers: small pieces of felt or plastic that help the blind differentiate between keys, documents, remote controls, and other day-to-day objects.
Raised markers designed to help orientate non-sighted people exist on pieces of technology I use every day, like the letters “F” and “J” on my keyboard, or the number “5″ on my phone. For Masha and Lena, who rely on their memories to know when to stop turning the radio dial or what side of the key should be facing up when placed into the keyhole, learning how to use more raised indicators will relieve them of having to pay as much attention to these daily details.
Masha and Lena take these courses with Kate to help them gain more independence from their parents. They also take courses offered through a local branch of the Russian National Organization for the Blind, which organizes some activities like rehabilitation classes, courses on using a guide cane, and an opportunity to join a Russian and Komi musical group. Masha and Lena completed a cooking class recently and emerged mostly unscathed, except for a small wound on Masha’s finger from cutting bananas.
Kate takes the lessons she learns with Masha and Lena and applies them to Tanya’s education. For example, practicing cutting fruits and bread at a young age, so it comes naturally to Tanya in the future, unlike for Masha who cut her first slice of bread only a few months ago.
Masha’s parents have chosen to focus on Masha’s educational upbringing, says Kate, giving her the tools to become successful in her field and buy the devices or services that make life easier. Masha spent most of her formative years with academic tutors and surrounded by educational material: homemaking and self-sufficiency skills were not given as much attention.
Now, as a young adult, Masha is taking steps to gain more daily independence from her parents. Using a Russian idiom, she explains that the Hadley correspondence courses allow her to kill two hares with one stone: to learn English and live more independently.
Although Russia is only beginning to make steps to include the disabled in everyday life, there have been some advances here that America has yet to see. For example, on Russian paper rubles there are small bars and circles in relief that indicate the denomination of the bill, whereas American dollars have no markers to help the vision-impaired.
The Russian system is not without its faults, though: as the bill is handled, the markers wear down and become harder to distinguish. Russia also has the option of free boarding schools for blind children, but as in Kate’s case, they are not always conveniently located.
Other recent initiatives give Kate hope that her daughter will grow up in a society that doesn’t simply ignore or pity her. In March of this year, Syktyvkar participated in a Russia-wide week of inclusive education. During that time, there were public service announcements on TV, films shown about disabled people, and most of all daily interaction of children with disabilities and their peers, which Masha sees as the most important step Russia can take right now.
“My friends I’ve had since childhood see me no differently from themselves,” says Masha. Increasing the availability of inclusive education will not only give blind students a reason to stay in Syktyvkar, it will also greatly benefit young children who have not previously had many chances to interact with their disabled peers.
Kate agrees with Masha, and has been sending Tanya to kindergarten (accompanied by her grandmother) for two hours each day. In the beginning, the other children were nervous around Tanya, and at school Tanya often cried to come home. Now, Kate says, the children still do not interact with each other easily, but after a recent four-day holiday, Tanya was eager to go back to school.
Kate sees hope in this situation not only for her own daughter, but for the other children who will grow accustomed to seeing — and eventually playing with — friends who experience the world differently than they do.
Walking recently with a friend down a side street that flanks the main government building in Syktyvkar, I stopped in my tracks. A two-story billboard with thick, paint-like font in warm maroon and blue colors announced: Children should study together. A sketch of children walking in a line included a boy in a wheelchair and a girl in thick round glasses.
Additional text advertised a website for more information about inclusive education. My companion didn’t realize I had stopped moving, and was several yards in front of me when I called her back and excitedly pointed out the sign.
“Have you ever seen anything like this in Syktyvkar?” I asked as I took a picture for evidence. Later that evening I emailed the photo to Kate to share my find. She’s several steps ahead of me; the billboard was her creation.
[Note: This story was produced by the Glimpse Correspondents Program, in which writers and photographers develop long-form narratives for Matador.]