#23 Of Our Amazing People Living with HIV: Katie Adsila Willingham

Katie Adsila Willingham is a woman of transgender experience living in rural north Alabama. She says her middle name, Adsila, “was given to me by my sister. It’s Cherokee and it means ‘blossom,’ which I think I’ve done much of in the past two years. I’m 40 years old — and have been for six years now,” she jokes. “I’m bisexual and not in the least bit confused, sex greedy, or attracted to everyone that breathes. I live on disability and the love of my life are my four Shih Tzu’s—they are my self-care, my safe place, my peace and happiness. When depression creeps up or the world just becomes too much, I can snuggle with my babies and the world melts away.”

Diagnosed with HIV in 2000, as a 20-something with three children, Willingham struggled with treatment — in part because she was also struggling with her gender identity, as she explained in a 2018 video for the Prevention Access Campaign’s Positive Series (PositiveSeries.org), a national campaign funded by ViiV to spread the word that undetectable equals untransmittable (U=U). That’s a message Willingham credits in the video with saving her life, because it gave her a reason to become diligent about her HIV treatment and helped her suppress her viral load.

Willingham turned to Thrive Alabama after her diagnosis in 2000 and tells Plus, “for 15 of those [ensuing] years I was satisfied with only being a client as I lived miserably in the closet, but after I came out as a transgender woman, most of my severe depression lifted — for once I was able to concentrate on more than myself. I felt like Thrive saved my life and I wanted to give something back.”

In 2018, Willingham told Living Proof Advocacy (a brand that advocates the telling of personal stories in order to raise awareness or foster change) that “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 always felt like I missed out on my purpose. I don’t regret having my children... they are my greatest purpose—but they’re now grown, so I’m free to find new purpose for my life.”

Since January 2017, she has embraced that newfound purpose with gusto, diving into HIV activism. Willingham now serves on the Community Advisory Board of Thrive Alabama where she chairs the Prevention Committee and is involved in the iAdvocate Project. She describes the latter as “14 HIV-positive individuals, myself included, [who] advocate in their local communities, finding ways to educate everyone they can about the facts of HIV, from individuals to organizations, from social media to local physicians. The need for HIV education is vast, even in our daily lives, the people we see every day.”

Willingham also told Living Proof Advocacy, “When people think about HIV today they [still] think of the ‘80s when the epidemic was deadly, scary, and unknown. The majority doesn’t realize how much things have changed.”

“At any other time, I would say that the greatest challenge facing the HIV community would be the fight against stigma,” Willingham tells Plus, arguing that we’ve yet to really “overcome the fear and disinformation of the ‘80s. This fear and disinformation still remains our greatest challenge to overcome, but now, with the knowledge of undetectable equals untransmittable — along with advances in medical sciences such as PrEP and PEP — perhaps our new challenge will be convincing the world that HIV is still a problem. Now is not the time to defund HIV-AIDS programs and organizations that combat the issue nationally and worldwide. Combating this false information or ideology will require the same fierce determination and undeterrable tenacity that it took in the ‘80s to get the world to recognize HIV as a universal problem in the first place. None of us can do it all, but we can all do something. I will do all I can do to educate the world about modern HIV realities.”

In addition to her work with Thrive Alabama, Willingham serves on the Alabama HIV Prevention and Care Group (a division of the Alabama Department of Public Health).

Willingham says, “2018 has been an amazing year for me. I graduated from the Positive Women’s Networks Policy Fellowship and became the PWN Alabama State Lead. I then became a blogger for The Well Project’s A Girl Like Me… I also created educational Facebook groups: Alabama Poz Life, Alabama Transgender Coalition, and PWN Alabama.”

Although Willingham says, “the midterm elections were not life-altering in the state of Alabama,” she feels “progressives are gaining more ground, even in a state as red as Alabama.”

Looking to 2019, Willingham hopes to build a group of women who have an interest in advocacy in her state, which could become an Alabama PWN state chapter. And she’ll keep her eyes open to what may come: “Sometimes we’re presented with surprises. Like the other day I was invited to possibly be part of a documentary with a production from Amsterdam about being transgender and HIV-positive in America.” Willingham’s determined to continue changing minds, fighting HIV stigma, and advocating for funding and the support of HIV-positive women.