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).

Dialogue with The Butterfly Foundation

The following is open dialogue IED Action is having with The Butterfly Foundation following the collaborative letter sent out in response to their DIS campaign. We are proceeding with hope and expectation for a positive response.


On Wednesday, June 3, 2015, Christine Morgan <christine@thebutterflyfoundation.org.au> wrote:

Dear Jennifer and supporters of International Eating Disorder Advocacy,

There are more than 943,0001 Australians in 2015 requiring treatment for a clinical eating disorder– with less than 25 per cent accessing treatment. At the end of 2014 Deloitte Access Economics calculated that eating disorders costs Australia $69.7 billion. The Australian Government has only just begun to recognise eating disorders as a serious mental illness, and understand the contributory behaviours, environmental and genetic predetermined elements that are the cause of eating disorder. Butterfly Foundation is more than aware of day to day experiences of people living with eating disorders, and is also painfully aware of the amount of ‘campaign fatigue’ that exists around issues based fund raising and awareness campaigns, and we sought to break through this fatigue and focus on one of the detrimental environmental elements for a national campaign.

In no way is Butterfly ‘dissing’ those impacted by eating disorders. We know eating disorders are not a lifestyle choice, they are serious psychiatric illnesses. Those suffering have not chosen to do so and deserve access to optimal treatment. Butterfly is devoted to fighting for the rights of those with eating disorders to be recognised and responded to within the public and private health systems, and for all those impacted to have access to the treatment and support they need.

There is evidence that prevention initiatives and public education on health issues require a multi-strand approach.  Placing health promotion messages in the public space, such as what has been done with the Don’t Dis My Appearance campaign, is just one of a number of communication strategies that Butterfly uses to increase awareness of eating disorders and to help bring about the desired outcomes of reduced risk, reduced stigma and earlier identification and intervention.

This particular campaign highlights the preventative health value of a positive body image. As you have mentioned, the factors that contribute to the development of an eating disorder are complex and include a combination of genetic vulnerability, psychological factors and socio-cultural influences. While certainly not the experience of all people with an eating disorder, research indicates that body dissatisfaction, low self-esteem and dieting behaviour do play a significant role for many people in the development of eating disorders – and with body image being one of the top three concerns for young people in Australia, this is not something we can ignore.

This campaign has nothing to do with vanity or suggesting that these illnesses are a lifestyle choice, but everything to do with rejecting language which reinforces appearance-based values. The aim of this campaign is to highlight how body shaming and appearance-based judgement can contribute to negative body image and the development of an eating disorder and to empower people to speak out and say ‘it is NOT ok to judge me by my appearance’. This is relevant not only to the general community it, but in particular to anyone who is suffering from an eating disorder as we know that one of the serious myths is that you can diagnose an eating disorder by physical appearance. People who visit our campaign website will read that eating disorders are very serious mental illnesses with the highest mortality rate of all psychiatric illnesses.

This campaign was developed in consultation with internationally regarded clinicians and body image experts working with the Butterfly Foundation.  It has also been supported by people battling eating disorders. Butterfly Foundation’s commitment to raising awareness of eating disorders and seeking increased financial and health system support for those suffering with these illnesses is unflinching.

Please be assured that we hear and understand your comments and concerns. We appreciate your focus and attention on this critical issue and share your dedication to ensuring a better future for all people living with eating disorders.

Kind regards

Christine Morgan

Christine Morgan

CEO / Director, The Butterfly Foundation

National Director, National Eating Disorders Collaboration
103 Alexander Street  Crows Nest  NSW  2065
D:  02 8456 3900 | Office:  02 9412 4499

M: 0419 429 225
E:   christine@thebutterflyfoundation.org.au

W: www.thebutterflyfoundation.org.au   I  www.nedc.com.au

National Support Line:  1800 ED HOPE (1800 33 4673)

Letter to The Butterfly Foundation

Dear Ms. Morgan and the Butterfly Foundation Team,

Thank you for responding to our request for dialogue. As mentioned in our initial conversation, International Eating Disorder Action (IEDAction) is a growing collective of over 2000 parents, carers and survivors. Our goals are to correct misinformation about eating disorders in the media and the general population, among healthcare systems and insurers and with eating disorders advocacy and treatment groups themselves. We also advocate for evidence-based systems and treatment providers and to include support for research, training of providers, accreditation of services and expansion of early identification and evidence-based treatment approaches including family based treatment.  

Prior to IEDAction’s establishment, many of us were the target audience for efforts such as the Butterfly Foundations “Dis” campaign. Unfortunately such campaigns did not improve our understanding of eating disorders or access to treatment. Instead we now realize these campaigns trivialize eating disorders and in fact undermine efforts to ensure correct information about these life-threatening illnesses is broadly disseminated and they potentially undermine our collective efforts toward acomprehensive national response; hence our concern with the recent Butterfly Foundation campaign.  

We appreciate your desire to improve access to treatment and care services.  However we remain concerned that Butterfly continues to conflate body image issues with the real needs of the eating disorder community. It is our stancethat conflating societally-normed behaviors such as disordered eating and negative body image with the serious genetic, biological, psychosocial illnesses that are eating disorders is damaging. While we understand that Butterfly includes Body Image as part of its overall mission and we support promoting positive body image as a universal goal, promoting it as eating disorder prevention is not supported by research.

Our position is that body image and “feel good” campaigns should not be intermixed with true advocacy about eating disorders, and that such campaigns diminish the very real daily struggles of those impacted. We feel that an eating disorder organization such as Butterfly Foundation should focus on the priority needs articulated by the affected population. This includes a) public education on eating disorders with accurate information including the fact that EDs are biologically based mental illnesses with strong genetic influence;  b)  focus on ensuring diagnostic and treatment services; c)  decreasing stigma around eating disorders by promoting the recently released by the Academy of Eating Disorders Nine Truths About Eating Disorders. (AED, 2015).

If the only information the general population receivedabout eating disorders came from the Butterfly Foundation they might very well believe that the main factor for developing an eating disorder is negative body image.  We know that this is not true. We also know that heritability for eating disorders is high – 60% or more cases have genetic underpinnings. (Bulik, ICED Boston, 2015). To date there is no scientific evidence to suggest eating disorders are caused by body image concerns.  

While many people have body dissatisfaction issues and disordered eating, very few develop clinical eating disorders. “Love your body" and "don't dis on appearance" may be great campaigns for the welfare of the general public, these messages—especially presented by an eating disorder organization—do nothing to further public understanding of eating disorders being genetic, biological brain-based illnesses. 

Campaigns such as yours are undertaken with good intentions; however as the affected community we strongly feel they do more harm than good. They detract from asking governments to ensure their mental health budgets are adequate to treat eating disorders. They detract from our requests to medical and nursing schools to ensure adequate pre-service training for eating disorders diagnosis and treatment.  They undermine efforts to ensure legislation for eating disorders funding and treatment services.  And they are not meeting our needs. 

We do not deny that there are sociocultural and psychological components of the illness. However, factors being promoted in the current Butterfly Foundation awareness campaign give the impression that body image issues are the cause of eating disorders rather than a symptom of the disorder.

Additionally, these body image campaigns make a false promise that eating disorders are preventable. From a research and statistics standpoint, first-degree prevention efforts (preventing someone in the general public from acquiring an eating disorder) are not feasible (Cuiipers P, 2003). Indeed some school-based ‘healthy eating’ initiatives have had deleterious effects (Pinhas, et al, 2013; Carter et al, 1997). To date there have been no studies to prove primary prevention for eating disorders is effective or even possible as was recently affirmed in the National Eating Disorders Collaboration Bulletin E-Bulletin #283. (NEDA, 2014).

According to a recent analysis Bailey, et al note “Research shows that current programs generally result in an increased knowledge and awareness of public presentations of beauty, body image and eating disorders, but do not necessarily effectively decrease risk factors or change personal attitudes or eating pathology Prevention and intervention strategies continue undergo further development, research and evaluation to effectively motivate behavioural and attitudinal change in young people.” (Bailey et al, 2014).

We are concerned that the “DIS” campaign perpetuates a myth that if you and your family do NOT buy into a “thin” or “looks-based” culture then you are safe from developing an eating disorder. That’s simply not true. People don’t care about funding what will never affect them.  We are gravely concerned that perpetuating societal misunderstanding that eating disorders are about body image problems will hasnegative impact on treatment and research funding.  

As you stated in your email, eating disorders are grossly underfunded and access to treatment is problematic, all the while creating a huge economic burden. We vehemently agree and would love to partner with you to change that. 

We are happy to consult with you and play a role in helping to develop your strategy and future efforts. We have many Australian members who would be pleased to engage with you to bring the movement forward to facilitate much-needed progress in education and treatment services to the many affected and would like for you to consider an advisory committee that can provide feedback and influence the content of future awareness and fundraising campaigns.

Best regards,

International Eating Disorder Action

Eating Disorder Parent Support

Aussie Support Group for Parents of Children with an Eating Disorder

The Dirty Laundry Project

Beating Eating Disorders

Adults Supporting Peers n Recovery from Eating Disorders (ASPIRE)

References

Bailey AP, Parker AG, Colautti LA, Hart LM, Liu P, Hetrick SE. Mapping the evidence for the prevention and treatment of eating disorders in young people. Journal of eating disorders. 2014;2:5. 

Bulik, C.  International Conference on Eating Disorders, Academy for Eating Disorders, Plenary Presentation, Boston, Mass. 2015.

Cuijpers P. Examining the Effects of Prevention Programs on the Incidence of New Cases of Mental Disorders: The Lack of Statistical Power. American Journal of Psychiatry.2003; 160 (8): 1385-1391.

National Eating Disorders Collaboration Bulletin E-Bulletin #283.  http://www.nedc.com.au/e-bulletin-number-twenty-eight#article-one, 2014.

Pinhas L, McVet G, Walker K, Katzman D, Collier S. Trading health for a healthy weight: The unchartered side of healthy weights initiatives. Eating Disorders. 2013; 21 (2): 109-116.

Press Release: AED Releases Nine Truths About Eating Disorders. (n.d.). Retrieved June 8, 2015, from http://www.aedweb.org/web/index.php/25-press-releases/163-press-release-aed-releases-nine-truths-about-eating-disorders?quot;=

Carter, J. C., Stewart, D. A., Dunn, V. J. and Fairburn, C. G. (1997), Primary prevention of eating disorders: Might it do more harm than good?. Int. J. Eat. Disord., 22: 167–172. doi: 10.1002/(SICI)1098-108X(199709)22:2<167::AID-EAT8>3.0.CO;2D. http://onlinelibrary.wiley.com/doi/10.1002/(SICI)1098-108X(199709)22:2%3C167::AID-EAT8%3E3.0.CO;2-D/abstract

#TruthInAdvocacy: A REAL awareness campaign

Please join us in tweeting your "dis" photos to Butterfly at @bfoundation and to Helen Razer at @HelenRazer. Our hashtag for this is #TruthInAdvocacy & #DISnoBODY (Butterfly's hashtag for their campaign).

#TruthInAdvocacy: A REAL awareness campaign 

If you felt the earth shake beneath your feet recently, it may have been the sound of countless people standing to applaud this piece by Australian writer and presenter Helen Razer. She articulated beautifully the dialogue that takes place on a daily basis in the eating disorder community--and one far too many eating disorder advocacy groups are unwilling to actively listen to.

Referencing The Butterfly Foundation, Australia's leading ED advocacy organization, and their recent awareness/fundraising campaign, titled "Don't DIS My Appearance," and billed as "A cheeky campaign for a serious cause" it invited celebrities and others to paint their middle finger and donate money via purchasing a certain brand of nail polish or making donations, Razer had this to say:

It’s a high-profile, celebrity-studded effort that posits EDs as normal and as prevalent enough to ask us all to change our behaviour in order to prevent them.

To which our community of parents, those affected and clinicians and other advocates says, loudly and in unison:

YES, THAT'S IT! THAT'S WHAT WE'VE BEEN TRYING TO TELL YOU BUTTERFLY (AND MANY OTHER ORGS)! PLEASE LISTEN TO US!

More wisdom from Ms. Razer:

Depression, despite its lack of biomarkers and clear prevalence among those poor in social capital, is read as biological. Anorexia, despite great evidence of its biological basis, is read as social. And The Butterfly Foundation certainly overplays this by recommending being nice to people as a cure for death.

Many of us have reached out to Butterfly on numerous occasions with the following messages:

• Awareness campaigns like this provide a false and destructive "awareness"--that if a person has no body image issues he/she has no risk of an eating disorder and that eating disorders are preventable (there is as yet no conclusive evidence to support this assertion).
• Awareness campaigns like yours reinforce a societal perception that eating disorders are about choice and vanity.
• Awareness campaigns like yours impact research funding by diverting money from important research on the genetic and biological underpinnings of eating disorders to one very small portion of possible environmental cause (negative body image).
• Awareness/fundraising campaigns like yours make society assume "something" is being done about eating disorders when the truth is that worldwide, and certainly in Australia, nowhere near enough is being done to provide physician training on identifying eating disorders and access to treatment. 
• Awareness that anorexia is THE deadliest mental illness there is and that other eating disorders also carry serious medical and psychiatric complications.

What we hear back from Butterfly regarding these concerns is most often nothing and sometimes a dismissive "canned" response about how they understand eating disorders are biological and genetic, but we can't discount environmental influences. Too which we parents and patients say, TRUE! We are highly concerned about the environmental influence of rigid, school-based nutrition programs which place a heavy emphasis on good and bad foods and have been show to have the "unintended negative consequence" of triggering eating disorders in those genetically vulnerable. 

Sadly, we never get an awareness campaign based on anything but the erroneous ideas that eating disorders are caused by bullying and Photoshop. 

This time, we have decided we are speaking out about being "dissed" by Butterfly's ignoring the input of the very stakeholders they purport to speak for - those affected by eating disorders and their families. 

We are real people with real opinions based on real research . . . and we are demanding REAL awareness: anything less is definitely a "dis."

Please join us in tweeting your "dis" photos to Butterfly at @bfoundation and to Helen Razer at @HelenRazer. Our hashtag for this is #TruthInAdvocacy & #DISnoBODY

We are proud to partner with Eating Disorder Parent Support, The Dirty Laundry Project, ASPIRE and ED Bites - please raise your voice with us and ask for a halt to "cheeky" campaigns that hurt rather than help.