Words hurt: The deadly language of disease
"How
we think about the AIDS epidemic becomes its own reality," Alex de Waal,
a researcher at the World Peace Foundation, wrote in 2006. He said that
often it's the toxic cocktail of stigma, fear, misperception and
metaphor - from the militaristic to the moralistic - that is to blame
for the deaths of millions of people from treatable diseases each year.
Ideas about disease, language and perception appeared throughout the
Royal Society of Medicine's Global Health Film Festival in London,
United Kingdom, last week.
Deadly
Films on polio in Pakistan, TB in Swaziland and HIV in Malawi made
important points about the relationship between language, rumour and
disease, and how changing the way we perceive and talk about diseases
can make them less deadly.
'Every Last Child' is a big-budget, slickly shot documentary on polio
in Pakistan, funded by the Bill & Melinda Gates Foundation. It is a
compelling exposé of the high-stakes nature of Pakistani vaccination
campaigns. Once on the verge of eradication, polio has been on the rise
in Pakistan, assisted by anti-vaccination propaganda, the Taliban's 2012
vaccination ban in their strongholds and their brutal attacks on health
workers.
The film shows some of the public perceptions about vaccination
campaigns among people in Peshawar and Karachi. "It's a kind of poison -
I fear if I vaccinate them I won't become a grandpa," one father said.
This Taliban-concocted conspiracy theory that polio immunisation is a
cover for US-sponsored sterility campaigns is widespread.
With families increasingly refusing to allow their children to be
vaccinated, the Peshawar vaccination teams removed all mention of the
words WHO and polio from the campaign, renamed it Justice for Health and
persuaded former cricketer Imran Khan, the chairman of Pakistan's PTI
party, to publicly back the campaign.
The rate of infections is now falling, the documentary says.
TB is another disease where eradication efforts are hampered by
public perception issues. 'TB Unmasked and TB Silent Killer explored'
the human impact of a disease that is rarely in the media spotlight,
despite the fact it is airborne, infects one-third of humans at some
point during their lives and kills roughly 1.5 million each year, twice
as many people as malaria.
So why isn't there more action from donors? The films showed that
compared with HIV and Ebola, humans have known about, lived with and
died from TB for centuries-donor fatigue seems to be part of the
problem. And unlike the fast-acting, visually horrific Ebola, TB can
take years to kill its victims, who often die in isolation from their
families and far away from any media spotlight.
Perception
Later I attended a workshop run by filmmaker Tom Gibb, whose
low-budget films use participatory filmmaking to improve public health
knowledge and challenge perceptions of disease in hospitals and villages
across Sub-Saharan Africa.
Gibb said he thought efforts to prevent HIV infection and treatment
were being held back by the gap between public perception and the
reality of the virus today. "The nature of HIV has changed since
antiretroviral therapy," he said. It's no longer a "killer disease where
the message was one of real fear", but a virus that, with careful
management and treatment, you live with.
But many people still associate HIV with death - a situation
exacerbated by moral outrage, religious condemnation and social stigma
around sexually transmitted diseases. "People at the village level are
more frightened about becoming a laughing stock than they are of getting
sick from HIV," Gibb told me
- SciDevNet
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