In its treatment of people with disabilities, Ukraine has to choose whether to mechanically repeat Soviet patterns or to follow the example of democratic countries.
“There are no invalids in the USSR!..”
70 years ago, when Soviet Ukraine started recovering from World War II, the soldiers that paid dearly for victory over Nazism received a cold welcome by the “Great State which won the War.” The victors did not accept weakness. Like Nazi Germany, where people were treated according to their ability to contribute to the “Great Nation,” for the Soviet Union every person was just an instrument, a labor element for building socialism. Receiving the status of a disabled person with a government pension was extremely complicated. Soldiers coming back from the war returned to their jobs. Those who still work by their old profession were forbidden to be given a disabled category (even those who lost an eye or a limb).
In its policy the state was led not only by the need of working hands to restore a country ruined by war, but also by raised spendings for pensions, as many people were crippled by war. The state with the help of doctors inspected the injured for “speculation” scrupulously. Disabled people who were mobilized for labor during the war were fired after millions of demobilized soldiers returned to their jobs. Some employers tried to get rid of “not so productive workers” by accusing them in parasitism. These people were left defenseless – in the Soviet Union, associations of disabled and veterans were forbidden.
In Nazi Germany, people with heavy physical and mental disabilities were administered a “mercy death”; in post-war USSR, they were sentenced to rotting alive in the institutions where they were ushered away from the eyes of the “perfect society.”
To a large extent, this state of affairs remains in modern Ukraine: a secluded life in a closed institution with insufficient funding and lack of any opportunity for development often is the only choice for a person with a disability. Even if living at home, such a person rarely leaves it – it is physically impossible.
“There are no invalids in the USSR!..”, a book published in London in 1986 by Valeriy Feofalov, who emigrated from the Soviet Union escaping repressions for his activism for rights of disabled citizens, describes the general attitude to the people considered “redundant” by the government. Here is a fragment:
“Being unable to place a disabled person in a wheelchair, the state is ashamed of his appearance and tries to remove him from the eye! And this is logical: in a society claiming to be perfect everything must be orderly – clothes, windows, facades. How can we allow an ugly, gnarled createre to suddenly crawl or roll on a makeshift plank along the rows of flawless trumpeters and red tribunes? Who made him? Kill him! Kill him! Kill him!”
A different path for post-war Germany
After-war Germany took a totally different path. Organizations for disabled war-veterans were established. Noticeable changes started to take place after 5 years, with the appearance of impairment-related associations. Their aim was to provide relief for parents, as well as assist their children with disabilities. When these children grew up, they continued to advocate their rights within the youth movement, later joined by the women’s movement. If at the very beginning the main point of gatherings and discussions was infrastructure and equipment of public places for people with special needs, later participants realized that the lack of ramps is only the tip of the iceberg. The real issue is segregation within society.
From the 1970’s onwards, courses on the perception of disability were set up, which evolved into promoting legislative changes. Step by step, German disabled activists worked to make society perceive their rights seriously. They initially faced not being understood, but Germany hosts more than 20 centers for self-determined living, where it is the disabled people making decisions. More of them organize their life with personal assistance, representatives of the Movement have seats in parliaments and political bodies. Despite the fact that still the fight for self-determined life it is not over, during the last half of the century the perception of disabled in German society has dramatically changed.
While people with disabilities in the Soviet Union were challenged with surviving in the atmosphere of a cult of labor, in Germany they were dealing with problems of another level – self-determination and eliminating prejudgment.
People with disabilities in Ukraine today
It is unfair to say that only the state is to blame in ignorance, disregard, and discrimination of people with special needs. Society plays a big role too. As Ukraine inherited the Soviet-way of treating the issue by state institutions, changes at the grassroots level are the main hope for creating an inclusive society. So what people with special needs feel living in Ukraine?
“First off, I would like to point out that the word ‘disabled’ does sound quite off-putting, whereas the other often-used terms ‘handicapped’ and ‘invalid’ have even worse connotations to them. These words discriminate. Maybe, it would be better to say ‘people with mobility or other limitations,'” says Kateryna Smirnova at the very beginning of the interview. Kateryna’s illness manifested itself at the age of 4, following a DTP immunization.
The illness progressed and Kateryna started using a wheelchair at the age of 20. She graduated from the Open International University of Human Development “Ukraine,” which is the only inclusive university in Ukraine where people with special needs can receive a higher education in a friendly, accommodating environment. She loves her job as a translator and limited mobility is her only real problem, as much as it is a problem for thousands of others. Ukraine’s infrastructure is completely unadapted for those facing transportation difficulties. Ukraine’s streets seldom have ramps or their design becomes a reason for irony. Katya jokes while describing these conditions in public places, but not everybody is able to retain their humor.
“I am just very lucky, because my family and friends help me a lot, but I can’t imagine what one can do without having such a strong life support system.”
War makes disability a pressing issue
The last year and a half, the problems of people with the special needs started becoming a public issue for the first time in Ukraine: the war with Russia’s hybrid army crippled many of defenders of the Fatherland and now it is society’s turn to defend them from bureaucracy, negligence, corruption and other components of the post-Soviet package.
Oleksiy Krasnoschokov, head of the Public Organization pidmoga.info, is familiar with all the complicated aspects of cooperation of people with special needs and the state: he uses prostheses himself.
In summer 2014, Oleksiy realized that the guys coming back from the war will face a lot of difficulties. That is how the public organization pidmoga.info was created.
“We went to the military hospital to shoot a video. I had visited the soldiers before many times. they were glad to talk with me, because a psychologist embarrasses them. They say that they are not angry and don’t need help – often this is because they come from small towns and have stereotypes. But when a person with problems similar to theirs comes and shows that it is possible to live and to work with a disability, they take it positively.”
Oleksiy and his colleagues demonstrated the video abroad. Then they analyzed the documents of the Ministry of Social Affairs and started to act. When their volunteer work took up all of the time, the activists created a Public Organization.
Soviet attitude of the authorities
The work of volunteers becomes challenging when the state tries to defend its money. Just like in Soviet Union. A year ago, the case of Volodymyr Ganchev became famous. His leg was amputated, but the doctors assigned him a 3d category of disability, which is usually given to people with the mild case of diabetes and other incomparable diseases, meaning that he was not eligible for the one-off payment for veterans who lose the ability to work – 60900 UAH ($2768). Media attention made the doctors change the diagnose. Veteran Oleksand Kikin found himself in a similar situation one year after. Alexandr lost his leg during the war, but instead of writing the obvious and real reason the doctors started searching for all possible ways not to give him a status of the disabled soldier. They identified the diagnosis as a common disease. Again, pressure of activists and media attention made the doctors change the diagnosis. Such cases are quite common in Ukraine. Until recently, volunteer soldiers had no documents that they were defending their Fatherland and no corresponding state benefits. The effectiveness of the law which was called to fix this injustice yet needs to be analyzed.
Although all attention is now on those coming back from the war, they are just a small percent of those who need support. According to the Public Service of Ukraine for War Veterans, 390 veterans need prosthesis and rehabilitation equipment after the war; Oleskiy measures the total number of Ukrainians that need a prosthesis at 13-14 thousand.
Kateryna worries about Ukraine’s defenders no less than about herself, and thinks that the circumstances which we have now will make society look at the problem with a broader perspective.
The issues with which activists such as Oleksiy have to deal are diverse – from administrative issues to tackling bureaucracy to facilitating dialogue between citizens and authorities. He, with colleagues, is confident that only systematic changes will make a difference, but is not considering trading grassroots activism for civil service: the $125 that the state would pay him is insufficient for independent living in Kyiv.
Grassroots activism and social experiments
Both Kateryna and Oleksiy are confident that public attention to the problem is helpful and can force the authorities to act. In the past, media coverage has seldom gone further congratulations once a year during the International Day of Persons with Disabilities. Activists are changing that. A few weeks ago famous Ukrainian TV-presenter Solomiya Vitvitska together with the singer and writer Irena Karpa and other Ukrainian stars tried to move through the capital in a wheelchair.
This social experiment intended to check whether it is easy to walk through the city for people with mobility limits. The result was predictable – the city is totally unfriendly for wheelchairs. This event managed to draw the attention of many ordinary Ukrainians and take back the invisibility of people with disabilities. As they are never seen on the streets, because it’s impossible to travel them, Ukrainians are sometimes unaware that such people even exist.
Recently, pidmoga.info organized launched a petition to the Kyiv mayor Vitaliy Klitchko to make the city more friendly for people with special needs. 3 November 2015, the International Day of Persons with Disabilities, saw the launch of a new initiative – Dostupno.UA (translated as Accessibility.UA), which plans to document cases where city infrastructure is inacessible for people in wheelchairs.
This campaigns are only the top of the iceberg. Real work takes place after them: when society with the help of the media realizes the problem, doors of cabinets open to activists who have a chance to talk to authorities and initiate real change. As with other issues in Ukraine, it is the activists that catalyze change, not the state. Yes, Ukraine doesn’t have a long history of inclusive policies on the issue, as opposed to, for example, the USA, where the Institution for Blind Children was established at 1784 and formal education for the deaf started at 1810. But two years ago, during the Euromaidan revolution, Ukraine reached a turning point. Now, the rights and problems of people with special needs are an another exam which will show whether it chooses a civilized future or an oppressive past.
