Session Information
Session 6, Visualising disability
Papers
Time:
2004-09-23
17:00-18:30
Room:
Chair:
Ian Grosvenor
Discussant:
Ian Grosvenor
Contribution
This presentation describes the plight of polio sufferers and their families between 1916 and 1956 by analyzing the litany of public responses and how children and their parents accommodated themselves to their new and painful lives. This discussion utilizes visualization in its broadest sense. It reconstructs the lives of children afflicted with polio through oral histories, autobiographies, biographies, and photographs, specifically focusing on their painful diagnosis procedures and treatments, the disruption of their family lives, and finally their experiences in schools in an era when accommodations did not represent the norm. Polio struck the United States in 1916 with devastating results. Twenty-six states reported some 27,000 cases, claiming 6,000 deaths. The morbidity rate continued to increase for the next four decades. Society's frantic response to polio seemed irrational at first. Polio in some ways paled when compared with other contemporary epidemics. Earlier cholera and yellow fever outbreaks claimed higher morbidity and mortality rates while the death toll from the 1918 influenza pandemic easily outstripped polio. Nevertheless, while its quantitative impact paled in comparison to other diseases and epidemics, polio permanently changed the lives of millions of people in a qualitative sense. It evoked deep emotions and constructed an enduring reality. Polio's effects proved to be far less ephemeral than other diseases: it usually attacked children, intensifying sympathy towards these helpless and innocent victims; they often remained paralyzed throughout their lives, requiring constant, long- term care and treatment, as well as demanding and expensive assistance from their care givers. All aspects of their lives changed. Victims and their families lived another experience. In extreme cases of paralysis, two distinct scenarios generally unfolded. In most of these situations, children experienced partial recovery of muscle use and strength, salvaging some of their physical mobility. In the remainder of cases, severe nerve damage or destruction occurred leaving the victim permanently paralyzed. Whatever the outcome, misery became a constant companion: the anxiety created by the onset of initial symptoms, the diagnosis process that usually involved an agonizing spinal tap as well as muscle tests, and the relentless and taxing treatment regimen. Pain, both physical and emotional, became a permanent companion of polio victims.
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