'This is preventable': Polio survivors share insight on importance of vaccines in new UTM research

Wearing masks, avoiding large gatherings, shutting down schools – those scenes might sound familiar to anyone who experienced the most recent global pandemic. 

But this isn’t a discussion about COVID-19 – this is polio. 

Madeleine Mant, an assistant anthropology professor at the University of Toronto Mississauga, was studying student responses to the 2020 COVID-19 lockdowns and noticed similarities between experiences of the two infectious diseases. 

“It really started to twig memories of what I had read about polio and post-polio, and I just really began to see that these parallels were starting to emerge,” said Mant, who specializes in trauma and infectious diseases.

Mant decided to dig deeper and set about gathering polio survivors' perspectives on vaccine hesitancy and on living in an outbreak, all with the hope of informing COVID-19 recovery efforts. 

While participants shared a multitude of memories of their illness – which can cause paralysis – a key finding was frustration that once-eradicated diseases are now returning to Canada, partly due to modern vaccine hesitancy.

Survivors were unanimously anxious to share a key message: get your vaccines, especially those recommended for childhood.

“That was where folks got angry, telling me ‘we've been yelling and yelling and yelling for years about this,’” said Mant. “(They said) ‘I use my own story, my own body, to say see what happened to me? This is preventable.’”

In December 2019, even prior to the official outbreak of COVID-19, the World Health Organization named vaccine hesitancy as a top global health threat. 

The impact of vaccine hesitancy has recently been thrust under the spotlight once more, with the WHO revoking Canada’s designation as a measles-free country in November, in part over vaccine hesitancy. 

The majority of the polio survivors Mant spoke to contracted the disease before a vaccine for it was available. Others were living at the time in locations outside Canada where vaccines weren't available or uptake was slower. 

Those Mant spoke to highlighted how easy it can be to forget the devastating effects of diseases that are now preventable due to vaccines. 

“Our young people today have no memory of what it was like when we were children, where you had measles and mumps and chickenpox and diphtheria and all those things,” said one participant. “They've never experienced it, so they don't know that it's the vaccines that wipe that out.”

Vaccination against polio, as well as measles, mumps and many other diseases, is part of Canada’s routine childhood immunization schedule. 

Mant said while polio is often thought of as something that happened in the past, there’s much that can be learned from those still dealing with the disease. 

“This wasn't the past informing the present, it was the present informing the present,” she said of her research.

Canada was certified polio-free in 1994 but Post-Polio Canada, a support program, estimates there are still approximately 31,000 Canadian polio survivors. The disease remains in a patient’s digestive tract for up for 40 years. A re-triggering of the virus can result in post-polio syndrome.

Mant interviewed 65 people who contracted polio and post-polio syndrome between 1941 and 1977.

Participants shared memories of iron lungs, crutches, leg-straightening surgeries, body casts and long isolations in hospitals, away from family. 

Some recalled being out of school for more than a year and doing courses by mail, without really understanding why.  

“Many told stories of their parents performing excruciating physiotherapy exercises on them, which would end with both sides crying,” said Mant, whose study was supported by U of T’s Connaught New Researcher Award. 

“It has really been some of the most intimate, emotional, exciting, overwhelming type of medical anthropological work I've ever engaged in.”

Many shared another vivid memory: the arrival of Dr. Jonas Salk’s polio vaccine in April 1955, which was later refined into an oral vaccine by Albert Sabin in 1962. 

One survivor told Mant that even though the vaccine came too late for those already dealing with the disease, they were thrilled there was now a way to prevent polio. 

“It was a great big joy and I was glad that people were gonna be safe from it,” the survivor said.

Participants, as well as Mant, also said vaccines have become a victim of their own success.

“Vaccines work so well, society has forgotten how devastating so many of these childhood illnesses are,” she said. Mant also noted reluctance did not begin with COVID-19 vaccines.

“Vaccine hesitancy is as old as vaccines,” she said. “Edward Jenner noticed that those who had had cowpox didn’t get smallpox and developed a vaccine in the late 18th century. As soon as that emerges, there are folks saying, ‘What do you mean you're using pus from a cow? That's unnatural.’”   

Even within her own study, while there was universal support for childhood vaccines, five participants said they had been hesitant to get the initial COVID-19 vaccine due to concerns about how quickly it was developed.

“This is why it is so important for public health to be transparent and clear with showing the steps of vaccine testing,” Mant said.

Mant intends to publish her research as open access, so people can download it without cost, to help share the findings widely. 

There is an urgency in collecting the experiences of post-polio patients and learning from them, she said.

“There is oral history that is going to be lost if we're not talking about it,” she said. 

“These people are willing to share … They want to stop people from going through what they had to go through, and we have a responsibility to listen.”