In early December in the publishing house "Individual" the book “In My Place. The Story of a Fracture”, jointly written by Evgenia Voskoboinikova and journalist Anastasia Chukovskaya. Evgenia Voskoboynikova is a TV presenter, activist and model who, at the age of twenty-two, got into a car accident with her friends and now has to move in a wheelchair. Here is an excerpt from the chapter "Wiggle your finger", in which Evgenia tells how she formalized her disability and what prejudices people with disabilities face in Russia.
Chapter 6. Wiggle a finger
I returned home exhausted. I could no longer wonder what was next. I wanted to take a break to understand what now - since no doctors, physiotherapists, miraculous simulators and physiotherapy teachers are helping me. Probably the guys are right. The sooner I admit that nothing can be done, the easier it will be for me to continue living. Until I got out of the hospitals, my brother got married. The life of the loved ones continued. I understood that mine, too, must continue. In the meantime, my heroic mother, in between work, went through fire and copper pipes in social security and social insurance - it was time to formalize disability. Disability. I tried to try this word on myself, but I didn't succeed. What kind of disabled person am I? Does this really happen? What does it mean? The very thought that I should ask to recognize myself as dependent, to demand a pension of 6,500 rubles a month, oppressed me. But it was even more depressing that not everyone can get such an honor from the state.
A huge number of new certificates had to be collected, although my discharge from hospitals and rehabilitation centers, images and MRI are already a heavy folder. At home the endless “Hello, hello, Vadim Petrovich? Vadim Petrovich, this is Elena, mother of Zhenya Voskoboinikova, do you remember us? Yes, Vadim Petrovich, I'll call you back. When is it convenient for you? " I had to meet with each of my doctors again, ask them to issue new papers so that the date of the examination would be today. Mom had to run around different floors of the hospital - either put a seal, then change the signature, then they made a mistake with the seal, it was necessary to start over again, but noticed a typo. Eerie paperwork. It was necessary to collect as much evidence as possible that living with my diagnosis was unbearable. With this personal file, I had to go to the clinic for a special commission. This is not how I imagined it. It seemed to me that everything should have already happened. I thought that the most painless and logical way it could be done: doctors inform the special service that such a patient has appeared, the secretary accepts all the documents, and now they call us back and say: “Everything is ready. Is it convenient for you to pick up from us or send us a courier? " It would seem that what could be simpler? But in reality, everything was different.
At first it turned out that I was not attached to my clinic. Not surprising, because I almost never got sick. I had to attach. To attach, you must personally appear at the reception. And to appear in person at the reception, you have to come to the clinic. But how? There is no ramp, no elevator, I don’t know how to get to the commission on the third floor after registration. As a result, my mother went through all these circles of Russian hell for me, so well known to every participant in this process: “Woman! Where are you climbing? "," And who is the last? "," Who were you borrowing for? "," Can I come in - I just ask "," A man with a briefcase has gone somewhere, so it's my turn. " And my and my mother's favorite: “Woman! You weren't standing here!"
It was possible to arrange for the commission to come home. It was necessary to guess when all three doctors will be able to coincide on the schedule.A compassionate therapist suggested: “Do not forget to order a taxi for them to your house and back, they will not walk to you. Do not forget to buy shoe covers, they will not take off their shoes. And ask Zhenya to be quiet. If he can, let him cry. And let in no case leave the room to meet them - it is necessary to show how weak she is. " Two elderly ladies and an elderly gentleman surrounded me in our living room and began asking questions:
- Zhenya, move your leg, please. You can not? Surely you can't?
- And now? Let's try. Well, at least with your fingers a little.
I looked at them like they were idiots. I was ashamed of them. I understand that this is their job, but this is simply absurd. As a result, I was given disability group I only for a year. As if with a diagnosis of "spinal cord rupture" one day I would get up and go, and spend my pension on a pedicure and hide it. And then I will sit down in my stroller again to pretend to be disabled and get to the sanatorium according to the quota. But not to Moscow, this is only for Muscovites. And not to Crimea - this is also only for Muscovites. And somewhere nearby and not along the profile. For the first three years, my disability was extended only for a year.
They used to look at me with admiration - as I walk the catwalk, as I pose for a photographer. And now they look at me with genuine horror, as if I am contagious
One day a friend called. I was sitting at home, making breakfast, looking out of the window - it was snowing. A friend called from the street, she barely had time to get to work.
- Well, can you imagine, such slush, I'm in heels, I almost fell several times! All the sweaty ones flew into the minibus at last, the driver wanted to leave first, but I hit it with my fist straight, so he stopped and opened it. I'm afraid I'll be late for work anyway, I'll be reprimanded again. And you what do you do?
- I'm having breakfast.
- Oh, Zhenya, I would like to be in your place!
- Are you sure?
- Oh, I'm sorry, that's not what I mean.
I understood that some kind of quagmire was sucking me in. I didn't know how to communicate with those who stayed close. People did not know how to talk to me, what about. About how cool they were hanging out somewhere? How did you go somewhere? I myself didn't know what to say to them. Sometimes a group of acquaintances called, who believed that since I was sitting at home, I probably had no business or plans. “Well, we'll come to you! When? We cannot say for sure, it can happen at any moment, we are here for a ride, well, you are not doing anything special, are you? " They came and asked: “Well, is there progress? What do the doctor's say?" Since I started traveling around the centers, my circle of friends has changed. I could only talk to those who had experienced the same as me.
The same thing happened with my parents and their friends. Our life was not very clear to uninitiated people. There was some kind of dynamics in my condition, but only we ourselves could figure out these nuances. Probably, friends were embarrassed to call again. There were more and more pauses in communication, after which it was difficult to reappear and continue from the place where everything stopped. Mom stopped communicating with a close friend. When I had an accident, she said something like, “Well, that was predictable. This is a punishment. Why did she run around as a model! " - and they gave it to my mother. Why was it necessary to transfer? Surely a friend said this in her hearts, not understanding what my mother is experiencing now, and indeed all of us. But this phrase ended their relationship.
I wanted to change the scenery, but I refused to travel with friends to places that were not equipped for my stroller. I snapped at their suggestions “yes, we’ll take you”. I could not adequately respond, just thank you for your concern, these offers humiliated me. I was torn between "I am disabled" and "I will do everything myself." After reconstruction, a center was opened in Voronezh, which has a cinema, a restaurant, and a cafe. And everything in it is equipped for people in wheelchairs - everywhere there are ramps, wide openings. This is where I could go without any problems.
My mother and I went to the cinema.The first time, one might say, I came out in a wheelchair. We got to the film by Andrei Konchalovsky "Gloss". I could not tear myself away from the screen, all of our crazy modeling life flashed in front of me. So we who, it turns out, are “furry gold”, in the words of one of the main characters, who, according to the plot, provides the moneybags with a company of pretty girls. At the moment when the same hero checks the softness of the heels of his wards models, I laughed - we had this too! But how lucky we are that in our case everything was completely innocent. And, of course, the heroine of Yulia Vysotskaya was familiar to me - a girl from Rostov who wants a beautiful life. When the scenes on the Cote d'Azur were shown, I remembered how at the end of our trips we girls were given jewelry with diamonds. In order to get them, you had to take part in some kind of game. Once I had to drink champagne in one gulp to get the ring that lay at the bottom of the glass. My friend all the trip ate only arugula leaves, afraid to get fat, and after a few sips she felt sick. All this was impossible far from me now. With some other Zhenya. It was she, along with other girls, was stopped at the London airport and asked to open a suitcase. And in the suitcase were huge multi-colored dildos - a keepsake of a trip to the Bahamas. Sometimes news from the life of girls-models reached me, they went with Dima around the world, I saw some in magazines. It seemed to me that their life goes on, but for me it stopped. But for some reason I didn't want to go there, to them.
The lights came on in the hall, my mother and I went to the lobby of the cinema. All eyes were directed at me. I got nervous. They used to look at me with admiration - how I walk the catwalk, how I pose for a photographer, how I dance. And now they look at me with genuine horror, as if I am contagious. And also with compassion. And this does not last for a moment, they drill my eyes - adult men and women, elderly people, young people, everyone! I suddenly felt ashamed. Is this all a stroller? I look bad? But I did my styling, makeup, I am well dressed. But no, they still looked at me like an alien. Mom noticed that too. I felt her tense. After that, I locked myself at home for several weeks. I didn't even want to think that I would ever have to go out again. What else is waiting for me there?
But I could not stand it for a long time. Mom lured me to shopping, wanted to please me. We went to the mall. After shopping, we went to the information counter to clarify something about parking. And then the administrator began to answer not to me, who asked the question, but to my mother! As if if I am in a wheelchair, then, most likely, I think too badly and I will not be able to understand the answer. Liza and Sveta later confirmed that it was so. Indeed, it seems to people that if we have a disability, then it will necessarily spread to the activity of the brain. Lisa had this story: she was prescribed physiotherapy. It was necessary to shine some kind of special laser device on the sore knee. A detailed woman in a white coat instructed Lisa: “Just don't shine in your eyes. You understood me? Not in the eye. The device should only work with your knee. Ko-le-nom. It is clear?" Everything was clear to Lisa. The doctor left the office. Literally a few seconds later, this woman suddenly ran back in - to check if Lisa was shining a laser into her eye while no one was seeing!
I was angry. Everything I encountered made me think that everything was over with me, and my task is to come to terms with it as soon as possible. At home, I opened my computer and went to the forums for the disabled. People complained about their cystostomy, asked for advice, understood the legislation, someone wondered if there was sex after trauma, what is the probability of getting married … In these threads, a world unfolded, closed from those who were not concerned.A world in which people are divided into those who are angry and sorry for themselves, and those who think that everything is still possible, and encourages others not to give up. Moreover, in these two camps there are deserters. Active positive optimists suddenly face injustice, close and hide at home. And, on the contrary, the one who was whining yesterday sees that his friend from the forum has received the second higher, and now he is also eager to fight. I scrolled through messages from users Hellboy, Mister Macho, godisme365 and thought it was not mine. I will not be able to close myself off from the world and sit day and night on forums among my own kind, impersonate someone I am not. I have to do something.
Photos: Denis Borisov-Rees, Bezgraniz Couture, Individuum Publishing House