Thursday, November 20, 2014

Amy Explains Our Position

Just a little update on the issue with the Philadelphia Inquirer Sam Menaged of Renfrew profile/interview,  and also a bit of my opinion. Unfortunately, we have not heard back from Mr. Menaged at Renfrew. I sent him a formal email last week Friday from the IEDAction admins with our concerns and also noting that we had heard through third parties that he was misrepresented and we wanted to also help them get it right. 

This was before the letter to editor was printed. It's hard to know what people are thinking or doing unless you hear directly from them - so getting messages from third parties isn't really helpful and it also sends a message that our concerns aren't important. Given the size, resources and status of Renfrew I hope that they will take us seriously. The letter went out as the 200+ members if IEDAction with about 50 signatures of the most keen members.

Now my opinion: I do get the sense that advocacy around the nobodies or the non-ED groups like VS, Gap, Abercrombie, Freelee etc. is seen as okay even though it is also a bit marginal to our main goals of developing cohesive eating disorder treatment systems, but advocacy that asks the long-term and sometimes pioneering ED groups to look more critically at how and what they do is seen as subversive. It shouldn't be.

I hope that Renfrew isn't blowing us off and is interested in dialogue. I hope that all our groups are self critical and also open. We have to keep asking and questioning. There is some talk here and there since we started IED action and also other subsequently groups coming up (MAED A & A, glammonitor, etc) that we all have to work together and be on the same page. I think that is a bit simplistic for where we are right now - there is disagreement or lack of agreement on what to work on, there is discomfort with different advocacy approaches, there are undercurrents with lots of back chatter.

This all might be good stuff if it keeps the agenda moving ahead. I also am aware that lots of work has been done and there are lots of good people who have done it. But I ask that the old guard recognize that the new guard is coming up fast and strong and just like you we want change and are willing to invest in that. But our experiences are different. And the tools we have are different. And we might disagree with each other and the more established players. 

The really cool and wonderful happening is that with social media we are able to engage people as never before. They come on board because the action resonates with them. They stay on board because there is a place now for them to have a voice (all of these groups) and those impacted by ED can sometimes for the first time be heard and also use their experiences to impact policy. So while I realize that some of our actions make people uncomfortable, our intention is to continue to insist on correct and responsible information in the media and from ED 'experts' of all types, and to engage with groups to help get effective, accessible, evidence-based systems in place for early diagnosis and treatment and working with any and everyone we can get to pay attention. 

How we get there is not clear but that is the vision at least from my side and I hope we can solidify that in partnership with F.E.A.S.T.http://letsfeast.feast-ed.org/and others.

No comments :

Post a Comment