Advocacy Guidelines

What is Advocacy?

It is the position of the Academy for Eating Disorders that advocacy should be a part of our practice and that advocacy efforts be valued as an important component to the overall treatment of all patients, clients and carers.

We are aware that there is a wide spectrum of programs and services across the globe and that the need for advocacy will vary from country to country. The following Advocacy Guidelines are basic principles that are applicable and pertinent in counties around the world.

  • Advocacy is about having a voice, being part of the solution and standing up for what you believe in.
  • Advocacy is taking action for or against a cause or position.
  • Advocacy is typically motivated by moral or ethical principles or to protect an interest.

Why do we need advocacy around eating disorders?

  • Advocacy is empowering and affirming and is a necessary component in fighting and raising awareness of eating disorders across the globe.
  • Advocacy efforts in the eating disorder arena may involve advocating for sociocultural change, better understanding of eating disorders, increased research efforts, access to evidence-based treatment, etc.
  • Advocacy often revolves around making sure our patients/clients have access to care and insuring that their basic rights are being upheld.  In addition, advocacy efforts are useful in supporting research and promoting education and prevention efforts. 
  • Advocacy may also involve promotion of positive weight related messaging vs. 'war on obesity' approach.

What does an advocate do?

An advocate speaks out and actively supports a cause and advocacy can take many forms, large and small. Being an advocate can be as easy as:

  • Forwarding an e-mail to everyone on your list, copy and pasting a form letter to a policy maker, or using your social networking including Twitter, Facebook and other networks to support a cause.
  • Letter writing campaigns, phone calls or face-to-face meeting.
  • Getting media attention, public speaking, organizing and rallying, meeting individually with influential people, joining forces with other advocacy organizations or being the voice for people who are unable to advocate for themselves.

There are thousands of ways to be an advocate and your voice is important.

Who can become an advocate?

Anyone can be an advocate and, in fact, we believe it is our responsibility to advocate for our clients, their families and care-givers.  You do not have to be an expert in governmental affairs or have a complete understanding of how policy makers work.  You do need to be able to share your experiences and have the ability to effectively communicate through writing and speaking. “Effective,” in this context, means being concise, and providing the information your listener needs.  

Your audience may be the government, the media, members of the community, or your colleagues. Being an effective advocate means having the confidence that you are the expert in your story and you accept the challenge and responsibility to “educate” policy makers, members of your community, the media and others about the multitude of issues facing people who suffer from eating disorders.

Why is it important to be an advocate?

Advocates understand the importance of having a voice, or being the voice for someone who is unable to advocate for themselves, and know that sharing a personal story with a policy maker, the media, or your community can have a powerful impact.  We know that there is power in numbers and every voice is important. We also know that we need to be part of the discussion and that we would miss opportunities to “tell our side of the story” if we are not willing to be part of the conversation.

Example:  Entertainment icon, Disney Corporation, launched an on-line site and interactive exhibit that was profoundly offensive and shaming. It promoted weight stigmatization and had the potential of doing harm to viewers. People from across the globe sent messages and voiced their concerns and within a few days the exhibit was closed for “re-tooling.” This is advocacy at its best!

Basic Principles of Advocacy

Effective advocacy requires a set of skills that are easily learned. Advocates must be very knowledgeable about their specific topic and the goal is to share that knowledge and have a positive impact on the audience. Eating disorder advocates typically are passionate about fighting eating disorders but also recognize that their audience may know very little about the illnesses. Therefore, eating disorder advocates must be able to provide accurate information on the topic and it is useful to have a set of talking points that are used consistently by all advocates  Talking points must be factual and evidence must be readily available should someone ask you where your facts came from.  The goal is to simplify the learning process for the listeners.

Clear message: To be effective, advocates must be specific about what they are asking for and what they want their audience to do.

Example: The Eating Disorders Coalition in the US advocates and lobbies Congress to pass specific eating disorder legislation.  The “ask” is to support the Federal Response to Eliminate Eating Disorder Act.

Action: There are opportunities to be an active advocate throughout the year. In the policy arena, there are opportunities to impact policy throughout the year depending on the subject.  Progress can be slow, but steady pressure on policy objectives is critical. In the realm of media, there is typically a much shorter timeframe within which to respond.  Advocacy response to inappropriate or potentially harmful media must be timely and swift.   Overall, advocates typically are able to provide accurate and timely information to the media, government officials and others who are seeking facts, statistics, data or general information about eating disorders.  Individuals and organizations that are most successful in their advocacy efforts are the most visible and work year round.

Relationship Building: Much of advocacy is about building relationships and trust.  Once you are seen as the expert, it is likely that policy makers, the media, and community groups will contact you when there is a question about eating disorder research, treatment or prevention.

Strategy: To successfully advocate for your patients/clients and carers it is useful to develop a strategy and to communicate your plan to fellow advocates. Flooding the phone lines, e-mail, or mail boxes of policy makers can be very effective in accomplishing your goal and bringing attention to your cause. Sending policy updates, press releases and action alerts are also effective strategies to keep your issue front and center.  Follow-up, diligence and persistence are important qualities.

Persistence and patience: It is important for advocates to trust that their efforts will make a difference and will lead to better overall care and treatment for patients/clients, more support and resources for carers, de-stigmatization of eating disorders and improved awareness within our communities.

By Jillian Lampert and Kitty Westin
May 8, 2014

Resources

AEDEDC Press Conference

In June 2006, a World Summit on Eating Disorders in Barcelona announced the Charter at the first global meeting of professional, patient/carers, and other stakeholders. Delegates from around the world and conference participants were invited to participate in this Summit, which featured the signing of the Charter and a work session focused on ways to enact the standards set forth in the Charter.

Watch a 45 minute video on the U.S. launch of the Charter in Washington D.C:

World Wide Charter for Action on Eating Disorders

The World Wide Charter for Action on Eating Disorders is a collaborative global initiative to change the way eating disorders are treated and those with eating disorders are supported. In 2005, a group of AED members and others affected by eating disorders put out a survey that reached 1,730 people in 46 countries asking for their concerns and their hopes. What developed was a remarkably similar set of concerns and solutions:

View Charter

THE RIGHTS OF PEOPLE WITH EATING DISORDERS AND CARERS 
I
Right to communication/partnership with health professionals 
II
Right to comprehensive assessment and treatment planning 
III
Right to accessible, high quality, fully funded, specialized care 
IV
Right to respectful, fully-informed, age-appropriate, safe levels of care 
V
Right of carers to be informed, valued and respected as a treatment resource 
VI
Right of carers to accessible, appropriate support and education resources 

World Eating Disorder Healthcare Rights

Guiding Principles