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Standing With Those Affected by HIV/AIDS

Photo credit Adhy Savala.

In the mid-2000s, long after the AIDS pandemic hit the Western world during the 1980s, life in South Africa was upside down, and we were all sitting ducks, waiting for our parents, family members and neighbors to suddenly pass on. It was an eerie situation no one could save us from.  We felt helpless. South African government officials were still denialists at the core­­--suggesting a diet of garlic, beetroot and African potato as a means to survive the virus without life-saving anti-retroviral medications.

No one talked about it, and when they did, it was in a manner that was dripping with shame and stigma. You could hear hushed conversations about how so and so has ‘The Cancer’, but we all, even us kids, knew it was not cancer taking our loved ones before they had begun to live.

In 2009, we received the call from Saint Luke’s Hospice. A family friend was dying of The Cancer. My mother refused to let me say my goodbyes because she was afraid of the long-term effects it would have on my mental state to see someone I had known to be the life of the party, upbeat and joyous in such a state of despair. She was right. It has had a fundamental impact on my path and work at such a young age.

I was only 14-years-old at the time, but I dedicated my free time to visiting local clinics, speaking to healthcare providers and people living with HIV/AIDS. I embarked on a journey of research and found myself becoming an HIV/AIDS activist. I began advocating for people to use the life-saving medication, in conjunction with a balanced diet, and teaching safer sex measures. I realized I could use social media to get research-based information to more people than I could just speaking to those around me. Soon, I found myself in a space where I was an advocacy administrator for an international based group for individuals effected and affected with HIV/AIDS worldwide.

According to UNAIDS, as of 2018, “90 percent of people living with HIV knew their status, 62 percent of people living with HIV were on treatment and 54 percent of people living with HIV were virally suppressed.” We have a long way to go, but the statistics show the cultural shift of speaking openly about HIV/AIDS and affordable healthcare has created a movement towards awareness and by definition: safer, pleasurable sex.

If I have learned one valuable lesson from my work as an advocate, it is that preaching abstinence and shaming the act of sex creates denialism and stigma. Even more so, it creates a shroud of shame over necessary conversations that empower women and young people. We need to learn about consent and safe sex but we need to learn about pleasurable sex for all without neglecting the queer community too.

HIV/AIDS is not a death sentence and being diagnosed does not meant that you cannot live a well-rounded life. It is learning to re-navigate our thoughts, prejudices and privilege. It is a reminder that we are still standing beside those affected or effected. We have the ability to shift the narratives and attitudes for the better.


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