PhD researcher Charlotte Stobart has published new research into the history of polio disability. She uncovered how the British Polio Fellowship gave a voice to polio-disabled individuals.
Polio is a viral disease which targets nerves, often leading to paralysis in the limbs and diaphragm muscles. It garnered more attention in the medical community in the 20th century following outbreaks in the USA in 1916 and the UK in 1947. These outbreaks led to the development of a vaccine by Jonas Salk in 1955 and Albert Sabin in 1962. Polio cases decreased in the UK afterwards, with the last wild case being in 1984.
Like many other infectious diseases, polio was often viewed through a public health lens, with little recognition of its long-term disabling impacts. The establishment of the British Polio Fellowship in 1939 was partly in response to this. Its aim was to provide mutual peer support and personal development for polio-disabled individuals. Stobart's study, published in Social History of Medicine, focuses on the Fellowship's internal newsletter The Bulletin, launched in 1939. She focuses on the issues from 1963 to 1973.
Stories of recovery
The Bulletin published accounts of people who were physically disabled as a result of polio, often focusing on how they adjusted to their disabilities. One example was Janey Healey, a 16-year-old typist who lost control of her arms but learned to "type with her toes".
Accounts such as this showed that these polio-disabled individuals had a strong sense of individual identity. This contrasted with common depictions of them as victims, allowing them to have representational and narrative agency.
"It was often along the lines of 'we are tenacious, we are determined, because we were disabled from polio,'" Stobart explains. "It's a very interesting way of framing an acquired disability because this sort of positive identity tends to form around congenital disabilities. The Deaf community is an example of that. When it's acquired, it's much, much rarer."
The Bulletin also went against the medicalisation of polio. Instead, its stories emphasised the Social Model of disability, an approach that is now common.
"It's not someone's body that's the issue," she explains. "It's the thing that is disabling, like having no ramp for the wheelchair or the lack of braille for a blind person. It's society that's imposing barriers. Ideas like that were starting to emerge in the early 60s through The Bulletin, whereas they weren't formalized by the disabled rights movement until the 70s and 80s."
The people included in The Bulletin also represented a wider cross-section of society than many other acquired disabilities of the time. Accounts of people disabled in war or industrial accidents often focused on older men. Polio disability was more widespread among the UK population. As a result, more of the accounts came from women and from a wider variety of ages.
The need for more narratives
Nonetheless, the British Polio Fellowship's depiction of disability had shortcomings in other areas. Stobart highlights a common trend within The Bulletin of celebrating incredible achievements.
"It produced some hyper-idealized stories of overcoming, like someone who walked 184,000 miles on crutches," she explains. "Those stories were amazing, but not everyone would be able to achieve those."
Similarly, while The Bulletin provided more voices for women, it was not as representative of other demographics.
"There was conspicuous overlooking of working class and ethnic minority experiences," says Stobart. "Even with its amazing photographic culture, there's barely anyone who appears to be non-white in the pictures. This is despite being at a time with much more immigration to Britain, from countries that would have had significant polio epidemics themselves."
In recent years, there has been more representation of minority individuals with polio disabilities. This is partly due to later polio epidemics in the Global South, including after its eradication in Europe. As such, more accounts have come from Global South countries.
The future of polio research
Stobart's research expanded the literature around polio disability, by exploring polio experiences in the UK and highlighting individuals' everyday struggles. The existing literature was heavily US-centric, mainly focusing on 'Great Man' stories such as Franklin D. Roosevelt and Jonas Salk. She is hopeful that her contributions will encourage more research around polio history in the UK. This will hopefully be easier since the back issues of The Bulletin were digitised by the British Polio Fellowship.
Currently, she is pursuing further research into polio for her PhD, exploring the relational history of polio disabilities in Britain and Kenya, up to the modern day. Polio has now been eradicated everywhere except Pakistan and Afghanistan, but there are lessons for how we approach other diseases and disabilities.
Stobart's research could inform how our wider approaches to disease and disability. It would be especially relevant to understanding the ongoing impact of Covid-19. This pandemic revealed the vulnerability of our globalised world to infectious diseases, and society is still struggling with Covid's long-term effects. As such, the transnational exchange of knowledge, technologies and practices is equally important.
"There's a lot of focus around who decides when pandemics end," she explains. "But what does an ending look like? The point I'm trying to make here is that for a lot of people, it doesn't end. Diseases have an explicit long-term impact, and it's important to continue engaging with them."