For those of you who follow me on Twitter, you may have noticed that I was at the International Conference on Eating Disorders (ICED), the major yearly conference put on by the Academy for Eating Disorders, over the past few days. As I write this post, I am sitting in the San Francisco Airport trying to synthesize my experiences into what may or may not turn into an epic blog post.
Despite my extreme extroversion on the Internet, I actually live in a funny place where I’m continually balancing my innate criticality and training as critical health psychology graduate student with the desire for folks to like me. I see this playing out at conferences like ICED, where people’s opinions of me and my fitness to do this work matter. I am unable to sit in a session and not voice my perspectives on Twitter, but I’m also continually filtering my thoughts through the lens of a few questions, which guide my reflections here as well:
- What and/or who is missing from this conversation?
- What are the institutional/organizational constraints those presenting are facing that may be contributing to what is irking me about this content? (if something irks me)
- What can I say that will contribute to opening minds, rather than personally attacking those sharing
These are important to keep in mind, I think, when being critical: issues don’t exist in silos or abstracted from multiple and intersecting social contexts. Any critique that I offer needs to be understood, I think, in this context as well – and not as being against any particular person. Again, something I often say is that I think those who argue within our field(s) actually share a lot. A nice example of this is the feminism and eating disorders Twitter upheaval of November 2015 (official title). I had a nice little moment with a mom advocate about this at ICED this year (when we chatted about my podcast with Kaila Prins at Finding our Hunger) and we reflected on how Twitter sometimes makes it seem like we disagree when we actually agree on a lot!
All of this is basically to say… I struggled at the conference this year. But I was also buoyed by the impetus for change and shifts that I saw moving out of the margins. One of the highlights for me was that Jaden, Dagan, and Ethan from Trans Folx Fighting Eating Disorders were in attendance, calling attention to the need to look at things from a social justice perspective. While I’m always conscious of not wanting to call on those who have been marginalized along multiple lines to be the ones always doing the educating, I am grateful for those who are willing to do so – because their voices are so incredibly important.
I didn’t actually take any notes the entire time, so this post is an amalgam of thoughts from my spinning head and from the Twitter. I hope you’ll bear with me. I’ll likely pick up on more threads from the conference in future, more “traditional” Science of EDs posts as well.
On Social Justice
Starting with the highlight of the conference for me, I want to comment on the greatness that was the final plenary session: “Diversity & Stigma Through a Social Justice Lens in the Prevention, Research, and Treatment of Eating Disorders.” The panel was moderated by Chevese Turner and Theresa Fassihi; panelists were Ilan Meyer, Marcella M Raimondo, Sigrún Daníelsdóttir, and the discussant was Deb Burgard.
The point of this plenary session was:
- To draw attention to who is not included in eating disorder research, treatment, and prevention
- To underscore the need to do better to recognize and meaningfully attend to diversity amongst those with eating disorders
We know that the stereotypical portrayal of a person with an eating disorder is a young cis white straight woman in a thin body from a middle to upper class background. We also know that this stereotype persists despite all evidence to the contrary for a number of reasons including but not limited to:
- Media portrayals of people with eating disorders
- Exclusionary diagnostic practices (i.e., diagnostic categories and measurement instruments were built around this population and so often miss people who don’t experience eating disorders in the same way)
- Barriers to seeking and obtaining help for distress around food for those who have been marginalized
Marginalized folks are rarely marginalized along only one line of social location. Social categories (like gender, race, class, sexuality, etc.) don’t just add up to create an experience, but rather impact each other. Understanding the implications of these compounding and enfolding social categories is key to taking an intersectional approach. Intersectionality is drawn from black feminist thought (more here); importantly, as Jaden Fields from TFFED tweeted: if we aren’t doing research intersectionally, that research is not valid. We need to recognize the complex ways in which oppression operates in society.
The panelists’ talks drew attention to why it is so important to consider people’s spaces of belonging (in case it isn’t obvious). Some gems from the panel:
- Prejudice can be a major stressor that impacts people’s health – Meyer described this in relation to the minority stress model (more here)
- Being connected to supportive communities can help to mitigate this stress, but those who are marginalized along multiple lines may be less connected to these services (or the services may not be available)
- Eating disorders amongst marginalized folks are often not recognized until they are firmly entrenched – which is especially problematic as we know that early intervention is often more effective
- Barriers facing treatment seeking amongst marginalized folks include lacking insurance, financial resources, legal obstacles, language barriers, and cultural stigma around seeking help for mental illness
- Raimondo noted that, related to these barriers, 90% of gender non-conforming folks reported facing barriers to care, and 27% reported being refused care in a recent study
- Pursuing thinness may be one way of protecting oneself from additional marginalization when facing significant oppression
Thinking about this last point, there was also a meaningful discussion about how weight status compounds with other spaces of marginalization in a way that can mean even less recognition for diverse folks with eating disorders. As Sigrun Danielsdottir reflected, of course people fear fatness in a society where fat people are told that their bodies are deficient, wrong, and immoral. Deb Burgard also explored this dilemma, highlighting how power and privilege infuse all of our organizations, dictating whose bodies will be welcome in which spaces.
So where do we go, knowing this? How do we create spaces that are more welcoming of diverse bodies? Panelists nodded to a few key directions for the field:
- Consult with those who’ve been marginalized: a key caveat here is that we also need to avoid tokenizing marginalized folks, assuming that everyone within a “group” will have the same experiences (intersectionality again!) and if we’re going to engage, we need to make sure that we provide financial compensation for the significant intellectual and emotional labour involved in this engagement
- Reconsider the instruments we use to diagnose and treat eating disorders: we need more than just a small tweak to language when a questionnaire was developed on a more normative population; we need an entire paradigm shift such that we can better understand how people relate differently to constructs like body image, food consumption, and societal ideals
- When someone gets upset or is critical of something we’re doing (say, we make mistakes with language or forget to ask someone’s preferred pronouns, for example) we need to listen, not jump immediately to the defensive stance
Raimondo cited Gaider’s definition of privilege in highlighting how important it is for eating disorder researchers and clinicians to consider where we’re coming from and what we might be missing: “privilege is when you think something is not a problem because it is not a problem for you personally.”
For me, of course, I tend to think about privilege in relation to recovery especially. I had the great fortune of being able to explore recovery with conference attendees in the panel on which I presented, “Eating Disorder Recovery: Bridging the Research Practice Gap” with Kielty Oberlin, Rachel Bachner-Melman, and Sander de Vos. Our panel was structured to allow for lots of time to discuss whether establishing a consensus definition of recovery is possible (or even desirable) and what participants in the session think about recovery. We had a lively discussion, including the following things to consider as we move forward:
1.Recovery is more than symptom remission; on that we can agree
- The role of symptom remission varies depending on the theoretical orientation you take to the concept of recovery
- Those using a medical frame are likely to disagree with those who take more of a “recovery model” orientation, seeing quality of life and wellbeing as central over symptom remission
2.We need to consider recovery in relation to society more broadly, including the spaces of belonging people occupy
- If people face barriers to diagnosis and treatment (see discussion above about marginalized folks in particular facing barriers), where is their room to be seen as recovered?
- The representations of recovery we have tend to be as normative and narrow as those of eating disorders: this can leave some people “unrecoverable” in the eyes of the medical establishment and society
3.The idea of recovery as a perfect place of sunshine and rainbows – or even a place of body love – can be overwhelming for people seeking it, especially if they’ve been told their bodies don’t fit for other reasons (see again: intersecting spaces of belonging)
- The way we message recovery matters
- There’s a need to balance the hope for recovery with pragmatism around how recovery is, in my view, just life – in all of its messiness and complexity
4.We also live in a society where “normal eating” is profoundly counter to the dictates that those advocating an anti-obesity frame would impose on bodies
- Some will recover into bodies that are not within the narrow confines of socially acceptable bodies
- Recovery will be harder for these folks – but it shouldn’t have to be
- So, we need to work both on bolstering people’s resilience and resources for navigating this fraught world and on changing society (policy, organizations, etc.) to be more accepting of bodily diversity
5.If we want people to recover (and that is, essentially, the goal of all of this gobbledegook we do – trying to resolve distress), we need to do a better job at ensuring that people:
- Have access to treatment
- When they get to treatment, find that this treatment resonates with them socially, culturally, and personally
- Feel that their voices and ways of being in the world are honoured
These are not new concepts, but they bear repeating. I’ve waxed on about how we need to understand recovery in this culture of ours in my (5? 6? I can’t remember) part series on recovery; let’s continue to chat about it.
Lived Experience, Research, Practice Gap
We talk a lot at these conferences about the research-practice gap. The Research-Practice Think Tank with Stephen Wonderlich and Tracey Wade was devoted to the subject, looking at whether practitioners adhere to manualized protocols, and if not, why not. It was certainly interesting, and there was a nice discussion about how we might encourage a quicker and more effective uptake of research evidence (i.e., making research more accessible, etc.).
However, there’s more than a research-practice gap in our field; there’s a research-practice-lived-experience gap. It’s great to think about how to make treatment more evidence-based, but if that evidence base doesn’t actually reflect all of the people who get eating disorders (and Raimondo said it best – those in treatment (and by corollary, treatment trials) are not all of those with eating disorders) then we’re not doing our best as a field.
Taking lived experience seriously matters. Listening to advocates and activists matters. If someone tells you your evidence based practice isn’t working for them, it’s important to listen and to not look for flaws within the individual that are making this so.
Science, and evidence, are a moving target. Howard Steiger nailed this point in a comment, noting that “evidence is a moving target” – so let’s move toward it, and not sit complacent with existing “evidence bases.” Evidence, science, and knowledge production are intricately linked to the societies in which they are produced, including the operation of power that oppresses some while privileging others. We are all complicit in this system, which doesn’t mean that we are helpless to work toward changing it. We need to consider, again, the dual need to work with what we have to bolster individuals’ resources to navigate systems while also working on creating the seismic shifts needed to make this neoliberal, capitalist system change.
This is but a taste of my thoughts about the conference – in the interest of not boring everyone too much, I’m going to stop here for now. I am more than happy to write more about other sessions in more specific detail if you’d be interested; let me know in the comments. I am grateful to this community for allowing me to get up here on my soapbox, but I encourage you to challenge me or add complexity to what I’m saying based on your (research, treatment, or lived) experiences. Let’s keep talking.