BREAKING BARRIERS

The Disability Rights Movement in Russia

Photographs by Platon for Human Rights Watch

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Youre Disabled, You Cant Fly! Or Can You?

By Tanya Lokshina
When I first crossed the doorstep of an American high school as a 17-year-old new immigrant from Russia, my jaw dropped kids in wheelchairs were playing tag in the wide hall, a cute teen-age couple was communicating animatedly in what appeared to be sign language; a blind boy was walking next to a classmate laughing at some kind of a joke. I turned to my American cousin and asked in still rudimentary English, Immigrants here sent to special handicapped school?
He stared at me uncomprehending, not realizing that in my 10 years of Moscow schooling I never had classmates with disabilities. In fact, until I went to the United States in the early 90s I hadnt seen many people with disabilities. Back home they were next to invisible, confined to special institutions or their homes, as the concept of an inclusive society didnt exist. Certainly, over the last 20 years, conditions for people with disabilities in Russia have improved. In Moscow and other large cities, you can actually see ramps well, at least in the city center or come across traffic lights Vera Kocheshkova and her mother, Tatiana In 2011, Vera graduated from a high school for children with disabilities. She is active in Best Buddies, a program that connects people with and without disabilities. She enjoys helping her mother, Tatiana, around the house; they are best friends. A daughters smile makes a happy mother, says Tatiana. Nothing is more important in life. equipped with a sound signal for the blind, or even find a few disabilityfriendly kindergartens and schools. However, people with disabilities are largely cut off from society and have very limited choices. So, Russias ratification of the Convention on the Rights of Persons with Disabilities in May signaled a great moment for the countrys more than 13 million citizens with disabilities. In practical terms, this long-awaited ratification means that Russia must now translate the guarantees in the convention into domestic legal reform and overcome the pervasive discrimination against people with disabilities. That is far from an easy task.

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Vanya (Ivan) Alexeev Vanyas mother is an active member of the Parents Group at Perspektiva. Since early childhood, Vanya has taken part in many public actions organized by Perspektiva to support people with disabilities. Vanya has read all of the Harry Potter books and hopes to write a sequel someday. He loves to play with his younger brother and sister.

Yulia Averyanova For two years, Yulia ran Perspektivas sports programs and now remains a consultant with the organization. Yulia enjoys skiing, ice skating, and paragliding. Recently, she introduced a blind friend to the delight of downhill skiing.

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Victor Bodunov and his mother, Valentina This year, Victor finished his training as a print shop technician and hopes to find a job very soon. He is active in Best Buddies Russia, a volunteer movement that creates friendships for persons with intellectual and developmental disabilities. Victor has starred in several productions of the Theater of the Nave, an acting program engaging people with disabilities, and especially enjoys musicals. One of Victors hobbies is playing computer games.

People with disabilities in Russia face a range of barriers that limit their participation in society. Public buildings and transportation are often inaccessible. People with mental disabilities are often forcibly confined to institutions for long periods of time. Pregnant women who have disabilities are coerced by medical professionals to have an abortion. Parents who give birth to a child with Down syndrome are still encouraged to give up their baby. According to the United Nations Childrens Fund, only 2 percent of Russian schools have an inclusive education approach, in which children with and without disabilities attend school together. The government pledges to expand inclusive education to 50 percent of schools by 2015. But reaching that goal will require a comprehensive plan to improve school infrastructure, train teachers, and last, but definitely not least educate parents and the community as to why this is important and beneficial for society as a whole. So many things need to be done and you just cannot accomplish it all in one day, said Denise Roza, an American who has lived almost half her life in Russia and runs the countrys leading disability capacity-building and advocacy organization, Perspektiva (Perspective). In addition to changing legislation and introducing all different kinds of concrete, tangible measures, one has to work on changing peoples attitudes. If I were given the power to do this one thing right away, Id go for accessibility make streets, offices, transportation, shops, cafes, schools, universities, entertainment centers, apartment buildings, all kinds of facilities and services accessible for people with disabilities. Not only will it release people from the confinement of their homes or institutions, but they will also become visible and the climate in society will gradually change. Others will eventually start viewing and treating people with disabilities as their neighbors, classmates, colleagues, just like other people in their community. A champion for the rights of parents with disabilities, Natalia Prisetskaya, recalled that when Russia signed the Disability Rights Convention back in the autumn of 2008, she was in fact suing a local air-carrier for refusing to let her on a plane. Earlier that year, Natalia had gone through registration and security in one of Moscows airports and was ready to board when the airlines representatives told her that passengers in wheelchairs could not travel unaccompanied. They just said, Youre disabled, you cant fly! Prisetskaya recalled. This was open discrimination.

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Alexei Krykin Alexei is an active participant in Best Buddies, a program that links up disabled and non-disabled people. He and his friend Ruslan attend movies, theater, and soccer games together. Alexei is active in the Theater of the Nave, an acting program organized by Perspektiva. He plays the flute, makes ceramics, enjoys listening to music, and likes table tennis.

Yana Kovaleva Yana has been active in Perspektiva for almost 10 years. She came to work for the organization as a young girl and became a business consultant and a job coach for people with disabilities. Yana is married and has a five-year-old daughter.

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With support from Perspektiva she successfully fought the airline in court and secured extensive media coverage. Natalia thinks that the publicity they managed to raise for her case might have actually pushed Russia toward signing the convention that year. Signing was the first important step in the right direction but it took over four years for Russia to proceed with ratification of this international treaty, undertaking specific obligations to ensure equal rights for people with disabilities. It will also take Russia some time to introduce all the necessary changes to its laws and practices. The Olympics in Sochi in 2014 will certainly be a major test, as Russia will host a large number of people with disabilities as guests of the winter games and then as guests and participants of the subsequent Paralympics. The entire infrastructure needs to be prepared, but if there are some acts of discrimination, that will really hurt Russias image. Well and frankly, why should people have to endure so much degradation? said Prisetskaya, the woman who proved to her country that she can fly big time, wheelchair or not. It is now up to Russia its government but also its citizens and advocacy groups like Perspektiva to make sure that its millions of people with disabilities dont have to fight legal battles to travel, study, work, go shopping, play sports, go out with friends in other words, live a life just like anyone else. Tanya Lokshina is a senior researcher at Human Rights Watch and deputy director of its Moscow office. She writes a column for the Russian current affairs website Polit.ru. Prior to joining Human Rights Watch, Lokshina headed the prominent Moscow-based human rights think-tank Demos. Kyrill Drozdkov After studying in a mainstream school for five years, Kyrill was on the verge of quitting because all of his classes were to be held on the second and third floors of a wheelchair inaccessible school. His mother came to Perstektiva for help. Perspektiva helped raise public awareness about this problem and the school finally installed a manual chairlift. That was four years ago. Today, Kyrill is 14 years old, has many friends, and is one of 19 students with disabilities at his school. He helps Perspektiva train and support children with disabilities, aged 13-16, to become leaders in their communities. Kyrill also speaks to student and adult audiences about the rights of children with disabilities.

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Yulia Simonova Yulia is co-program director of the inclusive education program at Perspektiva. She holds training sessions on disability issues, inclusive education workshops for teachers, parents and activists, and disabilities awareness classes for schoolchildren. She has taught 1,000 young people to be trainers on disability issues in Russian schools. Yulia swims, rides horseback, and loves driving.