I have been to Boston, but not this year and for no longer than a day.I have been to Eating Disorder Conferences but not to ICED and not this year.
So my "attendance" at this conference was virtual and limited - for a couple of hours each day I scoured my twitter feed (a spasmodically accessed place) for posts with the hashtag #ICED2015 and occasionally commented on those I found helpful or worrying.
From this extremely limited view of the conference I understand that it began with great stuff; genetics and exposure therapy, the importance of collaborative working and the necessity to challenge the eating disorder, went on to cite parental expressed emotion as a block to successful treatment and ended with parents being told that they were unwelcome at the table and that many of them didn't want to be there anyway.
For those of you who WERE there, how unhelpful is my view? What did I miss and what did I get completely wrong from listening to the birds?
3 comments:
It was.... interesting.
I think each of us -- parent and professional and advocates and researchers - come away with unique views of the same event. After all, we all go there with different frames, and we each attend a different set of presentations with a unique POV.
Those of us on Twitter in the moment, too, were looking at it from and for those outside the room, so there's that.
I'm not sure that anyone said that parents were unwelcome. In fact, as far as the organization and leaders in the field it was a BIG welcome to parents. But there was, of course, a lot of content that the parent community has issues with, and there are certainly individuals in the field and at AED who maintain prejudices against parent involvement in care, not to mention professional events, but they were the minority and the latter was unspoken.
Whether each parent felt welcome, or their opinions let welcome, probably really varies. I personally felt both listened to and welcomed and was overjoyed to see the high numbers of parents who were present and vocal. It's a dream come true for me.
I think the tide has turned on this and it is now mainstream to welcome patient advocates and parent advocates into the fold. This means, inevitably, that research and wording and ideas that have been unquestioned and unremarkable will now be questioned and remarked on! That may take some getting used to by some who are used to being able to say whatever they like "between colleagues." If parents are also colleagues, in treatment and in the ED professional world, things change. I think it is a good thing!
That sounds almost all positive Laura. How do we make it happen at all events, in particular how do we allow access to those (patients, parents, researchers, medics) without the cash to pay large fees to get in?
I think Laura's analysis is spot on. One factor to what showed on Twitter was that wifi access was very pricey and even personal hot spots and 4G connections that didn't use wifi were blocked--so tweeting was much less than I have seen in other settings.
The financial barriers were a topic of discussion in the leadership meeting and I hope movement will be made to offer discounted rates to those of us who are paying our own way. I keep saying I am not doing much to change the perception this only happens to affluent white teenage girls. We need more voices from a variety of venues.
Post a Comment