Our Voices and Stories Matter: What Lobby Day Means to Me

by Carmen Cool

The thread that runs through all of the work I’ve done in my life is “advocate”.  It’s who I am and it’s what I do.

I have been to many Lobby Days with the Eating Disorders Coalition (EDC).  When I am there, I bring several distinct perspectives:  I am a recovered person, a psychotherapist who works with eating disorders, a woman whose sister has died from an eating disorder, and an educator who trains young people to do eating disorder prevention work in their schools.

As a feminist therapist, I believe that work has to be done at both the individual and collective level – because eating disorders are not not just a personal problem. In addition to individual work,  I want – no, I need – to do work at the social and policy level so that there are systems in place to support those people I work with.  I still get nervous when I “speak truth to power.”  I still have that voice that whispers (or screams, depending on the day) “who do you think you are?” 

What I learned that very first time was that our Representatives and Senators want to hear from us. They need us, actually. There’s no way that they can know about all the concerns and issues that are out there unless we tell them. Our stories and our voices matter.

It is important to me to use my voice to advocate for my clients. For myself. To support youth in raising their voices and changing the norms that value one body type over another. When I go to DC to lobby, I get the opportunity to take a stand and do all of that.

Carmen (front row, center) with her teen
Body Revolution Advocates

I’ve taken a group of teenagers every time I’ve gone to lobby. This has touched me in so many ways. I love to watch them sit a little taller as they realize they have something to say. I love to listen to their voices shake as they sit in a Senator’s office and then even out as they find their center. And I love to witness their resolve to keep being involved and work for something they believe in.

On top of all that, we get to explore DC! That means Georgetown cupcakes, visits to Monuments and Memorials, late night sharing circles, going the wrong way on the Metro, and jars of hazelnut praline spread from Le Pain Quotidien. But also blisters, giggles when the elevator doors open to reveal cute staffers- all part of what makes our trips fun!  Hearing them say “I have never felt so powerful in my whole life,” after lobbying - that is what keeps me coming back.

To use your voice, be listened to and taken seriously, and the lived experience of knowing that your voice can impact change – that is worth gold. Please join us September 30 and October 1 for the M.O.M. March and the 26th EDC Lobby Day! For more information and registration, visit www.marchagainsted.com.

Who My Daughters Will Become: Reflections on Lobby Day, Advocacy, and Motherhood

Liz and her daughter Genevieve 

by Liz Neaton

Though I had spent several years working in politics in Washington, D.C., the first day I walked into the office of Representative Keith Ellison (D-Minn) for The Eating Disorder Coalition’s (EDC) Lobby Day, I felt like I truly had the ability to make a difference.

I started participating in Lobby Day in 2009. At that time, I never knew just how much it would change me. That year, I heard compelling stories of both recovery and loss with eating disorders.

Loss… that resonated with me.

I had never met anyone who had lost someone to an eating disorder. Here I was, just starting out in my own journey of recovery from the monsters of Anorexia Nervosa and Bulimia Nervosa that had plagued me for the past fourteen years. This was exactly what I needed to hear and it was exactly the moment I needed to hear it.

That first Lobby Day renewed my dedication to recovery. I didn’t want to be another name that was lost to an eating disorder. I didn’t want my parents standing at the podium during a congressional briefing telling my story with tear-filled eyes.

After that year, Lobby Day was like a magnet that sucked me in. Each time, I heard compelling stories of individual trials and tribulations with one common theme: eating disorders lack proper funding, education and access to treatment. A fire was lit underneath me at Lobby Day. I started speaking about my own journey to recovery at high schools, colleges and civic groups. I started contacting my legislative officials on at the local, state and federal level to inform them of the lack of proper funding, education and treatment of eating disorders.

Then, in 2011, I had a daughter of my own – Genevieve. As a single mother, I knew that I needed a safety net if anything should ever happen to me. So, I attempted to get life insurance. I was denied seven times. I’ve kept every denial letter and they all say the same thing: “denial based on history of depression, anxiety and an eating disorder.” Even though I was in a strong recovery program, my past eating disorder was following me. Now it was not just affecting me; it was affecting my daughter. When my daughter was six months old, I brought her with me to Lobby Day. I thought that I should start her advocacy career young. To this day l believe she is the youngest to advocate for the Federal Response to Eliminate Eating Disorders (FREED) Act and eating disorder legislation with the EDC.

Since 2011, I’ve had another daughter. That’s why this upcoming Lobby Day and the March Against Eating Disorders are both so important. 

When I look at my daughters, I see their beauty and potential.

I think about who they will become.

I encourage them and remind them that they can do anything.

Most importantly, I tell them they are beautiful every day. I write it on the mirror so it is the first thing they see in the morning. The last thing I want is for my daughters to endure the struggle I had endured for fourteen years. I want them to love their bodies and realize how perfectly created they are. I don’t have a crystal ball and I can’t say for sure that one of my daughters won’t develop an eating disorder. I can’t say for sure they will love their bodies. In fact, the statistics are against me. But I can show them through my tireless advocacy and, most importantly, by my example that their beauty and worth does not come from anything outside of themselves. Their beauty is from the simple fact that they are alive. They are present and they are able to live their lives. I will continue to come to Lobby Days until we never have to hear the words “eating disorder.” Until no more lives are lost to this terrible disease. Until proper treatment, funding and education are implemented.

I hope you’ll join me in September!

The EDC's youngest advocate joins EDC staff
in the House of Representatives.

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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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

Great Letter from Advocate

Hi everyone --below is a letter from EDC advocate Rebekkah, to her Representative (Member of Congress in the House). Please take a look at her letter to see an example of how to personalize the Eating Disorders Coalition's "sample letter". We're looking forward to receiving many more cc'd letters in our inbox. We need millions more to write in if we want to pass the FREED Act. 
Go to: http://www.eatingdisorderscoalition.org/letter-writing-campaign.htm
for information on how you can write a letter, too! ~ Thank you, the EDC


____________________________________________________________________

Dear Congressman Heck,

As a constituent of your district who has personally suffered from the living hell of an eating disorder, I am writing today to ask you to cosponsor the Federal Response to Eliminate Eating Disorders Act, (the FREED Act, H.R. 1448). The FREED Act is the first comprehensive bill in the history of Congress to address eating disorders. The FREED Act focuses on research, treatment, education and prevention of eating disorders and
serves as a beacon of hope for the millions of people in our country  currently suffering from binge eating disorder, anorexia, bulimia, and eating disorder not otherwise specified (EDNOS).

Estimates suggest that more than 11 million Americans suffer from eating disorders.  I am one of them.  I am one of those girls who lost herself, and almost her life.  More than once, I ended up in the hospital from
electrolyte imbalances and blood work that told the ER doctors that my  heart shouldn’t be beating.  More than once, I prayed and hoped that my heart would, in fact, stop beating.  And without recovery, without the
extensive treatment I had, those prayers would have been answered. 

I can write to you today because of the treatment I received.  In a month and a half I will be graduating law school, because of the treatment I  received.  Everyday I enjoy friendships and gratitude, because of the
treatment I received.  I am alive today because of the treatment I received.

Eating disorders affect every single system of the body and are associated  with serious medical complications including cardiac arrhythmia, cognitive  impairment, osteoporosis, infertility, heart failure and death. In fact,
left untreated anorexia nervosa has the highest death rate of all mental disorders, upwards of 20%. However, when a person suffering from anorexia  receives proper treatment, the death rate falls to between 2-3%.

Research demonstrates that eating disorders CAN be successfully overcome when early detection and adequate and appropriate treatment take place.  And I write to you as verification of that fact!
Unfortunately, at this point in time, eating disorders are all too often  undiagnosed or completely misdiagnosed by health professionals, and access to treatment is limited. Less than 1/2 of all people with eating disorders
receive the treatment they both need and deserve. The FREED Act will save lives by providing for better access to proper  treatment, research dollars to understand the etiology and effective  treatment of eating disorders, grant programs to ensure more medical health  professionals and school personnel be trained on eating disorders prevention and treatment, as well as PSA's to broaden awareness of eating disorders.

Currently the FREED Act has bipartisan support. I ask that you sign on today as a cosponsor of the FREED Act (HR 1448), as a cosponsor of hope, as this bill has the ability to save thousands of lives.  I have vowed to never be an eating disorder death statistic: please help ensure that same  promise, for the thousands of others who are suffering!

I look forward to hearing from you soon.

Graciously yours,   Rebekkah Beth Bodoff


picture courtesy of: photobucket.com/