#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.