They say that the level of civilization of a society can be judged by how it treats children and the elderly. It is the preservation of these values, and not material and technical equipment, that determines the future of a particular state. Today this idiom is somewhat outdated and needs to be supplemented. Because not only the elderly and children need special treatment, but also another large category of the population - the disabled.
According to sociologists FOM of people with disabilities in our country there are 8%. Another 13% of our fellow citizens suffer chronic diseases, according to their own statements, and, therefore, are potentially at risk.
Needed for wheelchair users special conditions: ramps, special bodices, low-floor public transport. Visually impaired people need pedestrian crossings equipped with sound signals and allowing them to safely cross the roadway. However, not every city practices something like this on a massive scale. If we talk about statistics, then Moscow sets an example for everyone, as befits a capital. 42% of houses are equipped with ramps. 20% of transport is wheelchair accessible. 11% of special toilets in public places. At least on paper.
Cities with a population of over a million are inferior to Moscow in all respects except for one single thing - the number of traffic lights with sound signals for the visually impaired. In St. Petersburg, Volgograd and Tomsk the figure is 24% versus 22% in Moscow. Cities with a population of half a million lead in the number of elevators installed in shopping centers and administrative buildings - there are 15% of them versus 4% in Moscow and 6% in St. Petersburg. Small towns and villages cannot yet boast of their suitability for people with disabilities.
The least number of complaints about conditions for people with disabilities is in Moscow and cities with a population of half a million. 34% of Muscovites and 43% of Tula, Krasnoyarsk, Arkhangelsk, and Kursk residents believe that the authorities have done nothing to make life a little easier for people with disabilities. Cities with a population of over a million and medium-sized cities, according to citizens, care even less about those in need. 52 and 53% believe that in their city there are no ramps, no special elevators, no low-floor public transport. Well, the situation is completely miserable in small towns and villages, where 67 and 87% of the population, respectively, do not notice any infrastructure for the disabled.
At the same time, it cannot be said that the state is not trying to solve these problems. More than 50 billion are planned to be spent within the framework of the “accessible environment” project, which involves taking the listed measures to maximize comfortable stay people with disabilities. Moreover, these measures involve not only the installation of infrastructure, but also the creation of jobs: hairdressers, small workshops for skilled labor.
And paid work is necessary for disabled people. Since 38% of citizens consider the main measure that the state should take is to increase social benefits for this category of the population. And 5% - find a suitable job. 23% of Russians speak about the need to expand the package of benefits. ABOUT " accessible environment“in the most primitive sense of the word - movement - is said by 28% of compatriots.
If we talk about pensions, then these people are not fattening up here, for sure. Disabled people of the third group receive 4,754 rubles. 5715 rubles - the second group, which, as practice shows, is almost impossible to obtain. If a person has been seriously ill since childhood, the state is ready to help with 9,407 rubles. Well, those who require mandatory care - disabled people of the first group - are paid around 11 thousand rubles. Due to additional social payments can run about 15 thousand.
Even taking into account discounted medications, the amount cannot be called significant. If you take inflation into account, you will not understand whether the social status of a disabled person is improving or remains unchanged.
In order to understand all the “beauty” of the situation, you yourself need to be “in the shoes” of a disabled person, even if only for a short time. Activists social movements and celebrities regularly get into wheelchairs and test the capital's accessibility levels. So far Moscow is not passing the exam. Not every store can be accessed by a person in wheelchair, sometimes, in order to use the ramp, a person with a disease of the musculoskeletal system has to overcome 300-500 meters on his hands.
More than 80% of the population believes that the status of disabled people in Russia does not change or is getting worse. Eloquent figures that speak of how much the authorities need to do in order for our country to be talked about as civilized.
Taras Bozhevilny
I want to immediately discuss that every serious disease and trauma is someone’s personal tragedy and the tragedy of his loved ones - one of the types of tragedies that happen to us in this world.
The question, rather, is this: “Should we hide people with disabilities so that they do not interfere with the lives of “healthy” people, or should we direct our efforts and resources to make the lives of people with disabilities more fulfilling?” Not everyone considers it decent to voice this, but now many people still have questions about the advisability of such spending. And in the historical past, questions arose about the advisability of preserving the lives of disabled people.
I will express my opinion, developed over years of work in organizations involved in the rehabilitation of disabled people. At the same time, I have the rare opportunity to supplement my opinion with ten years of experience working with “healthy” people within the framework of psychological psychology. It gives me the ability to understand deeper things and see the world more truthfully than the average person can. Because average person rarely hears what clients say during psychological consultation. 1. The influence of humanistic values on the state of life in society.The situation of the most vulnerable part of our society (we are not just talking about people with disabilities) is a litmus test for the well-being, or ill-being, of society. In less prosperous societies living according to the laws of the jungle, social upheavals (wars, conflicts, revolutions) occur more often. The lives of people in such societies have less value. We can say that it has practically no value other than the practical and rational one, in the form of the ability to generate income for society. What humanistic values can we talk about in such societies?
Meanwhile, humanistic values are extremely important for the well-being of society itself. Because a person will not be able to exist normally without such values, but will only be able to survive, and even then not for a long time. In an abnormal society, deprived of humanistic values, negative phenomena occur more often: depression, alcoholism, suicide, conflicts and violent crimes against the individual. The general emotional background in such societies is more tense, hostile and suspicious.
Therefore, even for those who like to measure everything by material values, much will become clear with a deeper analysis of how much money is spent on unhealthy things in society, and protecting society itself from this, and eliminating the consequences of this.
The conclusion is that if people spent their energies in a slightly different direction (not in the destructive direction of hostility and cutthroat competition), then life would be better.2. Search for new resources for a fuller life.Man, as you know, strives for the fullness of life. And those people who, for reasons beyond their control, find themselves in the category of persons with disabilities, also strive for the realization of completeness human life. And their efforts are aimed at finding new resources, new opportunities that an ordinary person does not pay attention to. Human potential is enormous and the ability to live a full life is not measured by the degree of fitness of the body and the Olympic principle of “faster, higher, stronger.” There are many other dimensions to human potential. Disability is often not a problem that can be solved. This is a lifestyle that requires more external help, the features of which must be taken into account.
Taking into account the fact that the average person uses only a small part of his capabilities, including the capabilities of the brain, we conclude: Perhaps figuring out how to use other features would help people a lot.
3. A reminder of your own fragility and frailty.
Such a reminder is difficult for people, but, for example, working on the topic of human mortality is a necessary condition psychological well-being. This takes a long time to explain, but this is a fact recognized in psychology. Accordingly, a realistic idea of the possible probability of getting sick, injured and dying is a necessary condition in order to enjoy the beauty of this world, here and now. The conclusion is that by communicating with people with disabilities, people begin to appreciate life more and understand the value of simple little things.
For many people, it would be more convenient for people with disabilities not to be reminded of themselves, to remain somewhere on the periphery of consciousness. The existence of disabled people reminds us of many of our fears and saddens us. There are many fears that an ordinary person has about people with disabilities. Here is a refutation of the most popular of them:
- If you help disabled people, your likelihood of becoming disabled does not increase, but decreases slightly.
- If you help disabled people, the likelihood of having disabled children does not increase, but decreases slightly.
- You won't miss out on the good things in your life by spending time on people with disabilities.
- You will not despair of how terrible and unfair the world is. But you will be able to see our sometimes terrible and unfair world more realistically. Without being afraid to see the terrible, a person is rewarded with the privilege of appreciating the beautiful and wise that exists in our world.
- And, yes, there are problems that we cannot solve, even if we really want to.
And, finally, a few questions to think about for those who sometimes have the question in their heads: “Why does society need people with disabilities?” Think about it, why does society need you personally and what is the meaning of your life?
I still have questions, but the direction indicated in this article seems very correct to me.
At the end of the 2000s in all means mass media thundered the story of 13-year-old English girl Hana Jones, a leukemia patient who won the right to die. This and similar stories still cause heated debate about the advisability of treating terminally ill patients.
Modern medicine has made incredible leaps forward over the past century, and yet it is still not omnipotent - there is still a large list of incurable diseases. All that doctors can offer such patients is supportive therapy to alleviate their condition. But death is inevitable, and the costs for such patients are very, very high.
This is where a pragmatic question arises - why spend huge amounts of money on those who will inevitably die anyway?
In the language of financiers, such investments will never bring profit, they will not even pay off. To put it in the language of the average person: such patients are a burden to society, and the money spent on their treatment is thrown away. Therefore, wouldn’t it be more correct to spend this money on those who have a much greater chance of recovering and living, benefiting society? And it’s not just a matter of “issue price.” The expediency and meaning of life for terminally ill patients is questioned in principle. Life in hospitals, constant procedures, medications, mental and physical suffering, social problems, inability to drive full life– does this bring joy, is such a life necessary? Wouldn't it be more humane, first of all in relation to the patients themselves, to save them from suffering?
The question of the advisability of preserving the lives of “inferior” people has been raised and debated in society since the times of ancient Sparta. In the 19th century, the science of eugenics appeared, later adopted by Nazi Germany. However, each time these theories failed, since they were and are anti-human.
So why, no matter what, does this topic come up again and again?
It should be noted that, first of all, this topic inevitably arises in socially unsettled, poor societies, in which people’s lives are not valued primarily by the state itself, where everyone survives as best they can according to the “laws of the jungle.” Thus, moral principles that run counter to rationality are gradually devalued.
The modern world is ruled by capital, and its laws are the laws of numbers, so each of us has not a value, but a price. And the price of a disabled person’s life tends to zero, because most often he is not able to generate income for society.
In the material world, the success of life is measured by the amount of goods, therefore happy man- the one who earns a lot, has a house, car, dacha, can travel around the world, etc. Accordingly, a person in wheelchair with severe brain damage, incapable of independent life or work, in need of constant expensive assistance, “incompetent” physically and mentally, a priori falls into the category of “unfortunate”, deprived of the meaning of life.
But this is most often the opinion of those who are “on the other side of the barricades” - unfortunately, our world is divided into the world of “normal” people and the world of the disabled. And the former sometimes know very little about the latter, and what knowledge there is is based on rumors and speculation, superficial articles and programs written and filmed by people who are also far from the world of disabled people.
Therefore, I asked parents of special children, as well as those who have experienced relatives with disabilities, or work with disabled people, to answer the question: “Why do people with disabilities live?”
This is a tough question. But if it exists in society, then it will be better if we answer it than someone else.
Why does an “ordinary” person live? Can everyone answer this question? Special children, this world needs them just like every other person born. They do not allow the world to become completely callous; they teach us to empathize and help. Help without thinking and without expecting anything in return. They give us the opportunity to remain human and not forget how fragile everything is in this world.
Alexandra, Pushkino. Daughter Tatyana, atypical autism
Our special children live in the world for exactly the same reason we live. For life. For love. God, life, mom, dad, brothers, sisters, grandparents. So that the body suffers its due suffering, and the soul purifies itself and draws closer to God. So that we love them no less, or even more, than ordinary healthy people. If up there, in the heavenly office, they decided that they were not worth living, they would not come to us. And since they are here, as they are, they need to live, love and be loved!
I almost immediately perceived Masha as absolute love, which does not require anything, from which nothing is needed, she is a value in itself. And then - everything else, and the work of the soul and approaching God, and mercy. No, rather, along with this love.
Daria, Moscow. Son Fedor, perinatal lesion of the central nervous system
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They live to make someone better - their own parents, the people around them. These children are sent for this purpose. For the growth and improvement of the soul, in order to learn to truly love and learn to surrender ourselves and our children to the will of God. Carry your cross with humility. Each person has his own cross, and everyone is given their strength, although it always seems that my cross is the heaviest. One priest told me that these children are a gift from God, that they live in this world with their souls and not their bodies.
Alena, Ukraine. Son Ivan, hydrocephalus
When Vanya was born, my husband and I were incredibly happy! But when illnesses appeared, the question arose: “Why did he come to this world? What should change in me, in my spouse, in people close to us? What did the Almighty want to say by giving us such a baby?”
These are the questions we’ve been living with for about 5 years now. I have definitely changed. Instead of lightness and carelessness came WISDOM, which was not characteristic of me before. Understanding, sympathy and compassion came. Igor and I saw who really is who. And they became stronger, stronger morally and spiritually. I gained faith, faith in myself, in God.
Regular healthy people Having gone through life, tormented and tossed about, they come to the conclusion - “people live to love.” Special children live for the same reason. In this they are no different from others. Much is inaccessible to them, but in the most important thing they are as omnipotent as we are - they love us. We love them. They gave happiness to their mothers while they were inside - how can you throw them away when they have already made it out into this world? They must live so that sometimes we think about what an invaluable gift is possessed by someone who was born not even super-talented, but just NORMAL, ORDINARY.
They need to work incredibly hard to do what is simple and imperceptible for us - walk, talk, eat, sometimes breathe. And at the same time they rejoice in the world! Isn't this worthy of deep respect?
Anna, Ukraine. Son Anton, genetic metabolic disorder
I am of the opinion that if something happens to you, it means it’s necessary, it means that somehow you attracted this event into your life. This means you need to live through the situation, trying to take as much out of it as possible and work through it. Otherwise, something even more difficult and unpleasant may overtake you. Yes, of course, you can take your child to Orphanage and continue to live beautiful life. But, firstly, this is my child, and, be that as it may, he remains a child who needs love. And, secondly, no one can guarantee you that having committed such an act, the second child will be healthy, or with yours already healthy child something won't happen...
Well, and most importantly, nothing can replace the joy when your baby looks at you for the first time, smiles, or does something for the first time.
Ekaterina, Moscow
If you adhere to the Orthodox point of view, illness in general and the illness of a child in particular can be given as a test, as a chance to change their life - and many special mothers notice that they have become wiser and more tolerant of people, in such a situation you begin to understand what exactly is important in this life, and what - so, tinsel. The value of life cannot be measured at all - and I’m not sure that a playmaker who never leaves nightclubs and parties lives more fully than my son. But I can’t say the opposite either, because everyone has their own destiny.
Yulia, Ukraine
Not why, but why. Because this child was born, and he is.
Whether he is a full-fledged member of society - and this depends on what is considered society. It does not fit into the “school-army-work” scheme, but the concept of society is broader than this scheme. The meaning of life in a global, philosophical sense is development and movement forward. So that child who was born healthy, and then drank himself to death and became a drug addict, in this sense is much more contrary to any laws of life than special children.
If we assume that a person is born to be happy, to love and be loved, that the appearance of each of us in the world has some meaning and brings something new to this world, then all existence is justified. Another thing is that this deep meaning may be a mystery to us. The increase in love, the manifestation of the best and the worst in a person, the ability to love unselfishly, irrevocably, with complete dedication, the manifestation of the divine principle in a person - this is not so little.
Lera, Moscow
My mother was dying. She died long and painfully. The doctors refused her. And so we all, including my sons 20 and 6 years old, looked after her.
The younger one gave her something to drink from a pacifier, fed her, wiped her mouth, and told her fairy tales. The eldest washed, changed diapers, watered, fed. Before this, the eldest was a super-selfish child, boorishly selfish, she thought that she had lost her son. And when all this happened to my grandmother, he changed A LOT. He became collected, not at all squeamish, caring, very sensual. He became a man. So I believe that my mother, with her illness and infirmity, helped me return my son and raise him. Well, the youngest still remembers all those days. He is reverent and caring about both my and my father’s health, and his older brother is an idol for him.
Olga, Moscow. My daughter has Down syndrome
Why does my child live? Why the sun, why the sky, why the morning? Man is born for happiness. Be happy. And that's what she's for. Who said that having a healthy child will lead to happiness? Then there would be no alcoholics, drug addicts, or gambling addicts, and prisons would simply disappear as unnecessary. And my? Like all children, she brings joy to her parents, and when she grows up, I am sure that there will be no place for meanness and anger in her soul. As they say, “the mind is not enough.” This means she lives for goodness and happiness. To give kindness and love to everyone around her. And she succeeds.
Olga, Moscow. Daughter Veronica, organic damage to the central nervous system
For love! Because she was born, fought and clung to life with all her strength, she was born and, therefore, has the right to life! Lives to smile, breathe, rejoice and delight, love and be loved! Why do alcoholics and drug addicts live? And the homeless, and the murderers, and..., the list goes on, but it never even occurs to anyone to ask, just because they fit into the norm! My daughter is the most beloved, she brought me a lot of joy, no matter what, and I expect nothing from her except smiles, small victories and joy! And I don’t perceive her birth as punishment or punishment, I love her, and she lives for this love!
Ksenia, Moscow. Son Mikhail, epilepsy
To teach to love. To engage, if you like, in true motherhood, repeating 102 times what an ordinary child needs to say twice. Raising a child painstakingly, patiently, affectionately, when these words are not an empty phrase. Misha does not grow like grass, left to his own devices. He perceives the world through us, parents. Our eldest son is the glue of our family. But this does not mean at all that as soon as it is completely compensated, we will all scatter in different directions. We will find something to work on - after all, after a task that others call overwhelming, everything else seems just vanity.
Natalia, Ukraine. Son Mikhail, autism
Any child is born to be happy and bring happiness to his family. And ours are also a litmus test for parents - are you a strong person or are you not capable of doing everything possible and impossible even for your child. If they say that this is a test for a family and is given only by strength, then I probably don’t agree with this - sometimes a child is terribly unlucky with his parents. No human being deserves to be misunderstood. And our children make our loved ones and those around us think about a lot, and, in the end, the whole society.
Larisa, Russia. Son Gosh, autism
For me, this issue has not existed since the Goshkins for 5 years. When he rushed into surgery with advanced peritonitis and the clock was ticking. I then asked: “Lord, okay, let him remain autistic, just let him live.”
I don’t claim to be the truth, but it seems to me that as long as someone loves a person, or he loves someone, his life has meaning.
Natalya, Moscow. Son, phenylketonuria
I think that the correct question is not “why”, but “for what”? So that we, parents, learn to love them for who they are. Be proud of their, albeit small, achievements. So that they change someone's outlook on life. They taught us to have compassion, fight and be friends.
Svetlana, Moscow. Son Ivan, chromosomal syndrome
Antipodes always exist in order to give humanity a starting point, a system of coordinates and values. So that people know what good is, evil exists, so that people remember what happiness is, sadness exists. For people to value life and health, there are disabled people in this world. But not only in order to appreciate and take care of what you have, but also in order to be able to help, forgive, love - this is what without which we will turn from people into machines. And of course, nothing happens for nothing. Each of us comes into this world for a reason. And this “for some reason” is not only the discovery of the theory of relativity or the second World War. Every person is priceless, like that butterfly from Bradbury's story. Even if a person spent his whole life quietly and unnoticed - he ate, drank, slept, went to work, did not offend anyone, did not make anyone happy. But he lived. He lived among us. And his mere existence, glance, word could change someone’s life and further down the chain. This is called the butterfly effect.
Elena, Podolsk. Daughter Evelina, organic damage to the central nervous system, tracheocannula, bulbar syndrome
For me, Evelinka, in any condition, is first and foremost my child. It’s hard for me to compare her with anyone, because this is my first child. But for me she ordinary child with whom you need to play, feed, care. She lives to love her family and to be loved. No one ever knows who a child might grow up to be. Someone will become a musician, mathematician, engineer, doctor, etc., but someone will become nothing, and maybe become worse (a criminal). It's the same with our children. Someone can overcome their illness and become an ordinary adult and become a doctor, musician, artist, etc. But someone will not be able to overcome their illness and the main achievement in their life will remain a word, a step, a movement of the hand, etc. and he will remain mom and dad’s sunshine.
Looking at my daughter, I begin to appreciate things that I had never even thought about before and I understand how much I have been given - I can breathe on my own, I can speak (in the sense of making sounds), I can swallow, and so many other things have been given to me . I don’t know how she will grow up, but now she just lives, enjoys life and makes her family happy every day.
And the best, most complete, and most importantly the most important answer to the question was given by Sonya, a girl diagnosed with autism: “We live so that everyone can live.” Think about these words.
I am an extremely naive person and since childhood I have been accustomed to believing every printed word. And when I look at this picture, and most importantly, at the slogan below, tears begin to boil in my eyes.
But my tenderness evaporated somewhere when I had to attend a meeting on March 13, 2017, held by specialists from the St. Petersburg Social Insurance Fund with citizens preferential category living in the Vyborg region. This meeting was held under the slogan: “Accessibility. Openness. Attention." What wonderful words! Is not it? But this meeting, and meetings in other areas, were held without a sign language interpreter, an announcement about which was made on the FSS website. And actually, why? Do people with hearing impairments need to know nothing about accessibility? But, excuse me, this disability isolates the deaf person from the outside world.
The agreement on the provision of sign language translation services between the St. Petersburg RO VOG and the St. Petersburg FSS was signed on March 7, 2017, so the deaf in the Vyborg region came to this meeting in full confidence that there would be translation into RSL. Alas, the meeting began without sign language interpretation, and when the hearing impaired were indignant, the translation was started by some woman who knew a minimum of words in sign language, and it was impossible to understand her. A few minutes later, she, realizing that she could not translate, left the stage. In a conversation with me, she embarrassedly said that she had deaf parents, and she could communicate with them using sign language. household level, but now it became clear to her that sign language interpretation and simple communication “are two big differences,” as they say in Odessa.
Several hearing impaired people who have good speech began to actively speak out and shame FSS representatives for putting the deaf in a humiliating position. Other deaf people carried notes with pressing questions and placed them on the table in front of officials from government structure. Moreover, one of the questions was about referrals for sign language interpretation services - the contract was signed, but there were no referrals! What was the reaction from employees of the organization directly related to caring for people with disabilities? Did you apologize? They promised that a sign language interpreter would certainly be invited at the next meeting in another district? Nothing like this. Just don’t laugh, although what they told us from the stage is extremely funny.
First we were asked to listen to the speech using hearing aids, which most did not have. Then they said that we could read lips. And then... It pains me to write about this, but what happened was what happened: they simply began to drive us out of the hall: “Why did you come if you saw that the announcement indicated that there would be no sign language interpretation? Leave the hall! One of us timidly said that the agreement on sign language interpretation had already been signed and the St. Petersburg Social Insurance Fund could invite an interpreter. In response, it was loudly stated that the FSS called our Society and they were allegedly refused to provide a sign language interpreter. I sent an SMS to the head of the HR department of the St. Petersburg RO VOG and asked about the call from the FSS: was it there or not? They were very surprised at my question and answered that there was no call.
Actually state organization should have sent a written request for sign language interpretation. For example, the Labor Committee of St. Petersburg, which organized a job fair in Lenexpo on March 14, submitted a written application for the provision of a translation of Russian Language, having previously duplicated e-mail and by fax, and they were provided with a sign language interpreter. And talking about some kind of call is ridiculous, because the FSS is a state organization, and not a sharashkin’s office. That is, when announcing a call to the Society of the Deaf, the FSS employee simply misinformed those present.
Last year, at a general meeting of employees of the FSS of St. Petersburg, the manager of the FSS of our city, Konstantin Ostrovsky, said that those who do not know how to work with people should leave their post. And the question arises: do FSS employees know how to work with people with disabilities? And why do they have such a dismissive attitude towards the hearing impaired?
“This is life,” sighs the disabled Sergei Gulkin. - Nobody cares. You ask for help, and you get a kick in the ass... Our society is kind of brutal. No pity, no compassion, no love. Everyone keeps to themselves, everyone for themselves. And what happens around them doesn’t matter. I just asked a social worker, and this is what I got!
Sergei Gulkin has been disabled since birth; he has cerebral palsy of the first group. He is now 29 years old. He was raised by his grandparents, whom he remembers often and with great warmth. The mother, according to Sergei’s stories, withdrew from raising her son.
“My mother in general in my life – both in childhood and now – takes practically no part,” says Sergei. “That is, when she needs it, she goes: “Son, help me, I need money.” But when trouble happened, I was no longer needed...
Sergei lives in his apartment together with his ex-wife Maria. They got married in 2011. Maria looked after her husband, went for walks with him, and pushed him in a stroller. They lived together for five years and divorced. Sergei married for the second time.
“I met someone who worked here as a janitor,” Sergei shared. - She has two children, I regretted it... There was one, she needs a family. But it didn’t work out, they separated.
And in September, Maria returned to his life. Now the roles of the spouses have changed. Ex-husband took her to his place from the hospital room.
“Conscience did not allow her to leave”
“I fell from a height,” says Maria. “We were celebrating a holiday, and I don’t even know how it happened that I fell out of the window.” She received a traumatic brain injury, her spine was broken, a complete rupture spinal cord. That is, I will never walk...
Now the woman is almost completely paralyzed - she can only move her head and arms. And it's been like that for 4 months.
“My mother then called Sergei and said that an accident had happened,” Maria recalls. — And Sergei and his second wife were already divorced; they did not live together. He came to me, the two of us cried there... I regretted that we separated. He said he would take me home. He knew that my mother immediately said that she would not take me away, nor would she care for me. She doesn't need it. Sergei said: “We are two disabled people, no one needs us, we will help each other. And no one will teach you to live like this, and no one will understand you the way I do, because I myself am disabled.” I am very grateful to him. If it weren’t for him, I probably would have ended up on the street... Well done Seryozhka.
“It’s hard for me,” admits Sergei. “I have to get up several times a night and turn it over.” But there’s nowhere to go, I won’t throw her out onto the street. Conscience did not allow her to leave. This is a person, a living person, how is this even possible? Well, my upbringing may be like that. All my life I have always tried to help everyone in any way I could. After this happened to her, I took her away. Because her relatives don’t need anything either. They each have their own lives. In fact, who needs disabled people? No one is even interested in how we live, what troubles we have, how we cope...
“It’s very difficult for me alone”
At home, Sergei is completely absorbed in housekeeping and caring for a sick woman. In the morning, he helps Maria relieve her natural needs with the help of a catheter, prepares breakfast, and feeds her. He bandages her, then goes to the store. If you have to go to the pharmacy, then the whole day is wasted.
“This is how my whole day goes,” Sergei shares while he washes the dishes. “Everyone has abandoned us, no one wants to help.” My mother told me: “If you took it, figure it out yourself.” I’m spinning and spinning, it’s hard...
Sergei opens the washing machine and begins to throw wet clothes onto his shoulders. It doesn't work on the first try. After five minutes of throwing in towels, he sighs, picks up his crutches and slowly moves towards the bathroom, using the same painful manipulations to hang up the laundry.
“It’s especially hard in winter,” continues Sergei. — Because in winter there is snow and ice. I only go to the shops nearby. Previously, at least there was a social worker, she came and helped. Where he goes to the store, where he washes the floors...
The social worker had been helping Sergei since 2008, and in June of this year the assistant was taken away.
“They found out that I got married,” Sergei explained. “And the social worker was taken away from me.” I was in service for 10 years; my grandparents were still alive. Then, that means it was possible, but now they have regulations - it’s not allowed, since there is a mother. Has anyone even asked what kind of mother this is? I want my social worker back. It's very difficult for me alone. There are a lot of tasks. For example, now Mashula needs to register for a disability group and a pension. Who will go? I’ll go... I have to clean it up, turn it over, go to the store, to the pharmacy... So you spin and turn, and the day passes. I don't notice the day. I appeal, I say, help. But they don’t seem to hear there, in the social department...
“So, in principle, we are coping, but the problem is that there is no one to help,” Maria sighs. - My relatives have their own affairs, my mother has enough of her own problems. Now she is raising my daughter and my brother’s child. My daughter comes on Sundays and helps. She is 12 years old and is in sixth grade. He will clean our floors and wash our dishes. I even fried pancakes... It’s hard for Sergei to cook. Sometimes friends come and help cook. But they don’t give us a social worker. It’s not allowed because there are relatives. And as such, relatives don’t need us...
"They refuse words"
People in the social services department at home know Sergei. However, they say: according to the Code of the Republic of Kazakhstan “On Marriage and Family”, a social worker is not supposed to be in this situation.
“Sergey Gulkin was removed from service on June 30 of this year, since he had a second marriage registered,” confirmed Lyubov Frolova, head of the home social assistance department of the city department of employment and social programs. — On October 20, he separated from his second wife because in September he brought home his ex-wife, whose marriage was registered in 2011. He hid this fact from us, since living together does not require a social worker. In addition, their parents live in Temirtau. Sergei Gulkin’s mother was born in 1970, able-bodied, works at Arcelor, I talked to her. She helps him and comes. Maria Alexandrovna also has a mother in the city, born in 1958, who also works. Therefore, according to the standards, we cannot take them; they have close relatives who are able to work. Article 143 of the Code of the Republic of Kazakhstan “On Marriage and Family” states that able-bodied parents are obliged to support their disabled adult children who need help.
In the department social assistance 40 social workers work. Such assistance is provided only to single disabled people and elderly people who have no close relatives in the city. And if there are relatives, but are not ready to take on the responsibility of care, it is necessary to formalize this legally.
- They refuse words, but this should be on legal basis,” explained Lyubov Frolova. — They must decide through lawyers. I explained everything to them, I was with them. I talked to my mother, she says that she is providing help... Well, there are internal problems there.
And, as the social services department assured, a social worker from the clinic should help with registration of Maria’s pension.
- In clinics there are social workers, continues Lyubov Frolova. - They will make the necessary form, then an application is made, the MSEC commission comes to the house... You just need to call and make an application.
This is the logic. A disabled person lived in an apartment alone; a social worker helped him. If you get married, that’s it, no assistant required. Divorced, took care of another disabled person - and still doesn’t need help. Because it has become significant that Sergei and Maria’s parents are alive, and it is completely unimportant that they cannot or do not want to help regularly... Let’s say that civil servants act in accordance with all legal norms, no matter how callous these norms may seem to you and me. Sergei intends to find out with the help of a lawyer whether this is so and what he should do now. In the meantime, adults decide what is legal and what is not, children have taken care of the disabled. Volunteers from the “Sunny side up” center at the Alem Youth Center support families in difficult times life situation. And now the schoolchildren have created a small labor team that will help Sergei and Maria with cleaning and cooking twice a week. It’s good that at least children can allow themselves to act according to their heart and conscience, and not just blindly according to the letter of the law.
