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

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:         

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!

Comments

  1. Wow. My admiration for you is boundless and I love you for everything you do.

    Charlotte Bevan xx

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    1. So tired I cannot find the official comment button...so I'm piggybacking on Charlotte's beautiful comment. Ditto and Namaste - With more gratitude than I am able to express right now. Becky Henry
      ps. Seeing Janet Treasure in the morning...

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  2. The theme of the ICED in 2004 was "Finding Common Ground: Integrating Clinical Practice and Research."
    http://www.aedweb.org/Conference_Archive.htm
    The theme of the ICED in 2012 was "Connecting Practice and Research"
    http://www.aedweb.org/AM/
    Any progress during the past 8 years?

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  3. Having served on committees I can tell you that the theme is the first thing you do and then you try to keep that in mind as you plan the Keynote and Plenaries. It's more a mood than anything actionable. The conference organizers are setting a tone, reading the wind?

    That said, these have been very big themes among people in the field for years now. These ugly arguments over language and sniping from clinicians at researchers and vice versa is a chronic problem. While we outside the field tend to think of it as a monolith THEY tend to divide themselves and aren't as aware of controversies from the outside, I find. They're all in competition with one another for research money, academic positions, titles, conference speaking gigs, book contracts. They're all competing not just within the field of EDs (which really doesn't exist) but for recognition in their own professional field - where even the top people in EDs aren't necessarily even known in their own.

    So yes, there's progress, but the tension there is being displayed in the themes - people are always trying to heal these divides and arguing, and show respect across differences.

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  4. Laura, thank you for this great roundup on the 2012 ICED. Between you and Carrie, I feel I've had an armchair ride there from Melbourne. Nothing can quite replace the warmth and comradeship and uplifting inspiration that ignites by 'being there' with like-minded and not so like-minded people. As you say, we often learn most from those who have different perspectives, if we have the grace to take off our blinkers and listen, (hoping that they will do likewise). Two things I wish I were there to see: your presentation, and that of Mary Beth receiving her award. Two great advocates shining a bright light in the often dark and confusing world of ED.

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    1. You were missed, June. You'd have blushed to hear how often your name came up!

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  5. How did the presentation on FBT during Teaching Day go over?

    Any news on the new FBT SIG?

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    1. I did not attend Teaching Day, I'm afraid. Lotta money and another night away from home didn't add up. If anyone reading this did attend, share!

      I also didn't go to the FBT SIG... wow I feel like a slacker. I was preparing for my talk. Again, FBT sig: speak up!

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  6. Thank you for "showing up", Laura, and for writing this wonderful description. Glad your talk went well and that you met your goal for the conference!

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    1. Your support means a lot to me, Kris, I hope you know!

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  7. A wonderful report Laura; I loved reading every word, but more than that, as always, you make me really think - about your words and what you do, and what you mean and what we are trying to achieve and why we are still here on this particular hobby horse that we find so hard to dismount. The more I listen to you, the more I realise that my particular mare, albeit a little longer in the tooth and a little frayed around its edges, just keeps getting more interesting as it grows up.

    Bless you for: showing up; taking the time; paying attention; making connections, and for being informed, inclusive, curious and an eloquent, elegant advocate for families everywhere for whom you are making such a difference, and then for coming back here, all spent, to tell us about it.

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    1. Coming back to talk about it with others is half the experience really. Without you all helping me see things clearly, and process them, it's just an echo chamber. Here's to staying on our hobby horses, all in a posse!

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  8. Laura, I'd love to hear more about what questions/reactions you got to your presentation about using the term brain disorder as a way to characterize ED's. It's been a huge breakthrough for me as a caregiver to my 13 y/o AN daughter and ATDT regular. Thanks.

    Breathingmom

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    1. Mixed.

      I had a number of people who are of a similar bent thank me for giving it voice. Others told me they felt frustrated by it. What struck me was that those who felt frustrated didn't really seem to understand what I'd said. They persisted in thinking I was saying that they were (and yes, it was people who had the disorder themselves) broken and unfixable.

      Many people prefer to believe they are the same as anyone, and had the same risk and ability to fight it. They WANTED responsibility for the problem and for fixing it. I get that - and even applaud it - for recovered people. But not for current patients beginning their treatment or for their families.

      I truly believe that if people understood what people like me MEAN when we use the term they would realize we are mostly on the same side of the issues. No one is saying that the brain differences are permanent or shameful - we're saying they're treatable and understandable.

      But one speech doesn't change minds. It may have opened a few to other angles, and taken away some of the sense that people like me are uncaring and extreme.

      Most in the audience, I think, continue to dislike the term and the biological language. I was the only speaker to defend the language, though others did suggest there are some benefits in certain situations. But it was a start.

      I

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    2. I find that really perplexing - what is it, if not a mental disorder? It is not like there are things we do and think that our brain controls, and things our brain doesn't. There's a neural substrate for all of our behaviours.

      When you say "many people prefer to believe they are the same as anyone, and had the same risk and ability to fight it", who do you mean, when you say "many"? Those with EDs, or parents/caregivers? Not researchers I hope...

      This is kind of shocking to read, I have to say. I suppose I live in my own bubble where genetic variation and diversity is always seen as the culprit to why people are different on every freaking level, even how well we respond to over-the-counter meds.

      Tetyana

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    3. I agree with you, Tetyana, but I'm afraid this is not the norm in the ED field, not even among researchers. At least 1/3 of people treating EDs have had the experience themselves and this does make it terribly personal. Naturally, people have a deep investment in what they think worked for them, and what they believe brought their illness about.

      I believe most people think that my using "brain disorder" is a way of absolving myself of parental guilt for my part in my daughter's illness. I wish they knew just how guilty and responsible I feel, and how important I think parenting is to helping our kids get well!

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  9. Your 'greatest take home lesson' is something that stands out to me about this blog and your activism. As a sufferer who recovered independently and whose parents had no inclination to do FBT or indeed anything more than stay in denial about my AN, I am probably not a natural ally. I always felt that parental advocacy would ignore cases which didn't fit the mold, and have an unreasonable bias towards a 'pure' biological model with no appreciation of comorbidity. And I read a lot of things which confirmed this for years, along with a lot of passionate advocacy which came across as threatening and misplaced. I saw other recovered sufferers being shut out from discussions for their 'bias' or supposed lack of knowledge and it alienated me. But reading your considered and balanced views, which are based on evidence and NOT confirmation bias (even though a lot of evidence agrees with you :P), I changed my mind. And partially because your willingness to listen to the less radical viewpoint despite the damaging extremes out there, I modified my views as well. I think you are on the same page as many clinicians and former patients, if talking with different dialects and about different things. And that's why your activism actually has a huge chance of helping sufferers. I can see why some at the conference might have feared hearing a speech from a 'zealot' but I bet absolutely none of them left with that feeling.

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  10. That means more than I can say.... Thank you SO SO much for this. thank you.

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  11. Wow, anonymous, what an amazingly powerful comment. Thank you. It not only means a lot to Laura. It means a lot to me, too. Thank you thank you thank you. xx

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  12. I find this conversation so interesting, because the language has the opposite effect on me - it was the psychological language made me feel "broken and unfixable". I had anorexia a little over a year ago as a young adult, and at first all I read about it talked about all the deep psychological problems sufferers have, and their terribly harmful families. It made me feel completely confused and helpless, because before I started struggling I was really happy and emotionally stable and capable and had wonderful friends and parents who have never been anything short of amazingly loving. Psychologists who believe, really without any evidence, that anorexia is psychodynamic in nature end up giving the illness so much more power - you already think that restricting is the most important thing in the world, and they tell you that you think that because of something deep-rooted and true that really does matter. The idea that something in how my brain functioned had caused me to be irrationally anxious about eating, but that underneath I was still the same person and had the same wonderful family, was incredibly empowering. And the idea that nutrition in itself fixes the anxiety over time made it so much easier to eat, even though it was like torture for a while - I could never have managed it if I hadn't believed that just eating would help make all the frightening thoughts and feelings go away. I didn't tell my family because I was so worried that they'd feel like it was their fault even though I was sure that it wasn't, but I used to read that forum you have when I was having trouble with insight and starting to think that I was fine - it helped enormously to read that so many people were exactly the same way and still got better, and to hear normal healthy perspectives from parents that made gaining weight sound like a good thing rather than a scary thing.

    I think the confusion comes when people think that biology can't be changed by psychology. It absolutely can, and there are so many examples, even with clearly biological things like acquired brain injuries and tumours and strokes. Even if the initial problem is rooted in biology and there is no biological fix, there is so much potential for change. I'm not sure why people find this idea so hard - we have all sorts of examples of the opposite phenomenon, with psychology being changed by biology (frontotemporal dementia, for instance, or hypothyroidism causing depression). They're so interactive.

    I think partly I just wanted to say thank you, even if indirectly, because I think you and your advocacy community may have saved my life, and certainly made it much, much happier. I went out for a huge ice cream cone to celebrate something just the other day and didn't think twice about it! :P

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  13. Robyn and Peter South Australia8:22 AM, May 12, 2012

    Thanks for the update Laura....we are in awe of the work you are doing for families like ours.

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