Chapter 9. War for Independence

The first few months after graduation were about as expected. I was like swimming in free time, enjoying the very fact of having it. All the time was now at my disposal.

The euphoria passed unnoticed. At some point I found myself bored for the first time in many years — if not for the first time in my life. Books continued to be my constant companions. But sitting over them day after day, from morning to evening, reading while eating, as I was used to, was too much even for me. Various hobbies and interests also fade a little, if you do not have to make time for them among other, less pleasant things, and if you no longer look forward to the opportunity to do them as a gift from life. My friends were still my frequent guests, but not so many now. Which wasn't surprising. Children had become teenagers, teenagers had become young men and women, and everyone had their own life paths and interests. Therefore, we had fewer and fewer points of contact. So it turned out that the disappearance of the school from my life left a void, which was not as easy to fill as it seemed.

In addition, a feeling that had not yet been fully formed in those days, but which could be defined as a feeling of being lost, was now much clearer and more pronounced. Lost in an uncertain, vague future. More acutely than before, I wanted to do something necessary, not just interesting. I wanted to be useful. To whom, to what? Nobody and nothing in particular. Useful in general. To the world I live in. I wanted to do something for it.

The questions "What am I living for?", "What is my place in this world?" began to arise. The thought that there is no place for me in it, or that my life has no meaning, did not arise. There must be a place. But where is it? What can I do? How do I find a use for myself?

It turned out that another person was thinking about my future at the same time as me. It was my grandmother. Several times she tried to convince me to study in absentia, as a lawyer. Her imagination was filled with rosy pictures. Here I am studying with all the diligence I showed in my school years. Here I get my diploma and start practising. Here I have clients coming to my house for counselling, I am respected and get good money. Such a prospect looked really attractive. However, I was skeptical about my grandmother's idea. In my opinion, it only seemed to her that everything could be so good, while in reality, a lawyer in my position has practically no prospects not only to make a career, but even to have a more or less stable practice. People are unlikely to go to one. Therefore, I rejected her proposal, believing that such a study would be a senseless waste of time for me, which, perhaps, will be able to devote to something more promising. But what..? Then it was a question of questions for me.

My mother and grandmother, who knew me closer and better than anyone, believed, or at least assumed, that I could achieve something in life. My mother was always ready to support me in any endeavour, and my grandmother even pointed to a specific historical example. She would say, "There's that American president... what's his name?... sitting in a wheelchair, he ran the state!" She was referring to Franklin Roosevelt. It made a certain impression on me, not a deep impression, but a favourable one. I knew about him before, but somehow did not pay much attention to him. But now I saw a real example that even in such a position it is possible to work fruitfully and do a lot.

So, the idea of studying to become a lawyer was rejected. But the problem remained, and it was necessary to look for ways to solve it. I thought for a long time and calculated. It all came down to the question, "What can I do?" But how could I know the answer to that question?..

I kept my worries to myself. Both from not being used to sharing them, and from the fact that I didn't really expect anyone to help me in such a major predicament. This may sound strange. However it was at that time that another side of life began to open up to me. Life in general, and mine in particular. An unpleasant reality that I could not escape from, but had to plunge into, through which I had to go. A reality that created a crack between me and my closest people, my family. And then, with each step, that crack grew wider and wider, gradually turning into a veritable abyss.

When childhood ended, one sad paradox was revealed to me. Namely, the fact that even people who love you can turn your life into a prison. Especially if you depend on them for everything. And they will do it not out of spite, but just the opposite — with the best of intentions. Even physically healthy people sometimes fall under the dictates of the older generation; there are enough examples of that around. If you are disabled, unable to serve yourself and constantly sitting within four walls, then others, with all their wonderful attitude to you, may not believe that you understand something in life, that you are able to have a sound opinion about its various aspects and phenomena, and that you are able to determine what you need and what is better for you. I think there are many cases where this is not the case; however, there are many such as I have described.

As for me, I did not feel oppression from my parents before. They decided for me what all normal parents decide for the child: when he goes to bed, when he eats, what clothes to wear, what to watch on TV, and so on. Of course, sometimes they showed severity, and I was even offended — but I can't call it a dictate. However, when I had already ceased to be a child, and nothing had changed significantly, I realised that I risked remaining on children's rights for the rest of my life. This realisation struck me unpleasantly, and I did not want to believe in such a thing.

It should be emphasised that my situation was radically different from that of any other teenager seeking independence. It was different in that the degree of my independence could have been incomparably lower. Unlike others, I could not go anywhere, I could not do anything or meet anyone outside the house, I could not choose my own activities because there was nothing to choose from, and so on. I could only enjoy autonomy within the apartment that my wheelchair was moving around. But, as it turned out, I had to fight for such a hundred times reduced autonomy.

Although, perhaps, it would be better to call it not even independence, but the right to self-determination. In the simplest and most direct sense of the word. The right to determine for oneself what is possible to determine within the limits outlined above.

My parents did not like the fact that I was trying to get out of such a harmless and benevolent control. They were sure that there was nothing wrong with it, and could not understand how important it was for me, who was already very limited in own opportunities, to get the maximum of at least the modest freedom available in my position. For me it was a question of psychological survival, and it was as follows: either I would decide for myself what was available to me, or I would forever remain a child, a puppet (and a puppet, even in loving hands, is still a puppet, not a person), and would never have a chance to become something of a person. Alas, there was no way to explain this to my parents. They continued to think there was no problem, that I was making a big deal out of nothing, and they didn't want to give in. Neither did I. It came to loud quarrels. And the specific reason for each of them was not important. The conflict was not so much about certain events as about fundamental issues and our characters.

Besides, my father was already drinking heavily at that time, and what I described earlier was my almost daily reality. His desire to demonstrate his power only grew stronger over time. He was unwilling to admit that I was no longer a child who should tremble at the mere raising of an angry father's voice. But I was no longer the same. My principled unwillingness to bend to him was perceived by him with real anger. This greatly complicated my already difficult struggle. After all, my mother also did not show understanding of the fact that my childhood was over long ago.

I had to develop a whole range of methods of protest that allowed me to insist on my own. The most radical of them — and at the same time the most effective — was hunger strike. A last resort when no other means would work. There are no units in which you can measure how many nerves were spent on both sides...

It would seem that there could not be any big problems: there were no special reasons for them. The situation could have been solved much more simply by discussing the problem and trying to overcome it together. But, unfortunately, in our family we never knew how to solve problems "round the table". Everyone was bending his own line; and the temper, inherent in all three of us, did not contribute to mutual understanding. Mum wasn't a gift in that sense either. Therefore, my father's drunken aggressions, in which my mother usually took my side, were replaced by our quarrels with her. I had to literally fight on two fronts. Plus my parents' conflicts with each other, because my father behaved aggressively not only towards me, but also towards my mother. The atmosphere in the house gradually became agonising, just unbearable.

The culmination of my war for independence was a battle for a private room. There were two of them in our apartment. The larger one was considered to be common. There was a TV, there was a sofa and a table, at which I usually sat. The smaller room was the bedroom. There were two beds on which my mother and I slept (my father slept in the other room, on the sofa), and a wardrobe. I decided that I had a right to my own space and asked to have the bedroom all to myself. This caused a storm of indignation among the parents. Here they were in complete solidarity. In their opinion, I am quite naked, decided to separate, squeeze them out of part of the flat, and in general, demand too much. No, it's not going to happen!

I insisted. Another battle of character began. But this fight meant too much to me to give in. To lose meant to give up, to state my powerlessness, to break down psychologically, and in the future I would never be able to defend my right to anything. So I was ready to go to the end. And the situation began to gradually change in my favour.

The first success was moving the table into the bedroom. Especially since by that time it had become mine. It happened like this. The table in question was given to my father by his grandmother, that is, my great-grandmother Domna, when we lived in the small-family flat. It slid out, which made it bigger, and that's why all the festive feasts were held at it. At it I studied, ate, read and wrote, burned, played with friends, conducted chemical experiments and printed photographs with my cousins — in short, my whole life passed at it. I literally lived and bonded with it. And already in the new flat, shortly before the described events, I was given a rocking chair. Unsightly construction of metal tubes and a sagging seat made of leatherette, — but it was still a rocker. My father liked it very much and wanted it for himself. I didn't give it to him out of principle, even though it was uncomfortable for me and I had only sat in it a dozen times over the years. No one prevented my father from using the rocking chair and sitting in it all day and night. However, he didn't want it until it became his own. So, in the days of the battle for the room, I proposed a trade: I give him the rocking chair, and he gives me the table. He agreed. But he sat in the coveted chair only a couple of times, after which he lost interest in it and took it to the balcony, where it rotted away. I said that my desk should be in the same room as my bed. There was nothing much to object to. It was moved and placed by the window, between my bed and mother's.

Now I spent the lion's share of my time in the smaller room (I only watched TV in the other one), and all my activities moved there as well. Thanks to this, the room itself began to be perceived by everyone as mine. Then it was a matter of technique. Gradually, I insisted that my mother's bed was moved to the other room, which was now a parent's room, which was logical. Moreover, with the disappearance of the table, there was free space there. It was not possible to get rid of the massive wardrobe, since there was nowhere else to put it. But the battle was already won. I added a final touch, more symbolic than practical: a lock on the door to my room from the inside. To make it clear: this is my territory, and I can let noone in if I don't want to. This caused discontent, but already sluggish. When after a few years I got my own TV set, I, so to speak, became completely autonomous territorially, and I appeared in my parents' room only on holidays, as a guest, borrowing my table for a while.

One might ask, why go into so much detail? Little things, after all. Some table, some chair... But they're not really small things. They are significant details of my life at that time. The driving elements of a difficult and painful situation. The points of clash of characters, and at the same time the background against which these characters manifested themselves. Finally, the part of the struggle, the bet in which, without exaggeration, was my fate. Had I lost, it would have turned out very differently. Everything I'm going to talk about next would not have happened. And I wouldn't be writing these words now. I'm writing them, by the way, sitting at the same table.

Life is so complicated that sometimes even an unsightly piece of furniture can be of great importance. The words of a song from a famous film come to mind: "When thunder rumbles over your head, even a handful of straw can play a decisive role in fate." It's true.

At the end of the fight, I gradually reclaimed a separate room, which has since become for me a bedroom, a dining room, a study, and a place to meet with disciples and other people. From that moment on, my right to self-determination became a fait accompli. And most importantly, as soon as I achieved what I wanted and my parents got used to the changes, the cause for tension disappeared, the storms associated with it subsided, and the situation was somewhat defused.

Of course, all of this did not happen in a vacuum. There were many witnesses, first of all, relatives. The younger generation did not understand or care about these problems. The older generation was completely on the side of the parents. I began to look bad in the eyes of my relatives. My protests, quarrels with my parents, intransigence combined with sharpness of language and ability to cut off anyone's attempts to influence me, created a new image of me in their eyes. I began to be considered a harmful stubborn person who holds other people’s opinions in no regard, and they called me prickly. It never occurred to anyone to try to figure out the reasons. Those who were aware of what was happening in our family, reasoned as follows, "Everything is fine with him: dressed, fed, inspected. What else does he need? Why is he showing off?" All this was sometimes said right in my eyes. At first I still tried to explain something; when I realised that my attempts were useless, I began to simply reject attempts to lecture me, thus confirming my "prickliness". The lack of understanding of the simple fact that it is not enough to be dressed, washed and fed is truly astonishing. Purely physical care may be enough for a pet, but not for a human being. A human being needs another kind of attention, understanding, respect for his rights. I have encountered a completely different attitude. It was a bitter discovery for me. While I was still a child, nothing like this bothered me, there were no problems with this, and it seemed that everything was wonderful. But it wasn't.

What were the reasons for my relatives' view of the situation? Where were the origins of such a superficial and, I would even say, primitive approach to the problem? I think it was preconception. Even a good, benevolent attitude towards a person with disabilities on the part of physically healthy people is sometimes combined with their subconscious conviction that they, as inferior, cannot expect equal treatment, equal rights and equal opportunities. The conclusion arising from such an approach can be formulated as follows: "You are being looked after — and be happy with that. Sit down and don't move. It's not up to you to want more in your life."

The problem exists, and many disabled people experience it on their own skin. Or, it would be more correct to say, on their own psyche. Because it is an underlying and sometimes quite frank psychological pressure. Despite legislative acts affirming the equality of people in rights, society has not yet learnt to treat everyone equally. When this manifests itself, there is at least a lack of understanding, and at most — a frank definition of disabled people as second-class people, with all the ensuing consequences.

Speaking about the fact that society does not know how to treat people with disabilities normally, I can cite the attitude of children as an example. Maybe it is a weak indicator, and maybe, on the contrary, it is very bright. In any case, as an element of the overall picture it certainly has value.

My friends, who were used to me, showed quite normal attitudes. But there are plenty of other examples. From an early age, I observed how often children, not even little kids, but quite older ones, would stare at me point-blank, literally with their mouths open, which infuriated my parents. Sometimes, children and teenagers shouted at me "Hey, cripple!" or, with a laugh, "I wish they could drive me like that!" One day my mum left me at the entrance of a shop, and went in to buy something. A bunch of kids about 7-8 years old appeared. For a few minutes they stood in the distance, looking at me; then, wanting to see my reaction, they started throwing all kinds of rubbish. I kept quiet, and they quickly got fed up. When my mother came out, pebbles and fragments of bottle glass lay on my knees and shoulders. Much later, when I was already in high school, my cousins, Sasha and Dima, and I were walking outside, while at home there was a holiday and guests were sitting at the table. Two boys about 13 years old came up to me and asked, "Do you want a punch in the face?" I asked a counter question, "Why?" They, apparently expecting any reaction but not this one, were taken aback, "What do you mean...?" I asked, "Will it make you feel better?" They looked at each other and shrugged their shoulders, "No.", "Then why do it?" — I insisted. They shrugged again, then exchanged some fairly neutral phrases with me, tried out how the wheelchair rolls and walked away. We returned to our house entrance, a frightened Dima ran home and told others about the incident. Our tipsy guests rushed outside, caught the hooligans and made them apologise.

Fortunately, cases like the ones described above did not particularly touch me or upset me. Well, children don't understand, so what now?.. What can you expect from them? It happens. This is not a reason for insults and worries.

It would seem that we are not talking about some wild, low-culture lands, but about the Soviet Union, and all these children are the same Little Octobrists and Pioneers who were taught something and who, in theory, should have understood something. Something should have been explained to them, a normal attitude towards the sick and disabled should have been instilled in them. They didn't explain it, they didn't instill it. Or they did it badly, carelessly. Why? Is it because there was and is a preconception against people with disabilities in society? It is hardly possible to explain well to a child what you do not feel and cannot do yourself. Especially if he constantly observes from the side of adults a completely different attitude towards disabled people — not the one that someone may have pointed out to him. One way or another, but it says something.

In my childhood and early adolescence, I did not care about the problems of people with disabilities in general, and my own disability in particular. I simply did not stop my attention on them. Having got used to treating such things calmly and taking everything as a given, I just lived my life and it was not bad for me. But the period of high school graduation and after, as I said, was a step into a new, much harsher reality. It was only then that I began to truly realise my situation.

One of the unpleasant discoveries was that disability, as it turned out, for many is like a marker of underdevelopment. It was impossible to call me underdeveloped in the full sense of the word — after all, I studied well, read books, etc. However, this somehow did not prevent many of those around me — older relatives and others — from perceiving me as such. At the age of sixteen, I was often talked to as an smart second grader with the appropriate psychology. It was annoying, but it wasn't a problem. However, when I got a couple more years older and nothing much changed, I became concerned about it and began to carefully observe other people's reactions to me. Eventually, I became convinced that I was simply not taken seriously. Besides, there was something to compare it with. My peers, or even those who were a few years younger, were treated differently. In addition, it became clear that others tend to see the behavior of the disabled person primarily as complexes and painful reactions, and interpret it from this point of view. It is difficult to be surprised by this attitude, because people in my position really have a lot of complexes, insults and all sorts of problems connected with their physical condition. Everyone is used to it, and everyone expects it. But to experience the effect of such stereotypes on myself was not very pleasant. It's as if you say one thing and the person you're talking to hears something else — what they expect to hear. The impression is as if you were talking to a deaf person.

What's more. Much later, many years later, I observed how my attempts to tell someone about this problem — in fact, to repeat what I just said above — met exactly the same reaction. That is, they were also perceived as a manifestation of certain complexes and grievances, rather than as evidence of something real. According to many, when a disabled person tells that because of his physical condition he is perceived as a complexed, this is not a statement of facts from his life, but just the complaints of an offended person, the manifestation of his complexes. I would not be surprised at all if what I am writing now will be perceived by someone exactly the same way.

There is prejudice, stereotypical perception, and, probably, a subconscious desire to reduce the general problem to a particular problem of one particular person.

When my struggle for the right to self-determination began, only a lazy person did not try to lecture me, to tell me how unkind and ungrateful I was and how I tortured my parents. In addition, I was simply lectured on almost any occasion. And it was useless to try to explain anything, and even more so to express my opinion: it was simply dismissed in the style of "What can you understand!" Eventually I got tired of all this, and I began to learn how to fight back in order to get rid of my self-appointed mentors. I began to respond to lectures so that the next adviser would no longer wanted to bother me. I learnt to prick painfully. And there was something — after all, I watched them all for years, I knew them well, and I could poke each of them in a sensitive place. This is how I defended myself against constant attempts at pressure and moral blackmail.

That's when they started calling me prickly. They began to say that I had no respect for anyone at all, and that it was impossible to talk to me. "Talking" meant reproaching and teaching, and I had to listen silently. But I didn't give anyone such pleasure. Sometimes I'd get downright rude. For example, for some reason, my parents, grandmother and someone else were simultaneously attacking me, and I reacted in my own barbed manner. My grandmother would shout indignantly at me, "You can't be shout down by seven dogs!" I would reply, "And you don't yap at me like dogs. Talk to me like human beings." Of course, this was followed by a general storm of indignation. However, in the end, they left me alone.

Out of all these troubles I got in the eyes of others the image of a very difficult person — wayward, stubborn and with a sharp tongue. I had to confirm this image many times in the future, because they always tried to pressure me. Of course, not all of them. Those who didn't do it knew me from a completely different side. If such people and those who stumbled on my "prickles", told each other about me, everyone would even doubt that they are talking about the same person.

I quickly learnt to "prick" as I had one character trait that contributed to this. Irritability. It's a family trait that runs in my parents too. For all the differences in their personalities, they were exactly alike in this. Both my father and mother in moments of anger, fighting with someone, never controlled themselves and could say all sorts of things. True, their temper was combined with a resilience. It happened, someone would lose his temper, and in ten minutes he would calm down. But during the outburst, he or she had time to say something that would leave a heavy residue on his soul for years. Especially since they never apologised, considering it a humiliation. When someone told them it would be a good idea to apologise for the offensive words, a new outburst of anger followed and a response in the style of "Should I kneel before you?!"

I was, by and large, the same. My intemperance came crashing down on the heads of friends and younger relatives. Any contradiction could cause an outburst and a flood of swearing. My temperament in my youth was reminiscent of the temperament of the heroes of some films, some hot Spanish or Mexican dons, who were able, after exchanging a couple of phrases with a person they did not like, to grab a weapon. I think if I hadn't been confined to a wheelchair, I might have got myself in trouble for that.

Anyway, if you think back to the list of the so-called "seven deadly sins," you could say that the sin that was peculiar to me was anger.

Watching my parents in their moments of anger, which sometimes turned on me, even on my mother's side, and once I realised that it was inherent in me, I realised that something had to be done about it. I myself always felt uncomfortable and embarrassed after such outbursts. And I didn't want to unthinkingly offend anyone. But when an outburst happens, it is not very controllable, and during it you are not really responsible for yourself.

I began by explaining the situation to those on whom the cup of my anger was usually poured. I said, "When I lose my temper, I start swearing and calling you all sorts of bad words. Please don't take offence. That's my character. When I insult someone, I don't really mean it. And then I regret it." To their credit, I must say that they understood me and accepted my explanations. If I later broke down and called them all sorts of names, and then, cooled down, asked, "Aren't you offended?", they answered, "No. You said you didn't really think so."

How could anger be overcome? Either by cardinal internal restructuring, or by willpower. For such a change, including a change of attitude towards people, I did not have a background at that time. But I had willpower, and there was no lack of patience and persistence. I had to go this way.

Thus began another struggle, now in myself. It was not easy. After all, simply holding back when you are ready to break out is already a serious test. And to change yourself from the inside, to uproot the temper from your character, is probably one of the most difficult tasks in the world.

It was possible to overcome anger only much later, when the Teaching appeared — the very background for inner reorganisation, for deep change of oneself. However, I managed to take my temper under control then. Everything continued to rage inside, but I did not allow my emotions to spill out. But for "prickliness" it came in handy. I just had to learn how to release emotions in doses. In this case, they acted under the control of reason.

I'll note that I don't brag about that. The fact that I had to do that never pleased me.

...In those two or three years, I changed quite a lot. I changed both from the point of view of others — for the worse, of course — and in reality. I grew up. Maybe I was actually a little late in my childhood. But then life gave me acceleration, and the past was left behind, like an old, previously comfortable and reliable, but now dilapidated dwelling.

The old dwelling had been abandoned, but a new one had not yet been found. I felt myself on the road. Searching. In fact, it was a search for myself. Where I would find myself, where I would settle down, and there would be my new home. But where would it be?..