Gather ‘round, kids.
Once upon a time, when I arrived for psychology grad school on the west coast, I started a dance class for fat women. “We Dance” was emphatically not a weight loss environment, but rather a place where a lively bunch of folks partied with me every week. We were such a curiosity at the time that we were brought on talk shows and interviewed for the papers.
As I learned more in school, I landed a job at an inpatient hospital treating eating disorders. The diagnosis of bulimia nervosa had only recently been added to the DSM 3 years earlier, and binge eating disorder would not be an official diagnosis for another 28 years.
I have a memory of crossing the San Francisco Bay Bridge one day, driving into work after teaching my dance class earlier in the day, and feeling the transition in my body from the joyful play of the class to preparing for my work at the hospital, where people were trying to recover from deadly fear, dread, and self-loathing. The contrast was stunning. I thought about how few representations any of us had of fat people being happy, and of thin people being so ill and sad. How many struggling thin people get to see fat people being respected, loved, admired? How many fat people who believe they should “do whatever it takes” to make themselves smaller get to see the suffering and wasted time of people who are supposed to be “successful” at weight loss, many of whom are deathly ill? Why don’t we see that we are battling the same enemy?
That enemy is the ranking of bodies – and with that, a ranking of worth. Weight is not the only body feature that is used to rank people’s worth, and the way weight is stigmatized can shift when people face other oppressions.
The history of medicine is littered with examples where the bodies which are socially considered less worthy are seen as “diseased.” Over the course of my lifetime, identifying as gay has gone from being a disease with associated “cures”—like lobotomies and castration—to being a normal sexual identity; recognizing this and the hazards of trying to change sexual identity, in some states “reparative therapy” is outlawed as criminal conduct.
Science is not immune to bias, and especially in cases where bodies are stigmatized, history teaches us to be especially careful to think critically about how medicine has been used as a practice for making all bodies look alike rather than supporting health.
Back on that afternoon in the mid-80’s, I could only realize, “I work with the healthiest fat people and the sickest thin people.” And since then, I have wondered if that privilege of seeing that weight and health are not so tightly linked, and how pulling back to be able to view the bigger picture, is what focused me on the social justice aspects of eating disorder prevention, treatment, and activism.
The clinicians, researchers, colleagues, and activists who formed my community back in the 1980’s were not the only people building on the important earlier work of the activists who came before us (which would take much longer than a single blog post to honor). In many locations of the world, people were independently struggling to deal with the limitations of a one-size-fits-all model of health. The work on what would become the Health at Every Size model, the body positive movement, the modern fat liberation movement, the science of eating disorder prevention, and the growing study of weight stigma and its centrality to the phenomenon of eating disorders is well-established and decades-old, even though many people are only hearing about it recently.
The Health at Every Size special interest group within the Academy for Eating Disorders was proposed by Ellen Shuman beginning in 2002. Now named the Weight Stigma and Social Justice SIG, the group continues to ask how our community can reach a much wider range of people in the creation of the science of eating disorders and its treatments. The foundational work of Chevese Turner and her community in building the Binge Eating Disorder Association (now represented within the National Eating Disorder Association), and the official recognition of Binge Eating Disorder in the 2013 DSM-V, ushered in the now-obvious recognition that higher weight people struggle with eating disorders—and eating disorders of all flavors. This has fundamentally changed the image of “eating disorders” to a much more diverse representation, in contrast to the former image of thin, white girls and young women struggling with restriction or purging. But the inclusion of higher weight people has also challenged our eating disorder community to face its own weight stigma and even question our diagnostic boundaries:
- “Are the features of AN in a person with a high baseline (or current) weight a different disease from those features in a person with a lower baseline weight?”
- “If we believe that weight restoration is essential for thin people with AN, do we believe that it is also essential for formerly (or currently) fat people with AN?”
- “Is restriction an overlooked aspect of BED?”
- “Are humans meant to be one size or are bodies regulating even when they range across a wide diversity of weights?”
- “Are we prescribing for higher weight people what we are diagnosing as eating disordered in thinner people?”
We make progress not just when our communities are fully represented at the table, but when we are fully represented at the building of the table—and the chairs. As we make exciting discoveries about genetic vulnerabilities and associations with eating disorders, we also need to understand whether those genes are causes of disease, or causes of the body features that get stigmatized, which then causes disease; or neither, or both. How will we solve that riddle without involving everyone?
Most people with eating disorders have never shown up in our research, and most people with eating disorders can’t access treatment. We are only beginning to see more resources devoted to understanding the experiences of more genders, connecting people through organizations such as the National Association for Males with Eating Disorders, and Trans Folx Fighting Eating Disorders. Our treatments are inherently limited; our mostly white eating disorder organizations are like the person searching for their watch under the streetlamp because that is where the light is best.
Further away from the streetlight, there are new tables being built by people who have the lived experience of stigma, where marginalized bodies are centered, like The Body is Not an Apology, Nalgona Positivity Pride, and the Body Sovereignty Project. Important scholarship on these issues is also emerging, like Dr. Sabrina Strings’ Fearing the Black Body: The Racial Origins of Fat Phobia.
Imagine if it was safe to be fat. Femme. Black. Trans. Disabled. Immigrant. Sick. Indigenous. Old. Queer. Imagine if our spiritual ideas embraced the sacredness of our bodies and our planet, rather than elevating some of us—and some parts of us—as more precious than others. Without the ranking of bodies, where would eating disorder ideas take hold? What would they organize around? What if we were already safe?
Deb Burgard, PhD, FAED, is an eating disorders specialist and activist and one of the founders of the Health at Every Size model and the Body Positive movement. She builds communities where people can find each other and the resources to resist weight stigma, especially in medical and psychological treatment. Her activism includes working with healthcare providers to integrate an understanding of the social determinants of health and creating interventions that address structural oppression and support stigma resistance. She can be found at conferences sparking impromptu dance parties in the pool.