Yura ASTAKHOV (Boston, USA),
the son of one of the founders of the Soviet Union of Disabled People, Yuri Georgievich Astakhov, a first-group disabled person (in 1941, at the age of three, during the bombing of Moscow, he sustained a spinal injury, complicated by bone tuberculosis, which led to paralysis of his legs):
What was it like to live in the Soviet Union in
a family with disabled members?
Life was very difficult because any movement for my father was a problem. To get up from the floor to the chair, he had to jump. It was such physical labor. But this burden was just as heavy for my mom and for me. So many disabled people, who lived on the second floor, didn’t go outside for years. When I got older, I just carried them on my back. I remember when someone gave my father and me tickets to the Kremlin Palace of Congresses, and we tried to park the car, but it was forbidden near the Kremlin, and I carried my father on my back for one and a half kilometers to get to the Kremlin.
According to the Military Medical Museum in St. Petersburg, during the Great Patriotic War, 46 million 250 thousand Soviet citizens were injured. Of this number, about 10 million returned from the front with various forms of disability, including 775 thousand with head injuries, 155 thousand with one eye, 54 thousand who were blind, 3 million who lost one arm, and 1.1 million who lost both arms. After the war, in the USSR, it was common to see maimed people from the just-ended war in public places (train stations, markets, squares), often in tattered clothes, with orders and medals on their chests, doomed to poverty and semi-starvation. These homeless heroes begged for alms from those for whom they had won peace. But then they disappeared, the streets were cleared of their miserable appearance, and few people wondered where they went. It is said that Stalin, while driving through post-war Moscow, expressed his displeasure at the number of disabled people on the streets. This was "understood" by his subordinates, and it became one of the reasons for the eviction of homeless disabled people from Moscow.
Yura: I have a unique family, I have unique parents. My dad, I was named after my dad, his name was also Yuri Astakhov. And, accordingly, my children and grandchildren don’t spoil me with a variety of names. My dad was a first-group disabled person, one of the founders of the Soviet Union of Disabled People.
Gregory: Independent from the state?
Yura: No, at that time it was not independent from the state. They were within the Ministry of Social Welfare. But, you remember, someone once said that there’s no sex in the Soviet Union? This was during a telebridge. The Minister of Social Welfare of the RSFSR, Domna Pavlovna Komarova, said that there were no disabled people in the Soviet Union.
Yura: So, for disabled people, compared to what was happening in the world, there were no living conditions. There were no ramps, it was impossible... For example, my dad was one of the first to get permission, as a first-group disabled person, to study at a higher educational institution. First-group disabled people could not receive an education.
Gregory: And after that, they couldn’t get a job.
Yura: And after that, getting a job was impossible. Everything was closed off. I remember the chairs they used to move around — compared to the German ones, and what existed in the world, these were ten times heavier. The prosthetics my father used to walk with weighed 16 kilograms. My father was paralyzed from the chest down. When you talk about what it was like to live among disabled people in the Soviet Union... My parents and their circle were very interesting, goal-oriented people, despite their physical condition. They were cheerful, active, and engaged, but, nonetheless, for example, I still can’t look at artificial flowers because it was one of the tasks given to disabled people — it was slave labor. You had to make a huge number of flowers to earn minimal money. Or the second job — "nakatka," where you sit and simply stick labels. You had to make thousands of labels to earn pennies. This applied to everything. The pension of a first-group disabled person was 24 rubles. Disabled people living in institutions were not allowed to marry on their own. It could only be done with the permission of the social welfare authorities.
Gregory: I know that if this happened and a woman gave birth, the state would take the child away.
Yura: Because my father was actively helping other people, I witnessed the unfolding stories of two people I knew well. One of them was Gennady Guskov, who came from a nursing home in Voronezh. In Voronezh... he had his arms and legs almost completely paralyzed, he had cerebral palsy, and he moved around in a wheelchair like that, and could only move his finger — that was the only thing that worked. But he was a phenomenal person. He invented a car for himself, started a business right out of the nursing home, they began making battery testers, and as a result, people living in that nursing home started earning money. He was arrested for this, taken to the police, and beaten. This was the Soviet Union, the 80s. Genka went on a hunger strike right in the police station. Other dissidents talked about him, it made it to the world press, and he was transferred to Moscow. I don’t remember exactly, but I think it was Botkin Hospital, and from there, my father and I came and took him. He lived with us for two years, until one day the neighborhood officer came and said that either he would leave, or we would lose our apartment.
Yura: I wanted to say this: in our apartment, there was always someone living, my parents were absolute altruists. Someone was always coming to Moscow to get treatment, enroll in a university, or had some other problems, and most often, they were disabled. Probably, I should also mention my mom, because she is a healthy, beautiful woman, whom my father met in school. My father missed two years because he was sick and before he was fully paralyzed. After that, they were together their whole life. I remember, when I was here, I asked my mom: "Mom, how did you marry a disabled man?" And she answered: "What are you talking about? I was happy when he agreed, because he was so popular!" And life was very difficult because any movement for my father was a problem. To get up from the floor to the chair, he had to jump. My father loved gymnasts, and he used to tell me about the "Korbut loop." That was exactly what he had to do to take a step. It was such physical labor. But this burden was just as heavy for my mom and for me. So many disabled people, who lived on the second floor, didn’t go outside for years. When I got older, I just carried them on my back. I remember when someone gave my father and me tickets to the Kremlin Palace of Congresses, and we tried to park the car, but it was forbidden near the Kremlin, and I carried my father on my back for one and a half kilometers to get to the Kremlin.
Gregory: To the Kremlin Palace of Congresses. You know, I still don’t understand how this transition happened for people who wanted, well, maybe even to somehow help the state establish a normal life for disabled people. I’m talking about the organization they created. Basically, they didn’t demand anything special. They just wanted to sort out pensions, create special homes adapted for the life of disabled people. Maybe not everyone liked that this organization wanted to establish connections with foreign countries, with similar organizations abroad, and something along those lines. How did they quickly turn into dissidents and anti-Soviets?
Yura: Actually, there was such a situation... an active person is either a dissident or not a dissident. Among the people who were involved in the creation of the Society of Disabled People, like Yuri Kiselev, who was a dissident, there were also people like my father, there were professors from Moscow State University who taught scientific communism or something else. Everyone survived as best they could. I think that their main idea, which didn’t align with the Soviet Union, was that a person without legs, a person in a wheelchair, a person on crutches — that spoiled the image. Do you remember, after…
Gregory: Yes, after the war. Disabled people without arms and legs, who were called "samovars," were sent to Valaam…
Yura: Yes, these people are completely normal, they can work, but conditions need to be created to make their lives adaptable. And what they managed to do... Actually, in the United States, if you remember, in 1991, the Americans with Disabilities Act was passed? It mandated ramps, accessibility for metro entrances, standardized toilet sizes so that people in wheelchairs could enter... That’s what it was about.
In the Soviet Union, there was a motorized wheelchair with a single-engine motorcycle engine — Izh-Yupiter. It was a gasoline stove mounted in the front that could catch fire. I always joked and called my dad Chichikov because we had 8 of these vehicles. Dad helped other disabled people, giving them away for free or for a small fee, but these machines would quickly fall apart, and it was impossible to drive them.
When I was 5, I couldn’t walk either. I had a rare disease — Keller’s disease. Suddenly, my legs started to get worse, and my mom ended up with two disabled people instead of one. We were riding in the motorized wheelchair, and it broke down, and our house was a 12-minute walk away. We lived on Vorontsov Street, on Taganka, right on the Krasnokholmsky Bridge. We stood there the whole day until someone found us. Since neither of us could walk, I remember how my dad and I wrote our home phone number on a matchbox so someone could contact us. And actually, my shock in America was when I saw buses where the front platform lowered, and a person in a wheelchair was able to get off the bus. But what struck me the most wasn’t even that, but the fact that in Boston, near a baseball field, the lights would turn on in the evening, and teenagers would play baseball, and some boy on crutches was playing with them, and all the others were waiting for him. And it was absolutely normal, because in the minds of people, this was natural.
Probably, that was one of the main tasks set by the group, part of which my father was. They argued, just like any opposition, and couldn’t come to an agreement, and that’s all... You know, I had an amazing example of people who were passionate, who lived, who lived very actively. My father worked a regular job, and there was something funny about it too — he worked in Printing House No. 19, which printed the river fleet schedule. But this printing house had another task — printing anti-Soviet literature, Solzhenitsyn’s works, for Politburo members, in a quantity of 200 copies, which they would hand out for signature, and then those copies would be returned, and in the printing house they...
Gregory: Cut them up.
Yura: Yes. And my dad and his bosses would pull out these books, photograph them, and then we would read them.
Gregory: Did they print the exact number?
Yura: Yes, everything was under signature. They got caught, and my dad lost his job. But actually, it's surprising because, despite all our flaws, we can't be called anti-Soviet... although, probably, it was called anti-Soviet activity, but no one ever pursued us. I don't remember anyone pressing us.
Gregory: No, well, it's known that the KGB was involved in this, because it’s 100 percent, like any form of human activity outside of any control, right? I even read, I didn’t know this either, that several times they appealed to the Soviet authorities asking for people with physical disabilities to be allowed to participate in the Paralympics. And the response was always categorical: "We don’t have such people at all." Yura, I wanted to ask you: what did life in this family and communication with these people give you for life, what have you personally learned from it?
Yura: Well, look, today I work as a massage therapist, one of my jobs is a massage therapist. And what my parents and this group of people did, in English it’s called "service." They helped other people, and there was no big idea, no religious motivation. It was just so natural. What do I see as meaningful and what gives me satisfaction? When I can help someone. I’ve been given more by God and my parents, because from 5 to 7 years old, I couldn’t walk. I rode my bike from St. Petersburg to Vilnius, I climbed mountains, I did... I was a candidate for Master of Sports in boxing, although, honestly, not quite a candidate, just the first time, to be honest. But the most important thing is when you can help someone and make them feel better. Probably, that’s the most important thing.
Gregory: Did you ever discuss in your family why there was such an attitude toward disabled people in the Soviet Union? We’re currently working on a big project about the Gulag, and I remember I found a mention of a person who worked in the NKVD and supervised people with disabilities. And there was even a thought, I’ll paraphrase it, that physical incapacity was already a guilt. That is, a person was born and immediately became guilty because something was wrong with them compared to others.
Yura: You know, in our house, there was both Solzhenitsyn and religious literature, so we had a pretty sober view of what the Soviet Union was, what the philosophy of the country we lived in was. So, we, and my father, understood that.
Gregory: How did people react?
Yura: They were scared. Here's another example: Gennady Guskov, whom I told you about. For instance, he needed to go somewhere, he had a ticket, and the conductors wouldn’t take him. So, we had a whole system. Someone would approach the conductor, give him the ticket, and at that time, we would pick him up and carry him inside. Who needs him? He’s disabled! What do we do with him? People were scared, they didn’t know what to do with this situation.
Gregory: You know, talking to you and your parents, I opened up a whole new world for myself, a kind of parallel one. It was very unexpected, even though I understood the country we were living in, but it was something beyond that. I remembered the project we’re working on about the Gulag, and this NKVD person who was making up cases. I remember one case that really shocked me — the "Organization of the Deaf-Mutes." They were accused of being a fascist organization with terrorist aims, and 37 members of this group were executed. Only later did it turn out that they were deaf-mutes.
Yura: Can you imagine a paralyzed person who created a machine for himself, made it possible for disabled people to earn, to be taken by the police and beaten with feet? Then they were sent from one institution to another, closer to places where it was hard to breathe, to quarries, so they would die faster. And in the first institution, Genka Guskov put the director of the institution in prison, along with 4-5 nurses, for murder. So, these grandmothers were also killed for some money. This is also part of the country we lived in.
Gregory: So, before the Disabilities Act was passed, which protects the rights and provides opportunities for such people, how was it in America?
Yura: Bad. It was just as bad. I have friends who are trying to open a math school, but they are not allowed because there is no disabled access. We can’t open the school because there are no facilities. They never had disabled people in their lives, but I understand. A specific example from my life: when my parents arrived, the subway ramp on 191st street went to 168th street, then to 59th street. That’s about 10 km. So, I had to carry my dad on the surface. And now every station is equipped with it. I remember how in New York, there were homes for the blind. How they were equipped, how many devices there were to help people orient using sound. It’s a completely different level of care.
Gregory: And how did your parents react when they came to America and saw all of this?
Yura: Well, they were shocked. They perceived it the same way I did. It was so urgent. I remember when I saw the first bus that lifts people up, and I came to you and said, let’s make a show so people can see how it works. And again, it’s very important to show how we can make sure that people with disabilities live normally and are part of everyday life. I took my parents to travel around America, in hotels and pools, everywhere there was access for wheelchairs, and I took my father into the water and swam with him. He swam several times in his life. Every pool here must be equipped with a ramp for disabled people.
Gregory: How do you think, what happened in the Soviet Union with respect to people with physical disabilities — was it part of the system, socialism, with its inhumane attitude toward the individual, or could it be a trait of Russian mentality?
Yura: You already said two right words in this question. I think it’s a trait of the system, of socialism, not Russian mentality. Because I believe that any human mentality is compassion. Some people are more compassionate, some are not, but in human nature, there is always a desire to help. If someone falls, in a normal society, they’ll be helped. I’ll give an example: I left in 1991, and the first time I came to Russia was in 2001. Ten years passed, and I felt that there was no respect for the individual, for human life, in the country where I was born and lived for 27 years, compared to the United States of America. And I think this was the policy of the Soviet Union — to make everyone big and beautiful. It’s like a photo on Facebook. We don’t post a photo where we look bad. We post one where we look good. Why show the armless, the legless? It’s better not to see that. This is, in my opinion, the fundamental difference between the society we live in today and the one we lived in... Well, today it’s scary what’s happening because there’s no respect for the human person, for the individual, you understand? What difference does it make if a person is in a wheelchair or walking on their own? They’re still a person...
