On the first World AIDS Day—December 1, 1988—I was a happy, doted-upon 1-year-old toddler, completely ignorant that just four short years later AIDS would carry great meaning in my life.
When my mother died, in October 1992, I was three weeks shy of my fifth birthday, and AIDS had fully established itself as a ferocious pandemic.
I have always thought it some sort of cruel poetry that my birthday falls squarely in between my mother’s passing and the commemoration of World AIDS Day. It was as though God knew I would need some joyous reprieve in the midst of my grief before having an international reminder of what had taken my mother from me. This observance, though, wouldn’t mean much to me until long after my mother had passed. Almost six years to be precise.
For the six years after her death, I would be told some variation of “she was sick” whenever I inquired about how she died. When classmates asked questions about what happened to my mother, I would regurgitate what I had been told. I could see the confusion and dissatisfaction on their faces when they would pose follow-up questions about the type of sickness. I could only stare at them blankly. Little did they know that I shared their sentiments. I had confusions and curiosities of my own.
Finally, at age 11, my brewing frustrations at years of nonanswers bubbled up and spewed out. I went to my maternal grandmother and shared my feelings with her. She had expertly curated a space for me to always feel comfortable being blunt about my feelings and queries, no matter the subject. So I was surprised, when instead of answering my question outright, she said, “That is something for your father to answer, but if he doesn’t tell you, then come back to me and I promise I will.”
At the end of my weekend visit with my grandmother, my father picked me up to take me home and I mustered up the courage to make my move. Stuck in traffic, on either the Brooklyn or Manhattan Bridge, I blurted out a barrage of questions that had been longing for answers. “How did my mother die?” was one of them, and as sternly as I could in the midst of my fear, I added “And don’t just say she was sick.”
My father took a deep breath and gripped the steering wheel just a little bit tighter, clearly uncomfortable but fully understanding that the time had finally come.
“She had AIDS.”
In my memory, the words came out the way you expel a sunflower seed shell from your mouth. Quickly, forcefully, necessary, and with no pleasure.
The next time someone at school asked me how my mother had died, I recited my old line: “She was sick.” Though I could have given a real answer to the follow-up question this time, I didn’t.
And just like that, my family’s shame became mine.
According to the Centers for Disease Control and Prevention, of all women diagnosed with HIV in 2016, almost 61 percent were Black women—more than three times the number of white women and almost four times the number of Latinas with the disease.
The majority of Black women living with HIV were exposed to the illness through heterosexual sexual contact with Black men. Within my family, there are two stories of how my mother contracted HIV. One says that it was through a blood transfusion after an abortion that resulted in complications. The other says it was through sex with a guy that she used to mess with in her neighborhood.
I personally don’t care how my mother contracted HIV. I am more concerned with the fact that she became marked, like so many other Black women, within our family and community. To this day, my father does not talk about her much, and any mention of how she died is quickly followed by rhetoric about God knowing best. Many years after her death, as I dealt with my own ostracization from my family, I would learn just how much my relatives believed in the connection between one’s sexual choices and sexuality and God’s favor in your life.
The shame and stigma of my mother’s death are still powerful regardless of the how. I could not bring myself to tell the truth about how my mother died for some time. The fact it had been kept secret told me it was something to be ashamed of, to be ostracized for, to hide.
One of my first jobs after college was as the youth program manager at an HIV and AIDS nonprofit for women and girls in Washington, D.C. By this point, I had fully embraced my role as an advocate for women and girls of color and overcome the shame of my family.
However, every day I witnessed firsthand how that same shame destroyed the lives and spirits of Black and Latina women and girls. Some of the young women had been told they were worthless so often that they purposely got involved in potentially harmful situations. Or they connected worth to sexual purity and, as a result, thought by engaging in “sexual impropriety,” they brought HIV on themselves, similar to the rhetoric I hear when Black women, especially trans women, are victims of violence or contract HIV. We are seen as throwaways for not following the prescribed rules of sexuality and gender set forth by the churches of respectability and colonized Christianity.
Much of my shame came from the religious institutions in my and my family’s life, though these same institutions turn around and pray for an end to AIDS. It’s a spectacular display of double speak, as these institutions ignore the fact that stigma they have perpetuated is partly responsible for HIV and AIDS’ disproportionate devastation on Black communities.
Shame is often borne out of a combination of someone else’s fear, ignorance, and confusion, balled up and projected onto you. It can cause you to question not only your worth but your very existence.
I have spent more time than I care to admit at the bottom of shame spirals built of fears that were not my own. When you are in a shame spiral, one of the last things you want to do is be kind to yourself, and you are actually more inclined to do the complete opposite. Shame kills because it leads us to be complicit in our own destruction.
For Black women living with HIV, that complicity can mean not adhering to treatment because religious dogma promises healing without medication and if only you deny that your body experiences pleasure. It can take the form of not disclosing your status to a partner for fear of violence or retaliation, not being centered in treatment needs due to old tropes about our sexuality or lack thereof, and being relegated to the perpetual caretaker of others—but not yourself.
If we can learn to undo shame, we could clear innumerable pathways to our own healing and liberation. I believe a world without shame is possible and we can each take these steps to get there:
Step 1: Recognize that the shame doesn’t belong to you
Take a moment to reflect on things that you may feel ashamed of, then ask yourself. “Is this mine?” I am willing to bet that the answer is no. If it isn’t yours, take steps to figure out how you came to take it on and why. What is it attached to? If it is yours, see step 2.
Step 2: Expose it
One of the biggest ways shame robs us of our power is by keeping us silent. Name what it is you are ashamed of, even if only to yourself at first. Then try telling one person and then another. The first time I told someone my mother died of AIDS-related illness, I felt the instant lifting of a weight I’d carried for so long.
The more you talk about it, the less power it will have over you. This is why talking about getting tested is so important, and having candid conversations about sexuality is paramount. How can shame win if we are willing to be open about that which plagues us?
Step 3: Reclaim yourself
So often shame and those who shame us win because they tie deeds to character. When you are able to separate acts from your personhood, then you know the truth that nothing you do could make you worthless. When I think of how devastating HIV and AIDS has been for the Black community, this is one of the biggest factors that comes to mind. We have made people believe that they are wrong, unloveable, due to an illness. If we stopped putting so much weight on our deeds, how much space could be made for loving caregiving for the whole person?
Step 4: Find community
Shame breeds isolation. It tricks us into believing that we are alone, or, in some cases, it actually causes others to ostracize us. When we seek to restore connection, we diminish shame. Communion is a potent antidote to self-destructive behaviors.
Without shame, I do believe not as many Black women would be affected by HIV and AIDS. If we could talk openly and freely about our sexualities, we would be able to have safer encounters. If Black faith communities didn’t impose unrealistic standards, if they taught us healthy sexuality and acknowledged our right to pleasure, we would not feel the need to hide.
Perhaps my own mother would have found a way to name her truth and could have have gotten medical help earlier. What I do know is, without shame, I have been able to advocate for her posthumously.
And no one will ever hide how she died again.