Science, not Stigma: Navigating empowering language

By Vanessa Vieites

The words and images we use to tell stories about the health of individuals and the groups to which they belong have the power to stigmatize or elevate them. The difference between stigmatizing and non-stigmatizing language, however, is not always clear. "Science, not stigma: Navigating empowering language" was organized by Hillary Hoffman and Judith Lavelle, who write and edit for the National Institute of Allergy and Infectious Diseases. The session’s four panelists offered case studies and examples of how we can use empowering rather than stigmatizing words and images in science communication, drawing from their diverse lines of work.

The first presenter, Rachel Smith, a quantitative communications scientist and professor at Penn State, offered her insights into research on how media messages can create or combat stigma. Smith stressed that stigma goes beyond describing group differences; rather, it labels members of a group as fundamentally discredited, devalued, disgraced, and dehumanized.

According to Smith’s research on stigmatized health conditions, there are four types of messages that lead to a group’s stigmatization: marking members of the group with a negative attribute, conflating them with their illness, blaming them for how they acquired the illness, and connecting them to social, moral and physical peril. Together, these four kinds of messages elicit strong cognitive and emotional reactions from those exposed to them, increasing the likelihood for stigmatizing attitudes and behaviors.

Smith suggested positive alternatives to discussing health threats and concerns so that we can prevent stigmatization. These include using language that does not “other” those with the disease, personifying and attacking the non-human agent (for example, bacteria) rather than the people affected by it, and expressing optimism and hope rather than fear and despair.

The second presenter, Wendy Lu, a freelance reporter and global speaker on disability in the media, discussed ways to shift the disability narrative and break disability stigma in storytelling. Lu highlighted two different aspects of disability stigma in storytelling: language and framing attitudes. Person-first language places the person before the disability (e.g., “people with autism”). Identity-first language places the person’s disability at the forefront of who they are (e.g., autistic people). Lu suggested that, when reporting on disability issues, it is best to ask the subject of the story how they prefer to be identified. The second aspect of disability stigma involves shifting attitudes and mindsets. Lu presented two models that have helped frame the way society views disability: The Medical Model and the Social Model. The Medical Model assumes that disabled individuals, being inherently broken and limited by their disability, must be cured to function “normally” within society. The Social Model, on the other hand, assumes that disabled individuals are not broken or in need of fixing but that society must instead be fully accessible and barrier-free for all. To empower individuals with disabilities rather than stigmatize them, Lu suggested we use neutral language (e.g., “person uses a wheelchair”) that does not assume a negative relationship between the person and their disability and that we avoid referring to non-disabled individuals as “regular” or “normal.”

The next presenter, Gaius Augustus, a freelance multi-media science communicator, shared his experiences as a transgender, non-binary person to advocate for more inclusive science communication. Augustus discussed current best practices on how to communicate from an intersectional perspective. When interviewing others, Augustus said best practices are to ask, listen, and learn. Rather than assuming someone’s gender or whether they are “out,” the appropriate practice is to ask them their preferred name and pronoun and whether they approve of their gender identity or sexuality being exposed to the public. Second, when in doubt, listen at the community level for best practices on how to refer to others, but recognize that individuals may not always agree with their communities’ standards. And, finally, understand that ideas evolve and change over time, and try to improve public outreach accordingly. Augustus recommended the website Transequality.org for more information.

The final presenter, Ted Kyle, founder of ConscienHealth and member of the board of directors of Obesity Action Coalition, talked about reducing weight bias and obesity stigma through the thoughtful use of words and images. Kyle spoke of two types of biases. The first is an intellectual bias, which refers to a lack of understanding in obesity and its causes. The second is bias directed at individuals with obesity, which creates an internalized, stigmatized identity that leads to poor health outcomes. He continued, saying that negative stereotypes about people with obesity (e.g., that they are lazy, uneducated, and uniformly unhealthy) persist and are shared by healthcare professionals and non-healthcare professionals alike. Kyle then discredited the common narrative that obesity is the result of people’s poor nutritional habits, explaining that “genes set the table for obesity, environment serves it up.”

Kyle ended by suggesting ways science communicators can improve their reporting on obesity. For one, avoid using photos of headless/faceless body parts along with stories about obesity as they imply shame in being obese. Secondly, avoid using headlines that link eating certain foods (e.g., fries, burgers) with obesity as that is not necessarily the case. Thirdly, avoid writing miracle weight loss stories about celebrities as they are false and do the public a disservice. Lastly, avoid talking about obesity as if it were an identity (e.g., saying people are obese) or a behavior that people choose to engage in. Kyle’s take-home message was that there are unproblematic ways to report on obesity, including humanizing the subjects of those stories and depicting them as productive members of society.

In sum, using stigmatizing language in the media can impede public health efforts, perpetuate ignorance and bias, and contribute to misleading or inaccurate news coverage. Thus, as the panelists demonstrated, when covering health science stories, science communicators must use language that is both scientifically accurate and respectful to the individuals at the center of those stories.

A list of resources from this panel is available here

Vanessa Vieites is a Ph.D. candidate in Psychology at Florida International University and a recipient of a 2019 NASW Graduate Travel Fellowship. Follow her on Twitter @vvieites001.

Nov. 12, 2019

2019 Awards for Excellence in Health Care Journalism