This past Lobby Day with the Eating Disorders Coalition, Kari Adams of The Kari Adams Show joined us to check out the policy side of the fight against eating disorders. Already a big advocate for positive body image and self-acceptance, Kari was a great fit w/ the EDC. She interviewed a few advocates that were in town, including EDC President Johanna Kandel. Check out the videos below to get a feel for what drives EDC volunteers, why we’re passionate about eating disorders, and what keeps us coming back to Capitol Hill to promote change:
Suzanne Lewandowski is the founder of the Eating Disorders Collaborative of Massachusetts and a current Junior Board member of the Eating Disorders Coalition.
Seda is the founder of the Cambridge Eating Disorder Center, which offers a spectrum of recovery services including residential and outpatient programs.
Gail is recovered from an eating disorder and the founder of the F.R.E.E.D. Foundation, a fundraiser for treatment scholarships. You can read more about Gail and the foundation here.
We actually don’t know who this guy is. I hear they found him wandering aimlessly around the House of Representatives, clearly sleep-deprived and mumbling something about locating the nearest Metro stop.
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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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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.
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.
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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?
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.”
Now that the holidays are here, I can breathe a little easier. I’m lucky that my job is at a university, which happens to shut down for almost two whole weeks over the holidays! Which means it’s time to get around to updating this page!
Holidays used to be a big challenge for me. Being around family, having food prepared for you or going out to restaurants you aren’t used to, your whole schedule thrown off… sometimes that chance to relax is actually more stressful than your day-to-day. Over the years I learned that it’s the times when you’re challenged that it’s most important to stick to what works for you and put recovery first.
Maybe you want to get out of going to that restaurant, or just make excuses to avoid meals with other people all together. But I think the best gift you can give to yourself is to do things for you and not whatever negative voice in your head might tell you otherwise. Sure, it’s easier said than done, but recovery is something you do, meal by meal, day by day.
If you’re working, in school, or both, the holidays (basically all of November and December, if you’re anything like the average American!) can just add stress and make it harder to focus on taking care of yourself. But those are the times when it’s the absolute most important to maintain healthy choices and self-care. When you find yourself overwhelmed, where you do go for a breath of fresh air?
If you’ve struggled with an ED in the past, odds are that one of the reflexive reactions is to slip back into those kinds of patterns. That’s why it’s really important to have a plan for taking good care of yourself. Having a few friends who understand where you’re coming from that you know you can call in the moment when you’re struggling can go a long way. Why not go for a walk, a drive, a bike ride? Call a friend?
We all need a breath of fresh air sometimes. The question is, where do you go to get it? Do you turn back to old habits, or do you seek out new ways of dealing?
When you’re in the moment and all that anxiety about food feels so overpowering, it’s easy to feel as though there’s no other option but to engage in disordered eating behavior. But the best gift you can give to yourself, no matter what holiday you may or may not celebrate, is the gift of self-nurturance and self-care.
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In case you missed it last night, I had a last-minute invitation by the Huffington Post to join a discussion on the public perception of eating disorders! Also featured in the video are Claire Glass, a blogger who recently shared a story about her grandmtother’s life-long eating disorder, and two treatment professionals, Kim Dennis and Laura Discipio.
You can watch below:
Claire’s story is particularly moving and important, since, along with people “like me” who don’t fit the stereotypical perception of who can have an eating disorder, elderly people are often underrepresented or invisible in the conversation. You can read the full write-up about her grandmother here.
Special thanks to Jenny Churchill and everyone at Huffington Post Live for handling this subject so seriously and taking the time to talk about it! Responsible journalism is incredibly important when talking about eating disorders, because it’s already such a sensitive subject that it can be easy to make sensationalist stories which have shock value but lack substance. Both for this segment and another article I was interviewed for last year, they have an excellent track record!
PS – I’m on Google+ now. I don’t quite get it yet, but don’t let that stop you from adding me to your circles or squares.
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Currently Reading: Feminism is for Everybody by bell hooks
Currently listening: Handwritten by The Gaslight Anthem
Sometimes beauty is skin deep – like when it comes in the form of beautiful artwork commemorating a commitment to being healthy and happy through the work of recovery. My own recovery tattoo got me thinking – who else out there has some sweet recovery art? I’ll start us off, and then I’m excited to share some of the really great reader submissions that I received!
My Own Recovery Tattoo:
My recovery tattoo was my first tattoo. I got it over the summer of 2005, when I was 22 and had been in recovery for about two years. February of that year, I smashed the scale I had been using in the alley behind my first apartment with a triumphant and cathartic anger (the avatar for my blog, Twitter, etc. is an actual photo of my smashed scale!). The scale had become a physical representation of the otherwise invisible tormentor known as anorexia, an altar upon which my self-worth was constantly debated. I had been making strides in recovery and was doing very well, but I kept coming back to the scale. In February 2005, I hadn’t weighed myself in months. I came across it, and, in a moment of weakness and curiosity, stepped back on it.
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!
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.
Welcome to my blog! My name is Matt Wetsel and I'm a Richmond, VA based eating disorder writer and activist. Recovered from anorexia, I'm committed to educating people about eating disorders, challenging body image standards, and questioning gender constructs as they relate to mental health and the way we regard our bodies.
