I found my path to advocacy because I FINALLY found out I had a treatable condition; binge eating disorder (BED).
I was 42 when I finally understood I had an eating disorder, different from the disorders that were traditionally represented. I was so shocked, and so thankful, that after I sat down and thought about it I realized, being an average women, if I’d never heard of my eating disorder, most people probably hadn’t either. That being the case, if others were as profoundly unhappy and confused as I’d been, I had to spread the word. I simply could not let people suffer in silence and shame the way I did if there was information to be shared, and consequently social justice to be obtained.
2. What does your advocacy work consist of/ how do you define advocacy?
I try to describe what I do in two distinct but important roles. I think of activism as the fun, group, grassroots, slightly controversial cousin of advocacy which is more, relationship building, talking, collaborating and informing.
I mainly advocate but that is probably due to my geography. Living in Washington DC I have the opportunity to interact with people who require relationships and conversation and whom, if they have learned to trust you, will allow you to educate them on nuances they may not understand personally, but which can make a huge difference in policy and programming.
There are times I put on my activist hat too, marching, joining campaigns in person or on social media and the like.
Sometimes, as in my experience with the Let’s Move! Program, activism becomes advocacy. Were it not for the activism of petition drives, social media campaigns and the orchestration of a sign-on letter to the White House, I would not have had the opportunities to meet with the staff, formally review the program and make recommendations on the initiative to prevent weight stigma.
All action is worthwhile action – just know your audience and work with them accordingly. Don’t use your booming activism megaphone and taunting language in an office with people who would otherwise listen to your concerns.
3. What change do you hope to affect?
Over the years my passion has become advocating for weight bias and weight stigma prevention. I dearly wish to bring the conversation about the discrimination of people in larger bodies to the civil rights table where it belongs. When people talk about rights and liberties for other demographics, I believe that size and weight should be as natural a part of that conversation as gender, race, religion and sexual identity.
4. What are some of the challenges/frustrations inherent to this type of advocacy?
People cling to their prejudices – whether intentionally or not. The hardest part is actually two fold in my opinion.
First there is a glut of misinformation about weight as it relates to health. People have been told, and sold, and continue to buy (to the tune of $65 Billion a year) the idea that thin bodies are inherently healthy and large bodies are inherently unhealthy and this is a myth perpetuated by the diet industry. Science, and untold number of studies confirm, that the body can be healthy in any number of sizes and shapes – health is dependent on care and healthy habits, not size. This misinformation leads us to point number two, which is…
People think they’ve got this figured out. They are not interested in learning the realities of size diversity and how it impacts the lives, livelihoods, education, cultural identities, community involvement, crime, mental health, economics and much more. They don’t understand why the fat joke actually does harm and how it perpetuates stigma and discrimination. If point one is misinformation, point two is intellectual laziness.
5. Top 5 things you would share with a family facing a new diagnosis?
No matter what the ED, it is treatable – some EDs have a wealth of information and others do not, but there are top notch organizations to help guide you to the right resources and treatment providers. Reach out to BEDA, NEDA, MEDA, ANAD, FEAST, EDC… Just start reaching!
There is an entire spectrum of people in the ED community – some will be “your type of people” and others will not. Do not get involved in personal politics, focus on your recovery.
There are are no perfect paths – what’s right for one person’s recovery may not be right for another person. Choose what works for you even if it’s unpopular or you have to advocate for yourself. You are unique and so is your ED.
You do NOT have to put up with medical providers who do not honor you – your doctor, or your team, is there to guide and support you, not shame, blame, judge or any other purpose. If you are not receiving the care you feel you need or deserve, break up with your doc and find someone who respects you. You won’t make headway if you hate your provider.
Lizabeth Wesely-Casella is an advocate and business consultant. Her work supports binge eating disorder (BED), impulse control disorders and Weight Stigma. As a speaker, she blends science, humor and cultural wisdom to engage her audience, creating a clear understanding of where health disconnects from body shape and that neither impact personal value. Lizabeth specializes in the prevention of weight bias and mental health stigma through speaking writing and coalition building. She is the founder of the website BingeBehavior.com and her skills as a respectful leader and thoughtful teammate have built a reputation among her peers as a key individual to work with in the policy arena Lizabeth lives in Washington DC with her loving husband and delightfully spoiled dog Noodle.