My attitude towards people with disabilities. Ivan Bakaidov: “My mission is to change the attitude towards people with disabilities in our society

Ivan Bakaidov was " special child"with a severe form of cerebral palsy, and now he is an adult who, at the age of 19, is developing software for those who cannot speak or have difficulty speaking, like himself. We talked with Ivan about boiling pasta in a colander, about inspiration, the ability to make mistakes, and whether people with disabilities know how to love.

Vanya, do your health problems entail limitations and difficulties in adapting to modern Russian society?

It’s true, I was born this way and now I have special features. But I wouldn't say that I'm sick. I'm healthy. My muscles just don’t process brain signals that way. More precisely, they receive additional signals and twitch - tremor. And I don't speak very clearly. Only the closest people understand my speech.

For many, your life is an existence on another planet. For example, how do you cope with everyday difficulties, how does your day go?

I ordinary person, the same as everyone else. And this is what I want to convey to society. I have the most ordinary needs - from delicious food and sex to self-realization in life. Their implementation simply requires more strength and thinking through. I currently live with my parents and brother in a two-room apartment. But now I am actively looking for rental housing. I want to live separately. I am learning to cope with everyday difficulties using the experience of occupational therapists, TRIZ and ingenuity. I talk about this in detail on my pages on social networks. For example, I shared my experience of cooking pasta in colander. Shortly after this, one of my friends gave me a slow cooker, which she rarely used. Now I continue my culinary experiments with an electrical appliance.

How is my day going? I get up at nine, decide what I’m going to do, and in between things I walk around the apartment and listen to music on a tube amplifier (smiles - T.M.’s note). In general, I program, play professionally boccia, ride a special bicycle, study, communicate with friends.

What challenges you the most?

The biggest difficulties arise where people have the phrase in their heads: “You can’t do this, because you are disabled.” For example, I recently went to the opening of the Russian-Swedish exhibition “An Accessible Environment for All.” I talked there with a journalist who was writing a story about me. After the official part there was an informal part with champagne, and the girl strongly resisted the idea of ​​​​giving me a drink, since I am “special”. But nowhere is it written that alcohol is prohibited in case of cerebral palsy! The situation was aggravated by the fact that I forgot my drinking cup at home and could not drink myself. Yes, yes, I drink cognac from a children's sippy cup. Ah, those wonderful looks from the bartenders.

More good example- my attempt to formalize bank card. I wrote about everything in detail on the blog. Difficulties arose due to the fact that, due to my characteristics, I cannot sign, as required by Russian laws. And why does a disabled person need a card, some are perplexed. But I am able and want to express my will myself. That's why I created a petition in which I ask you to stop infringing on the rights of those people who cannot sign with their own hands, and to allow them to accept, for example, a signature with a stamp - not only at the bank, but wherever required.

Ivan’s report “Why can’t I use your site?” about the difficulties of using the Internet for people with disabilities

Yes, this breakdown in society occurs in childhood, but what do you think, should children with disabilities attend public schools?

I am for inclusion and often regret that I am not in a regular classroom. In a special school you are in a vacuum, no one knows about Versus Battle or punches you in the face. Although such training has its advantages. The main one is an individual approach to each student.

Did you tell your mom that you want to go to a regular school?

Yes, but she wasn't sure I could handle the pace. And besides, I didn’t want to go, ask, formalize. Conflicted over this.

Do you often disagree with your mother and her actions?

Every day.

Is that why you are looking for an apartment now?

I want to live separately - listen to Pink Floyd loudly, not hear my brother playing DotA, discussing match tactics on Skype with his comrades.

Well, are you still grateful to your mother for something?

Certainly. For everything! For freedom, for what allows me to be who I am. If I need help, then I go to her. I know she will always help. But at the same time, if I don’t ask, then she doesn’t interfere.

Your loved ones understand you, tell us about the alternative communication programs you have developed that make it easier for “special” people to communicate with the rest of the world.

Programs use modern technologies speech synthesis, I just create an interface with which the statement is prepared. DisType is just a window for entering phrases and a “say” button. In DisTalk, a user who does not speak, does not know letters, does not write, but has motor skills, can select a picture, after clicking on which its name is said. And DisQwerty helps you compose text with one button. Now I want to add to it: make it so that you can post on VKontakte or respond to a message there. And all with one button.

Ivan at the UN humanitarian summit, where he reported on the alternative communication program he had developed.

Where do you get strength and inspiration for all this and much more?

Inspiration? Women inspire me, seriously!

To create the program DisQwerty Did they inspire you too?

Yes. I really liked the girl Lina. But she could not speak or type. It was to communicate with her that I came up with a program that allowed me to compose a text by pressing one button. Lina pressed her cheek. This program also greatly simplified the work in her class, where another boy, Sasha, studied with similar difficulties. I am the kind of person - I see a problem and immediately try to solve it.

Together with the teacher of Linya's class, we finalized DisQwerty. For example, they added a set function, where the teacher himself can create a table of alternatives. As an option - answers to a test on the outside world or Russian. This was in 2014. And this summer Lina left us.

This is very sad... On your personal website it is written that you are the person who changes the system! Do you mean the current attitude towards disabled people in our society?

Yes, changing it is my mission. And I am pleased with the comments that people leave: “You changed something in me...”. I didn’t count, but I think about five people a month write like that. I like the words of one terrible person: “When criticizing, suggest.” Joseph Stalin said so. This is what I propose with my life. I don’t criticize the system, I’m not talking about small pensions and the like. This is already obvious. I offer an alternative. I write, for example, awesome posts about the first time I cooked buckwheat in a slow cooker (laughs – T.M.’s note). My main rule is not to write sadly!

On the website, in your “skills” it says, among other things, that you can make mistakes. What is yours? main mistake in life at the moment?

One of my big mistakes is that I brought something too personal and fragile into public discussion, including in the media. What shouldn't be done. I didn’t understand before the line that should not be crossed. After all, you can be public without talking about personal things. This needs to be learned. For example, now I’m not telling you anything about my girlfriend (smiles - T.M.).

I like girls with drool and hyperkinesis who listen good music(smiles - T.M.’s note). My anthropologist friends explain this by the possible lack of embarrassment with the same slobbering person. And yes, let's break another cliché, disabled people can love too!

How do you see your life in, say, 10 years?

I see myself living in a southern city, a major startup entrepreneur, married to a beautiful girl, perhaps godfather. I don't want my children. I like girls with severe defeats, most likely my wife will be like that. And childbirth - big risk. I don't want to expose her to him. But I would still like to indirectly educate someone. But this is a principle, not a direct plan of action. With the development of technology, everything may change; for example, I heard that a lamb has now been raised in an artificial womb.

Who remembers the old one good fairy tale Valentina Kataeva “Seven-flowered flower”? The girl Zhenya spent six magic petals fulfilling her own whims when she met the boy Vitya. Vitya was disabled and could not play with other children, so he was sad and lonely. Zhenya wished for a seven-flowered flower so that Vitya would become healthy.

The disabled person and society

Kataev’s fairy tale, at first glance kind and positive, involuntarily reflects the attitude of society towards this category of the population: a disabled person cannot be completely happy in his condition. No matter how cynical it sounds, but in times Soviet Union This was exactly the attitude towards . They were not discredited, their rights were not limited, but they were embarrassed.

And the disguise of latent discrimination was the exaltation of the “real” Soviet man", whose existence was impossible to hide - Maresyev, Nikolai Ostrovsky. The official position of the state was to deny existence as a phenomenon.

An absurdity, and not the only one in the history of the Soviet Union. But it was precisely this policy that led to the fact that people with disabilities became a non-existent category - they exist, but they seem to be not there. Therefore, the attitude towards them in the territory post-Soviet space, primarily from the side of society, is very different from the attitude of the world community towards people with disabilities.

The situation of disabled people in the Russian Federation

The state has finally recognized the existence of the problem, and an entire program has been developed for the legal and socio-economic rehabilitation of disabled people. But it will be more difficult to overcome the attitude of society that has developed over decades.

Disgusting-pitying-sympathetic - approximately these words can describe the attitude towards disabled people of the average person.

Limited Features

A person with disabilities is how a disabled person is positioned today. Although, logically, the limit of possibility is quite difficult to determine. It can hardly be said that the capabilities of Paralympic athletes are limited when a slalomist with a missing limb passes a route that is beyond the strength of a healthy person.

How to deal with disabled people

Limited physical capabilities do not mean limitations in intelligence, responsiveness, or talent.

Naturally, the first impression of appearance a disabled person can experience anything, even stupor. But first of all, smart man will be able to pull himself together and not demonstrate his feelings, and secondly, disabled people, as a rule, have already been prepared by life for such a perception.

So the next stage may be just communication, during which it will become clear whether people can become friends or whether the meeting will turn into a simple acquaintance. After all, even among people with “unlimited possibilities,” not all relationships develop into friendship.

Zhdamarova Oksana

Essay on “Disability and Social Stereotypes”

The situation around disability in modern society is one of the most striking examples of stereotyping people. Disability is a social phenomenon that no society can avoid, therefore each state, in accordance with its level of development, must help people with disabilities.

Referring to the stereotypes of our society, blaming the model modern relations healthy people and people with disabilities, our population can be divided into two parts.

One group lives in the hustle and bustle of their everyday lives, and takes their eyes off the disabled or, as they call it today, people with disabilities. Although for many, the concept of a disabled person is shorter, clearer and, in principle, it is no longer necessary to explain the situation in more detail.

Even every day, when meeting people with disabilities, in addition to pity and fear of saying something unnecessary, much less smiling at a person with disabilities, thereby injuring the person, they whisper behind their backs or the backs of their relatives. They do not provide for the presence of ramps when they build their stores and when they bring the next route transport onto the line.

But thinking about making a convenient entrance for a wheelchair into an institute building or a specific hall is a complete problem. There are medical and social examination rooms in the clinics, but there are no elevators. And few people even think about transferring a bedridden patient from home for examination to a clinic or hospital. For example, if a non-ambulatory disabled person needs to undergo fluorography or an MRI, then you need to pay crazy amounts of money and coordinate the trip with a bunch of “medical workers,” but there was no suitable transport in the country. The exception is major cities. And to say that here in Russia every year people without legs or without arms are forced to prove that their limbs have not grown during this period is completely ridiculous.

This same group - a group of healthy people - represents the existence of a family where a disabled person is a complete ordeal. Where there is a constant lack of funds and anger towards the whole world, and other stereotypes.

Another group - people with disabilities, wrapped in an invisibility shawl, live in their own little world, afraid to ask for help. And those who are convinced that disability is a stigma of an outcast hide from the world. Although every weekday these people with disabilities wake up in the morning, get ready for work (it’s sad that not everyone manages to find one), get their children ready for school... but they have more problems.

And why all? Because the first group does not know how difficult it is to climb the steps into a bus in a wheelchair in order to get to college or to get to the store along unclean snow roads.

What does it take to understand each other? The former do not need to try on all the burdens of the latter; it is enough for them to be themselves. Also smile when you see a person with disabilities, just like any passerby on the street. And without receiving another portion of pity, disabled people will simply be grateful to you for being able to accept them as such.

The stereotypical image of a person with a disability, firmly established in society and difficult to change, can jeopardize the process of social inclusion. Therefore, it is so important to find ways to solve existing problems, including changes in social attitudes and stereotypes that have persisted in human consciousness for many years.

I think that we, physically able people, should show understanding and participation towards people with disabilities so that they do not feel like outcasts in our society!

Any Russian coming to Western Europe or the USA, is surprised at the number of disabled people who move freely on the streets, sit in restaurants and go on excursions. It seems that in Russia there are disproportionately fewer of them. In fact, this is not the case, although officially the number of disabled people in Russia is one of the lowest in Europe (today almost every tenth Russian receives a disability pension). But the reason for this is not at all the good health of our fellow citizens.

To obtain or confirm their status, any disabled person has to spend a lot of effort and nerves. Conditions for confirming an accompanying person chronic disease so confusing and complex that many of those who would be considered disabled abroad without any problems, in our country voluntarily refuse to fight for the group and the benefits that accompany it. So as not to lose the remnants of your already fragile health.

In our country there are simply no conditions for people with physical or psychological problems could live a full life, although concern for them is reflected in the criteria for evaluating the work of officials and governors.

Approved and forgotten

This year, the Russian government extended the “Accessible Environment” program until 2020. It was approved quickly, along with the shortcomings that representatives pointed out when discussing the document public organizations disabled people, the Public Chamber of the Russian Federation and the All-Russian Popular Front. We were in a hurry to have time to include money for disabled people in the budget. Many were not happy that new program were adopted in a hurry, without a thorough analysis of what had been done for people with disabilities before, without indicators by which one could judge the effectiveness of the measures taken to improve the quality of life of people with disabilities.

None of high-ranking officials For some reason, it didn’t alarm me that the raids and studies conducted by the People’s Expertise Center of the All-Russian Popular Front with the participation of people’s inspectors from different regions of the country reveal a significant difference between official reports and assessments of ordinary citizens, in whose interests this program was created.

The reality is that many problems with which, one way or another. Disabled people face are still primarily related to the lack of a barrier-free environment.

In practice, this means that 12.9 million officially registered citizens with disabilities often simply cannot leave the house or get to a clinic, store or institute on their own. In other words, these people do not have the opportunity to enjoy ordinary benefits available to other citizens.

Meanwhile, about 168.5 billion rubles were allocated to carry out the activities of the first stage of the state program. And the amount allocated for the program until 2020 is almost three times larger - 494.7 billion rubles. So the question arises: how will such considerable money be spent, which could be used to seriously support disabled people? The reason for such doubts are situations related to the inaccessible urban environment that people with disabilities encounter every day when leaving home.

In Moscow on Belovezhskaya Street, in a building with special apartments for people on wheelchairs The lift did not work for four years: they could not transfer it to the balance of the service company, and there was no one to start the mechanism. All this time, four disabled people wrote letters to different authorities, but they simply did not pay attention to them. The lift was repaired only when the Moscow TV channel “Doverie” made a talk show about the problem of people locked within four walls, literally bringing the deputy head of the council and the housing inspector to them by the hand.

One of the residents of the house, Vladimir Vinogradov, who turned to television, is pleased with how everything was resolved. After the film crew arrived, a handrail was installed for the disabled from the entrance to the bus stop, where the road goes downhill and is slippery in winter, and they helped set up a parking lot, and they also installed a fence.

To see a doctor... crawling

In January 2016, the former governor of Koryak Autonomous Okrug Vladimir Loginov crawled up the stairs of Khabarovsk Regional Hospital No. 1 to an appointment with an audiologist for a certificate of disability. At Loginov's diabetes mellitus, leg amputated and partially hearing lost. His wheelchair did not fit into the elevator, and the poor man crawled to the doctor. Two weeks earlier, the wife of the ex-governor warned the hospital about the visit of such a patient, but she was told that his delivery to the top floor was “her problem.” The couple filmed the climb and made the recording public.

After the uproar in the media, the district prosecutor's office submitted a complaint to the head physician of the hospital, Sergei Pudovikov, and filed a lawsuit against the Ministry of Health and the medical institution due to an unadapted elevator. The head physician had to publicly apologize. He promised that now any person with a disability will have access to any doctor in his hospital.

In Krasnoyarsk for lately several things happened at once big stories related to the unavailability of the environment. A year ago, ordinary residents of houses protested against the installation of ramps for a disabled neighbor and for a children's inclusive center. In June 2016, pensioner Vladimir Zhurat used a sledgehammer to smash a curb that prevented him from driving his wheelchair to the clinic. After the incident, the mayor’s office promised to adapt the entrance and not ask Jurat for material damage. Later, he went on a hunger strike so that sidewalk exits would finally be installed on his daily route.

But in July the worst happened: in the same city, an adult man who had been unable to leave his house for three years due to the lack of a ramp committed suicide. In his suicide note, he indicated that he no longer wanted to be a burden.

Officials justified themselves by offering him and his 78-year-old mother an alternative: a mobile ramp (which, by the way, the elderly woman could not handle) and volunteer help. And the city administration promised to equip the entrance during the planned overhaul of the house... in 2038.

Irkutsk wheelchair users decided to defend their rights through protests. First, they held a picket in defense of their rights to rehabilitation. But there was no reaction from the authorities.

A month later, they organized a rally under the slogans: “I want to walk,” “For us, rehabilitation is the right to life,” “This can happen to anyone.” As the chairman said, “ Charitable Foundation assistance to disabled people named after St. Elijah of Kiev-Pechersk Muromets" Sergey Makeev, in Irkutsk region There is no rehabilitation center of regional significance where wheelchair users and people with disabilities with musculoskeletal problems undergo rehabilitation.

The situation is no better with the adaptation of bank offices for people with limited mobility. Only 45 percent of banking institutions across the country were equipped with ramps and wide doorways for people moving in wheelchairs. Of these 45 percent of banks, only half had parking for the disabled.

“I rarely go to banks, but judging by what my friends with disabilities say, the situation in banks in terms of accessible environment is approximately the same as in the country as a whole - most buildings are not adapted for disabled people,” the deputy told reporters State Duma, Vice-President of the Paralympic Committee of the Russian Federation Oleg Smolin. – Many banks refuse to apply for a loan to disabled people even when the income of a person with a disability allows them to apply for a loan. The issue was specifically addressed by the Presidential Commission on Disabled People, where I work. A decision was made that such discrimination was unacceptable. But it hasn’t really reached the banking structure yet.

It was smooth on paper

Unfortunately, we often see that norms, well written on paper, do not always work as they should in life. When you read the Decree of the Government of the Russian Federation “On measures to ensure accessibility for people with disabilities in residential premises and common property in apartment building» dated July 9, 2016 No. 649, it seems that a serious step has been taken to improve the lives of people with disabilities. The document, in particular, states that the area around the house where a disabled person lives should have a non-slippery or loose surface, should be equipped with tactile strips made of relief tiles, and front door in the entrance should be highlighted in a contrasting color. The height of the thresholds should not exceed 1.5 cm, and the corridors should not be narrower than 1.5 m. Great! But it’s enough to leave the entrance, and everything described in the document seems like a fantasy far from reality.

We most often encounter disregard for people with disabilities because the documents adopted by the authorities are characterized by uncertainty and vagueness.

It is not enough for Moscow to indicate how high the thresholds of the entrance where a disabled person lives should be. It is necessary that the local authorities find the means to fulfill the requirements outlined in the documents and, most importantly, the desire to help people cut off from the outside world by pain. Ultimately, everything that is written by officials, according to Nikolai Nikolaev, director of the People's Expertise Center, must have specific dimensions, only then can one count on concrete changes for the better.

It is very difficult to talk now about what percentage of disabled people need improved living conditions. But we're talking about about almost the entire residential multi-apartment stock of the country. “That is why it is important to develop such a standard of verification apartment building, which would be applicable in any region, in any municipality. Moreover, it is very important to answer the question: what will be done if the commission in some case finds repairs impossible. This situation is not spelled out in the government decree. It is not yet known how the rights of a disabled person will be respected in this case,” Nikolaev concludes.

Activists of the All-Russian Popular Front demand that officials honestly fulfill the promises given to them. And, as a rule, after inspections, money is found to create an accessible environment for people with disabilities. Recently, the ONF checked the accessibility of Nizhny Novgorod metro stations for people with limited mobility and visual impairments, as well as stations in Sochi, Adler and Novorossiysk.

The shortcomings are being eliminated. But you can’t assign an inspector to every house.

Managers report on how many ramps and ramps they have installed for the disabled, but the fact that it is impossible to move along them in wheelchairs outside help unsafe, no one cares.

The indifference of officials reflects general attitude our society towards disabled people.

Isn’t that why the creation of a “favorable environment” for people with disabilities in many cities is still at the level of calls?

Doctor of Psychology Alexander Suvorov talks about the attitude of today's society towards people with disabilities, “political correctness” and cynicism. At the age of three he lost his sight, at nine he lost his hearing.

Doctor of Psychology Alexander Suvorov talks about the attitude of today's society towards people with disabilities, “political correctness”, selfishness, cynicism and indifference. At the age of three he lost his sight, at nine - his hearing.

According to the residual principle

— How would you determine the current attitude of society towards people with disabilities? What are the main problems here?
— The question is formulated very globally. It’s difficult to be responsible for the whole of society... Probably, society’s attitude towards people with disabilities is ambiguous, in different layers this very society - in different ways. Perhaps the prevailing attitude is a discriminatory attitude based on the principle of bothering with disabled people as little as possible. Let them, if they can and as much as they can, solve their problems. They are supposedly overcoming an illness (“oh, they are heroes!”), but in reality it is the disregard of all sorts of authorities and, very often, the immediate and not so close circle.

It’s a sin for me to complain in the end, but still, after graduating from university and becoming an employee of the Psychological Institute, I quickly realized that in fact no one knows what kind of work can be demanded from a deaf-blind researcher. I had to solve this problem myself, and my superiors happily supported the solutions I found: work both on experimental sites, first in the Zagorsk orphanage for the deaf-blind, then in various camps, as a practitioner and ideologist-theorist, participation in the children's charity movement...

None of this in finished form no one could give it to me, I had to come to it myself. And in the camps - what kind of work with children I am generally able to conduct, I also had to look for, with the friendly support of colleagues, and only gradually did I find my place in general work- in the then Leningrad, Moscow, Yekaterinburg, Tuapse, Volgograd... All this is normal, no one could solve these problems for me or without me, I had to search for myself, and my colleagues supported my searches as best they could, picked up and consolidated my findings.

On the other hand, while we were studying, the university allocated funds to provide us with literature, the All-Russian Society of the Blind provided assistants, the Institute of Defectology sheltered our group in one of its experimental boarding schools, provided our training with a variety of equipment... And we finished studying - and suddenly no one needs. I myself allocated as much as I could from my salary and disability pension to reprint in Braille the literature I needed.

The problem of support became insoluble. And it’s a miracle that I am provided with a special computer equipment, the Internet, that thanks to this the problem is completely solved information support. There is no longer any need to order reprints in Braille at your own expense, one book per year. What I'm getting now email, on CDs and others electronic media diverse literature, is perceived as a miracle compared to the pre-computer era. But it could easily have happened differently, and without all this I would have vegetated, I would not have been so in demand and overwhelmed with information.

In general, on the one hand, people with disabilities themselves need to move, look for solutions to their problems, which no one will solve for them and without them - no doubt; and people with disabilities need support at the same time - no doubt. But, on the other hand, if they receive support at all, then quite often it is not from where it should come from - not from the state, not from the place of work, study, if at all you are lucky enough to get a job, go to study... Especially when it comes to on the provision of expensive equipment and other additional costs. There is no well-thought-out systematic rehabilitation policy. Therefore, what should be natural is perceived as a miracle, random luck. And this is humiliating, this, first of all, manifests itself in discrimination both in the state and in the household level.

You feel like they are messing with you based on the residual principle - how much free time will be left... Well, when it comes to friends and relatives - it is understandable and natural that they should have their own lives, just like disabled people, by the way. But the state must free us from this humiliating interdependence. However, we all feel - both disabled people and healthy people, and heads of organizations that employ disabled people, universities that accept disabled people for study - that it is the state that needs us least of all.

The state exists for itself, not for us. Therefore, the success of my personal life, the fact that I became a doctor of science and am in demand, is perceived more as random luck, and the vegetation of the vast majority of disabled people is natural. It seems like this: be happy that you are allowed to exist at all and are not subjected to direct genocide. Not direct, but quite transparent, tangible - just like they are subjected to, go to any clinic, and even a disabled person often needs to get to it with someone...

The rule is vegetation as a consequence of discrimination at the state and everyday level. A full life in conditions of disability is an exception to the rule, only this rule confirms. Chatter about heroic overcoming an illness is hypocrisy. We have to overcome the social consequences of the disease, discrimination, but these consequences might not have existed. In any case, it shouldn’t be. But they exist, and we - disabled people, our relatives, friends and colleagues - are usually face to face with them.

“Primitive humor is a form of torment”

— What is a healthy, correct attitude of a person towards a disabled person? If there is no innate love, sensitivity, understanding, what feelings do you need to cultivate in yourself, what attitude? Can you give simple tips– for people who do not think about this problem, but, when confronted, experience difficulties and even shock? How does this relate to the concept of humanity that you talk about in your work?
— You let it slip: “a person’s attitude towards a disabled person.” But a disabled person is not a person, it turns out?..

That's the point. And a disabled person is not always a person, and healthy people are not always people. We are people insofar as we are humane in our dealings with each other. And this is enshrined even in common phraseological units. If we are offended, humiliated, if we are mocked, mocked, don’t we exclaim in despair, turning to our tormentors: “Are you people or not?” The fact of the matter is that no: any torturer at the moment when he tortures is not a person. Inhuman.

I categorically deny the status of a person to everyone who allows themselves to suffer, especially to whom it, torment, gives pleasure, who feels the need for it - this is sadism.

We need to control ourselves. We must, first of all, not allow the slightest hint of torment in our relationships. And we need a culture of humor. Primitive “humor” is one of the forms of torment, namely mockery, mockery. I have experienced this myself since childhood. And if I meet adults who are inclined to this, I can endure it for some time for some reason, but sooner or later the end is a foregone conclusion: we are not on the same path. In any case, if possible, I try to keep my distance from such people, at least psychologically, if for some reason it’s still not possible, physically.

I prefer dialogue that is as simple and confidential as possible. It is what it is. And if there is something unpleasant, you need to be able to calmly admit it. But you cannot beat with words under the pretext of “cutting the truth in the eyes.” Truth-telling is a form of torment, psychological massacre. No matter how much “truth” you tell a person, it will not make him any better. Worse, more embittered - quite likely. Take care of his dignity - if only to protect yourself from the consequences of your unceremoniousness. After all, you can eventually run into resistance, and not just verbal. Slapped in the face in the most literal sense...

Personally, I have always been very touchy. On the one hand, there is nothing to be proud of, but on the other hand, there is no need to endure or endure insults.

-What is more offensive - pity, selfishness or ordinary indifference? What's the most annoying thing?
“Pity doesn’t offend me.” I'm grateful for the pity. My mother often sighed pitifully, complaining about us, her children: “You don’t feel sorry for me...” In the sense - you don’t spare me, you don’t get rid of your problems, which she still can’t help solve, you involve her in your endless squabbles, very much her traumatized... “Peace,” she hopelessly asked and begged before her death.

This is a common, peasant understanding of pity as the same humanity, the ability to sympathize, the ability to love. In this sense, ruthlessness is synonymous with inhumanity. It is offensive, ruthless, inhuman, and pity is something warming, healing, I would say, resurrecting.

The pity that self-loving disabled people so fiercely fight off is the inability to help. They get in your way and don’t let you do things that you can handle very well yourself. They interfere. Annoying, but not offensive, rather funny. And that's a shame. You brush away like a fly: “I myself.”

Indifference, callousness, deaf-blindness... You don’t expect anything else from anyone.

And what a childish way of asking the question: “What is the most offensive?” Who cares? The main thing is that everything offensive should be avoided if possible, not allowed to happen - isn’t it? Especially not only offensive to yourself, but also to others. Otherwise, you’ve settled down: you take into account your grievances, like every penny in accounting, and for some reason others must take your rudeness for cute jokes. This kind of “inequality” is perhaps the most intolerable. But should we proclaim on this occasion the universal right to mutual rudeness? But I would prefer to ban rudeness. Any. Both one-sided and mutual.

Are we afraid of each other?

— Why are people often afraid of disabled people? What is this - superstition, fear, psychological protection?
- And then, probably, and another, and a third. And also a reluctance to get involved, because our brother is disabled, to be honest, he can be very annoying. And also simple confusion: people would be happy to help, but they don’t know how, they don’t know how. We need to reassure, explain, encourage. However, God bless them - as a rule, I simply don’t see or hear those who are afraid. And thank God, there are fewer psychological traumas.

And those who do approach me, I usually manage to come to an agreement with. Here in the nearest convenience store - no problems either with the sellers or with the security. And before, until he forced people to come to him and taught him to write with his fingers right palm, I had to blow the sports whistle... Hunger is not a thing, I never left without bread.

— Are people evil? Or do they just not know how to behave?
— I am sure that in the overwhelming majority of cases it is more likely the second than the first. I have never generalized so much that sighted fools who speak are evil. Separately, pathological specimens come across. And rather in a constant environment than among random passers-by. Well, this is a special topic.

— Is communication with disabled people useful for children?
— If a disabled person is a member of your family, where to go? And in any case, what matters to any child is not whether you are disabled, but whether you are evil or kind. That is, what matters is what kind of person you are, not what kind of health you have. Is it useful for children to communicate with good people? And there are many such people among disabled people... And if you are kind, then the child will simply forget about your disability. And that sometimes you have to adapt to it, especially when, for example, you lead a blind person by the hand - well, it’s the most natural thing.

And real help to a disabled person, who really can’t do without it, is certainly more useful than pretend help to mom and dad, who, as the child is sure deep down in his soul, will go and buy bread themselves and take out the trash can without falling apart. After all, if something is demanded from a child for purely educational reasons, it is understandable and offensive to him. And if I say to a tired teenager who has fallen on the sofa: “Okay, lie down, and I’ll go buy something for dinner,” he jumps up: “I’m with you!” Because he understands that it’s difficult for me alone. (I had this happen to one boy in 1991).

- Why is it so difficult to ask for help? Isn't an intrusive offer of help worse?
— It’s hard to ask, firstly, because they “overreacted”: they didn’t let me do what I could on my own. I would like to avoid excessive care. Secondly, and perhaps most importantly, because you can’t ask for help: you ask and ask, they promise and promise, but they don’t do it. It’s a stupid situation: this one doesn’t do it, and you can’t go to the other one, because the first one will be offended, he didn’t refuse. Therefore, when it comes to help, I highly value helpers who know how to say “no” and who know how to refuse. At least everything is clear - in this case there is nothing to count on for this person who clearly refused. There is no trial. Possible with clear conscience reach out to others.

But if they systematically refuse and make it clear that they are burdened by your requests, then you don’t want to annoy these people with any requests. Still, I feel them walking past me - my housemates... And I can’t seem to blame myself for being intrusive... Once every six months, in the most urgent circumstances - is that really intrusiveness?

My mother’s neighbors in former Frunze, now Bishkek, sat, knitted together and watched TV every day. And I’m right there on the floor, instead of a kitten, in a ball wool threads played - rolled it and tried to see how it rolled. I tested my light perception in this way. Since childhood, I have become accustomed to this standard of relations with neighbors. But in Moscow there is nothing to dream of anything like that. “Like owls,” my mother complained about the reclusiveness of Muscovites. If I happen to die in the absence of my son, who travels a lot, they will begin to look for my corpse no sooner than he makes himself felt by the stench throughout the entire entrance.

“Intrusive offer of help”... I would be grateful for that. Well, I would apologize and decline politely if it was not necessary. And I would simply be happy to talk with these people. But in general, I don’t know. This is not my case. I have never had an excess of help, and even an obsessive excess - there is always only a deficit. Give an example. Let’s analyze how much there is a desire to help and how much is something incompatible with any kind of help. The one, for example, that Sergei Nikolaevich Bulgakov called “the lust of the love of power.” Yes, indeed, someone is seduced by any kind of power, at least over the disabled. I've met people like this student years. And I grew up as I learned to brush off such power-hungry people without losing real friends.

About political correctness

— Your words from the work “Microcosm and Disabled Children”: “You prefer to call us disabled people “persons with disabilities.” Are there absolutely healthy people?.. And anyway, who has unlimited possibilities here?” It turns out that political correctness, which is fashionable today, may also be inappropriate. After all, euphemisms are invented in order not to offend. Is this a consequence of misunderstanding (unwillingness to understand) the feelings of a disabled person?
- It’s simply called “getting better from bag to bag.” “Even if you call it a pot, just don’t put it in the oven.” It is not resentment, but natural annoyance, that is caused by a shift in emphasis from the essence of the matter to nonsense. Is it a matter of what you call it? I prefer traditional names, and I don’t see anything offensive in them. Better to have a disabled person than a stupid acronym - OVZ (disabled health capabilities). It’s similar to “zamkompomorde” - that is, deputy commander for naval affairs...

It’s not about the words, but if it’s about them, then the simpler, more traditional, more familiar they are, the better. But here's what's strange... I looked in the dictionary foreign words— and didn’t find the word “disabled” there. But it foreign origin. I'll look it up in another dictionary now. Well, "Modern" explanatory dictionary" Ed. Great Soviet Encyclopedia, 1997 “Disabled person” (from the Latin invalidus - weak, infirm), 1) a person who has partially or completely lost his ability to work... 2) In Russia, an old soldier incapable of combat military service due to injury and wounds; sometimes the same as a veteran. — Before the military reforms of the 1860-1870s. used for garrison and guard duty.

“Disability”... 1) persistent impairment (decrease or loss) of general or professional ability to work due to illness or injury... 2) Statistical indicator characterizing the health of the population: the ratio of the number of people of pre-retirement age with permanent loss of ability to work to the entire population.”

So what's offensive? The term “persons with disabilities” only introduces unnecessary confusion into the issue. And even if we take away about the ability to work, because of which, in fact, all the fuss with renaming, and not at all because of “political correctness”, then even then there remains “persistent impairment of health”, and the terms “disabled” and “disability” "You can continue to use it without worry. There is no point in muddying the waters or casting a shadow on a clear day. In my works, I fundamentally ignore all sorts of newfangled abbreviations. I am disabled, I ask for love and favor, but - let’s paraphrase Nekrasov: “You may not be disabled, but you must be a person.” This is where the crux of the matter lies. - “Barankin, be a man!” (and not a sparrow or a butterfly) - there is such a fairy tale, I don’t remember who the author is...

Be human with me, and I am no less obliged to be human with you. And disability is a detail that does not characterize my ability to be human at all - it is moral quality, and here we are equal - but only my physical weakness and infirmity. In which there is nothing shameful.