I spent the last weekend of October attending the Binge Eating Disorder Association Conference in San Francisco and it was awesome. I have attended several conferences over the past several years and each and every one fails to be inclusive. The discussion is always centred on the cisgender white straight middle to upper-middle class thin woman who suffers from anorexia. Every research presentation, every session, the same discussion just new material every conference.
Those involved in putting together BEDA this year decided to change the conversation and focus instead on diversity and including all the people that every other conference seems to leave out – and it was wonderful. Obviously I could not attend all of the sessions, so if you want more information check out the #BEDA2016 hashtag on Twitter.
It was clear from the opening session that this conference was going to be a completely different mood. This session was a panel that included Desiree Adaway, Carmen Cool, and Ericka Hines about diversity, inclusion, and challenging biases. Adaway and Hines did not mince words and were throwing down hard truths about our system of white supremacy and oppression and how these issues stem from our implicit biases, prejudices, and micro-aggressions. They challenged the notion of diversity meaning just adding a “brown face” to the room and instead moving towards inclusion where everyone equally contributes and shares power and ideas.
Cool added how non-marginalized folx and therapists can and should be change-agents and take the risk of making mistakes in their journey to be inclusive. One of my favorite lines from this panel was near the very beginning, after Desiree mentioned white supremacy. When one of the audience members was not happy about her use of the term, she replied: “I need y’all not to be so fragile.”
Historical Trauma and Eating Disorders
The next session I attended was by Gloria Lucas, founder of Nalgona Positivity Pride, about historical trauma and eating disorders in marginalized non-white communities. The presentation was extremely well done and informative. Lucas did an entire history lesson on colonization and defined it very specifically as:
“The establishment, exploitation, maintenance, acquisition, and expansion of colonies in one territory by people from another territory”
She also explained the consequences of colonization, noting that there were nearly too many to name, but they include relocation, sexual violence, military conquest, epidemic disease, resource theft, coercive assimilation, and slavery.
What I found particularly interesting and did not know was that colonization affects individuals throughout generations just psychologically but genetically. Lucas’ presentation ended with several marginalized folx standing up and speaking about their personal life experiences including what it like to be the only person in the room that looks like you. I think that part in particular had a huge impact on the entire room.
Being an Ally
Another inclusive session I attended was a panel with Gloria Lucas, Pia Guerrero of Adios Barbie, and Jaden Fields of Trans Folx Fighting Eating Disorders (TFFED) on being an ally to organizations representing marginalized communities. Their hard hitting approach reminded me of the first presentation. Jaden started off by speaking about the true meaning of ally, which he described as not a noun or identity but an action verb; so, to be a better ally, a person needs to sit down, shut up, and listen.
Gloria expanded on being a good ally by moving the discussion towards treatment centers and providers and how they can include all folx in recovery. She stressed the importance of the idea that appropriation does not equal appreciation, and spoke about how treatment centers have been guilty of cultural appropriation in eating disorder treatment through the use of New Age, Buddhist, or other practices without the staffing of an individual with knowledge of the cultural significance — I was nodding right along with that one!
Pia wrapped everything up discussing forms of committed action and asking everyone to be active and committed in their allyship. Committed action can take many forms, including interpersonal, community, and institutional. The best part was the included sheet of concrete ways to include all folx in eating disorder recovery located here. No excuses for not being an ally!
BEGIN: Binge Eating Genetics Initiative
The next presentation I want to talk about is the BEGIN: Binge Eating Genetics Initiative by the researchers at UNC Center of Excellence for Eating Disorders. This session was all about a new genetics study that is about to begin that is very similar to the Anorexia Nervosa Genetics Initiative (ANGI) already in progress.
In BEGIN, however, the participants would not just be sending in their blood, they would also send in a mouth swab and use an Apple Watch (given by the study) in conjunction with Recovery Record throughout an 8-week program. Recovery Record and the Watch would give questionnaires, gather data, help the individual cope, etc. over the course of the study.
As many of you can imagine, a lot of people had a lot of questions. I will try to break things down question by question, issue by issue:
Inclusion: Several questioned how inclusive the study could be when it requires the use of an expensive Apple phone. Even though the study includes an Apple Watch for each participant, which is incredible but absolutely necessary considering that would be even more outrageous of an ask for participants, participants still need to have an iPhone (costing anywhere from roughly $400USD to $1000USD) to participate. Will diverse participants be able to participate in a study that may be cost prohibitive?
The researchers tried to explain why not by saying that there is not as much of a “phone gap” as there is an income gap and they do not expect this to be an issue. For some reason, I doubt I was the only one who did not buy that explanation. Unless Recovery Record currently has a diverse population of users using the app that we are unaware of, it just seems far-fetched that they can get a diverse enough sample for their study.
iPhone: The study is designed in a way that exclusively uses Apple products — the iPhone and Apple Watch. That narrows the study’s participants to just those individuals who own iPhones. It leaves out any individuals who own Android or other type products, who do not own a smartphone, or who do not own a phone at all. It is another big limitation of the study and risks limiting the sample.
Privacy: Another question from the audience was about the privacy and security. The researchers said that it was “non-negotiable” and it had “very high security”. That is generally reassuring, though who knows? I hope they meant it. If I were a study participant and the app was very visible on my phone or Watch with notifications, I would not be too pleased. Here is hoping that they did a good job in development and it goes off without a hitch!
Stress/Trauma: Many members in the audience wondered how the study would control for stress and trauma or even if that study could. The researchers acknowledged that there was nothing in place to measure stress and trauma, but they were open to suggestions.
The Study: Several people brought up that this genetic study and all genetic studies only show part of the picture and leave out sociocultural and environmental impacts. The researchers were very sensitive about this topic and were adamant that genetic research can co-exist with other research and that they are not dialectically opposed.
Even if they can co-exist, why the focus on genetic research? We have so many other issues to address such as access to treatment and other known methods of improving outcomes already including early intervention. How is expensive genetic research going to help the many, many people out there unable to access treatment? How is this research going to give us a clear enough picture with a diverse enough population?
The study itself sounds really kind of cool. The use of the Apple Watch in conjunction with everything else sounds like a step up from just collecting blood samples for genetic tests. Still, I cannot help but wonder what more we could be doing to help all those people who cannot access treatment for a multitude of reasons and how we could improve our early intervention methods. Spending all this time and money on an expensive genetics research study that may prove absolutely nothing or take many, many years to figure out is much less of a priority on my to-do list.
Pulling it All Together
BEDA wrapped up with a presentation by Aaron Flores and Michael Levine on Men, Culture, and Eating Disorders. Both men ended the conference on a hugely successful high note, making jokes throughout their slides focusing on the patriarchy, size diversity, men and BED, weight stigma, etc. and how to combat these issues with Michael Levine breaking down his ideas on prevention in easy to understand principles such as: Prevention is a primary obligation, not a luxury. It was a much needed finish to the conference.
The last presentation I want to mention is the So Weight Loss is Not the Goal panel done by Amy Pershing, Suzanne Dooley-Hash, and Theresa Chestnut. This presentation was the most personal for me because of my struggles with acceptance of my body size. I really liked how the presentation was about how bodies come in more than one size and weight is not a determinant of health (and what actually are). My favourite part was Pershing mentioning body neutrality. I think the eating disorder community and now others outside of our community co-opting the phrase have taken body positivity and body love to be the all-or-nothing. I think that leaves so many feeling terrible for not living up to that standard. Body neutrality really needs to be more a part of the conversation and it was a very welcomed part of this one this year at BEDA despite its brief appearance.
Overall, BEDA was absolutely incredible. I do not think enough people pay attention to the conference and go to it. Every year, they have incredible speakers, presentations, and conference themes. I know this year was difficult with other conferences conflicting (ABCT and EDRS), but I would encourage everyone out there to check out BEDA’s conference next year taking place in NYC — I know that they are planning a huge conference that should really be something to look forward to.