Instead of a preface:
During the existence of the project “Special Beauty”, I have drawn up a principle for myself, which I have clearly adhered to — to tell not just about “people with disabilities”, but only about those who inspire me personally by their example, who have succeeded in life and do not put their special appearance or health at the center. I’m drawn to strong and independent people. People who are role models, whose beauty I want to bring to the widest possible audience.
Therefore, until recently, it was quite difficult for me to imagine a person with intellectual disability in the project. This was the case until I met Vladimir Beloyartsev, broken down all the stereotypes I had in my head about Down syndrome.
In June 2023, I was invited to become a speaker at an inclusive forum in the Caucasus. The program was supposed to be intense — lectures, master classes, hundreds of participants with and without disabilities from all over the country.
On the first day there was a large-scale concert, quickly moved from the restrainedly officious part to a riot of fun and dancing not only on the stage, but also off it.
My attention was immediately drawn to a short man dancing self-forgetfully at the front rows with such artistry and in such excitement that I couldn’t tear away my eyes off him for the rest of the evening.
“That’s Vova. Our local celebrity”, they whispered to me.
The celebrity turned out to be also the most pleasant companion — with a great sense of humor, outlook and manners of a true gentleman.
At times I wanted to pinch myself — the characteristic features of appearance, the cut of the eyes, spoke of the well-known syndrome, on the other hand — how can all this be combined with such intellectual development, charm and richness of facial expressions.
Today he is a distinguished public figure, volunteer, inclusive theater actor and a welcome guest at any celebration in the Caucasus.
“Holiday man” — everyone who knows Vova even a little bit calls him.
Reflecting on Vova, I’ve once again come to the realization that
very often we are the sum total of the effort, attention and love that our loved ones have invested in us.
Therefore, today’s material would be incomplete without communication not only with the hero of the project itself, but also with those who have made a truly invaluable contribution to its past, present and future.
I invite you to get to know this in every sense special story — make yourself comfortable!
“It doesn’t matter what syndrome you have, it matters what kind of person you are”.
Vladimir Beloyartsev, 36, Mozdok (North Ossetia)
Down syndrome
Fact checking:
Down syndrome is the most common genetic abnormality in the world. According to statistics, every 700-800th child on the planet is born with Down syndrome. This ratio is the same in different countries, climatic zones and social strata. It doesn’t depend on the parent’s lifestyle, their health, presence or absence of bad habits, skin color, nationality.
About 2200 children with Down syndrome are born in our country every year. Boys and girls with Down syndrome are born with the same frequency, their parents have a normal set of chromosomes. It’s no one’s fault that a child has an extra chromosome and it cannot be.
Down syndrome isn’t a disease, but a genetically determined condition.
According to international expert’s rates, there are about 50,000 people with Down syndrome in Russian, and about half of them are children. Russia doesn’t have its own statistics on the number of people with Down syndrome.
Source: https://downsideup.org/
Vladimir’s mother, Tatyana Beloyartseva:
“Vova’s diagnosis was a brutal blow to my pride.
I’m a teacher, and I have always believed that prosperous parents should have had “prosperous children”, and Vova’s appearance was a real surprise to me. I was sure that could not happen to me — a woman from a decent family, without bad habits, with a higher education and a good job. But that was not the worst of it.
When he was one and a half years old, he had the most serious disease — leukemia. He had complete atrophy of the body, medically induced white blood, blepharitis of both eyes — in general, a condition almost incompatible with life.
I was literally persuaded to keep him. “Do you realize that he will never even be able to say ‘mommy’ to you?” they admonished me, insisting that I surrender him to a shelter to “give birth to a new, healthy one.” But I decided no. This is my maternal cross — and if he is destined to live, then he will next to me, and if he is destined to die — I will bury him like a human being, because for a year and a half, my beloved son, my long-awaited son was near me”.
“And here was the turning point — the realization than no one can do anything but me as a mother. His life is in my hands and only I can do something to help him. From the medicine perspective they’ve basically said: “We are pre powerless”. So for almost a year I taught him how to move his fingers. I massaged him every hour, every day.
I was afraid of waking up one morning and finding his cold body.
— so I spent the first month on very little sleep.
When the first movements appeared, it was a great joy. First his fingers, then his hands, then his feet. For a long time, his hands worked, his legs didn’t work, but we moved around on the floor as best we could and I started showing him letters and teaching him how to pronounce sounds.
By the time he was 4, he wasn’t just talking — to my surprise, I had taught him to read”.
“During his growing up, we have to face different challenges.
It was very hard for my eldest daughter. I asked her to walk with Vova in the park and she was back in tears: “ I’m not going to walk with Vova anymore,
They say to me, “Lena, whose brother is a fool!”
Of course, it was very painful and difficult”.
Vladimir’s sister, Elena Digurova:
“Vova and I are 10 years apart, so in fact he became my “first child”. I constantly stood up for him and didn’t let anyone to offend him. The attitude of peers to him — and to me, as a “retard’s sister” — was often like a second class.
But children don’t just bully — most of the time they are repeating the words of adults who didn’t explain to them that children are different, but laughed and looked down on them.
Sadly, but tellingly
the boy who bullied Vova the most had an accident — he received severe burns that disfigured his life. He was never able to recover.
This is an important lesson to people who think they are “normal”
— never know what might happen to you or your children. So stay human — in every situation”.
Tatiana Nikolaevna:
“One day they came home very upset, and Vova had been crying for a long time:
“Mom, why don’t the children want to play with me? I’m not like them?”
He was about 8 or 9ish years old. It was his first conscious question. And then I began to explain to him:
We’re all not like that. We’re all different. We’re blue-eyed and black-eyed, white-skinned and dark-skinned, short and tall, fat and thin. We are very different.
But what matters most is how we perceive life and the world around us.
And if you’re like that little raccoon looking out into the lake and making faces, life will make faces back at you. And if you look at the world with love and enjoy every day and the people who are around you, if you respect yourself and feel like a human being, then others will feel it too.
This, apparently, became the basis of upbringing — and it gave its results”.
Elena:
“We brought up Vova without emphasizing syndrome. Just a member of our family, just a son, a brother, no pity: “Eat with a spoon — no, not with your hand”. One more time. And again.
The most important thing is treating a child with special needs as a normal person.
There are also healthy children who start reading and speaking late — you really have to be patient here.
As for the reactions of others, evil tongues always speak first of themselves. “Everyone shares what they can”. The wrong weight and the wrong hair color are also judged. You can’t please everyone.
People will always look askew at someone. There is no reason to become invisible”.
People with Down syndrome are not sick. They are not “afflicted”, “affected” or “victimized” by the syndrome.
They correct way to say it is, “The man has Down syndrome”.
Children with Down syndrome are often called “sunny children” for their friendliness and open affability, but every Down syndrome child isn’t always smiling. Like all people, he or she is sad, upset, angry, offended, in a word experiences the whole range of emotions inherent in a human being.
When we call a person with Down syndrome “Down”, we emphasize the syndrome as the main characteristic of the person. From the point of view of ethical standards, it’s more correct way to say “a person with Down syndrome” and it is unacceptable to use the word “Down” in a derogatory and disparaging sense.
“A person with Down syndrome” is a descriptive term indicating that the person has a particular chromosomal abnormality. This phrase relegates the presence of syndrome to a less prominent place, placing the main emphasis on the concept of “person”.
Source: https://downsideup.org/
“It’s important for parents of such a child to understand: you can’t just find teachers, put them in a special school and then consider your mission accomplished.
Only relatives are able to “pull” their child to a whole new level. Every day, every minute, be around and explain everything, show everything. Peel a banana — show the child, let him try to do it. Going for a walk — let him try to dress himself, tie his shoelaces. Yes, it won’t work out immediately, yes, it will make many attempts, more than normal children — not 5 times, but 105. But this is the only way to develop the skills necessary for independent life.
I try to explain this to moms of special children. And I always say:
“Forget the diagnosis! Stop patronizing, develop your child, give him a chance!
The world looks at your children through your eyes.
Notice the good in your child, rejoice in every success, and don’t dwell on the flaws”.
That’s what really matters”.
Vova’s mom
“Vova is amazing. He is really a very kind person.
It’s almost impossible to make him lose his temper, to bring him down from a positive mood, on the contrary — he always tries to find such words to cheer up or balance a person.
He is very fond of life-affirming postulates about always defeating evil, world peace, universal values — little more, and he will become a local guru for people who have lost their bearings and faith in themselves. I wouldn’t be surprised.
I think he could easily be a motivational speaker.”
Andrey Pigarin, close-knit friend, entrepreneur.
“In Mozdok today, Vova is a celebrity.
When they say “Vova”, they specify which Vova? “Vova the star.” And it’s immediately clear who they are talking about.
He has an incredible memory, so at any point in a conversation, he is able to pull a very apropos quote from his mind and people crack up.
He is a favorite guest at all weddings, because where others will sit quietly in a corner for the first hour of the celebration — he does not need to “warm up”. He will throw himself into the dance, create an atmosphere of real celebration and fun. So
he is a “cheer up-er” kind of way
— it’s very organic for him to work as an animator at children’s events.”
Andrey Pigarin
Andrey Pigarin:
“Vova is a great heartbreaker.
Despite all of this — his attention is drawn to the prettiest women. But relationships are a very serious subject for him, he is well brought up on the right values and will never refer to it as something easy-going”.
— Hello, beautiful! , — Vova happily greets me on the other side of the screen.
— How are you doing, darling?
— Best of all, sweetheart!
— Vova, let’s start our interview by answering this question: if you were asked to tell who Vladimir Beloyartsev is — what would you say?
— I’m a creative person. That’s the most important thing. I try to put my soul and my love into creativity. So that people understand everything themselves. I am engaged in Caucasian national dances, and in dance I feel real most of all. It’s in dance that you can show what is the real Caucasian spirit, passion, fire, excitement. My character is exactly like that.
Creativity is what character is all about.
— Do you feel like a star today, Vova?
— In Mozdok, maybe, yes. But I don’t want to fly high and fall painfully. I walk on the ground.
I don’t want to prove anything to anyone. I’m satisfied with what I have now.
— Would like to start a family in the future?
— I’m 36 years old now, and many people say that it’s time to start a family, to get married. I understand that it’s necessary, but first of all it’s a great responsibility. A financial, among other things. I can’t take it on yet. Yes, it’s true, I like pretty girls. But the most important thing in a girl is upbringing. It depends on the parents. To know your roots and traditions, hold on to them, honor them.
Gentle, modest and graceful is my type.
“Yulia, you know, sometimes people without any mental peculiarities do such monstrous things that Vova looks the most adequate and decent of all.
For example, after my mother’s death, the scammers wanted to take custody of Vova for the sake of real estate — they changed his passport and tried to reissue his pension to themselves. When I rushed to the Pension Fund, the conversation with the girl who was drawing up all this looked like this:
— Do you have it written that the person is disabled and has a guardian?
— Uh, yeah.
— Then how can you commit such manipulations without my knowledge?
— Well, he asked for it.
Silly smiled and shrugged.
I wanted to shout, “And who’s the mentally disable here?!”
Elena, Vova’s sister
Tatiana Nikolaevna:
“Thanks to Vova, I realized what true love means.
Love is unconditional acceptance.
First of all, the children. After all, we want them to be the most extraordinary, the best and God forbid, not like the neighbors’ ones.
Loving “good” children is, of course, very easy.
And to love unconditionally, just like that, without any conditions, just to live because he is there — loving him just for what he is — this is probably the greatest feeling of mother love, which I realized for myself.
Love for children is impossible without love for everything. If you don’t love the world, if you don’t love life, this sky, this earth, these flowers — if you don’t love it yourself, it’s simply impossible to instill it in a child. After all, you can only truly give what you have”.
Tatyana Nikolaevna passed away two years ago, and everyone who knew her remembers her as a woman of striking beauty, irrepressible energy and strength of spirit. She is no less a legend in Mozdok than Vova is today.
She was the person who at her time became the rallying “epicenter” of parental activism, thanks to what, in a small town, even by Caucasian standards, there are now two inclusive theaters, and children with special needs are not hidden, but peacefully integrated into normal social life. Thanks to her, the charity organization for children with disabilities ANO “Vova’s Home” appeared, where Vova works today.
The short movie “Vova” was taken as the basis for the article in the part of Tatiana’s comments. Be sure to check it out.
My main teacher in life is my mom.
But all the people we meet along the way can be our teachers.
Today Vova live as independent life as possible
— he is a prominent community activist, doing volunteer work, moonlighting at festivals, going to the stores himself, paying his own bills, getting to know people.
All of this was almost impossible to imagine at the moment when doctors diagnosed the syndrome. But thanks to the faith and incredible efforts of his loved ones, his own resilience and openness to the world — it turned out to be possible.
My biggest lessons in life:
Being yourself — one. Decide your own affairs — two. To be masculine — three.
My greatest talent is to remain myself.
— Do you feel happy, Vova?
— Yes, and always have been. How do I explain it? Easy!
To be happy is to be confident in yourself. In what you do.
It’s important to always remain human. In all situations. Don’t betray, respect your family.
It doesn’t matter whether you have the syndrome or not. The major point is what kind of person you are.
I thank Vova and his loved ones for their trust and willingness to share their story,
Downside Up Foundation for its important outreach and assistance to people with Down syndrome,
Khetag Balaev, the heat of the psychological and pedagogical assistance department of the State Budgetary Institution RCRC “Tamis”, for his help in organizing shooting,
volunteer-guys on the set
Due to its unplanned nature, out photo session took place in conditions far from ideal and was a pure experiment — in the playroom of the rehabilitation center in just half an hour.
But I’m so glad — both our wonderful meeting and such spontaneous creativity with the truly artistic and deep Vova!
You can always find him and write something on his VK page.
Comments, reposts of this piece can be made here.
Take care of yourself, your loved ones and try not to label people around you!
Photo/text: Yulia Otroshchenko
