Disability and Mobile Citizenship in Postsocialist Ukraine

Conclusion

conclusion 231 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 31 32 33 34 35 36 37 38 39 40 41 42 Summer 1998. Pasha was 19 years old and preparing to enter the Polytechnical Institute to study electrical engineering. While helping a relative move some items from a hayloft, Pasha lost his footing and fell to the ground. The fall was not that high, but he happened to land hard on his back, on a piece of broken brick, resulting in an incomplete compression fracture to the fifth thoracic vertebra. Luckily, Pasha was operated on two hours after his fall by an experienced surgeon. After recuperating in the hospital for several months, Pasha learned that his parents, who had been living and working in Russia, had bought a small house back in their native Ukrainian village. Pasha, who now used a wheelchair, would live with them. Having seen all his plans for college and an engineering career go up in smoke, Pasha says he spent the next two years “driving himself crazy,” mad at the world and at himself. Pasha calls the day he was broken his “second birthday,” the day his life started over. An avid athlete, he had trained in gymnastics since early childhood and had traveled with a hiking club all over the mountains of the Caucasus. He had lived in Central Asia and Siberia and traveled throughout the former Soviet Union camping and fishing. Pasha studied hard in school and earned excellent grades; subsequently he was released from compulsory military service and was offered automatic admission to the institute of his choice. This was not the future he had envisioned for himself: living with his aging parents, lonely, stuck inside a house in a tiny village. Pasha’s father did what he could to modify the home—he knocked down a wall in the small kitchen to make an indoor toilet, and he widened all the doors. But Pasha needed help to get around outside, and his parents were at work all day. The unpaved village roads were muddy ruts in the spring and sheets of ice in the winter, making it nearly impossible for Conclusion 232 disability and mobile citizenship in postsocialist ukraine Pasha to get any exercise outside. Rarely did anyone come to call—Pasha says people in his village were embarrassed to visit his house: “Everyone has all these stereotypes and fears. They think invalids must be crazy (Rus. ubogi), and that if they visit me they will encounter a smoke-filled room, unpleasant medicinal smells, and my forlorn, pale face. They feel pity but don’t know what to do about it: Should they give me money? Or something else? So they just don’t come.” Few services were made available to Pasha in his rural environs, but he was entitled to health trips to sanatoriums for the spinally injured. Pasha says that meeting other people with spinal injuries gave him the jolt he needed to reassess his life. He began corresponding with these new friends via long and frequent telephone conversations, an option made economically feasible thanks to entitlements providing free or discounted phone service to the disabled. Pasha also became a ham radio operator and was able to communicate with other enthusiasts throughout the world. He got involved in wheelchair marathons, an endeavor that allowed him to keep himself in good physical shape, further expand his social networks, and travel. Pasha knew that as a spinal’nik he had little to no chance of pursuing the engineering career he had dreamed of. And anyway, his own experiences living disabled in a rural setting steered him in a different direction. Pasha recognized a pressing need to improve social and rehabilitation services , especially for those disabled persons living in the “periphery,” outside the major urban centers. He took his idea to representatives of the local SoBez, or department of social protection, but was told, “We cannot help you because you do not have a higher education.” Not to be deterred, Pasha began to seek out opportunities to enroll in university in the town nearest his village. After much negotiating with the university administration , in the late 1990s Pasha finally was admitted to study economics, a profession he says he consciously chose as one that was “feasible” in light of his “current status—an invalid in a wheelchair.” Even harder...