By Marcya Gullatte

The views and opinions expressed in this piece are the author’s and do not necessarily represent the position of Positive Women’s Network – USA.

April 15, 2024

“When you see something that is not right, not fair, not just, you have to speak up. You have to say something; you have to do something.” -John Lewis

As long as I can remember I have been an advocate. In my senior year of high school (Class of ’88), I attended a boarding school. For the first time in my life, I was in a popular crew, but after many years of being on the other side of the fence, I wanted to help those who could not help themselves. So, my friends, all juniors and seniors, developed something like a sorority, and one of our goals was to identify freshmen and other new students who were having trouble transitioning into our school and help them to feel more welcomed and supported, as well as speaking up when we saw an injustice.

Fast forward to 1994, I was diagnosed with HIV in January. After giving birth to my daughter in August of that same year, I attended an HIV/AIDS program at Spelman College with Dazon Dixon Diallo, CEO of SisterLove, Inc,  (at the time Dazon Dixon), and I heard the speakers say many incorrect things about HIV. I sat there muttering my disgruntled comments about what was being said and Dazon told me to speak up. That was all I needed because after the break I began to speak up and correct all the incorrect statements which were made.

Now let’s fast forward to last year.  After many years of stress, which had been induced by abusive relationships, stressful workplaces, and eventual unemployment and homelessness I had snatched my advocacy voice away and created a timid and anxious individual living with PTSD, anxiety, and depression. Just the thought of speaking up triggered enormous anxiety within me. When the applications came out for AIDS Watch 2023 all I could feel was extreme anxiety.

Since then, I began to work very hard at dealing with my mental health, by getting on the right medication, and therapy, taking Dialectical Behavior Therapy multiple times, and then applying what I learned to my daily life. I began an advocacy program that addressed identifying and addressing my needs before I could address those of anyone else.  This time, when the scholarship applications came out for AIDS Watch 2024 I had the confidence to apply.

While waiting for a response to my application, my work was recognized and my PWN-AL Chapter saw a leader within me and voted me in as their newest co-chair (along with the existing co-chair Katie Willingham). This was a great honor and privilege to have gained their confidence and support and I do not take that lightly.

Somehow my acceptance email for my AIDSWatch ’24 scholarship was lost in my email and the policy director at AIDS Alabama identified the co-chairs of PWN-AL and asked us if we wanted to attend AIDSWatch. I jumped at it and said yes.

I was still apprehensive about attending AIDSWatch, I was fearful that my voice and the voices of those living with HIV would not be heard, and instead, it would be all about the ASOs in Alabama. I expressed this in a PWN national meeting to prepare us for AIDSWatch and I felt the support of the 3,000 women of PWN, and it began from the top down, Keiva Lei Cadena, co-director of PWN-USA, spoke up for those of us living with HIV and arranged for myself and another woman to be the leads. This helped;  I still had some uncertainty, but I was comforted by the knowledge that I had the support of all my PWN sisters. 

March 19, 2024, came and I still did not know the names of everyone coming from Alabama. I originally thought that there were only three of the nineteen people there with lived experience. I was pleasantly surprised that there were seven people of lived experience present. It was incredible to witness how well each of the ASOs present took turns speaking and always at an appropriate time, sharing the space to interject the points that needed to be expressed. The most impactful part were the stories told by each of us living with HIV.  It would not have been nearly as successful without our voices. “Nothing about us without us,” (Latin: Nihil de nobis, sine nobis).

That day the truths of the seven of us with lived experience were recognized, appreciated, and honored. This was the largest contingent from Alabama we had ever had. Vanessa Tate Finely of AIDS Alabama later let us know that we met with 6 out of7 Districts and 2 out of 2 Senators, which is 89% of federal Alabama lawmakers.

The best part for everyone there was being in Washington, D.C. when the FY24 Budget was passed and there were no funding cuts for HIV/AIDS programs! Although, I did learn while I was there that this funding for the state of Alabama only ensures that we can continue the existing services, for those who are still waiting on services there was no additional funding to address these needs, which includes my own personal housing need. Therefore, there is still much more work to be done and some of that work will be done at Alabama’s Advocacy Day on April 9, 2024. 

But it doesn’t end there. “As long as poverty, injustice and gross inequality persist in our world, none of us can truly rest.” — Nelson Mandela