Why I Lobby (and Why You Should Too!)

Richmond, Virginia

By: Matt Wetsel

One of the Bills that the Eating Disorders Coalition (EDC) supports is the Federal Response to the Elimination of Eating Disorders, or the FREED Act. Sometimes people see that word ‘eliminate’ and ask us – do you really think that’s possible?  Well, here are the facts: We know recovery is possible. We know many of the warning signs for the onset of eating disorders. We have effective treatment models. So, those make you wonder…

Why, then, are eating disorders on the rise?
Why are people dying from them?
Why is it so hard to get help for an eating disorder?

Unfortunately, it’s complicated. Long before someone seeks help, there are a lot of barriers already in place. These often include:

1) Stigma. Although eating disorders are talked about by the general public more now than even just ten years ago, the average person still lacks significant understanding of the complicated nature of eating disorders, and the seriousness of the diseases.  The lack of understanding remains, in part, because eating disorder sufferers often try to keep their disease secret – those suffering from eating disorders go to many lengths to try and hide or cover up their behavior and try to appear ‘normal.’  It also doesn’t help that, many still view eating disorders as an “illogical problem.”  Despite increased discussion and awareness, it is still difficult for people who haven’t ever been close to someone with an eating disorder to understand how such a disorder develops and takes root, because many people still wonder, “Why would you choose to starve yourself? Why would you chose to throw up your food? Why don’t you just stop binging?”  To many, eating disorders don’t make logical sense.  These uninformed ideas and opinions about a disease that is anything but a choice, are reinforced by…

2) The Media/Pop Culture.  Just this past Thursday, going through the check-out lane I was greeted by a celebrity gossip magazine cover devoted to eating disorders (EDs). The cover consisted of a collage of emaciated models and actresses, along with a list of other celebrities covered in the issue, their various EDs, and the promise of lowest weights and caloric intake in the articles contained within. Anyone see the problems here?  The main problem is the myths purported.  First, they were only covering women.  Second, to have an eating disorder, you do not have to look emaciated.  Binge-eaters and compulsive overeaters typically aren’t underweight, and bulimics often seem to maintain (emphasis on “seem to”) what appears to be a healthy weight due to the way the body responds to purging activities. The magazine’s glamorization of emaciated celebrities misrepresented the breadth and variation of those who suffer eating disorders.  If the extreme portrayals exhibited in the magazine stories are all the general public ever sees or hears on eating disorders, then that makes early detection and prevention harder.  For people in a position to support someone with an ED, this media misrepresentation instills a bias before they even approach the subject, and makes it harder for people to take seriously. Speaking of taking it seriously…

3) Treatment Coverage. A recent Glamour article highlighted the fact that most doctor’s do not know how to diagnose eating disorders, including if the patient is underweight, whether slightly or grossly, or exhibiting signs and symptoms of bulimia or binge eating disorder.  Part of the reason why doctors don’t identify eating disorders in their patients is because they are undertrained in medical school, and they rely on pop culture to judge whether or not a patient has an eating disorder.  All too often patients have heard things like:

-“Well, you’re not that underweight, so you’re not anorexic.”

-“Just don’t let your diet get out of control.”

-“Hey –at least you’re not overweight!”

Unfortunately, appearances can be deceiving, and not even doctors are immune to the thin-is-healthy bias. This is further compounded by the lack of research done on eating disorders. To date, there have been no comprehensive, nationally representative studies on eating disorder prevalence. There is endless debate about the ‘cause’ of eating disorders, and almost as much debate about the best way to treat them.

Looking at what we’re up against, it’s pretty easy to feel discouraged. The good news is, there are already members of Congress, the individual advocates and the Member Organizations of the EDC and other organizations working to address these problems.

For starters, the EDC has partnered with Mothers Against Eating Disorders and The Alliance for Eating Disorder Awareness to put on the biggest event in EDC National Lobby Day (Lobby Day) history yet! On September 30, 2014 the Mothers and Other’s March (M.O.M.) Against ED will take place in Washington, DC. The day will conclude with the world premiere of America the Beautiful 3 (ATB3) and the filmmaker himself, Darryl Roberts.  The ATB film series has shed light on the many ways that the beauty industry contributes to the unhealthy relationships that so many people suffer with their body, and we’re thrilled to have him join us!

October 1, 2014 will see the EDC’s 26^th Lobby Day on Capitol Hill. We’re excited to continue advocating and gathering support for the FREED Act.  And, we’ll also be introducing new legislative initiatives around the Body Mass Index (BMI). 

So how can you get involved? For starters, join us for Lobby Day and the M.O.M March! Full details and registration can be found here:

http://www.marchagainsted.com/

Showing up in numbers on Capitol Hill, sharing our voices and collective message with Members of Congress and their really amazing staffers is ultimately the best way for us to advocate together and make change, but… If you can’t make it to DC for Lobby Day and the M.O.M. March but you still want to be a part of history, stay tuned to the EDC’s FB, Twitter and blog for how you can make a difference even if you’re not on the Hill with us that day. 

Whether in DC or supporting from a distance, we hope you’re as excited as we are about the upcoming events and Lobby Day efforts. It’s a chance to make a difference for millions of people and continue to advance a cause we all care so much about. That’s why I’ve been involved for the past seven years, and why I keep coming back. So please, join us however you’re able. See you soon!

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A Dad Shares About Lobby Day

August 4, 2014
Washington, DC

Artie Fox is a Board Member of +Alliance For Eating Disorder, an +Eating Disorders Coalition advocate and perhaps most importantly, he's a dad.       Artie graciously agreed to share his thoughts about Lobby Day in this guest blog.  Thank you, Artie --your advocacy means the world to us.

A Dad Shares About Lobby Day:

My daughter has struggled with an Eating Disorder for nine years. After going through the misery of suffering and meeting other families going through the same agony, I wanted to make a difference.

I joined the Board of The Alliance for Eating Disorders in Florida, in January, 2013. At one of my first meetings, I was informed about Lobby Day in Washington, D.C.

I attended my first Lobby Day in April 2013 and found it to be an incredible experience. We, as a group, do make a difference. We meet with various congressional  leaders, discussing many issues which include the FREED Act, as well as photo shopping and how it effects families and individuals with Eating Disorders.  A big part of Lobby day is the opportunity to meet with and socialize with others from around the country. Sharing each others experiences and ideas makes Lobby day extra special for me.

My hope is that every state is represented at EDC National Lobby Day and we do effect changes with the way Eating Disorders are perceived and treated, and eliminate the stigma attached to them.

Highlights From A Powerful Congressional Briefing

Nearly every seat in room "SVC 201-00" was filled yesterday with staffers from Capitol Hill who came to hear testimony about eating disorders at our Congressional briefing entitled, "Photo-shopping, Weight Stigma and Eating Disorders: What They Have in Common and Why They Matter."  The briefing was hosted by long-time friend of the EDC, Senator Tom Harkin (D-IA).

(L-R: Kathleen MacDonald, Rosie Buccellato, Allyson Kapin, Dr. Rachel Adatto, Lizabeth Wesley-Casella)

Allyson Kapin, Founder of Women Who Tech and the +Rad Campaign, offered her compelling presentation on photo-shopping, including a live demonstration during which she showed the audience how, with just a few clicks on a computer, a person can be completely and radically transformed.  You could hear audible comments like, "oh my gosh" and "no way" coming from audience members as Allyson gave one model 'six pack abs' with just one mouse-click. 

+Lizabeth Wesely-Casella, Founder of +BingeBehavior.com, focused her presentation on weight-stigma and weight-bias.  Not only did Lizabeth share her professional expertise on these two topics, but she weaved in Health At Every Size and also her personal experience with Binge Eating Disorder (BED).  Lizabeth's testimony offered a call to action for everyone in the audience to help eliminate weight stigma and weight bias.  And, she encouraged people to see the beauty of their body in its genetically natural shape and size versus suffering to live in a body defined by the beauty-standards of society.

Dr. Rachel Adatto, Former Member of the Israeli Parliament, presented on her country's success in passing legislation addressing photo-shopped pictures and the BMI of fashion models.  Her successful efforts enlightened the audience that the 'solution' to eating disorders needs to be multifaceted --from educating doctors and society to passing legislation.

+Rosie Buccellato shared her personal story and it was clear from the tears seen and the sniffles heard that Rosie's poignant testimony touched people deeply.  Rosie's eating disorder emerged when she was seven years old after she was fat-caliper and BMI tested in front of her 2nd grade class.  Though Rosie shared of the devastation she and her family suffered during the14 years the disease held a tight-grip on her mind, body and spirit, she also shared the success of her healing, "I am not yet completely recovered.  But for the first time in 14 years of suffering, I have one full solid year of recovery under my belt."

We concluded with "Q & A."  Audience members asked several important questions, including personal ones -indicating that they truly 'get it,' intellectually and emotionally, when it comes to the seriousness of eating disorders. 

The +Eating Disorders Coalition offers sincere gratitude to each of the speakers for their expertise, for the time and energy they put into preparing their speeches, for expenses they incurred, for time they took off of work and for the emotional energy they put into making the briefing a huge success.  We are humbled by your commitment to advocacy.

So what's next?

Yesterday's briefing served as a catalyst for further discussion. In the coming weeks I will be following-up with each of the attendees, to dialogue about how we can work together to address the epidemic of eating disorders plaguing the lives of too, too many.  Be sure to stay tuned for updates and ways that YOU can advocate with us. 

Yours from the Hill, ~Kathleen MacDonald, Policy & Communications Director



ps: Speeches, pictures and video will be posted shortly.

pps: You can already for this fall's EDC National Lobby Day which is in conjunction with the 1st ever M.O.M March on Capitol Hill! For all the details and to register, please visit: http://www.marchagainsted.com/2.html

What's Lobby Day? -- Reflections From a First-Time Advocate

 

 “Wear comfortable shoes.”

In April of 2014, I showed up for my first Lobby Day experience with the Eating Disorder Coalition excited, but not knowing quite what to expect.  Sure, the Coalition had sent us first-timers a precursory email saying, "Here's what to expect at Lobby Day…make sure you wear comfortable shoes!" but until you're smack in the midst of Lobby Day and you start realizing that the phrase “next building” means something very different on the vastness of Capitol Hill, you don’t appreciate what amazing advice that is. 

The last time I was in Washington, DC was during high school when I attended a summer debate camp.  I know.  I was super cool.  While most boys growing up a few blocks from Wrigley Field in Chicago might have dreams of playing baseball, my dreams were about reading memos, writing policy briefs and wearing power suits.  So I was definitely predisposed to at least finding lobby day interesting.  (Also I had just finished watching both seasons of House of Cards, so was having delusions of political grandeur that led me to determine I was not above a little blackmail or something if it came down to it because, you know, that’s how much I care.)

I’ve had the humbling privilege of working with people suffering from eating disorders for most of my career, including developing programs and providing education to families, professionals, and the community at large.  I’m very familiar with the frustration of trying to convey the understanding of eating disorders as disorders of pain, loneliness and shame, which we know they are, and not disorders of vanity or self-obsession, which we know they are not.  Even though I know there are a myriad of very complicated factors responsible for the development of eating disorders, I’ve also seen the very real damage to self-esteem that can occur via societally sanctioned messages about weight and size and the way that these messages can be propagated as well as created by the media.  These messages may not cause eating disorders per se, but they don’t help and they are harmful in other very real ways.  So I was eager to learn about the proposed bill and to experience the process of how lobbying works.

The training day started with meeting my cohort of fellow activists.  I cannot convey how moving and humbling it was to hear everyone’s stories and their reasons for being there.  From those who have lost someone close to them to this terrible illness, those who have themselves suffered, those who were there because they were passionate about educating others about the issues, to those of us who work with people suffering from eating disorders, it was evident how deeply committed everyone was.  Everyone understood the seriousness and impact of eating disorders, but more striking to me was that there was not a sense of hopelessness despite how difficult eating disorders can be to experience and to treat.  Everyone was there to DO something, not by using position or access or money, but by the profound and simple virtue of being a constituent and a citizen and taking the time to show up and “make the ask.”

It was this last piece that was a surprise and a revelation to me, namely the reminder that we have the responsibility and the power to use our voices, as individuals and as a group, to let our senators and representatives know the issues about which we care, and to demonstrate that care not by threats, invectives or game-playing, but rather by embodying this care by speaking with integrity and passion.  Even if there is a member who might not agree with you or who might not be willing to join you by supporting a particular measure, I have to believe that simply showing up and representing the millions of people affected by eating disorders made a difference.  Maybe our efforts help a staffer open her or his eyes to the impact of eating disorders, or someone who has known a friend or family member who struggled who appreciates that someone else cares as much as they do, or even someone who is her- or him-self struggling and hasn’t been able to acknowledge it.  Having people who have experienced it and their families, friends, and professionals come talk to them about the importance of these issues can make a sea change in others’ attitudes and understanding about eating disorders.     

As someone who often feels like I am spending most of my time vacillating between preaching to the choir or to the proverbial brick wall, I found myself leaving my first Lobby Day with a sense of renewed hope and a reminder of why we all do what we do. And I left reminded that when you’re trying to change a lot of people’s minds by knocking on a lot of people’s doors, you have got to be patient.  I was reminded that one voice matters, as does one willing ear.  And perhaps most importantly, I was reminded that the efforts of a few impassioned people can have a disproportionate impact, which is why I’m so grateful to be able to join the Eating Disorder Coalition again at their fall Lobby Day.  I’ll be the one wearing super comfortable shoes. 

Norman H. Kim, Ph.D.

National Director

Reasons Eating Disorder Center

The Seriousness of Eating Disorders

***Media Advisory***

Congressional Briefing on Seriousness of Eating Disorders

What:  The Eating Disorders Coalition for Research, Policy & Action (EDC) will hold a Congressional briefing for House and Senate staff to address the correlation between photo-shopped images and disordered eating and to raise awareness of the seriousness of eating disorders.  The briefing is hosted by the office of Senator Tom Harkin (IA), Chair of the Senate Health, Education, Labor and Pensions Committee.  Senator Harkin is a long-standing supporter of EDC advocates and their mission to bring federal attention to eating disorders.  Over several Congressional Sessions, Harkin was a lead co-sponsor of the Federal Response to Eliminate Eating Disorders Act (FREED Act). “Eating disorders such as anorexia nervosa and bulimia nervosa are widespread, insidious, and too often fatal.  Contrary to widespread beliefs, adolescent women are by no means the only people suffering from eating disorders; these diseases don’t discriminate by gender, race, income or age,” said Senator Harkin.  “We all have a responsibility to ensure that we undertake the necessary research, and provide the treatment and prevention that can help us beat eating disorders.”
Tremendous misperceptions about the severity of eating disorders influence the federal resources devoted to eating disorders, especially research funding.  Barriers to treatment, despite Mental Health Parity and the Affordable Care Act, continue to plague sufferers and their families, and people continue to die prematurely as a result.  At the time this media advisory goes to press, the news of another young woman's death from anorexia on July 17, 2014, is heavily on our hearts and minds.

Speakers:            

Dr. Rachel Adatto, Former member of Israeli Parliament (Knesset)

Rosie Buccellato, Person in Recovery

Allyson Kapin, Co-Founder of Rad Campaign and Founder of Women Who Tech

Kathleen MacDonald, Policy Director of the Eating Disorders Coalition

Lizabeth Wesely-Casella, Founder of BingeBehavior.com

     When:         Thursday, July 24, 2014 at 12:00 p.m. EST (a boxed lunch will be served)

     Where:      Senate Visitors Center (SVC) 201-00

     RSVP:        Pre-register by July 23, 2014. To register, please email:                                                                   manager@eatingdisorderscoalition.org

The Eating Disorders Coalition (EDC) is comprised of over 40 organizations and is dedicated to unifying the voice of America’s eating disorder organizations in order to raise Federal awareness of eating disorders .  Together with our member organizations and advocates, the EDC serves the over 30 million American's who suffer with eating disorders, the deadliest of all mental illnesses.

            EDC Advocate Voices: "I Stand for the FREED Act because..."

            Learn More: Facts About Eating Disorders

Media Contact: David Jaffe – djaffe@eatingdisorderscoalition.org or 202-543-9570

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