Disability and Mobile Citizenship in Postsocialist Ukraine

1. A Parallel World

a parallel world 13 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 Fate capriciously hangs up the mirrors ha-ha My life is a fun house. ha-ha I cry and laugh, Dance and sob, I spread around smiles and just then . . . fall asleep . . . from boredom. The clocks tick . . . The world goes up in a flash of light . . . My world of mirrors. —Poem by Zoia Becoming Broken Sasha Pavlov has only vague recollections of the accident that he says divided his life into pre- and post-trauma at the age of 16. Sasha’s mother, Zoia, an engineer and nature enthusiast, always sought ways for Sasha to escape the burdensome heat of Kyiv (Ukraine’s capital city of approximately 2.7 million) during the summer. This year—1991—she’d sent him to spend a month with his grandmother, who lived in a mid-size town on the banks of the mighty Dnipro River, downstream from the capital city. Sasha was a strong swimmer and had spent much of the summer in the water with friends. Sasha does not remember that final, “unlucky” dive, 1. A Parallel World 14 disability and mobile citizenship in postsocialist ukraine the one that “broke” him, but he does recall briefly regaining consciousness underwater. In that moment, he says, he realized he “couldn’t feel himself,” neither his arms nor his legs. Press articles about Sasha and the accident report that his friends dragged him from the water, but Sasha and Zoia tell a different story. In fact, says Sasha, he doesn’t quite know how he made it to shore, because he was diving and swimming out of sight of the others. But he does remember having a peculiar vision, like a dream: a figure, “like a whitish fish, or an angel,” was swimming in the water, beckoning for Sasha to follow. Somehow Sasha managed to accompany the figure to shore, an improbable feat that Zoia aptly calls “our miracle.” Sasha briefly regained consciousness in the ambulance; he recalls a woman’s voice, a nurse, pleading with him: “Don’t sleep, don’t sleep.” On average, 2,066 people receive spinal cord injuries in Ukraine annually , and the incidence increases by 91 injuries each year.1 It is estimated that 32,000 people in Ukraine are living with a spinal cord injury, or around .07 percent of the entire population.2 For comparison, in the United States around .08 percent of the population are living with a spinal injury (259,000 persons), and around 12,000 new injuries occur each year.3 As in the United States and other Western countries, in Ukraine major causes of spinal cord injury are vehicular accidents, falls, and sports-related traumas , but no disaggregated statistics by cause of injury are available. The spinally injured persons I met in Ukraine and Russia commonly refer to their injuries as events of “breaking” (zlamatysia). In recounting their experiences or arranging a personal life timeline for instance, one might say, “I was broken (zlamavsia) in 1997,” and they might divide their life into before and after becoming broken. Diving accidents like Sasha’s often involve injury to one or more of the cervical vertebrae, the seven vertebrae at the top of the spinal column. When an injury to the spinal cord occurs, information flow to the rest of the body from the point of injury down is interrupted. Depending on whether the injury is complete or incomplete, the person will experience either a total (complete) or partial (incomplete) loss of function and sensation below the affected vertebrae. (A complete injury does not necessarily mean the spinal cord has been severed.) When the injury occurs in the cervical region, legs, arms, respiratory function, and all other organ systems may be affected. When a person experiences a spinal cord injury, his or her chances for survival, the eventual extent of injury, and prospects for restoring function can hinge upon the skill and speed with which immediate medical a parallel world 15 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...