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ICED 2012: Inefficient impressions and the power of "duh!"

Posted May 09 2012 12:05pm
So, my friends have been demanding that I get going on my conference report. I'm going to do this very impressionistically and without any sort of efficiency. If you have specific questions, ask 'em. Also, there's a lively group of others busy tweeting and blogging and Facebooking bits along the way as well!

So, the conference was the annual International Conference on Eating Disorders put on by the Academy for Eating Disorders . AED is, despite the name, not "for" eating disorders and does a bang up job of putting on these events. I have served on the program committee in the past and am now on the committee for ICED 2013 in Montreal and believe me when I say the amount of both volunteer and staff work to pull these off is staggering. The fact that it is done with a high level of both humor and community spirit is evident as well. This year even the dry bits, like award ceremonies and "shut down your cell ringers" were done with warmth and personality. Glenn Waller and Carolyn Becker deserve the Oscar of organizing and presenting.

I arrived in Austin on Wednesday and immediately began running into folks. After all these years of attending ED events around the world I find that even with 900 participants the hotel lobby becomes a small town. There are those you know by sight for a wave across the lobby and those you rush to for double kisses and then of course those you whisper with scandalized or awestruck tones to your friends and say "There's..." The AED conference differs from other ED events I've attended - more than I can count - in that there are far more researchers than usual. Of the clinicians, far more are medical directors and clinic heads. This means the ratio of men is higher, visibly. This is a somewhat touchy topic in the field, but bears discussing. A big theme of this event was the Research-Clinical gap -- the uneasy relationship, and lack of relationship, between those treating patients and those gathering data about the illness and about treatment efficacy. To speak plainly, there is a sense in the treatment world that not only are they being "told what to do" by out of touch academics but the female dominated clinical world chafes at  what really is a more male-dominated domain of research. The gap, and distrust, goes both ways, naturally. The Old Boy network is changing, but if the grumbling is any indication, still exists.

I find many of the people who attend AED every year rather out of touch with what goes on in the advocacy world, not to mention the media, and remarkably unaware of what goes on clinically outside their practice. So, while I spend my year hearing from families and clinicians about the real world, talking to and responding to the media about eating disorders, and reading research I find that those who are creating the research kind of blink like they're coming out of a dark room into the sunlight. They're shocked by the emotions and can be dismissive of the problems. The attitude I hear most often is "Well, I'm sure that is the exception" to practices that are, dear readers, the norm. "Well, parents should seek out better providers" would be great if a family had some way to know the difference. "No one I know does that" is more a reflection of one's circle than it is reflective of the field.

So, surrounded by lovely, dedicated, well-educated folks my passions can come off as shrill - especially when the listener is living in a world where they assume others think and practice as they do or "should." Since I am also privy to the critique of many providers of other providers - something they don't necessarily share within the field for fear of reprisal - I also know that some of those in the Ivory Tower and some of the leading clinic staff are not as well-thought of as they think and often practice in not only different but mutually exclusive ways.

I bring this all up to say that while research-clinical gap was a big meme of ICED 2012 for me the important gap was the research/clinical-public gap. I'm pleased to see far more chatter and understanding between researchers and clinicians but I fear their internal squabbling is less dangerous than the gap between ALL of them and the reality for families: legislative, media, public health, public perception, systemic.

I won't list all the interesting people I spent time with, but will say that the ability to know people by sight and work is something that can only happen over years of 'showing up.' Name tags are great, as are introductions, but having a depth of experience with and institutional knowledge of people at these events is invaluable. It does lead to cliqueyness, though. As glad as I was to be waylaid for conversations crossing a room I passed many people who would have been good to know as well. Being friendly with people and having a dinner mob every night is very pleasant but I'm also aware of the person like me in 2004 who doesn't know anyone or what anyone does. It is good to be known and to develop relationships but I try hard to make sure I have interstitial time to just walk up to people I don't know, but that is also hard. Ten years ago I was terrified of walking up to strangers and devastated by any botched encounters. I'm older now, and far more confident, but I can't deny that SOME of my courage also comes of knowing that I do have friends and I do have meetings  set up, and that most of my conversations can START on a deeper level and not on the conference speed dating level of "Hi, and where are you from?"

I wonder how we can do a better job of recognizing and drawing in those with new, challenging, even obnoxious new ideas who have for the first time scraped together the money (not inconsiderable) to show up blind and trembling as I once did.

Great news: F.E.A.S.T. / AED / MEDA volunteer, Mary Beth Krohel, received an Advocacy award on Saturday. Well-deserved and beautifully accepted. Introduced with great charm and admiration by Ovidio Bermudez, M.B. gave a wise acceptance speech accompanied by a spectacular PowerPoint. So proud to know M.B. and to have her as a partner in advocacy. She embodies collaboration and, as she puts it, being "Switzerland" in terms of getting along with everyone. I would add that she's also as efficient as a Swiss watch!

The twitter aspect of the conference was amusing. Only 6-7 of us were regularly doing so, excluding the ones just marketing their own events. (OK, maybe I should have done that, too) Often, we tweeters were sitting together pointing and smiling at one another's screens, which is silly. It was VERY funny to see the response to the tweets - or lack of them - by friends back home insisting on more. Most people I talked to at the conference didn't understand twitter and were a bit blinky about whether they were missing anything. The last session, the Think Tank, featured a Twitterfall display at the front of the room so all could see the tweets in real time. One of the first said with delight "Wow, tweets on screen works!" which caused everyone to, truly, twitter with muffled laughter. Another good tweet asked if microphones were obsolete. Followed by one suggesting a 140 character limit on microphone comments! I believe we were seeing the beginning of a new era in audience participation - and suspect that next year many who were there will be up to speed and game. My faves of 2012:   keepcatebusy  hikerrd  edbites  cbulik  evanfurth  stephaniezerwas  efcraft  DrSloaneMadden

So, the science. I know that's what my friends want to hear about, you geeks! Well, I'm sorry to say that I missed most of it. Except for the Keynote and Plenaries I was in meetings or otherwise off somewhere. I try to purchase as much of the session tapes as I can afford for my later edification. For those of you who do want to get the nitty gritty I suggest COMING to ICED, or buying those tapes. There's no substitute for long-form presentations and actually speaking to the presenters. Show up, people!

Susan Ringwood, the head of Beat , and I held a workshop on Empowering Parents through Advocacy on Friday. It was lightly attended, and Susan wisely noted that while those of us doing advocacy and activism need the clinicians and researchers there is not a great deal of understanding of that by the professionals. For the reasons I cited above, this gap hurts all of us. We did have a really high-quality group, very keen, and representing 5 countries. The latter is an interesting issue both culturally and logistically. Advocacy in the UK is quite different than in the US - as our health systems guide much of what we can do as families. In the UK families don't have the same need to search, pay for, or make choices about treatment - and in the US that is MOST of what parents need to address. Same illness, very different issues. One topic that came up was the worldwide effort many made to support the petition against Jenny Craig's CEO presenting at a girls' school conference. To my surprise, one of the Australians there thought the whole thing wrong-headed, to which I replied that we international advocates should share these concerns in real time so we can coordinate. We also had a colleague there from Israel fresh off the news of a ban on undersize models - a topic that many ED advocates are cheering but leaves me cold. But still, my question is "what can we do to help you as advocates in your country spread the word so others who care about that issue can help?" One point of common ground: The World Wide Charter .

How is it that I didn't know that Austin is a combination of New Orleans and Nashville? Good food and music were everywhere. Luckily, I had early morning commitments all week and unable to reprise my debauchery of New Orleans! Still, fun to hang out with foodies at a foodie place - and to negotiate a tapas restaurant with a group of people sensitive to food choice issues! More mysterious... a Starbucks with no lines and almost instant beverages right in the lobby.

Kudos to the ICED planners for insisting on a real(er) breakfast offering. As many know, my pet peeve of ED events is the lack of food and the affinity for meals taken standing up on small plates filled from hors-doevres displays but copious alcohol. And water. Always water. (but Stephanie gave a thumbs down for the water!)

The keynote, Scott Lilienfeld, was a witty and wise and provocative speaker (see Carrie's post for best explanation ). Better still, most speakers for the rest of the conference - including me - referred to aspects of his talk which is the true sign of a well-planned and executed Keynote.

Which brings me to my presentation. First, you should know that I've SUFFERED over that thing for months now. I've dragged friends in and out of the field through my script and wailed and whined. I literally had sleep problems over it and that is very unlike me. I've given speeches, even a short ICED plenary bit years ago, but this felt different. One, it was a topic of great controversy in the field and followed years of squabbling and misunderstandings - for me and for many others. Two, I'm very aware of the boundaries that I try to keep in this field: as an outsider, as a parent, as a non-clinician. But also my value: as a longtime observer, as a representative of many, as a thinker, and as a mother whose family was deeply affected by the attitudes and issues therein.

What I was asked to do was to offer my thoughts on how the term "brain disorder" was used and valued from the parent/carer perspective. I was followed on the panel by someone from outside the field who isn't warm about the use of this term or other biological language around EDs or any mental illness. Then came a noted anthropologist about the use and misuse and interpretation of language. At the end, a "discussant" made observations about all of our presentations and some conclusions.

I was terrified. Part of that is normal stage fright: 900 people can do that to ya. I was also affected by the visceral emotions of being under attack: I knew well that many in the audience believe that I personally and the ideas I hold dear are wrong and dangerous. I also felt keenly the sense that I was a lightweight - er - easily dismissed on a topic that I felt I really had something of value to share. Also, what I was going to say was not based on data or empirical observation - it was the culmination of a decade of thought - my thought - and really, why should that matter?

I'm told that I didn't appear nervous. I do remember feeling very focussed and then unutterably relieved. I'm told that "any lingering ideas that you are a zealot" were dismissed. Now, I know that my friends are obligated to say nice things, and once done that's all anyone CAN do, but the best responses - the ones I cherish most - were these.

Everyone who came to the microphone during the Q & A believed the Plenary panel had done the right thing and a good job to bring these issues to the open air, and that it was time to move forward. And that list included some of the most vociferous voices on the topic.

The best, though? The lady at the sink next to me in the powder room who summed up my opus with this: "Duh!" as in, "Why is this controversial?' To take something so incendiary and let reasonable people get things back to reasonable discussion is the first step to "duh!" so we can get on to the next questions.

The last event of the conference is always a dance party at the hotel. There's real food, a cash bar, and - who knew? - happy giddy dancing by people who one is most used to seeing much more buttoned up. In former years I would watch. This year, I danced. Others got blisters .

The last night of ICED I did something I should have done years ago. I walked up to a well-known person in the ED world and thanked her for her work. This is notable not only because I've met her countless times over the years, and not just because we've clashed over time. What chagrins me is that I genuinely DO admire her work on a particular thing she's interested in. But I've been both scared of her and defensive because part of her work is very much against mine. But it has taken a decade for us to have enough of a safety zone for me to say that. I'm embarrassed. What if I'd started out that way? I might have been rejected, but I would have done the right thing and perhaps softened some of the ugliness that followed. I have found, without exception, that the very people I disagree with most are the ones I learn most from. Not that we agree - we do not - but we are talking which is the necessary step in between.

Greatest take-home lesson? That most people are as annoyed at the extremes of their own opinion as I am. Those on the prevention bandwagon, for example, do include people who think that eating disorders are just a product of environment and that we can only prevent EDs by changing the pressure to be thin. But the prevention people who are really deep thinkers and leaders do not hold that extreme view. Same for those who believe parents have an influence on eating disorders - there are those who place all their belief there but I can't find any of those people in the leadership or serious research or clinicians in the field - those people are outliers who tend to embarass their colleagues...
This is familiar to me because I have the same problem. I have allies who I think are narrow to the point of visionless, married to single issues to the exclusion of reasonableness, and unable to distinguish single ideas from the more complex people who hold them. I often find myself defending ideas but being shot down on the basis of there being extreme people who also hold them. Well, I have to guard against doing that to others. I have to stop the "don't say that thing because it leads to that awful other thing." I've got to allow for people not being as extreme as they seem just as I ask it for myself. M.B. had these made and we were giving them out like candy!

My goal for this conference was to disappoint those who enjoy seeing me, and others of similar thinking, as foolish zealots. I think, I hope, that my presentation helped. I believe showing up helps, and I do that with the material and emotional support of many friends, allies, and my dear family.
Thank you for this opportunity, and sorry for the rambling nature of this report!
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