My mother died of AIDS – She deserves more than stigma

Today is World AIDS Day. On March 11th of this year, my mother died of AIDS-related encephalopathy. My mother was an activist, a southern belle trapped in the north, a grandmother, and a recovering addict. In her life she survived multiple rapes and attacks on her humanity. She overcame drug addiction and homelessness. She turned her “tragedy to triumph” (yes Kanye) when she became a national advocate for ending homelessness in the HIV/AIDS community. She served on the first five years of the historic Massachusetts Ryan White Planning Council.  She lived with HIV for 16 years.

I write this because even at the time of her passing some of my closest friends did not know what she was dying from. In my heart I knew I was not ashamed of her status, so why was I being evasive? My family had gone through a lot over the years: drug and alcohol addiction, abuse, a very messy divorce.  All of which I was fairly comfortable talking about while discussing the path from trauma to healing. Yet I could not break through the stigma of the stereotypes people would heap upon my mother if they knew the truth. The irony being that she actually embodied many of those stereotypes throughout her life.

“People with AIDS are drug addicts.” Check.

“People with AIDS are promiscuous.” Check.

“People with AIDS got it by putting themselves in bad situations.” Check.

The truth of these stereotypes, in the case of my mother, is not what fueled my fear of disclosure. But rather, knowing that people will believe those stereotypes about my mother without knowing the traumas that brought her to that place; and that ultimately she would then be measured, judged, and condemned as a person not deserving of love or respect. The fear that if others knew my mother's status they would operate on their own fear/ignorance and never get a chance to know how loving, funny, and clever she was. 

My mother spent many years as a harm reduction educator across MA public schools. We had a deal she wouldn’t teach at CRLS until after I graduated. She didn’t want me to be burdened with the weight of her diagnosis. Yet now, 15 years later, with the echo of her voice in my head, I realize it is my burden and it actually isn’t that heavy. 

My mother died of AIDS. I am not ashamed.


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