March 10 is National Women and Girls HIV/AIDS Awareness Day. The goals of this event are to raise awareness about the need for all women to be tested and treated for HIV.
The Texas Black Women’s Initiative (BWI) promotes active, engaged, and empowered communities to address HIV disparity among Black women and other women of color related to HIV prevention and care and to achieve sustainable systemic change.
In this post, Shae Neal and Donna Wilson, both leaders in the Texas BWI share their stories of finding purpose through being positive, and how HIV is living with them and not the other way around.
Shae Neal, AIDS Outreach Center, Fort Worth, TX
“I am 63 years young. I have two grown daughters, four grandchildren and an awesome great-granddaughter. I’m also a woman living with HIV. My moment came March 30, 2017, the day I was diagnosed with HIV. My medical team believes that the virus had laid dormant for 15-20 years before that. You see, even though I was going for medical visits over the years, I never asked for an HIV test and I never had symptoms.
“In October 2017, I started going to AIDS Outreach Center in Ft. Worth as a client. My life changed for the better. I found purpose. I became a member of the biggest family ever. Now I work there as a Peer Advocate. I devote my life to educating myself and my community. I’m surrounded by people who believe the same as me—ending HIV. I’m humbled and grateful to God for placing me exactly where He knew I would flourish. I carry this cross with love.
“When clients come to see me, they are one of three things:
- Newly diagnosed
- Fallen out of care
- Resistant to care
“When my clients come in, they’ve been beaten up emotionally, kicked out of their families and their homes. I love on them. I tell them, we’re going to take it one day at a time.
“My clients see me as a healthy woman. They don’t expect me to tell them I’m positive. When I do, they know I can relate to them and they can see what it looks like when you take your pills daily and become virally suppressed. I understand my clients because I’m positive. I know what ‘pill burden’ feels like. I tell my clients that I do a silly dance every day before I take my pills. Doing the silly dance makes me laugh about taking this medicine that is saving my life.
“I don’t look at this like it’s a disease. I’ve gone through a gamete of stuff. I tell the 19-year-olds who come to see me, ‘Everything you’ve done, I’ve done. You’re just at the tip of the iceberg. I was rolling around in the mud. But every stupid decision I made, I made with free will. I have no one to blame.’
“We get caught up in saying ‘I caught HIV’ and putting a lot of shame on ourselves. But the reality is, the virus is living with you not the other way around. I tell people that the virus has to adjust to your life, not the other way around. We are going to die with HIV, not because of it.
“Being positive has opened opportunities for me in ways I wouldn’t have imagined. I have no shame or regret. I know my path and purpose. I know that my voice is needed in this work.”
In this video from 2012, Donna Wilson shares the story of her journey from first being diagnosed with HIV to becoming an advocate.
Today, Donna talks about the importance of educating women and girls about their sexual health:
“I was 49 years old when I was diagnosed. Once I got past the initial shock, I decided that I was going to be a great advocate and that I would travel, promote sexual health, empower women to know their status and understand their bodies.
“I’ve talked to women who are 55 and older, married women…they don’t think it can happen to them. We estimate that over 3,000 black women in Dallas don’t know their status. A lot of women won’t go to the doctor because of stigma. Women are afraid to tell people and their partners about their status because of domestic violence. I’m learning the policies so I can help advocate for women and their rights.
“Women need to know and understand their bodies. There was no sign for me saying that I was HIV positive. There is no look, no income level, no power status of what HIV looks like.
“Once I took responsibility and accountability for myself and my body, it’s like I got a burden lifted off my shoulders. I always say that HIV is the best thing that has ever happened to me. It has made me the strong woman that I am. Now I can go out, talk to people, and share my story and the things I’ve learned. My voice matters.”
Donna Wilson has been positive since 2008 and is inspired to be an active, vocal member of the HIV movement. She is a member of the Ryan White Planning Council and is Co-Chair of the Ryan White Consumer Council Committee. Donna is the Chair of Texas Black Women’s Initiative in Dallas and a Peer Navigator for the The Afiya Center, a reproductive Justice Organization created by Black Women for Black Women in order to transform the lives of Women and Girls. Donna is passionate about talking with youth about rising above the conditions that cause HIV and helping young women facilitate healing from TRAUMA. Donna is a long-time member of PWN USA. She just recently completed a pilot training from NMAC call GLOW (Growing Leadership Opportunity for Women). She lives in Dallas, TX where she enjoys creating plastic canvas needlework, making jewelry, and writing poetry.
What can you do on March 10?
- Talk about HIV and AIDS in your community and online using NWGHAAD materials and resources and Achieving Together materials.
- Show your support for women and girls affected by HIV and AIDS on Twitter, Facebook, Instagram, or Tumblr; and use the hashtag #NWGHAAD. You can also update your Facebook profile picture with our NWGHAAD 2019 frame.