So why I. Still. Scared? Why I still have shame? No! Let me speak about HIV. "This is my life.”
Stigma — attributed to or associated with HIV — remains one of the most significant barriers to self-care. In my conversations with the “Narrators”, African immigrant women with HIV who shared their experiences working in the sector, an overarching theme was the role that stigma played in their lives as racialized women living with HIV.
Some of the women remarked on how people who should have been caring for them — friends, family, intimate partners, their communities, broader society — were the sources of the prejudicial treatment they received because of their HIV status. For African, Caribbean and Black (ACB) women, HIV stigma can intersect with other forms of oppression, including sexism, xenophobia, Afrodenigration, and anti-Black racism.
What the Narrators also taught me were their strategies to challenge stigma. Notably, political activism, coupled with collective caring amongst other people living with HIV, has served to mitigate externalized stigma and reframe one’s HIV seropositive as a guiding force in self-exploration and transformation.
We decided to visually re-tell the poem "This Is My Life" to illustrate HIV activism's role in combatting stigma. In "Fifi’s" stories of HIV service work, she noted how her life had ended when she was first diagnosed and how the stigma she endured and internalized nearly “killed her.” Yet, she kept repeating how her engagement in HIV responses —in Canada and her African homeland — gave her back her life. In reflecting on the juxtaposition — her HIV diagnosis ending her life, her activism giving her life — what resonated was how working in HIV responses had rejuvenated her. “This is my life” speaks about the role activism can have in self-care. For Fifi, she was reborn through HIV activism.
"THIS IS MY LIFE", by Fifi*
When I began our HIV association
It's that time I started to open my eyes.
I started to THINK about my virus.
To THINK what I went through.
And I said,
“No. Let me focus on this association."
"This is my life.”
I was ready to talk
To say I was HIV
You know why I think?
Because I could say,
“I didn’t die.
HIV didn’t kill me.
People rejected me, my family, everybody.
But I survived."
So why I. Still. Scared?
Why I still have shame?
No! Let me speak about HIV.
"This is my life.”
When I was diagnosed with HIV
That was the end
That was
The first life.
Because during that time I was dead.
Stigma and discrimination it killed me already!
I was walking like a human being,
But I didn’t have any human inside of me.
I was just a body.
But with the association
I had an opportunity
To GET OUT.
To have a VOICE.
To SPEAK.
To SING.
To ADVOCATE.
I didn’t know I was
Being an activist
A voice for HIV-positive people
I didn’t know I was doing something.
No!
I just said
“This is my life.”
To learn more about community-based approaches to combatting stigma, I suggest you visit:
The People Living with HIV Stigma Index website, a global participatory knowledge generation and mobilization project that documents and translates experiences of stigma from the perspective of people living with HIV.
Positive Effects, whose participatory approach to erasing stigma is guided by the wisdom of people living with HIV, including ACB women.
#lovepositivewomen founded by Jessica Lynn Whitbred, who challenges us to use love and care to combat the stigma experienced by women living with HIV. Jessica was recently featured on the “Everybody Hates Me: Let's Talk About Stigma” podcast in February 2022.
*Pseudonyms used to maintain the confidentiality of the Narrators.
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