NEDA 2009 Presentation: Social Media for Social Change

I had such a wonderful time speaking at the National Eating Disorder Association Conference last weekend in Minneapolis! Thank you to the NEDA staff, volunteers and fellow attendees. I met so many fantastic allies, I’m very excited to help them in their endeavors and collaborate on new projects.

Online eating disorder activists Jill Sharpe, Kendra Sebellius, Shannon Cutts, Brie Widaman, Rachael Stern and Julie Neumann at NEDA 2009.

Online eating disorder activists Jill Sharpe, Kendra Sebellius, Shannon Cutts, Brie Widaman, Rachael Stern and Julie Neumann at NEDA 2009.

Below is the PowerPoint from my session, Social Media for Social Change: Connecting Activists and Raising Awareness Online. Hopefully everyone walked away with new ideas and practical tools, ready to put social media to work for eating disorder advocacy and awareness. If you have any questions, feel free to leave a comment or send me an email, and don’t forget to connect with me on Facebook and Twitter.


List: Eating Disorder Activists on Twitter

To  encourage community and spread awareness, I’m building a starter list of people who actively post about eating disorders on Twitter. This is an ongoing project. Though I would like it to be comprehensive, I know it isn’t yet, and it probably never will be. If you aren’t on the list but want to be, leave a comment here or send a direct message to @julie_anna on Twitter. Likewise, if you are on the list but don’t want to be, or you object to your categorization, just let me know.

Writers Raising Awareness

Awareness & Support Organizations

Professional Treatment

Up & Coming TwEDers

Twitter Guide for Eating Disorder Activists


I’m thrilled that so many eating disorder activists are joining Twitter. I’ve been following EDs across the Internet since 1996, experiencing the glory days of pro-ana websites, and this is the first time I’ve seen awareness keep up with the illness online. Help keep the momentum going and make a difference!

To understand the power and utility of Twitter, you just need to jump in and participate. It’s really that simple. But I understand microblogging 140 characters at a time is a strange concept, and Twitter isn’t your typical social network, so I’ve collected the basics to help you get you started.

Be a follower. Start by following me @julie_anna, because you have to start somewhere, right? Go through the list of people I follow, find the ones related to eating disorders that you like  and add them as well. Twitter appears completely useless until you build a community. You can’t effectively have conversations, learn new things and share information when you only follow a dozen people.

This is by no means a comprehensive list, that will be in another post, but here are some more ED and body image tweeps to get you going: @edbites, @edrecovery, @EDNMaryland, @frozenoranges, @illusionists, @lola_snow, @RevoltRealWomen, @thefwordblog and many more.

When you follow someone, it doesn’t mean they have to follow you back, but adding them does act as an introduction. If you share relevant interests and actively participate, it’s likely they’ll add you as a friend. Get to know these people. Read and respond to their tweets. You’ll be surprised at what happens.

What should you be posting? It depends on what sort of ED activist you are. Some people post recovery tips and musings. Others promote events, programs and professional services.  And many pass around links to new stories and breaking research. Just make your Twitter presence personal and interactive. Try to post often enough to be relevant but not so much that you overwhelm your followers. There is no right or wrong way to tweet, so do what feels right and change things up if it isn’t working for you.

Understanding the Twitter vocabulary will help you engage your readers and get the most out of the site, so here’s what all those strange abbreviations and characters mean:

  • @ – When you reply to someone, the tweet will start with @ plus their name. But you can insert this anywhere in a post and it will create a direct link to that user. Then they’ll get an alert letting them know you’ve included them in a post.
  • DM – Direct Message. These are private messages that don’t show up in your public stream. It’s the best way to share sensitive and personal information since anyone can read your regular tweets.
  • RT – Retweet. which means you’ve copied the post or link from another person. It’s common courtesy to reply to the original poster as well, so it looks like RT @julie_anna Being bulimic really sucked.
  • # – Hashtags seem to be the most confusing part of Twitter for new users. Like tags on a blog post, they allow people to designate the main subject of their tweet so other people can find it more easily. They also act as convenient shorthand. They are especially popular for events (#sxsw), news (#teaparty) and Twitter trends (#followfriday).
  • Funky looking URLs – I’ll go over this in the next installment of the ED Twitter guide, but basically people use URL shorteners like and tinyurl so they can insert useful links without wasting characters.

It’s sort of ironic that it takes multiple blog post to explain a site that only lets you post 140 characters at a time, but this should be enough to get you started.

Archives – Valerie Bertinelli and the Bikini Body Disorder

Like baseball and BBQs, attaining the perfect bikini body has evolved into an all-American pastime. Starting with spring break and extending through Labor Day, women and girls across the country strive to lose weight, tone their tummies and find a flattering swimsuit. We must earn our fun in the sun with a suitable figure.

Our nation is once again in the grips of bikini body disorder. So People magazine is patting itself on the back for putting a 48-year-old TV star in a two-piece bathing suit on the cover. And while this editorial decision does challenge one ideal, the article staunchly supports another. The Valerie Bertinelli story is merely a glorification of weight loss. Thanks to a rigid diet and exercise routine, the actress was able to whittle her figure down to a stereotypically accepted size 6. Apparently middle aged women can be sexy, but they have to drop 50 pounds first.

This wasn’t Bertinelli’s first People cover. In April 2007, she earned that honor for her public declaration to slim down. “I need to do this in front of millions of people so I can’t mess up,” Bertinelli said. “It is freeing because I can say it first: I know what you’re thinking – I’m fat.” According to the current issue, she rarely made public appearances at her high weight of 172 pounds. This is obviously a woman with serious body image issues. But two years and a Jenny Craig endorsement later, she’s bearing it all on the beach, promoting herself as a health and weight-loss activist.

Because age is one of the ways our society discriminates against women’s bodies, the story initially appears inspirational. “A bikini? I’m too old for bikinis!” cries Bertinelli. “Then I realized, Wait a minute. Why not a bikini?”

But the article quickly devolves into a glorified diet ad. At times, it goes a step further, eerily echoing eating disorder rhetoric. “I’m just one jalapeno popper away from being 40 lbs. heavier again,” says Bertinelli. She adds that every time she looks in the mirror, “My eyes go immediately to the parts I don’t like, the jiggly bits.”

This type of story reinforces extreme dieting and negative body image. Bertinelli claims, “We all just need to appreciate our bodies for what they are, jiggly bits and all.” Yet she could not do that herself. Not only did she diet down to 132 pounds in nine months, she got down to 123 for the photo shoot, hiring a personal trainer and restricting her calories to rock bottom levels. Now she vows to “stay vigilant” and keep working on her waistline.

Far from a tale of body acceptance, Bertinelli’s bikini quest exemplifies our twisted obsession with losing weight. It supports the cliché that no matter how old you are, no matter how much you’ve accomplished professionally or personally, there is always room for improvement. And for American women, that improvement starts on the scale.