The Power of Advocacy & Activism in the Eating Disorder Field: Mental Health Action Day - May 19th, 2022
Written by Serena Nangia
I identify as an activist and an advocate to my core. Having essentially grown up surrounded by what we call “the eating disorder field,” I have a deep understanding of what it means to take real action for mental health initiatives. Raising awareness about eating disorders is a great step - but it is not the only step that needs to occur. Action - true action - means taking the time to think carefully, putting in the effort to talk to industry decision-makers and your legislators, and standing up for what you believe in, even if those beliefs are not widely held.
When it comes to mental health crises, it is difficult being one individual in the midst of systemic issues that feel insurmountable; it feels impossible to make change. This was a struggle I faced at the age of 14, when I first officially advocated, and continues to be a personal struggle over a decade later. However, as I opened myself up to our community, I found others who felt the same. The Eating Disorders Coalition helped me find a place where I can make change. The Eating Disorders Coalition is a national coalition of eating disorder providers, researchers, organizations, and loved ones of people with eating disorders working to improve policies to research, prevent, intervene, and treat eating disorders.
Through my advocacy as a constituent, I can push forward legislation on the issues that are important to me in my local community, but I can also do so as a group within the federal systems.
My friends at the Eating Disorders Coalition understand the importance of individual advocacy in our systems. "Constituents' voices are the most powerful voices in the legislative process," said Emily Rosenberg, Government Relations Representative for the Eating Disorders Coalition. "We are fortunate to have a democratic system that allows all citizens the right to advocate. The Eating Disorders Coalition relies heavily on our advocates to help push legislation forward, as we know their stories and knowledge are invaluable. Constituents' persistence in educating Members of Congress helps ensure funding and programs are directed towards eating disorders." It has been my absolute pleasure to participate in EDC Hill Advocacy Day regularly for the past four years, once in-person on Capitol Hill (before the pandemic) and three times virtually.
While the power of taking action does not always feel good or comfortable, advocating with my peers, mentors, and heroes in the eating disorder field has been one of the best experiences of my life.
Sharing my story as the older sister of an eating disorder survivor has always been and continues to be the driving force behind my work in the field. In 2021, I had the honor of advocating with Kitty Westin, Director Emeritus of the Eating Disorders Coalition. Kitty, like me, has a story that fuels her. When asked to write about the impact of advocacy, she said this:
“There is no doubt in my mind that grassroots advocacy is an effective way to make meaningful change happen. 22 years ago, after my daughter Anna Westin died from an eating disorder, I took a leap of faith and followed a path that eventually led me right up the steps of the White House. The journey was sometimes exceedingly painful and at other times filled with laughter and joy. I admit that the path was often hard to navigate but I never felt alone and I always knew that there were amazing fellow travelers in front, beside and behind me.”
Kitty’s story is only one of hundreds that I’ve heard in my eight years of eating disorder advocacy, but it’s not just any story. Kitty continues, “Grassroots advocacy led to the passage of the Anna Westin Act in 2016; the first Federal legislation in the history of Congress to specifically help the eating disorder community. Passing the Anna Westin Act would never have happened without hundreds of grassroots advocates from across the U.S. working tirelessly to educate Representatives and Senators about eating disorders. When I watched President Obama sign the Anna Westin Act into law I was humbled and privileged to be the one in the room, representing my fellow advocates and being the voice for the millions who struggle with eating disorders. I was keenly aware that each and every advocate deserved credit that day.”
I, like many other Zillenials, feel discouraged by the overall direction our world is heading, despite the fantastic growth that continues to happen every day in separate sectors. The fact that one social media platform makes over $230 million every year from pro-eating disorder content provides me no comfort, as I see that content through the eyes of my future child. However, stories like Kitty’s and legislative advocacy through the Eating Disorders Coalition make me a smidge more hopeful. Legislators have a lot of power, and therefore a lot of responsibility, to protect us against the facets of our society that create, encourage, and exacerbate eating disorders.
Our voices as individuals make it far more possible that legislation like the Kids’ Online Safety Act and the Anna Westin Legacy Act will be passed in the near future.
I find comfort and hope in knowing that I have made it this far. When I was 14 years old in a small basement room speaking to my district’s School Board, I never expected to be 24 and have made as much of an impact as I already have done today. I was told on that day by the President of the Board that I “wouldn’t make a difference.” What I remembered in that moment was something my parents had told me, summed up perfectly in this quote from John F. Kennedy: “There are risks and costs to action. But they are far less than the long range risks of comfortable inaction.”
I fuel my work for those suffering from eating disorders through that sentiment, coupled with a final reminder from Kitty Westin: “Never underestimate the power of your voice; your voice, combined with a multitude of voices, truly can change the world.”
Serena Nangia (she/her) is a Body Activist, long-time advocate for eating disorder recovery, and Project HEAL’s Marketing and Communications Manager. Serena has spent close to a decade building expertise on the way body image, media, and eating disorders affect people’s daily lives, as well as how Fatphobia and weight stigma create issues of access and discrimination systemically and interpersonally. Serena is a self-identifying Fat person and knows first-hand the difficulties that under-represented folks face in getting access to treatment and equitable healthcare. In order to combat the fatphobic and archaic systems preventing folks from getting the care they need, she became deeply involved in the eating disorder community and actively works to elevate diverse voices of People of Color and Fat people. Serena’s inspiration comes from her sister, Ellen, who struggled with an eating disorder for over a decade and is now in long-term recovery.
