The power of advocacy

How Kitty channeled grief into creating the Anna Westin Act

Guest diarist: Kitty Westin

Did it really happen? Was I in the United States Senate Chamber when they overwhelmingly passed the 21st Century Cures Act with the Anna Westin Act included? Was I in the room when President Obama signed the bill into law on December 13? Am I having a dream and will I wake up and find that none of it really happened? Honestly, I am having trouble believing that the Eating Disorders Coalition with the support of our member organizations and after hundreds of meetings and thousands of communications with Congress we passed eating disorders specific legislation for the first time in the history of the US Congress!

A dream

I have had a dream for 17 years. My dream and journey began the day my daughter, Anna, died from an eating disorder. I was in excruciating pain and I had no idea how to survive without by beloved Anna. I had trouble envisioning a future without her but I instinctively knew that I had to find a way to survive and transform the horror of her death into something positive. I started down a path that had no clear direction; there was no map or compass to show me the way. I blindly set out trusting that eventually the journey would evolve and the destination would become clear.

A path

Gradually I understood that the path I was on was leading to Washington, D.C. and to the halls of Congress. It did not take long for others to join the march toward Washington and soon there were thousands of people determined to take their stories to policy makers and ask for Federal legislation to address the multitude of issues those affected by eating disorders face.

A team

The journey was often messy and frustrating and hard. There were many times that I felt hopeless and wondered if we would ever be successful. There was much I needed to learn and many roadblocks to overcome. Passing Federal legislation involves hundreds of meetings and extreme patience. It involves being able to compromise and negotiate. It involves persistence and the determination to never, ever give up. It involves building bridges and connecting with people all along the way who are willing to help. And, in the end, it involves letting go and trusting others because we could only take our bill so far. The language from the Anna Westin Act would not have become law without Members of Congress who willingly picked up the burden and found a way to take it across the finish line. Passing the language from the Anna Westin Act was truly a team effort, thousands helped us get to the finish line and our champions in Congress took it over the line so President Obama could sign it into law. Besides passing meaningful legislation we proved that having passion and commitment and never, ever giving up can lead to success that will help millions of people.

An ongoing journey

Passing the language from the Anna Westin Act was an ending of sorts for me but it is not the end of the journey. We were able to pass legislation that will improve access to care for people who struggle with eating disorders and help educate the public and health care professionals to better understand eating disorders. We count this a success. However, we must continue to work to get attention to issues related to research, treatment and prevention of eating disorders. We continue to need people who are willing to tell their stories and use their voices to fight eating disorders. The Eating Disorders Coalition will continue to bring people from across the United States together to join with others who are speaking up and pressing Congress to help us eliminate eating disorders.

A voice counts

I share my story willingly because I believe that everyone deserves to be listened to, that every story and voice are important and that it is my responsibility to be Anna’s voice. I hope that my story will inspire others to freely tell their stories and that together we will end the stigma associated with having a mental health disorder. I believe that our voices can change the world and as Margaret Mead pointed out:

Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.”

It is true that we are changing the world when we speak out. And because of advocates across America and the globe I can envision a day when having an eating disorder is nothing to be ashamed off, when our prevention efforts are so effective that the incidence of eating disorders is substantially reduced and I see the day when everyone who develops an eating disorder has access to specialized treatment that can lead to full recovery.

A message in a diary

Anna left a diary. In it she wrote about the joys in her life and also the immense pain and suffering that living with an eating disorder caused. Anna left these final words — words that have guided me throughout my career as an advocate:

“May all your love, joy and pain lead you to your own promises, may your dreaming never end and your voice never die”.

EDC Capitol Hill Advocacy Day

Join the Eating Disorders Coalition in Washington D.C. on April 5, 2017. We will be on Capitol Hill telling our stories and supporting one another. Go to the EDC website for information on how to join the army fighting eating disorders: www.eatingdisorderscoalition.org. Come and experience the empowerment that so many describe when they use their voices.

*The Anna Westin Foundation that Kitty began 17 years ago is now The Emily Program Foundation.

 

June Alexander

About June Alexander

I have written nine books about eating disorders since my recovery (my “reconnection with true self”) from anorexia nervosa and other long term mental health challenges in 2006. In 2017, I graduated as a Doctor of Philosophy (Creative Writing). My contribution to the eating disorder field was recognised at the 2016 Academy for Eating Disorders International Conference in San Francisco where I was awarded the Meehan/Hartley Award for Public Service and Advocacy. I am currently a co-chair of the NEDC Steering Committee Evidence of Experience Group, a foundation steering committee member of the annual World Eating Disorders Action Day, and an Advisory Panel member for F.E.A.S.T.

All articles by June Alexander

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