At the annual conference of the National Association of Science Writers (NASW), journalists organized a panel titled “Other Stories: Exploring Alternative Narratives” exploring the value of telling stories from the perspectives of patients, their families, and others who do not have access to the social circles where mainstream science narratives are made. The panelists included National Geographic contributor Maryn McKenna (KSJ ’14), Harvard professor Sheila Jasanoff, and documentarian/Columbia professor June Cross. Journalist Maggie Koerth-Baker moderated. As McKenna noted, “The diversity of this panel– four women, two white, one black, one south Asian –is a revolutionary act in and of itself.”
That point was emphasized when Cross told the story of her upcoming documentary film Wilhelmina’s War (screenshot above), which follows a black family in rural South Carolina as they live with AIDS. Cross embarked on the project after hearing a surprising CDC statistic– namely that AIDS is the most common cause of death for black women of child-bearing age in the United states. The film’s Wilhelmina Dixon, a grandmother whose daughter and grandchildren have HIV/AIDS, as she attempts to navigate healthcare bureaucracy and advocate for her family.
Wilhelmina didn’t know fancy science words like “remission”, Cross said, but Wilhelmina did have stories explaining why some days with HIV/AIDS are better than others. “She’s dealing in a world of community and family,” Cross said, which means Wilhelmina experiences HIV/AIDS very differently from the way wealthy doctors experience it. When she navigates healthcare bureaucracies, she has to engage with a lawyerly culture that often assumes people have a college-level vocabulary. Many of the people who use healthcare systems are more like Wilhelmina than they are like the doctors, lawyers, and politicians who build these systems, Crossed noted. And yet, far too often, journalists focus on these well educated sources instead of patients such as Wilhelmina.
Even in stories from the patient perspective, like Seth Mnookin’s acclaimed New Yorker story “One of a Kind”, which focuses on a parent network grappling with the medical establishment, the patients and family advocates are typically white and wealthy. McKenna argued that science reporters can change that by “ground truthing” or seeking out the people who experience disease and seeing if their stories mesh with the narrative doctors and scientists are putting forward. For example, in her work on a group of lethal antibiotics-resistant bacteria called CREs, she found that the people who were in the best position to stop CREs’ spread were the underpaid janitors who scrub hospitals’ countertops and floors.
Koerth-Baker added that when she began researching rehabilitation programs for sex offenders, she found that most people were okay with completely excluding sex offenders from their communities. But, in fact, sex offenders are more likely to offend again when they’re excluded; community inclusion actually helps them recover. Many people don’t even want to consider that uncomfortable perspective, even if it both helps sex offenders and protects the community. Good reporting and analysis, she pointed out, requires inclusivity.
Jasanoff gave a brief overview of her field– Science, Technology, and Society studies or STS — and pointed out that the sociologists and ethicists who study scientists are a resource that journalists rarely tap into. Understanding how the scientific community builds consensus about which facts are most “true” and most “relevant” requires a lot of knowledge about social context, especially when you’re comparing and contrasting scientific practice from across national and cultural borders.
The journalists agreed that tackling scientific and technological issues from multiple social perspectives is both time-consuming and tricky. Audience members raised questions about how to reach the people whose perspectives are rarely heard in science magazines. Cross emphasized that when you’re covering a story, it’s important to think through who all of the stakeholders (i.e. all the people who might be affected) are and look for them. Searching social media with keywords plus the word “me” or “I” is a good way to find people willing to talk about their firsthand experiences. Internet forums and oral histories can also be great places to look for sources. But even with shorter news pieces, something as simple as including grad students’ and post-docs’ perspectives can help reflect the diversity within science. McKenna also pointed out that many times, good old-fashioned “shoe-leather” reporting, where you go and walk around, talking to everyone you can find is the best way to go. “Tuck your prejudices away in your notebook,” said McKenna. “You might find something interesting and get what you need.”
Some members of the audience were concerned about the line between journalism and advocacy; to many people, even the act of presenting a rarely-heard perspective is an act of advocacy. Jasanoff said in her work, she tries not to advocate for anything except for, perhaps, “better institutional behavior” and questioning traditional power hierarchies. The journalists on the panel agreed; it’s best to try not to cross the line into advocacy. “I don’t think of myself as an advocate for anything except for truth and complexity.”
Audience members also wanted to know more about how to balance presenting diverse perspectives with the pressure to present definitive news and advice. The panelists agreed that people want to be told want to do and what to think, which is often frustrating for non-fiction storytellers. But Koerth-Baker concluded, the best thing to do is to lay out the facts and perspectives as best you can and let people decide what to think.