"When people found out I was behind Stalingagulag there were millions of comments. How can you use profanities? Like, if you’re in a wheelchair, you can't do anything, you just have to pray, ask for someone's help and look at the world from the window of your apartment."
ADVERTISEMENTWhile Alexander Gorbunov strolls around Moscow’s Gorky Park in his wheelchair, strangers approach him.
"Thank you!" shouts a passing by cyclist filming him on his phone.
Gorbunov is the author of the once-anonymous Stalingulag. With more than a million followers on Twitter and over 370,000 on the Telegram messaging app, it’s one of Russia’s most-read political blogs.
Calling himself a "simple Russian from Dagestan", the blogger openly criticises the authorities and doesn't shy away from profanity.
"I don't know what the secret of my success is," he says modestly. "But my readers often tell me: you write what we're thinking. Perhaps it's because we're one people. We live in the same country and have common interests and wishes."
Last year, Russian news outlet RBK published an investigation, calling Gorbunov a possible author of Stalingulag. At the time, the blogger laughed it off, but the story took an unexpected turn and he felt he had to come out. According to Gorbunov, at the end of April "people in uniform" came to his family in Makhachkala and Moscow, asking after him.
Although police haven't confirmed this nor approached Gorbunov or his family since the blogger feels unsafe.
"I believe publicity is the only way out of this situation," he said. "It’s the only way for a person who hasn’t committed any crimes to protect himself in our country."
'My birth changed my parents' lives'
Gorbunov was born in Makhachkala with spinal muscular atrophy, a genetic disorder in which a person cannot control the movement of his muscles.
His father is a builder, and his mother worked in a shop but with the birth of their son, she had to quit as the child needed constant care.
"They never told me that my birth changed their lives, but with time I understand how a much it did," Gorbunov said.
The blogger looks back at his childhood with fondness, saying that despite the hulky, cheap wheelchair he was in, he never had problems communicating with peers.
"In Makhachkala, where I lived, we had a courtyard for several houses and that’s where we spent our time," he continued. "We were all of different ages and we all went to each other's homes for birthdays. It was fun."
After receiving a law degree in Dagestan, Gorbunov moved to Moscow. Wishing for as much independence as he could get, he started working at an early age. Now he rents an apartment in the Russian capital and earns his living trading. He says that freedom for a person with his diagnosis costs a pretty penny and it's a lot of work.
"I want to live as freely as possible," he says. "At the same time, I do not want to burden my family who are dear to me, whom I love. So I don’t see the long hours I spend working as a hardship."
'If you’re in a wheelchair, all you should do is pray and ask for help.'
Gorbunov’s electric wheelchair has a phone holder. Leaning forward, he answers calls on the speakerphone or uses his left index finger to type texts. His right hand lies on the control panel and when long fingers deformed by the disease, push the joystick, the wheelchair obediently moves.
Despite the seeming bulkiness of the wheelchair, Gorbunov moves in the stream of people with agility and confidence. Two male assistance come to help when the wheelchair approaches the more difficult parts of the road. They also help him take a sip of water or smoke.
"I can’t be left alone for more than 15 minutes, because I might get thirsty or hungry, I might want to move to the sofa or lie on the bed," says Gorbunov.
ADVERTISEMENTHe says many things in his life are difficult to explain to people who do not use a wheelchair and a person with disabilities often finds himself living outside of society. "You don’t see people in wheelchairs in the streets in Russia, because it's difficult to navigate them. There’s a huge number of people who can’t even leave their apartments."
In addition to the obvious inconvenience of disability, Gorbunov says that he often faces stigmatisation.
"When people found out I was behind Stalingagulag there were millions of comments," he said. "How can you use profanities? Like, if you’re in a wheelchair, you can't do anything, you just have to pray, ask for someone's help and look at the world from the window of your apartment. Preferably never leaving it."
Gorbunov says the illness gets worse every day, but he refuses to see doctors. "I want to live a full, busy life," he says. "And it’s reflected in Stalingulag. Because there I write only what I want to, and the way I want to, despite the criticism that I get. But that’s how I think and feel in the moment and I think that’s my right."