Stigma: The Power and Challenge of Words and Images

Close to 500 science writers gathered at Penn State this weekend for a mix of professional development, scientific briefings, and networking. Within this group, two talented professionals from NIH, Judith Lavelle and Hillary Hoffman, deal with highly stigmatized health conditions every day – HIV, infectious diseases, and immune disorders. But they wanted to do more than just commiserate about stigma. So they organized a remarkable panel to generate ideas for ways that words and images can help science overcome stigma.

It’s a tough challenge, but in the end, words and images matter. Small word choices make a big difference. And images can have an overwhelming effect – for better or for worse. Two touchstones loom large in all of this: respect for people and objective facts.

Key lesson from #StigmaFreeSciWri panel at #SciWri19 : ask people about how they want to be identified pic.twitter.com/RUKFe0W7EA

— Deboki C, PhD (@okidoki_boki) October 26, 2019

Less than Human

Rachel Smith explained that four elements set the stage for a stigmatized group. First is the mark. It’s something recognizable about the group that evokes disgust. Then comes labeling. By calling someone obese, for example, words set them apart. Defines them by their condition, the other, less than human. Next are presumptions about etiology. How did they do this to themselves? In the case of obesity, the false presumption is sloth and gluttony. Deadly sins that provide an excuse for blame and anger.

Finally, peril completes the picture. “The obese” are a great threat because of the burden to society. Health costs, lost productivity, a shorter lifespan for the next generation. We must prevent this! She explains this all brilliantly in a 2007 Communication Theory paper.

Identity and Disability

Wendy Lu writes and speaks around the world on disabilities, bringing a personal perspective to this complex subject. She made it crystal clear that it’s a huge mistake to assume someone with a chronic condition needs to be fixed. Sometimes that condition is an essential part of a person’s identity.

Assuming that a medical model applies to a person with a disability or a chronic condition means you will inevitably disrespect people. Preferences differ between people, so listen and ask when in doubt.

The golden rule is treat people as you want to be treated. But the platinum rule trumps it: treat people as they wish to be treated. That means you have to take time to listen, respect, and understand. Some people claim fat as an identity. Others seek care for obesity.

Gender Identity

Gaius Augustus is a cancer biologist, skilled science communicator, and an advocate for a more inclusive approach to gender identities. He explained that you simply can’t make assumptions about gender identity. Things are changing fast and the smartest, most respectful thing to do is ask. Pronouns matter so we must listen and ask. And there’s not always a singular answer, so if you like to learn, you can do a lot of that with gender identities.

In the trans community though, one thing is clear. Transgender is OK, transgendered is not. Drop that second word from your vocabulary. It’s a lot like the word obese. Inherently stigmatizing.

Ted Kyle at SciWri19, photo by Jennifer Cutraro

Humanizing Images, Factual Reporting

ConscienHealth’s Ted Kyle summarized problems and opportunities with stigma and bias in reporting on obesity. All the elements of Smith’s model for a stigmatized group are present. Misinformation about the nature of obesity has created deep bias. Factual reporting about the biology of obesity and humanizing images can overcome it. Words and images matter.

It’s a long slog to reverse bias and stigma. But it’s essential because stigma has become one of the biggest obstacles to better public health.

Click here for Kyle’s slides, and download all four presentations here.

Hillary Hoffman and Judith Lavelle, photograph courtesy of Hillary Hoffman / Twitter

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October 27, 2019