Evgenia Voskoboinikova about life with disabilities in Russia
In December, the publishing house "Individual" published a book "In my place. The Story of One Break", written by Evgenia Voskoboinikova together with journalist Anastasia Chukovskaya. Evgenia is a TV presenter, an activist and a model who, together with her friends, got into a car accident ten years ago and is now forced to move in a wheelchair.
On Saturday, January 21, a meeting with Evgenia Voskoboinikova and TV presenter Dmitry Ignatov, who lost her leg while serving in the army, will be held in the “Respublika” in “Tsvetnoy” in Moscow. The day before we talked with Eugene about what was not included in the book, about how her attitude towards herself and her body changed after the accident, as well as about the perception of disability in Russia.
I read your book two times. Did you manage to tell everything that you wanted?
Many topics that are covered in it could turn into separate books: about social adaptation of disabled people, and about parents whose children are in trouble, and about love in a couple where one of the partners has a disability. For the book, Nastya Chukovskaya interviewed almost everyone I mentioned in the story: she spoke with my family, friends, ex-husband, psychologist, director of a rehabilitation center, where I used to be, with those who helped me, with TV people who about me filmed scenes with my colleagues. But there was no interview with Alexei Goncharov, the very drunk driver, to whom my friends and I got into the car ten years ago. And it would be interesting to find out what he feels, how he lives with what happened, how he justifies himself.
We were suing him, at the first trial he didn’t even take away his driver’s license. We filed a complaint with the next instance, only then he was deprived of his driver’s license for a year and a half. Then there was an administrative court, to which I brought all the checks for my treatment and filed a claim for non-pecuniary damage. The court ruled that Alexei must pay a half million rubles. But that did not happen. I understand that he has been hiding from bailiffs for years, constantly changing his place of residence, and nowhere officially can work. It would be interesting to include his part of the story in the book, it is a pity that it did not work out.
You say in the book that, for example, in the cinema, regular actors are often called to the role of people with disabilities. Is something changing? Is the topic of disability becoming more visible in movies, on television and in the media?
The difficulty is that few people with health problems can take part in the shooting to the fullest: after all, actors in the cinema work out long shifts, sometimes several a day. You cannot afford to say: “Guys, I can’t, I’m tired,” the paid pavilion, equipment, operators will stand idle. This is probably the fear of directors and producers. I came across this: you agree to work, you understand that you have taken on too much of yourself, but you don’t want to cancel and transfer anything so that you don’t say: “Oh, well, she’s in a wheelchair”. And we have to limit the ability to fulfill all their obligations.
Recently, I and other wheelchair users were invited to play in an episode of a Russian film. We were extras. It was a logical decision to invite us, we look truthfully in the frame. So, hopefully, something is changing. This year I was on the jury of the “Cinema without Barriers” competition - there I saw many films with the participation of people with disabilities. There was a movie about a man with autism, and my jury colleague immediately noticed that the hero was played by an actor without this feature. Those who know what it is, immediately see the substitution.
On the one hand, you are an independent, successful woman. On the other hand, you may need third-party help in everyday things. Is it easy? How do you handle it?
Those around me never ask. How is it that I am presenting a book, dozens of people in the hall, and most admire my strength, and after ten minutes, I arrive at the exit of the building and understand that I can’t do anything on my own? It is generally very difficult for an adult self-sufficient person. But I got used to it, I try to treat it with ease so that people treat it that way. If I ask strangers for help, they are so intently trying to do everything correctly, which is annoying, so I want to relieve the situation with jokes.
In Moscow, in the life of people using wheelchairs, there are many unfair moments. I agreed with friends to meet at the restaurant, I put on my makeup, I made my hair, I arrived. The restaurant has a table set, but at this moment you see that the table legs are ten centimeters shorter than your stroller. And all the preparations, the joyful mood - all this is crossed out. The whole evening will need to sit forty centimeters from the table. And I can't blame my friends for this: they just don't know. At such moments I could burst into tears and go home, but who would be the use of it? We have to put up. I do not want to attract attention, to cause discomfort to others.
Sometimes under the guise of anxiety hides the unwillingness to take another person as an equal. How to respond to this behavior?
It happens that you face a lack of upbringing. Recently I am leaving one edition, a rather narrow corridor, there are turnstiles - it is clear that I will not pass through them. The guard is worried about what to do with my pass, and turns to the editor, who accompanies me: "What to do with her? Is she by pass or what?" That is, you can point a finger at me, but to build a phrase differently (for example, “How to deal with your guest’s pass?”) Is too difficult. Or at the airport: "Did you take your handicapped?" - says one employee about me to another. They both work in the escort service, and they show me: "You have a disability, you must take him to the fourth exit."
Most of these phrases seem to me unintentional. It is almost impossible to offend me, I understand why they talk like that, why they just don’t see me until a certain moment. I can joke back, say: “Yes, if you do not understand, the invalid is me,” and after a couple of minutes they already speak to me like any other person.
I am very grateful to you for not having avoided the topic of sex in your book. How has your attitude to your own sexuality changed?
Everything has changed dramatically. I was a model, I had boyfriends, a groom. And then for six months in the hospital, I was never dressed, and lay under the sheet, not feeling my body. When I realized that I would not walk anymore, I decided that that would be the end of it. What can be sex, what love? I denied myself and my body. It terrified me. But I had old habits, and I got hooked on them. I did a manicure, styling, I wanted to look good, I wanted beautiful stroller, clothes. Time passed, and I was able to accept myself. Then the young man liked me, and it gave me confidence that I could like it. You can live, love and enjoy. It took me more than three years. I felt what it was like to build the barriers themselves, from which it is then difficult to get out. And that my barriers can affect another person who wants a relationship with me and sees no obstacles. So my sexuality depends only on me.
Does it take more time now to feel confident with a new person?
It took a lot of time to trust someone. But now it is even more difficult - with the advent of the child, I began to evaluate people who are next to me in a completely different way. Much more important for me is how a man will treat my daughter, how he will accept her. The quality of sex will depend on how trusting our relationship will be.
It seems to me that one of the most significant moments in the book is when you absolutely casually mention diapers. After all, this is a huge part of the life of a person who is forced to move in a wheelchair. Speaking of another stigmatized topic - is it difficult for you to cope with the menstrual cycle?
After injury, the cycle question is one of the most difficult. Not at all, it is restored. I was lucky, my cycle was restored a year after the accident, and after eight years I was able to give birth to a child. Trauma is not only the inability to take and go, it is a complete change in the work of the internal organs. This is a complete shock for the body, few functions then return to normal.
My friend Sveta uses this metaphor: when you were a healthy person, and then you ended up in a wheelchair, it’s as if a person moved from Earth to Mars. You are like a child who does not understand anything at first, and other sensations appear that you learn to think from scratch. The same painful sensations - I have no sensitivity below the ribs, but painful sensations are still there, they are completely different. And the stomach during menstruation hurts so that the enemy does not wish, just completely different.
How else does self-care change with disability?
It takes much longer. I can not quickly run into the shower in the morning before work, it will take me at least an hour to do it. Just as I dress and put on my shoes for much longer. I have a pen on the wall in the bathroom that I use. I did not want to litter the apartment, I tried to minimize the amount of specialized tools available. And this handle in the bathroom is convenient for everyone.
After injury, care must be taken that the muscles do not atrophy. As far as I understand, the brain gives signals, and the spinal cord cannot hold them, but the muscles still get them. Muscles contract, stretch, it is almost like a cramp: the leg starts to twitch, it reduces the back. Muscles show that they are tired - and then you have to warm up and change your position. So before moving from the bed to the stroller, I have to stretch out and stretch my body.
And what about the wardrobe? Is your shopping different? What things are irreplaceable for you?
For Moscow in the winter, cashmere suits, pants and sweaters are indispensable for me - they fit comfortably, they are very warm, they do not restrain movement, do not crush and do not over-pull. Shopping is not much different - I like to sometimes indulge myself with something special, and now I try. My brother jokes that I can walk in my sneakers alone until the end of my life. But I love shoes. She adored heels, but they are unstable on a wheelchair, I can not wear them. I have a lot of ballet shoes, boots with a flat sole, sneakers.
In the book you say that in no case can you lean on a person’s wheelchair. What other rules would you call for those who want to respect the person with limited mobility? Ask if you need help - is this normal or insulting?
Many still lean on the stroller and believe that it is in the order of things. I have a soft balance in a wheelchair so that I can overcome obstacles by lifting the front wheels and, when suddenly they rest on my carriage, I feel that I can just fall on my back. I thought it was correct to ask if help was needed. And she came to the fact that we are people, we can talk to each other. If help is not needed, we say so. And if needed, say yes. The main thing is for a person to see your desire to help, because many find it difficult to ask for help.
One of my friends, also a stroller, recently spoke well of such rules. She is invited to events, at the end of which often there is a buffet table. And how are the buffets held here? Such high tables on one leg, there are people around them and they eat and drink something. High tables are the tenth thing, but organizers who invite a person in a wheelchair never think about it. She says funny: "Why am I going there, have you not seen these navels for a long time?" You communicate with a person, you discuss politics, economics, and you are forced to look at him in the groin or navel. At this moment, very few interlocutors suspect to find a chair for themselves or to offer to go to the sofa. If there is background music, then you still hear badly what a person is telling you.
I have heard from transgender women more than once that men have met with them because of the fetish. In your story about relationships with men there was an episode when it was important for your partner that he was a “crutch” for you, that you need him. How do you handle it when you build relationships?
It happens that a man is in a relationship with a girl with health characteristics and at the same time consoles his self-esteem. That is, maybe he loves her, but all this is connected with his ego. They will speak about him in society as about a hero: “Look at what a young man he is, he drags her completely”. And no one goes into details - maybe I’m more successful than him and I don’t need to be dragged, but for society everything is different.
What rules do you follow to not communicate with those for whom you are a heroic project, a quota, and so on?
I have to communicate with such people, I accept the rules of this game, I participate in it. She is paying off. I can not be offended by the fact that someone uses my position. Both the book and the TV channel are doing their job, I became a media person. Sometimes I feel that it is important for someone to be friends with me, I feel played up, but nothing remains. This is such a job.
And how do you act in friendship when you clearly see that you do not want to communicate with a person, but do you understand that you need to stick together?
We have the expression “All disabled people are brothers” in the environment, this is especially evident in the sanatoriums where we go. People refer to you on "you." I don't want to seem like a snob, but I'm not always ready for this. I do not mean it, I also say hello in response, but it’s impossible for me to “poke” a person when you see him for the first time. And among the disabled, it seems to many that if we are in the same boat, then there can be no boundaries.
In English, there is a saying "hurt people hurt people" - those who survive the trauma injure other people. Due to the almost complete lack of psychotherapeutic support for people who have experienced any injury — you mention this in the book as well — it can be assumed that this problem occurs in relationships with people with disabilities. Did you have such problems?
In the chapter "Welcome to Saki" this is well described, there are scenes in which people with disabilities insult their loved ones, break into friends and relatives, this happens every day throughout the country, many go through it. But not everyone can cope, take themselves in hand, seek the help of specialists - and specialists are not so easy to find. A person with an injury goes through different stages, including anger stage. I also had breakdowns, but I already remember that poorly. But I watched these scenes more than once.
Has the situation with psychotherapeutic help changed for people with disabilities lately?
I have a feeling that when I had an accident ten years ago, there was nothing like that at all. Unfortunately, even today there is no protocol what to do after discharge from the hospital - everyone is trying to figure out on their own. I met my first psychologist in a rehabilitation center three years after the injury. He helped me very much then. But psychologists are needed immediately - and the family, and the one who suffered. And how to arrange it? Disability is made out only a few months after the injury. And after its execution, you can ask about the quota for a trip to a rehabilitation center - they are very expensive. Before a person enters a specialized center, months pass. And there are few specialists, especially in the regions.
I would like to finish the interview with a question about the future, which can be influenced. Does your personal experience somehow affect the way you educate Marusia?
The child understands what is good and what is bad, looking at their loved ones. Only by example can you show him something. It seems to me that I will not have to say: "Do not get into the car to be sober," - I hope that she simply will not have such an idea.
Photo:Bezgraniz couture