It’s the summer of 1952. You’re 7 years old. Your mother has spent weeks drilling into your head the importance of staying out of swimming pools and creeks, avoiding water fountains, and washing your hands. Before you leave the house every morning to play outside, she asks you to touch your chin to your chest. Her eyes follow your movement, wide and glistening with fear. You hold your breath and push your chin down despite the pain and stiffness in your neck. You know that if you can’t perform this daily feat of health and fitness that she will know you have failed, somehow, to follow her directions.
You are sick and you know from hearing the adults whisper and move around you that getting sick means you will be sent away, though you aren’t sure where. You saw it happen to Sandy down the street just a few weeks ago. Her father carried her, wrapped in a blanket, and placed her in an ambulance that whisked her away. Away from her father, who stood at the end of the driveway. Away from her house, where she kept her books carefully arranged on her desk. Away from her neighborhood, her friends, her life.
Your determination to push your chin down does not fool your mother. She senses that you are not well and calls for the doctor. In hushed tones at your bedroom door you catch the harsh sound of the “p” and your heart races with fear. They are taking you to the hospital. Once you get there, it is all a blur of panic, fear, and tears. You watch the doors swing shut, your mother’s tear-stained face barely visible through the diminishing crack. You will not see her again for days, or even weeks. When you do, it is from within the terrifying chamber of an iron lung. The nurses sometimes ignore your pleas to be turned, scratched, cleaned, adjusted. The smell of hot wet wool fills the air, alongside the cries of pain when kids are scalded by these “treatments.” When you cry too much, one of the night nurses threatens to turn off your iron lung. When you fail to comply, you hear the switch flip and that is all you remember as you pass out.
During your weeks in the iron lung, you learn that you do not have agency, nor do you deserve it. If you are lucky and sweet and play by the rules, the nurses will be kinder, softer, gentler. You learn that you are different now. A burden. A baby who will never grow up. When you go home for your first visit, no one knows what to do with you. You sit quietly and watch, an outsider now. It is almost a relief when you go back to the rehabilitation hospital. There, you have made friends. Some of them, like you, are learning to walk with crutches and braces. Others are still trying to wean off the iron lung, they pass out a lot. You talk at night to the kid in the bed next to you. Sometimes, when one of you is crying, you push your bed next to theirs, and you hold hands. You take comfort in knowing that you are all in this together. There is the time before polio, and there is the time after. You are disabled. You are cut out of your family. There is no place for you out there.
I wrote this short reflection piece about the experience of polio after reading and discussing Daniel J. Wilson’s Living with Polio: The Epidemic and its Survivors (The University of Chicago Press, 2005) with my class. In it, Wilson draws upon oral history interviews and other archival evidence to tell the story of the mid-20th century polio epidemic from the perspective of those who experienced it first-hand. It is a deeply emotional narrative. In the first half of the book, Wilson focuses on the experience of living during an outbreak of polio, the fear and uncertainty that accompanied any somatic complaints, and the traumatic separation and isolation of children, most of whom were 10 or younger, from their homes and families. In reading these first-hand accounts, it is difficult not to identify the violent ways that ableism—the fear, bias, and hatred of disability—infuses these stories. During the mid-20th century, polio was so connected with disability that a polio diagnosis meant a disability diagnosis in most people’s minds. Most people who had only mild cases of polio would have avoided a polio diagnosis altogether, because a definitive diagnosis required a painful spinal tap in a hospital. Mild symptoms would have simply been quietly and anxiously watched, a doctor unlikely to be sought for anything but the most tell-tale symptoms of a serious case--one where the central nervous system was attacked yielding the pain, stiffness, weakness, and paralysis that could result in lifelong disability.
In the mid-20th century, there were few models for integrating disabled children into society. The model of institutionalization, however, loomed large. It is striking, looking back on this period now, from the 21st century, to note how the separation and isolation of children with severe polio was taken for granted despite the fact that, as Wilson notes, containing the spread of the contagion could have hardly been the reason. Since most people waited until the diagnosis of polio was unavoidable due to the severity of the symptoms, family members were more than likely to have already been exposed. Hospitals themselves offered little in the way of high-tech treatment (with the notable exception of the iron lung, but even that was relatively easy to set up in individual homes). So, the conclusion that I am left to make as I reflect on story after traumatic story, is that the mere specter of disability required the removal of the child from their regular life. They were different now, othered—disabled. Their potential diminished. Their part in the American Dream, negated. During their treatment and rehabilitation in special wings and hospitals built for polio patients, survivors learned the “right” way to inhabit their new roles. Compliant, happy, apologetic for the burden they caused.
Sitting with these stories from almost a century ago, now, in the midst of our own scourge---COVID—I am left to wonder about all the ways ableism is traumatizing a new generation. At a time when medicine is only just now beginning to slowly (and not without failure) recognize its role in racism, what will it take for healthcare to begin to recognize and grapple with the harmful effects of ableism? (Jessica Martucci, PhD, MBE)
Daniel J. Wilson, Living With Polio: The Epidemic and Its Survivors (The University of Chicago Press, 2005).