This October, I was fortunate enough to be able to travel to Washington DC for two full days of eating disorder community and advocacy events.
DAY ONE: BUILDING COMMUNITY
Day one began for me as I put the finishing touches on my introduction for F.E.A.S.T.’s Lunch & Learn with Dr. Mark Warren, Chief Medical Officer of the Emily Program. Dr. Warren gave a wonderful presentation to 37 guests over lunch on evidence-based practices, levels of care, and an impromptu discussion about HIPAA rules as they apply to mental health treatment.
Many of those attending the lunch already knew each other through F.E.A.S.T.’s “Around the Dinner Table” Forum and Facebook, but most had never met in person. Every time I see ED caregivers come together face-to-face, I am amazed by how bonds forged over distance and through tragedy and struggle can equal or surpass the strength of relationships born of time and togetherness.
After lunch, we joined with hundreds more parents, professionals and patients to attend the 2nd Annual M.O.M. #MarchAgainstED on the west lawn of the US Capitol. The ED Parent Advocate community is growing and for every one person who traveled to Washington DC, there are hundreds of us who are active in online groups, forums, and non-profit organizations. Effective advocacy requires a community voice, and it was wonderful to see members of different groups coming together, in person, for common goals.
Though chilly and threatening rain, the event brought families, professionals and patients from around the US (and the world) together to laugh, cry, dance (yes, there was a flash mob!), listen to speakers, tell their own stories and support each other.
Putting faces to the life and death concerns that families face every day, everywhere, is powerful. I was
touched by the posters with photos of loved-ones, not just because of the faces, but because of the care and focus that was involved in creating them - on-site - using only markers, glue, poster-board and messages of love.
DAY TWO: ADVOCACY & SHOWING UP
Day two began early, at Starbucks (where I ran into a fellow citizen lobbyist), and then on to the EDC Lobby Day Training. The Eating Disorder Coalition runs Lobby Days every year in the Fall and Spring. This time over 200 people registered and showed up for a full day of citizen lobbying to try and drum up support for the Anna Westin Act. It was the largest group ever at an EDC Lobby Day.
All the participants were divided into groups by state. We had an EDC trained leader and a list of appointments to keep with members of congress from our state. At each office, we were greeted by a congressional aid and invited to share our experiences and our reasons for supporting the Anna Westin Act. To me, the most important part of this act is the training component which uses existing NIMH and SAMHSA funds to provide “training for health professionals, school personnel, and the public to identify eating disorders, intervene early and prevent behaviors that may lead to eating disorders.”
One of the biggest barriers our children face is early identification, which can and should happen even before a child is brought into their doctor’s office by a worried parent. This training is so desperately needed to break down the myths about eating disorders and to identify dangerous eating and exercise behaviors that can seriously compromise the health of a growing child.
This was my second time lobbying on Capitol Hill, and the most important thing I have learned about citizen advocacy is that simply showing up is an effective and powerful tool. Showing up and speaking out isn’t easy, especially when families are exhausted from caregiving and isolated by stigma in their own communities. Yet even one personal story can create change as part of a collective voice of a community.
While I do not wish the pain and suffering of facing an eating disorder on anyone, I am grateful for the friends I have made around the world as my own family has struggled to support our daughter towards recovery. The comfort of knowing that there is a community out there ready to support me, and vice versa, is invaluable. By supporting each other, in groups, on a forum, or through advocacy makes a difference because it helps to build community and a community voice.
Look out world! The ED Parent Advocacy community is here and we are going places and making a