Eating Disorder Advocacy in Washington, DC – 4/17/13

I just got back from Washington, DC for another fantastic day of advocacy on Capitol Hill. I’ve been volunteering with the Eating Disorders Coalition (EDC) for six years now, and I’m honored every time to take part in it.

All photos courtesy of Jim Knapp unless noted.

The EDC advocates for legislative reform to better improve access to treatment, advance research, and educate both professionals and the public about eating disorders. If you or someone you know have ever had to seek treatment, then you know it’s often difficult. This is because of a complicated mix of disputes over diagnosis, established guidelines, and a misunderstanding of eating disorders.

Even though the American Psychiatric Association has compiled very specific and detailed guidelines for treatment, insurance companies have no obligation to follow them and often make up their own guidelines – which physicians often don’t have access to even while treating patients. So even if treatment is approved, it’s hard to know if it will be the kind of comprehensive treatment a particular patient needs.

Jeanine Cogan & Kathleen MacDonald. Jeanine is the EDC Policy Director. Kathleen is the former EDC Policy Assistant and now applies her expertise at Kantor & Kantor LLP.

The legislation the EDC is advocating for is called the Federal Response to the Elimination of Eating Disorders (FREED) Act, and it would help address these problems. It also contains provisions for helping medical professionals know what to look for and how to treat the specific physical health problems that can threaten the lives of eating disorder patients. You can read a full summary of the FREED Act here, along with some background and history here.

[Fun fact: the idea behind FREED, the elimination of eating disorders, was also the inspiration for my blog title!]

The EDC wouldn’t exist if not for the tireless work of the advocates who make up the organization. Spring 2013 marks the first event under the leadership of new EDC President Johanna S. Kandel, author of Life Beyond Your Eating Disorder. A common statement from first-time advocates is often: “What difference does my being here make?”

Well, Johanna came to Capitol Hill ten years ago to lobby with the EDC and got a meeting with her Congressional Representative, Ted Deutch. Their meeting educated him about eating disorders and their severity, as well as putting a human face on them. We can quote statistics all day long, but sometimes a personal testimony says more than amount of data.

Now in 2013, Representative Deutch is championing the FREED Act in the House of Representatives and has made eating disorders a priority during this Congressional session – and it’s all because of Johanna’s hard work and advocacy.

Johanna Kandel (far left) with EDC board members, guest speakers, and Ted Deutch.

Myself and Ted Deutch after the briefing. So grateful for his commitment to FREED & the EDC!
(Also, when did my hair get so long??)

I also want to say thanks to the offices that took the time to meet with the Virginia Team: Senator Mark Warner, Senator Tim Kaine, Representative Bobby Scott, and Representative Morgan Griffith. Virginia is already a leader on eating disorders with HB1406 establishing screenings in public schools, and I’m looking forward to Virginia carrying the torch and seeing our Congressional reps take up the cause!

Our next Lobby Day is September 18, 2013. Even if you can’t make it to DC, there are plenty of ways you can make a difference and advocate for FREED! Consider doing the following:

• contact the local offices for your Congressional Representatives in your district to meet with them and/or their staff
• write letters to their offices and share your own stories about how eating disorders have affected your lives, asking them to support FREED
• donate to the EDC to support their ability to advocate on Capitol Hill, or hold a fundraiser of your own

Shout-out t0 Kari Adams of The Kari Adams Show for making the trip to DC and cover the policy side of eating disorders! Below is an interview she did with Gail Schoenbach, the Executive Director of the F.R.E.E.D. Foundation and current EDC Treasurer, along with some other pictures from Lobby Day!

Some seriously perfect weather on Captiol Hill.

Ran into the Minnesota team on our way to the briefing! (Thanks Britt for the picture!)

Team Leader meeting at the reception the night before. So honored to be working with so many amazing people! Also, I’m the only one with my eyes closed.

EDC President Johanna Kandel introducing the next speaker at the Congressional Briefing.

Team leader brainstorming!

 

Myself and other advocates during the reception.

Full photo sets available on the EDC Facebook page. Videos from the briefing will be made online shortly. For past Lobby Day coverage and testimonials, click here to search for all posts tagged ‘FREED’.

So what are you waiting for? Come join us in Washington, DC and help us END eating disorders!

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Anorexia in Men on the Rise – Huffington Post Live Interview

Happy Eating Disorder Awareness Week! I had the pleasure of participating in a discussion on Huffington Post Live on eating disorders in men this past Thursday. I’m excited that they chose to highlight this subject during awareness week, and appreciate the thoughtful questions they had for everyone on the segment.

You can watch the full segment below, which includes a young man named Alberto De Leon in Chicago who is currently in recovery from an eating disorder; Margaret Johnson, the editor for HuffPost Women; Amanda Webster, an Australian mother who’s son developed anorexia in childhood; and Dr. Gregory Jantz, an eating disorder specialist in Seattle. You can watch the full video below:

You may notice that the title on the video says, “Manorexia on the Rise.” Well, I don’t care for that term one bit, and I’m happy to report that when I emailed my contact on the production team, they changed it on the main video page and wherever else it was possible. Unfortunately, it’s much harder to edit out of the video stream, but I want to extend my gratitude for the quick response they had in changing it where they could.

I’ve written about my disdain for that term in the past:

If you’ve been keeping up with me on here, you have probably heard me talk about “gender inclusivity.” I believe for ED treatment, research, and prevention to advance, it has to be fully inclusive and not just catered to the majority. I almost slipped through the cracks of the resources available to me during my own recovery because it was all designed for women, and I mourn for other boys and men who find themselves in similar circumstances.

I grimaced at the original title because taking a word like “anorexia” and altering it to reference EDs in men carries the implication that men experience it differently in some way – otherwise, they would just call it anorexia, right? …In short, it by default is not gender inclusive.

It won’t do us any good to take notice of how our recovery culture is feminized if we just turn around and make it gendered in the opposite direction. Eating disorders are, more than anything, a matter of public health concern.

Thanks again to Huffington Post Live for having me, and for responding to my request regarding the segment title so quickly. If more media outlets handled this issue with the same level of care, we’d all be the better for it.

Like this post? Stay up to date by ‘Liking’ my blog on Facebook, following me on Twitter or Tumblr, subscribe via email, or just leave me a comment to let me know what you think!

Quick Updates

Currently Listening: Murder by Death – Bitter Drink, Bitter Moon

It’s National Eating Disorder Awareness Week! Normally I try to have a ton of stuff to post and share, but life has been pretty crazy right now. If I did everything I wanted to do, I’d need about twelve more hours in the day and at least an eight day week!

Which is kind of a salient point for talking about NEDAW. Taking on more than you can handle or have time for can be a recipe for disaster, and I learned a long time ago that sometimes you just gotta let some things go.

Have you heard of NORMAL in Schools? They promote positive body image and eating disorder education  with a special focus on schools and universities. I’m now contributing to their blog about once a month, which means I will occasionally be dividing my writing between this site and theirs. My first post is about one of my favorite topics – gender inclusivity! It’s adapted in part from a seminar paper I worked on last year which discusses the gendering of eating disorder recovery culture:

Maybe you’ve never considered the idea that we have a gendered recovery culture. As a male who suffered from anorexia, though, I know it all too well. To create space and dialogue which is gender-inclusive means we need to examine the reasons that negative body image and eating disorders have historically been associated with women or regarded as a “women’s problem.” Given that it’s Eating Disorder Awareness Week, this seems a fitting topic. After all, we have a huge recovery culture which has a cursory awareness of eating disorders in males but rarely includes them in a visible way.
-from ‘What the Heck is Gender Inclusivity?‘

While you’re there, check out other great contributors like Robyn Farrell, Caroline Rothstein, Becky Henry, and Carolin Costyn! I must say, it’s seriously an honor to have my writing appearing alongside so many other awesome voices.

Stay tuned for more updates for NEDAW 2013. What are you doing this week to educate and advocate for eating disorders? For yourself?

2012 in Review

The New Year marks almost two years that my blog has been online. 2012 saw a lot of new visitors, and as I did last year, here are some of my favorite posts of 2012!

1) January 13, 2012: Smash Your Scale (And Anything Else Holding You Back!)
One of my favorite posts, and also one of my favorite stories to tell. The avatar for my blog (the smashed scale up in the corner) isn’t some stock photo – it’s actually the scale I smashed back in 2005 behind the alley of my first apartment.
“I can’t really understate how good it felt to smash that evil contraption. It was one of the biggest enablers of the eating disorder, and there was no way I could pretend that I was going to get better and still keep it around.”

2) February 6, 2012:

Fit, or Fitting In?

Well, this is an interesting follow-up to the ‘fitspo’ discussion last week. Sarah Robles, the top weight-lifter in America, is bound for the Olympics and can barely pay rent.

…And even though she’s the U.S.’s best chance at an Olympic medal, she’ll never get the fame or fortune that come so easily to her fellow athletes — in part because, at 5 feet, 10.5 inches and 275 pounds, she doesn’t fit the ideal of thin, toned athletic beauty.

“You can get that sponsorship if you’re a super-built guy or a girl who looks good in a bikini. But not if you’re a girl who’s built like a guy,” she says. The 23-year-old from California became the highest ranked weightlifter in the country last year after placing 11th at the world championships, beating out every male and female American on the roster. On her best day, she can lift more than 568 pounds — that’s roughly five IKEA couches, 65 gallons of milk, or one large adult male lion.
(full article)

The thing is, if you passed Sarah on the street, a lot of people might make assumptions about her health based on her height and weight, and I doubt anyone would assume she was an Olympic athlete. She’s a prime example as to why I can’t stand that ‘fitspo’ crap – it promotes very narrow ideas of health, fitness, and attractiveness. If ‘fitspo’ is about motivation to work out, why isn’t there any with Sarah Robles? After all, she’s pretty damn fit!

Eat healthy and work hard, and you might be on your way to the Olympics, just like Sarah Robles!

Uninspired

Hi, internet. Sorry I’ve been absent lately. I’m taking a summer class (for the first time in four years!) and, in addition to my regular job, it’s a lot of work. I’ll try to get posting again on a somewhat regular basis!

Currently listening: Have Heart - Songs to Scream at the Sun
Currently reading: Women and Politics

There’s something that has been bothering me lately. Around the time that Tumblr announced they would be actively screening and banning accounts & posts which promoted self-harm and eating disorders, I noticed a new trend.

Fitness Inspiration. Or, ‘fitspo’ for short. A little background: the type of stuff Tumblr was taking aim at (although how effectively they’ve implemented this policy is arguable) was content that actively promotes or encourages eating disordered behavior. Images of emaciated people, usually women, emphasizing characteristics of being extremely underweight that are circulated by “support” communities for eating disorders, but all they support is the continuation and reinforcement of life-threatening disorders.

The average person sees this crap and they are appropriately upset by it. However, it was quickly replaced by ‘fitspo’. This, it seems, is perfectly okay with the average person. Images of female athletes doing physically demanding activities, extreme yoga poses, or close-ups of some stomach muscles accompanied by some “motivational” captions.

On the surface, it may seem harmless enough, encouraging people to exercise and to eat well. Exercise is good, right? Food is good, right? As a runner, I can’t disagree with either of those sentiments. I enjoy exercising, I sleep better when I’m active, and I make sure to eat in a way that supports all the activity I do because I want to make sure I’m giving my body what it needs.

There are two things I don’t really ever look at, though: the mirror and the scale. Here’s why.

The Sun’s Always Rising in the Sky Somewhere

Currently Listening: Against Me!: The Disco Before the Breakdown

I recently talked about how punk rock and sobriety had a big effect on my life, and the appeal that punk had because of its foundational ideals of acceptance of all people. Black, white, gay, straight, fat, skinny – there wasn’t any room for to judge people over such superficial things.

That doesn’t mean people didn’t bring their own prejudices and insecurities into radical or punk communities. It’s easy to say, “We stand for this,” but being ‘not prejudiced’ against a given group or type of person isn’t as simple as saying you aren’t racist/homophobic/transphobic/sexist and then denying all responsibility when you end up doing or saying something which actually happens to be prejudiced.

That’s because not acting or thinking in prejudicial ways is a process that evolves as we erode our own ignorance. You can be well-intentioned in your ideas and words, but that doesn’t always mean you don’t do or say anything that isn’t offensive to someone – particularly something you have zero exposure to or experience with.

This week sees one well-known punk musician coming out in a very public way over a matter which will put a lot of these issues to the test. Tom Gabel of the band Against Me! (yeah, they spell it with an exclamation mark) has a six page interview in this week’s Rolling Stone coming out as transgendered. She (Tom) will be changing her name to Laura Jane Grace and doing hormone therapy. She and her wife will remain together. It’s all over the internet already, so I won’t bother repeating all the same details that are available everywhere else.

In Remembrance: Reanna’s Story

In my last post about Lobby Day, I mentioned a story shared at the Congressional Briefing by mother Tracy Smith, who’s daughter Reanna died from her eating disorder while waiting for treatment. Tracy has agreed to let me share her testimony here to further spread the truth about the severity and life threatening reality of eating disorders. I’m deeply grateful to Tracy for her courage and willingness to share this story, and hope that others will learn from it. 

Please note that some of the specifics regarding her daughter’s death may be difficult to hear and are rather emotional, and if you are in recovery from an eating disorder, please take care of yourself while reading.

The following speech was given by Tracy Smith on Capitol Hill on April 24, 2012, at a Congressional Briefing held by the Eating Disorders Coalition as testimony to advocate for the passage of the Federal Response to Eliminate Eating Disorders (FREED) Act.

Tracy Smith testifies on behalf of her daughter.

It has been seventeen months since my baby was taken.

My Family has been devastated by an eating disorder in the worst way possible. On Nov 15, 2010, my Daughter lost her life to an eating disorder. In less than twenty-three months this disease came into our lives and took over my child. Physically, mentally emotionally and in every aspect that you can imagine. Due to misdiagnoses by her pediatrician, lack of education and no coverage for her condition by medical insurance we were alone in the very short battle!

This is Reanna Yvette’s Story.

Eating Disorders Coalition Spring Lobby Day 2012!

Do you know what the FREED Act is? It’s the Federal Response to the Elimination of Eating Disorders, and it’s a bill that we need YOUR help to pass.

For over a decade, the Eating Disorders Coalition (EDC) has been active on Capitol Hill working with the federal government to help make eating disorders a federal health priority. With the highest mortality rate of any mental health disorder, we need a bill like the FREED Act to help those who suffer from eating disorders get the help they need and deserve.

I’ve been volunteering with the EDC for 5 years now, and am currently a Junior Board member. Sometimes people ask me if I really think lobbying is worth it because of how complicated and partisan politics can be. I’ll admit, it can be discouraging. But those in office really do pay attention and listen to people who take time out of their lives to come and discuss issues with them. There’s so much misinformation out there about eating disorders that we need people who have had real-world experience with them to come and educate lawmakers. Putting a face and a name to a real story goes a lot farther than any statistics, no matter how shocking or upsetting they might be.

The Unlikely Connection Between Punk Rock, Sobriety, and Eating Disorders

Currently Reading: Zen Mind, Beginner’s Mind by Suzuki Roshi
Currently Listening: Minor Threat’s Complete Discography

Along with people being surprised that I used to have an eating disorder (“Really? You?”), I also get surprised reactions when I tell people I don’t drink.

“Really? Never?”

Nope. When I was 15, some of my friends started experimenting with drugs and sneaking downtown to parties to drink with older friends. I didn’t share their intrinsic interest in trying these things, but eventually went along and participated a few times because I was starting to feel left out. My lack of interest in substance use often translated into not being invited to hang out, because people knew I didn’t want to be around it.

After a few times giving it a shot, I decided I really had no desire to ever partake in any of it. I didn’t like not feeling like myself, and I didn’t like the way people acted when they were intoxicated. For a little while, this made me feel like an outcast. I think some of my friends felt judged by my decision, which wasn’t intentional but was sort of unavoidable.