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If someone were to ask you, “Why are you an advocate?” how would you answer them—in just six words?
That’s the question at the heart of the Six-Word Exercise we use to jumpstart our Living Proof Advocacy workshops. It’s also found in Living Proof: Telling Your Story to Make a Difference (p.26).
The exercise is deceptively simple, and we’re always inspired to hear where it leads advocates as they reflect on their motivations and search for the six words that capture their passion and drive—advocates such as Katie Willingham.
Katie, a blogger and HIV advocate who had just dived into Living Proof and the Six-Word Reason exercise, contacted us recently. She was excited to share her experience and wanted to encourage other advocates to give the exercise a try. We’re honored to share Katie’s reflections here.
Katie Willingham
A woman of trans experience living in rural northwest Alabama, Katie entered the advocacy arena just over a year ago, and she has done so at full steam. She’s a member of the Positive Women’s Network-USA, a national advocacy organization made up of HIV+ women who combat stigma and discrimination, applying a gender-justice and human-rights lens to the HIV epidemic. In 2017, Katie became one of the first 12 women named a PWN-USA Policy Fellow, and she recently became the organization’s Alabama State Lead.
Katie also serves on the Community Advisory Board of Thrive Alabama, an AIDS service organization serving the HIV community in north Alabama, and she shares her story as part of Thrives’ iAdvocate Project. She also serves on the Alabama HIV Prevention and Care Group, a division of the Alabama Department of Public Health. In addition, she created and manages two Facebook groups and has recently started blogging for The Well Project’s “A Girl Like Me” program, where women of all ages can share their stories and promote understanding of HIV through online storytelling.
Here, Katie reflects on five phrases resulting from her Six-Word Exercise and how they express her various motivations for telling her story as an advocate.
I NEED PURPOSE IN MY LIFE.
“This may sound like a selfish reason, but for 20 years after my HIV diagnosis, I just sat at home waiting to die. I never went to college like I wanted; I had a family and had to work. I wanted to be a vet, a psychologist or a writer, but never pursued anything except bill money and I always felt like I missed out on my purpose. I don’t regret having my children and I wouldn’t trade them for all the purpose in the world—they are my greatest purpose—but they’re now grown so I’m free to find new purpose for my life.”
MY COMMUNITY AND I RISE TOGETHER.
“Advocating for the HIV community is also advocating for myself, as I am part of that community. The policies that affect their lives affects mine as well. We rise and/or fall together.”
PEOPLE’S MISCONCEPTIONS ABOUT HIV NEED ENLIGHTENMENT.
“When people think about HIV today they think of the 80s when the epidemic was deadly, scary and unknown. The majority doesn’t realize how much things have changed, that it’s no longer deadly or unknown so it doesn’t have to be scary either. Other misconceptions about HIV concern how HIV is transmitted. These misconceptions lead to fear, which creates stigma, which leads me to my fourth phrase…”
STIGMA HURTS, ISOLATES, DISCRIMINATES, INCRIMINATES, KILLS.
“I know from experience how much it hurts when people pass judgment on you and are afraid of you. That fear causes isolation because people consider you to be a danger to them. That fear causes people to discriminate against you by refusing you housing, employment or even services. Stigma also incriminates, causing people to be sentenced to prison for years in many cases. And finally, stigma kills. All the things I’ve mentioned cause stress, anxiety and deep depression, which can cause the immune system to weaken and even encourage suicidal feelings.”
SOMEONE ELSE DID IT FOR ME.
“I wouldn’t be alive today had someone else not advocated on my behalf to demand research, develop medications, establish and fund HIV education, provide medical services and support like housing, food, and therapy, and pass federal, state and local legislation that affects the lives of those living with and/or affected by HIV. I’m grateful for their work on my behalf and now I wish to join their fight, which I know is my fight as well.
This is why I chose to advocate.”
Katie concludes: “I learned a little about myself with this Six-Word Exercise. I never really thought much about the reasons why I chose to advocate; I just knew it needed to be done, I was available to do it and I had a desire to do so. This exercise enlightened me to my inner motivations…and that gives me strength to move forward more focused on my purpose and knowing why I chose to do it.”
Thank you, Katie, for sharing your experiences! We wish you—and all advocates—continued success as you tell your stories and make a difference.