Photo credit: Iskander Salikhodzhayev
ASTANA – Addressing the needs of Kazakhstan’s disabled population has become one of the biggest and more prominent domestic issues in the country in recent years. After decades of Soviet exclusion, working to create an inclusive society is a challenge – but one taken on by many, including blogger Almaz Yerzhan.
Yerzhan, 33, a blogger and social activist for disabled rights, recently rose to Facebook fame when he arrived in Astana for treatment for the disease he has been fighting privately for more than 20 years, and when he began to publicly raise the awareness of problems faced by people with disabilities.
“When I was about 12, I was diagnosed with lupus erythematosus, a syndrome that can be described as a collection of autoimmune diseases in which the human immune system becomes hyperactive and attacks normal, healthy tissues. Symptoms of these diseases can affect many different body systems like joints, skin, kidneys, blood cells, heart and lungs, et cetera,” he explained. Yerzhan could at least walk in the first years after his diagnosis, but in the difficult 1990s, as the country got bogged down in poverty, so did Yerzhan.
“My legs started swelling and I had to see a doctor. We lived in a village and the doctors didn’t have the necessary equipment and sent me to Almaty for examination, where doctors confirmed the current issue and started my treatment,” he remembered.
However, the medicines Yerzhan took had many side effects, which were eventually too much for his body to cope with. “I lost my teeth and the bone structure in almost my whole body because of a lack of calcium. I ended up in a wheelchair.”
“When I was 22 years old, as my peers and friends moved on to universities and colleges and in their lives in general, I was stuck in a wheelchair. I withdrew into myself and was questioning God’s existence. I started to look for the answers in different religions; I was looking for my identity and purpose, asking questions like why this disease, why me, why poverty and why all at the same time.” He tried to quit taking the medications that made him sick, but became even sicker without them. He struggled mentally and emotionally as well as physically, he said.
“I was going through hardships and found myself in a mental trap, and it’s important that your friends treat you as an equal in those times, that they support you, maybe not financially, as not everyone can do that, but just by cheering you up, joking sometimes, as if everything is normal. That distracts you from the bitter reality: you’re sick and you’re alone,” Yerzhan said.
As Yerzhan started to look for alternative means of communication, he spent more and more time on social networks, in particular on Facebook.
Today, sitting in a wheelchair, he inspires bloggers from thousands of kilometres away. While Yerzhan was in Astana he had visitors every hour. His doctors advised tranquility, but Yerzhan couldn’t turn down the chance to see his virtual friends in reality.
Yerzhan created a closed Facebook group called Disabled of Kazakhstan Are Equal to All, where he often addresses challenging social issues that disabled face each day in Kazakhstan and has hundreds of followers. Beyond the group on Facebook, Yerzhan is known just for being an interesting conversationalist and a man with a big heart.
“I was looking for friends and socialising, and my hobby was finances and stock exchanges,” he explained. “Through the Internet I learned about KASE [the Kazakhstan Stock Exchange], and that’s how I drew the attention of the International Financial Centre of Kazakhstan, who started interviewing me. I put it all out on Facebook.”
“I used to refuse to indicate on social media that I was disabled,” Yerzhan said. “Only after I was in a hospital about two years ago did I decide to write about the problems of handicapped people in our country. At first, I was looking for someone to blame – doctors, government, people – but then I realised that blaming wouldn’t resolve my issues and I decided to act and improve; make a change instead of complaining, and that’s when I saw a breakthrough – through actions,” he said.
Yerzhan sought treatment in China at the recommendation of a friend before coming to Astana in 2014. “At the time I hardly could sit up. After about two weeks, I returned home and could sit in a wheelchair. After some time I had to go back to China to continue my treatment, but I didn’t have money. I felt ashamed to ask for money from people myself, so my friends asked on my behalf and so I went to China for a second time. The third time around, I had to move to China for six months for improved treatment, and that’s when I hit a dead end. Then, about two months ago, a fellow blogger on Facebook wrote a long post mentioning the names of some people who could help financially. She knew who to contact, and eventually Aidyn Rakhimbayev, the CEO of BI Group and the Astana Dakar Team racer, offered to help me and I was brought to Astana for re-examination. I was provided with accommodation and basic needs thanks to Rakhimbayev.”
Yerzhan plans to move to Astana permanently, he now says. “There is a great place in Astana called the Home for Elderly and Disabled, with great conditions in terms of food and doctors. There is a swimming pool, individual programmes for each tenant, et cetera.” He hopes to move in soon.
In the meantime, Yerzhan makes his living off the Internet, raising awareness about handicapped issues. A recent event at the Astana Alumni Association gathered more than 40 people, including representatives of the Nur Otan party and the Ministry of Labour and Social Protection. “They got a glimpse of what a disabled person feels, coming from a region to the capital, and what challenges they encounter here. There are simple and evident issues, such as ramps for wheelchairs: they are built at steep angles; even average people can’t handle them, not to mention wheelchairs.”
As big cities improve access, however, villages remain left behind. “If Astana moves on and adopts amendments and improves laws, people see their implementation here, but not in a village 20 kilometres away, for instance,” he said.
“Another very simple example is the Baiterek Tower – the symbol of the sovereignty of Kazakhstan. There is no ramp to the top floor. There are downstairs, but not to the very top level. I managed to get to the top, but the stairs will remain an issue for people like me.” Especially as the country prepares for EXPO 2017, Kazakhstan must work at becoming more inclusive for all people, the blogger says.
