My name is Yuri, and I have cerebral palsy. Most of my life I have been walking with the help of canes. I was among the first children with such a severe motor disability in Russia to attend a public school, even though my local psychiatrist responsible for deciding which type of school I should attend, believed that I could only attend a special one. Right now, as part of my undergraduate degree, I am working on my thesis about the policy of the Republic of Ecuador on disabled people. My goal is to estimate whether government programs can improve their quality of life. But this article will focus on Russian cultural attitudes on disability and Russian government policy as well. These topics are highly relevant, given that in 2017 there were more than 12 million persons with disabilities in Russia, accounting for more than 8 % of the country’s population.
Since Russia ratified the UN Convention on the rights of disabled people in 2008, the situation has begun to change. I can now easily travel by plane or train independently, and I see that more and more buildings are made accessible. Indeed, since the introduction of the federal program “Dostupnaya sreda” (“accessible environment”) in 2011, the number of accessible objects rose from 15 % to 53 % in 2016. E-government has also facilitated the management of paperwork. But there is still a lot to be done. At the moment, Russia has a law on social protection of disabled persons, which guarantees them an equal right to education, equal labor conditions and health care, accessibility and prohibits any discrimination based on disability. But neither this law nor the Criminal Code sanction such discrimination. In spite of all the guarantees established by this law, the rights of people with disabilities in Russian legal system are recognized implicitly; that is, they are not distinguished as a special type of rights to be protected, and sanctions for violating them are not established.
The lack of infrastructure in previous years made me realize that if I don’t learn to walk and deal effectively with everyday activities on my own, I won’t be successful in my adult life. I am glad that I have learned to get on the bus using stairs instead of a ramp. It is risky – but it is my choice to live my life to the fullest. I could not reach this level of autonomy without my parents’ enormous effort and financial support. Many specialists have told me that in many European countries disabled people have caregivers and advanced equipment, go through multiple surgeries and advanced rehabilitation programs and remain in wheelchairs just because they do not need to learn to walk.
By contrast, there are many wheelchair users in Russia for whom every day feels like a terrible struggle. This is why awareness about disability, in general, remains low. Such low levels could be explained by the Soviet past of the country, and the situation remains the same in many provincial cities. It is commonly known that the Soviet economy was heavily industrialized, making people’s physical force the main factor of production. As Daniel Bell puts it, unlike industrial economies, in a post-industrial economy “mainstream production systems become much less about physical prowess than about the ability to manipulate information and data.”[1] So, there is hope that as Russia makes further progress towards a new economic structure, attitudes will gradually change.
Dealing with a disability also means learning about people and helping them become more tolerant. While I was in high school, I was often bullied, though not because of my disability. This was a true test for my self-esteem. But I learned not to pay attention to the bullies. More importantly, being in a public school I learned how different people are, and being so visibly different myself, I helped those around me accept diversity. Some people thought at first that I was intellectually impaired, but once we would start talking, they soon realized that we live pretty similar lives – we have the same problems, and we share similar values.
My admission to one of Russia’s most prestigious universities made my life much easier. With almost three hundred years of strong academic tradition, it has a special environment. I felt that my opinion, whether right or wrong, is valued. I learned to support my position with arguments, listen to the opinions of others, and analyze potential outcomes.
However, when it comes to social life, the situation is more disappointing. After classes, each of my coursemates goes in a separate direction. I think this might be because I move slower and because I am not capable of going everywhere I want. I cannot drive due to my health conditions. It also takes forever to go somewhere by bus, and to use the subway with the help of the assistance service; I have to plan the exact times of my trip in advance. The subway cannot be used independently by those who are unable to use the escalator. The only remedy I have is a program called “Sotsial’noe taksi” (Social taxi).
This program provides disabled people with reduced taxi fares on trips to the government and medical institutions only, and it has to be booked in advance through a special service. In any case, mobility is one of the biggest obstacles to building friendships. Speaking of friends, for a disabled person, it is hard to make them. But if the person is actively participating in various labor or study activities, he or she gets a chance to show others his or her traits and find someone with whom to share the same values – a friend.
So, as my personal experience suggests, disabled people in Russia face a number of difficulties and are not yet fully included into society due to an ongoing transformation of both the social and legal systems of the country. Too little time has passed since the dissolution of the Soviet Union for attitudes to change. But as long as a person with a disability is open-minded and determined to overcome everyday difficulties, they can definitely help foster more inclusive attitudes at a local level, which is, after all, where every great change begins.
Bibliography:
- Roulstone, A. (2016). Disability and Technology: An Interdisciplinary and International Approach., p.92
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