Living With Polio
Don’t Tell Anyone About Your Polio
“Promoting Positive Solutions,” Post-Polio Health, Volume 28, Number 3, Dr. Stephanie T. Machell
Question: I found out I had polio when I was 55 years old. My mother’s explanation was that “the doctor told me not to tell anyone.” Can you help me understand why this was told to parents?
Answer: Your experience is not an unusual one. I’ve had many clients who didn’t remember having had polio and were never told that they did. While there can be many reasons for this, what your mother was told by the doctor points to one of them: the stigma attached to polio and those affected by it.
At that time, polio was viewed much as HIV/AIDS is now. Polio survivors and their families were often shunned, even after the risk of contagion was past. Polio was considered to be highly and indiscriminately contagious (think closed swimming pools and movie theatres), and the polio survivor and his or her family were often viewed as dangerous.
I have heard stories of homes being burned by neighbors and of doctors and dentists whose practices closed because patients were afraid of being infected by a parent who might be carrying the disease. These beliefs persist in many who lived through the epidemics. For example, a few years ago I was told by a well-educated person that it was a miracle that my brother and I didn’t catch our father’s polio. (The person making this statement knew that I was born two years afterwards. My brother was born six years later!)
Apart from fear of contagion, there was fear of disability itself. In the mid-20th century, and even now, many people subscribed to the moral model of disability, in which the person who has the disability (and by extension his or her family) must have done something to deserve this fate. The polio survivor would be viewed as morally flawed or bad, and the possibility that such badness could be as contagious as polio itself makes others reluctant to associate with “carriers.”
It is also possible that the doctor was trying to be helpful. If you recovered well enough that you had no need to be aware that you had had polio, you were most likely able to “pass” as non-disabled. Your lack of knowledge that you were a polio survivor would have helped you to pass.
Because children with disabilities often were excluded from schools and other opportunities, this might have been seen as positive. And because it was widely believed that children would suffer no ill effects and might actually benefit emotionally by not being told about their polio experiences, parents were often advised not to discuss polio with their children, even those old enough to remember what had happened.
Your parents’ own shame and guilt over what happened to you may also have factored into their willingness to go along with what the doctor advised. Because of the way polio was viewed, parents often had these feelings when their children were afflicted. They may have felt responsible for your polio because of something they allowed you to do, or for something they failed to do (like not vaccinating you soon enough if the vaccine was available). The doctor’s message would have reinforced their shame and guilt, further reinforcing the secrecy around what happened.
Dr. Stephanie T. Machell is a psychologist in independent practice in the Greater Boston area and consultant to the International Rehabilitation Center for Polio, Spaulding-Framingham Outpatient Center, Framingham, Massachusetts. Her father was a polio survivor.