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Beyond Awareness

by Fall Ferguson, JD, MA

It’s National Eating Disorder Awareness Week (NEDAW) in the U.S. this week (February 23-March 1, 2014). When I learned that my regularly scheduled post would be this week, I immediately began to contemplate what “new angle” on the HAES approach and eating disorders (EDs) I should try to address. Fortunately, it didn’t take me too long to realize that I’m no expert on eating disorders and shouldn’t pretend to be one.

NEDAwarenessPoster_Web

My next stop was to look into the theme of this year’s NEDAW: “I had no idea.” Given my lack of expertise in this area, the theme seemed like a promising starting place for my post. One problem that immediately raised itself was how to write 1000 or so words about “no idea.” Another item that began to nudge its way into my thought process was the “Get in the know” tagline at the bottom of the NEDAW poster. Yes, it’s a good thing to invite people to become more aware, and yes, it’s a good thing to promote more knowledge about EDs. So why was this troubling me?

As I grappled with this dilemma this past weekend, I also faced a due date for the syllabus for an upcoming course on cultural competency in health education. Perhaps this whole blog post seems entirely predictable with the hindsight of the confluence of these two due dates, but as I worked on infusing my cultural competency curriculum with the idea of cultural humility, I started to get this idea that cultural humility was relevant to EDs, too. At first, I couldn’t quite figure out why.

Flexible and Humble

Cultural humility is an approach that views cultural competence as a process, rather than a state of being. According to a seminal article comparing cultural competence to cultural humility by Melanie Tervalon and Jann Murray-Garcia (1998), cultural humility includes a commitment to lifelong learning, including ongoing reflection and self-evaluation with regard to privilege, bias, and stigma. Health professionals with cultural humility remain “flexible and humble”—

“…flexible and humble enough to let go of the false sense of security that stereotyping brings. They are flexible and humble enough to assess anew the cultural dimensions of the experiences of each patient. And finally, they are flexible and humble enough to say that they do not know when they truly do not know and to search for and access resources that might enhance immeasurably the care of the patient as well as their future clinical practice.”

In addition, health care should be patient-focused to avoid having health professionals’ potentially biased agendas obscure the patient’s unique needs, which necessarily arise in a complex cultural context. Tervalon and Murray-Garcia also emphasize community-based care and community-informed advocacy as part of cultural humility. The authors take this idea far beyond merely providing care in community settings to asking health care providers to become “both effective students of and partners with the community.” I would add here that the health professional’s obligation to be an “effective student” does not create a corresponding obligation on the part of community members to “teach.” The health professional’s learning ideally takes the form of engagement rather than putting any obligations whatsoever on community members.

Finding the Connection

The chief purpose of the concepts of cultural competence and cultural humility is to guide health professionals in providing services and creating policies to help individuals and communities of different cultural backgrounds. Is it incongruous to bring up cultural humility in talking about what some might describe as a set of related diagnoses? At first, it seemed incongruous to me – why did I feel compelled to put these two ideas together? It was as if I was conflating awareness of a diagnosis and its consequences with multiculturalism and diversity concepts.

Fortunately, the connection turns out to be more than the timing of my two deadlines. It began to come clear as I contemplated the historical trajectory of “cultural competency” in the health professions. Many early discourses around cultural competency in the health professions highlighted cultural “awareness.” The idea was that if we became aware of the “facts” about a particular culture (their food choices, child-rearing practices, sexual mores, etc.) then we could provide them with competent health care services. Few today would suggest that this type of awareness is enough; indeed, in isolation from community engagement and patient-centered practices, this type of “awareness” can lead to stereotyping and the provision of brutally insensitive health care.

So when the NEDAW website suggests that we all “do just one thing” to raise awareness—such as distributing a brochure or tweeting a fact about eating disorders—it’s just not enough. The idea that one could “know” about eating disorders after reading a brochure or a few tweets… Well, I finally figured out why the “Get in the Know” tag line was bothering me.

EDs and Culture

I’ve repeatedly heard the expression that where EDs are concerned “genes load the gun and environment pulls the trigger.” I know that there is a vast literature that seeks to explain and understand the sociocultural aspects of EDs. But the connection between EDs and culture that I am drawing here—or trying to draw, at least—is something different, or perhaps more, than that.

Audre Lorde quote

EDs have historically been understood as a middle-class white woman’s problem. If that was ever the case, it isn’t now. EDs are profoundly cultured experiences, and it seems to me that one does not experience one’s eating disorder independently of one’s cultural identities, but rather in the context of, interwoven with, and because of these identities. At best, this makes any generalization about who suffers, and how they suffer, only partially true. At worst, the statistics and generalizations about eating disorders give rise to stereotypes and a harmful obscuring and minimizing of the textured experience of each sufferer. Ironically, mere “awareness”—even awareness about the harmful effects of the dominant culture—renders invisible the cultural wounding of those outside the dominant culture.

Janani Balasubramanian recently posted a compelling piece about NEDAW on the blog Black Girl Living Dangerously. BGLD prohibits extensive reposting, or I would be tempted to quote almost the whole thing here. I urge you to go read the post in its entirety. Balasubramanian’s account of being denied a “reflection” in society’s mirror clarified for me the depth of some of the stereotypes we traffic in about who gets EDs and what causes them. I was also intrigued by their speculation that there are far more people with eating disorders than we know:

“I’m willing to wager that the majority of eating disorders are experienced by folks with multiple marginalized identities. It’s likely that a lot of us aren’t able to talk about it because we’ve been denied representations of ourselves, and been denied in society.”

If we settle for mere “awareness” about EDs, we are complicit in the invisibility of this suffering.

So, with all due respect to NEDAW, it seems to me that we must ask more of ourselves and each other than awareness. We must demand humility. How are we to remain flexible and humble when it comes to the experiences of those with eating disorders? For a start, we can aspire to be lifelong learners who: check our privilege, again and again, in every interaction; listen to, rather than tell, the truth of people with eating disorders; and seek to become “effective students” without requiring anything of the “teacher.”

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