Under-white world: How I live without sight
inclusive programs are getting bigger and in the coming year in the cinemas there will even appear equipment for supplying films with subtitles and commentaries. But the attitude towards people with disabilities does not look optimistic. On the one hand, people with visual peculiarities are told that they do not try to limit life to their full value, hinting that in a world where visual information is occupied by the visual information, they cannot cope. On the other hand, they try to overly “help” even where a person copes well himself, and someone’s zeal will only harm him. Student Oksana Osadchaya told about her projects to help brainists and about the stereotypes that we still face.
Since childhood, I feel and imagine the world around it is not at all like most people. The information that can be obtained in the simplest way - through sight - is not available to me. I have this feature since birth. I was born prematurely, at the 28th week of pregnancy, and soon I was diagnosed with retinopathy of prematurity. This condition means that the organ did not have time to fully form and strengthen, and various violations are possible in the future. For example, complete retinal detachment, which is what happened to me.
In the first months of my life I was a very painful child. It was impossible to identify problems with vision and start immediately to solve them - first it was necessary to save my life. Naturally, any parent who has learned that his child has particular vision is immediately trying to understand what can be done with this. My parents are no exception, but in our case it became immediately clear that it was already too late to restore. Therefore, the parents did not waste money on seeking funds that would not help me anyway, and accepted the situation as it is. In the end, if one doctor says no to you, another, the third, then you soon realize: maybe you should stop fighting for what it’s unclear and start just living?
If to characterize my feature more accurately, then I am a blind person with residual vision. Such people can, for example, be well versed in familiar premises without a cane, they recognize chiaroscuro.
Since I distinguish between dark and light, my ideas about color are limited to mostly black and white, while other shades are classified as “under-white” or “under-colored”, such as brown. This is fun and suits me perfectly - but since I am a philologist, it would be interesting to understand how I, or guys like me, describe different colors.
To reflect on my feelings, on how I perceive the world, even at a conscious age, I did not start right away. At the same time, I understood that I was somehow different from other people, but it never really bothered me. After all, for example, there are people with dark hair, with different nose shapes, and so on — these are features that do not make a person better or worse. They just are. Therefore, my feature did not surprise me either. Once, when we went to the Olympiad in literature, a friend asked me: "I wonder how you imagine everything?" I was then in the ninth grade, and I was even outraged by this question. I say: "In terms of how? Just like everyone else." After the Olympiad, I began to communicate with different people and, watching the guys discussing something, sharing their impressions, began to think: really, how do I imagine these or other things? Part of this book helped to understand.
This summer, Olga Skorokhodova’s book “How I perceive, imagine and understand the world around me” made a great impression on me. Skorokhodova writes how she defines some abstract phenomena, how poetry helps her to understand things related to nature, how she imagines colors without seeing them. Unlike me, she had neither the feeling of light and darkness, nor the hearing, but this did not prevent her from imagining sounds. But the description of some other things from her book I remembered worse - I prevented my own stable image, created in childhood. For example, the clouds for me are rubber barrels with holes, like those of a watering can. The clouds, as I was told, are big, and the heavy rain was like a soul. That turned out such an image.
Somehow I wondered how to imagine a rainbow. Some friends tried to describe it through seven notes, but this explanation seemed to me to be incorrect. If you voice the notes at the same time, it will turn out to be cacophony, reproduced separately - nothing will come of it either. Yet they are quite different from each other, and the transition will not be so smooth. One of my teachers recently proposed to present a rainbow as a collar, sewn from different fabrics, each of which smoothly passes into the other. I really liked this explanation. Velvet gradually turns into silk, and silk is replaced by something else. And most importantly - the image perfectly captures the essence of the rainbow and is understandable to those who live by tactile sensations, especially if a person does not hear.
I didn’t particularly notice any tactless statements or inappropriate behavior on the part of those around me, because I studied in a special school for blind and visually impaired people. Often, the blind themselves or the visually impaired emphasize their features. For example, I calmly use the word “watch” because I live in a society and strive to get closer to it, and not to move away. Even if the information that others receive through their eyes is given to you through their hands, there is nothing wrong with saying “I look.” Phrases like “listening to a movie” simply cut off the ear and create an unpleasant impression. And what's the point of blocking yourself? But some, on the contrary, my approach is annoying.
It all depends on how you relate to the situation. It happens that the parents inspire the child since childhood, how unlucky he is, how unhappy he is. They spend all the time on operations, as a result they miss the moment when it was necessary to engage in its usual development. Such blind people form a special attitude towards themselves, a dependent attitude, a view that everyone owes them. Still, the main thing, in my opinion, is not to dwell on the problem. If you can still do something, you need to try. But to waste the precious time of childhood, when character traits are laid, is also impossible.
After school, some difficulties in communication still could not be avoided. Especially with strangers. Most surprised people in the subway. Some of them, when they notice my peculiarity, may come up and say directly: "I advise you to use sea buckthorn oil. It is good for the eyes." Complete strangers! Such nonsense.
And just the other day in the car, an elderly woman addressed me: “Write a letter to Muldashev. He is giving people back sight!” I say: "Yes, I don’t need it in general" To which she replies: "Well, how can you say that ?!"
If a person treats you cold, it is not insulting, because, in the end, maybe he is just uncomfortable with you. And when all sorts of compassionate old women, drunk, and just passersby begin to show excessive attention (it can hardly be called anxiety and care, because they don’t even know you), it interferes. People just do not understand - sudden movements can scare, especially when you do not see a person. Enough for the hand, trying to allegedly protect from danger. I strongly react to this, and then they are offended - they wanted to help, but I am ungrateful. My girlfriend is also often grabbed by the hand, but her friend is somehow smaller. It seems to me that in relation to blind girls, this behavior manifests itself more often. They probably think that we are very weak, we cannot cope ourselves. Nevertheless, I think: if you want to help someone, first of all make sure that the person needs your participation. Just ask. Such people also come across - I can say to them: “No, thank you, I myself” - and they are lagging behind.
But it is especially unpleasant when they are trying to put money in your hands on the subway or in another public place. As if the cane in the hands of the default makes me ask something from others. I immediately quite sharply return the money and say that I can earn it on my own. Pity is generally terribly humiliating. All people, of course, are different, but for me it is very important to feel the same as everyone else. I live a normal life: I do what I want, I can go where I want. Therefore, when they begin to say: “Oh, and how do you live like that, poor thing, unhappy” - this only causes rejection.
And this attitude is found in peers. Communicating with one friend I had to minimize due to the fact that as soon as I used words like “to look,” she replied in the spirit of something: “What a pity you cannot see it.” It was very unpleasant. Friendship still appreciates the personal qualities of a person, maybe some kind of knowledge or skills - and here the tone was as if the most important thing in me is a peculiarity of vision. If so, then we are just not on the way. In a romantic relationship the same. It is important for me that a partner, regardless of whether he has any physical features, first of all saw a person in me and loved me simply because I am, and not out of pity. I had a young man, also a braislist. He is wonderful and very independent. But I had to part because of his parents.
One day, when I told the guy that I never went to the sea, he decided that we would definitely go there. For us, this is not a problem, in an unfamiliar place you can always ask how to go, and then you just memorize the road. When his parents found out about the plans, they reacted inadequately, began to say: "Why do you need to go to the sea? You will not see him anyway." And there were quite a few similar remarks from their side about the trip (and not only). Although in our case, physical sensations are even more important: you cannot see the photo, but you can catch smells, sounds, feel the ebb and flow.
I am madly in love with the waves. Specially became at the water's edge and watched how the small pebbles either moved away from the feet, then came back. A simple description and did not stand next to these sensations. We returned, and despite the fact that we were well together, I realized that I did not want to ruin my life for myself. Then his parents would say that I am unable to raise children, that we both are incapable of anything and need to stay at home so that they do not worry.
In the city, I calmly navigate, depending on how far I know the place. First, I ask the road passersby. If this is a small part of the road, which I will walk more than once, I immediately notice how to go. Along the street I always walk with a cane.
At the university, too, there are people who do not know me, and we can fly at each other. And so the chances are reduced. With the help of a cane, I look at my feet and slowly memorize the road. Another time I will ask not immediately, but only if there are doubts. After some time, you no longer have to ask, you know the route completely. It’s even easier to navigate the subway - in my opinion, this is the most accessible and logical form of transport. You get out of the car, either to the left or to your right an escalator. Between the columns - the stairs to the transition. When I walk along the columns, I hold a cane in one hand and "look around" the columns with the other. Sometimes I notice beautiful ornaments there - floral or geometric. If I were dependent and all the time went with someone by the hand, I would have known about the world much less and would be completely dependent on others.
As for the convenience of transport infrastructure for the blind, in some regions, for example, there is a “Talking City” system: you have a special device, and when ground transport arrives, it tells you what kind of bus it is and where it goes. There are also sound boards at bus stops, where you can press a button and listen to when a bus arrives, but even in the capital it is not very developed yet. But in Moscow in many places lies the tactile tile. It is embossed, marked up with all sorts of stripes or diamonds and helps to understand the direction. For example, you go down to the transition and on this tile you find the entrance to the subway. You need to understand these notations to understand what is what, but in general it is a convenient system.
There is, of course, an application that allows you to monitor the stops. Many problems can now be solved without significant physical and monetary costs - just create a useful application. One friend of mine, a brainist, wants to adapt the metro scheme for the blind in this way. Now, let's say, the same Yandex. Metro application is not really voiced by screen access programs. The maximum that can be learned there is time on the road from one station to another, but it is completely incomprehensible which of the routes is being discussed (after all, the routes may be different). She wants to make the Yandex. Metro scheme convenient and accessible for the blind. And I want to offer someone to create an application that would announce traffic lights. If in Moscow there are sound traffic lights, then in regions with this problem. In very small cities, such equipment does not always have money.
I can not say that my life is very different from the life of the average girl. Like the rest of the students, I have to prepare for couples. To read something from fiction, I first go to the library of the RGBS. There are a lot of braille books.
I do not perceive information very well by ear, so I use audiobooks less often. If you urgently need to read some text in order to write a test paper on it, then I combine - I read and listen in parallel. Reading for your own pleasure is not always possible. But in the summer I read Anna Karenina, this novel takes 15 braille books, and War and Peace - 29. To read articles in PDF, I use the FineReader program to recognize the text and display it in a Vordovian document, which is then voiced. Sometimes I hook up a braille display — this is a special console that connects to a computer and transmits text in Braille. The display fits one line of text. Often, something in this form is inconvenient to read, so if the text is not too large, but difficult to understand, I type it on a special printer.
Many people mistakenly believe that Braille is a separate language. But in reality it is not a language, but a font, which encodes each letter with six points. All characters have their own combinations. There is a version of Braille for different languages - they differ slightly from each other, but the main characters are the same, and for additional ones, again, there are special combinations of points. It's not as difficult as it sounds, and you just need to remember the notation. My French teacher learned Braille. He once said that he would like to check my notebooks. I was very pleased because I used to take assignments in electronic form. And when the motor memory works, the words are better remembered, and indeed in the perspective of a good knowledge of the language, that method was not the most reliable.
Now, together with my scientific adviser, I am creating the anthology of Old Russian texts, in order to later publish it both in Braille and in flat-page format. Then the reader will be available not only to schoolchildren and students who need it, but also teachers who work with them. Of course, there are few such specialists, but they have the same right to access to sources, like all the others. This project is a continuation of my last year's course work. Together with the supervisor, we developed a Braille font system that allows you to read Old Russian texts. For our system, it was important that the signs were not contained strictly in one cell, but two, if necessary. This is not the most traditional text entry. Therefore, such an old Russian system can be hosted (the old school brailists try to save a lot of paper and space). But we also tried to simplify the matter technically: if you cram everything into one cell, then you would have to think how to display these signs correctly in a digital form, how to type them so that nothing slips away. And in our system there are already all printed characters, they are sometimes located in two cells.
The idea of the project came to my mind back at school when I participated in the Russian language competition. It was necessary to translate some excerpt from the Tale of Bygone Years into a modern language. But at the hearing it was inconvenient to perceive and somehow even unprofessional. I wanted to know what a sign is here, why it is written here, how it all changed. In addition, the competition tasks were not duplicated in Braille. And it was necessary to spend some time on technical training: to communicate with the organizing committee, to say that I need certain conditions. Some Olympiad tasks could not be done even with a computer. For example, if there was a large comparative table or it was necessary to compare the text with an illustration to it. In such cases, I often lost points. There was no replacement for the visually impaired, no one was particularly worried about this.
Now the organizing committees of the Olympiad, including the All-Russian, have finally thought about creating conditions for blind schoolchildren. So far, the developments are only in Moscow, but I hope they will go further. Now we are talking about making the Olympiad tasks available in Braille, as has already happened with the Unified State Exam. In January, I will conduct classes in Old Russian at a boarding school for the blind, talk about our system, explain what symbols we have introduced.
Если бы сейчас мне предложили какую-то операцию, не думаю, что я бы согласилась. Одно дело, когда всё происходит в детские годы и у тебя ещё не сформировалось восприятие мира, другое - когда ты уже сознательном возрасте и мозг привык воспринимать информацию иначе, через органы осязания и обоняния, не обращаясь к зрительному каналу. Кроме того, я не считаю свою особенность болезнью, которую нужно лечить. In my case, it does not cause me any physical suffering, does not make me constantly run to the doctors or fear for my life. I just live with my peculiarity and feel like a happy person.