Last updated: June 2021
"We are more than the cautionary tale. We are beings and vessels that seek and desire dignity, pleasure, freedom in who we are before our diagnosis."
I learned this from fellow advocate and goddess Kiara St. James. Revolutionary thinking to remember that people living with HIV and AIDS have desires that shouldn't be denied because of our diagnosis.
At this 40-year mark of HIV and AIDS, I want to focus on how ending the epidemic is more than biomedical prevention; it's systemic and societal accountability.
The first mention of HIV/AIDS
I was born almost a year to the day after the first mention of HIV/AIDS in The New York Times in 1981.
At the time, they were calling it "gay cancer"; a short time later, GRID (gay-related infectious deficiency) was the more official stigmatizing name. Advocacy began almost immediately in the LGBTQ+ communities, raising private funds for research.
The CDC soon shifted to the term AIDS after cases were reported from individuals that were not identified as gay such as hemophiliacs, intravenous drug users, and Haitian immigrants.
When Magic Johnson disclosed publicly
I was 9 years old when Magic Johnson disclosed his HIV status publicly.
I came home to talk to my mom about it because the education that students were given in my 3rd-grade class avoided the mention of sex and explained that it was an illness that had to do with blood.
When I asked my mom, “If everyone has blood, why don’t we all have this illness?”, her response was that I was “protected by the blood of Jesus” and I took that as I couldn’t get whatever this was.
I did have compassion for stories I heard and wanted to help. So I began making awareness postcards and passing them out at school with sayings like “Happiness is Vital”, using the letters to mean something different than what everyone seemed to be afraid of or upset about.
Influenced to bring HIV/AIDS awareness
When “Waterfalls” by TLC came out, I was in middle school and would attach naked Barbie dolls to my backpack with safe sex phrases written on them and attach condoms to the zippers.
I was influenced to bring awareness, but I was not supported. The sexual education system where I lived was abstinence-only based and there were no reinforcements at home about anything that could better inform me on why I needed to be more aware of sexual health.
Somewhere, we fell through the cracks
I didn’t even go to the doctor if I had a cold or the flu. If it couldn’t be resolved over the counter or with home remedies, prayer was the only other method I saw applied to health in my family. I don’t know if this was wholly cultural, economic, medical mistrust, or all of the above.
But, somewhere, I and countless others fell through the cracks.
My HIV diagnosis
At the age of 21, my diagnosis didn’t come in a “traditional” way of choosing to be tested and waiting for results. My diagnosis came two weeks after giving birth to my daughter. Because I didn’t have prenatal care, I was immediately tested upon her delivery.
I didn’t have prenatal care because I hid my pregnancy. I hid my pregnancy because I felt like I failed the only piece of advice I remember getting about sexual health: “Don’t bring home no babies.”
The details of "how" were never given. The details of "why" were obscurely religious. The details of what abstinence meant for me in the realm of consent were never even discussed. My daughter is HIV-negative and my experience has absolutely informed how I have parented and have discussions on sexual health.
All of this to say: I have been telling my diagnosis story for 14 years. I have used my experience as a caution to bring prevention awareness. I have broken down the costs of my treatment to bring awareness to managing a chronic illness. I have recently grown very angry and weary of it all.
How can we save and improve lives?
This nation and the many systems, agencies, and departments are accountability deficient. So many meetings, reports, politics, and red tape have to be filtered before a decision can be made on how to save and improve lives.
The profits of insurance companies and pharmaceutical companies seem to be historically prioritized over meaningful, well-being and quality of life for people living with HIV and AIDS. It is time that awareness shifts to how we are humans, subject to systems designed to profit from our pain, our diagnosis, and our power when we rise above the stigma of it all.
This 40-year anniversary of HIV and AIDS needs to highlight that people are still dying from complications of HIV and AIDS. And in all honesty, the complications are widely preventable or manageable.
Considerations of curing complications:
- Provide stable and safe housing.
- Provide quality access to affordable healthcare.
- Repeal laws that criminalize people based on their HIV status.
- Do these with the lived experiences of the subject matter experts most impacted and tokenized by HIV and AIDS efforts. For example, the peer navigators, the volunteers, the community organizers, the testing and outreach coordinators, the linkage-to-care case managers, those living with HIV and AIDS -- the communities that are consistently impacted and marginalized were never reflected at the beginning of the epidemic because these same issues I’ve listed were not being prioritized then.
Let me be clear about who I am addressing 40 years into this epidemic as I turn 39 at the end of this Pride month.
I am talking to and holding a lens to any organization or foundation that has the name/letters HIV or AIDS in it, but doesn’t employ, staff, or center the leadership of PLHIV, specifically Black, Indigenous, People of Color.
This also includes the boards of directors, community advisory councils, planning councils, and other cohorts for ASOs or CBOs that receive recognition for their longevity, but don’t have historians to curate the timeline of growth in racial, gender, or economic justice for the communities they serve and improvements that have been made in that longevity.
This applies to organizations receiving millions in grants for ending the epidemic initiatives - especially in the South - and their funding doesn’t center, uplift, or support the innovative ideas of PLHIV doing work with little to no funding.
There should even be a deep consideration for the gatekeepers that keep the gates closed, holding on to bylaws that are outdated because they fear that their voice will somehow be erased.
We should not be facing the same struggles
Let there not be the same conversations 40 years from now. PLHIV should not be facing the same struggles we are facing today, 20 years from now. Liberation and peace of mind are on the agenda.
Elevate energy in a revolutionary way
I want the energy that brought together the community countless times historically, that fought for us to have the prevention, treatment, awareness, and funding to be elevated in a revolutionary way. I want the energy laid out in the Denver Principles in 1983 to be centered, prioritized, and invested in today.
Let all people living with HIV and AIDS be celebrated this 40-year mark, to be seen and validated for our desires, dignity, pleasures, freedoms, and who we are before our diagnosis -- our humanity.
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