Conference call: IED Action, Aspire and the Butterfly Foundation

IED Action, Aspire and the Butterfly Foundation
Summary of Conference Call
July 9, 2015

In Attendance:

Christine Morgan, CEO/Director, the Butterfly Foundation
Taryn Harris, Communications Coordinator, The Butterfly Foundation
Cate Sangster, ASPIRE
Amy Cunningham, IEDACTION
Jennifer Ouellette, IEDACTION

As a result of the joint social media campaign IEDAction and several other organizations* undertook in response to the recent Butterfly Foundation “Don’t Dis My Appearance” national awareness and fund raising campaign, a phone call took place July 9 between Christine Morgan and Taryn Harris of Butterfly Foundation and Cate Sangster of ASPIRE and Amy Cunningham and JD Ouellette of IEDAction.

Prior to the phone call there was consultation among all groups involved as well as a large contingent of Australians. It was decided the focus of the call should be to recognize the excellent work Butterfly Foundation is undertaking in Australia while expressing concerns about the issue behind our counter-campaign—what we see as an unhelpful over-focus on body image as a cause of eating disorders.**

We are pleased to report the conversation was amicable, respectful and fruitful. Ms. Morgan was very open to listening to our concerns and we were appreciative of information she shared about the work Butterfly is engaged in and their long-standing and continuing interest in collaborating with a range of Australians with lived experience with eating disorders.

Our main point is that while body image is but one of many environmental influences that may combine with a person’s genetic predisposition and lead to an eating disorder, it is given a great deal of funding and is perceived as “the” cause of eating disorders (even when it is not an organization’s intent to send this message).

Ms Morgan noted that there is little government or philanthropic funding for either negative body image issues or eating disorders treatment in Australia, and it is one of Butterfly’s commitments to increase funding levels and understanding of the complexities of eating disorders and their contributory factors using a multi-faceted approach that includes the use of evidence-based advocacy to government, awareness campaigns, promotion of clinical and social economic research, delivery of education programs in community and schools, as well as support and treatment services in-community and in-hospitals.

Additionally, we believe this focus on body image maintains public perception that eating disorders are disorders of choice and vanity, which has a detrimental effect on the will of the public at large to fairly fund the treatment and research of eating disorders, as well as giving a false sense of security to families whose children do not struggle with body image.

Ms. Morgan was very receptive to our concerns and our feedback that while the intentions of campaigns like the “Dis” campaign are laudable, such campaigns may miss the mark in raising a full awareness about eating disorders and the role of genetics and other causal factors.

She understood that we think there are other areas we feel the public needs to be educated upon such as the genetics of eating disorders and warning signs. We had wonderful common ground on the topic of raising awareness that males are also affected by eating disorders and that there are a wide range of eating disorders in addition to anorexia and bulimia.

She heard our concern that many of us with lived experience felt the “Dis” campaign simplified both the cause and treatment of eating disorders with an implication that kindness was the answer. We discussed possible conflation with the body image issues present after the onset of an eating disorder being seen as causal and with recovery work needed on that aspect being wrapped in body image work that is commonly perceived as eating disorder prevention.

Actions that will be taken as a result of this call are that Cate Sangster and Christine Morgan will discuss future collaborations with the stakeholders from Australia who influenced this action. As Cate said on the call, Butterfly is doing some amazing work. IED, Aspire, et al are eager to both support and influence the direction of future endeavors.

Our collective is remarkably consistent across groups and individuals with elevating access to treatment, physician education/training and research funding equity to the forefront of public discussion and these are goals we share with many organizations. What we hope to do with our campaigns and conversations such as this one is ensure that new voices are heard alongside those who have been in the trenches for a long time.

New voices and new perspectives can often add to the conversation in a way that propels a movement forward. That is our mission and our hope—that by speaking up we can challenge the status quo and provide insights that come from seeing issues from a different angle and through a lens that is unique to those outside the long-established structure.

Thanks again to Christine Morgan and Butterfly for being open to what we consider to be an important and potentially transformative dialogue that recognizes we all have the same long-term goals: fewer people needlessly suffering and dying from treatable illnesses.

* International Eating Disorder Action, Eating Disorder Parent Support, Aussie Support Group for Parents of Children with an Eating Disorder, The Dirty Laundry Project, Beating Disorders, Adults Supporting Peers in Recovery from Eating Disorders (ASPIRE).

** IED et al “stipulated” to body image as an environmental cause of eating disorders for the purpose of having a productive conversation. As an organization we are not convinced there is a body of proof that body image work prevents eating disorders).