Sandra Johnson

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Saundra Johnson


Throughout her life, Saundra Johnson has never avoided the hard jobs.

“I haven’t been a hotel maid yet,” she laughs. “But if it’s nasty, I’ve done it.”

When the AIDS epidemic spread across America in the 1980s, her occupational direction began to take focus.

“I saw the very first article on this ‘strange new disease.’ I saw all of those early signs. I tucked it into my subconscious. Then I read the book And the Band Played On and the first Names Project book. I read about Cleave Jones [founder of the Names Project, caretakers of the AIDS Quilt] and became angry.   I thought, ‘Let me get off my ass and do something.’”

Despite working full-time as a data entry clerk for the University of Chicago, Saundra spent most of her free time volunteering for various HIV-related groups and organizations – including the Names Project.    The anger and commitment she felt was channeled into grassroots advocacy for people living with HIV/AIDS when she joined the local chapter of ACT UP. Even today, she still calls herself a card-carrying member of the activist group some would describe as radical.

“I honor that because if it wasn’t for ACT UP, I wouldn’t have had a lot of opportunities for direct action.”

Saundra found herself not only fighting for the rights of people living with HIV/AIDS, but also for the communities of color that were often forgotten in this struggle. She began volunteering at Open Hand Chicago, delivering food to PWAs in need.

“At the time people were saying it [HIV] wasn’t a ‘Black thing’, but on the south side of Chicago, I could see that this wasn’t true. I saw Black mothers caring for their daughters, Black families caring for their sons. I felt privileged to be let in. Oftentimes, the families were caring for the sick in solitude. I would bring AIDS magazines and resources in plain brown wrappers.”

Saundra recalls that the meals she delivered not only fed those with AIDS, but often their entire families. “The children still needed their dinner. Sometimes sick parents couldn’t eat but were happy to have ice cream or special treats or even just to smell the food and know that somebody cared enough. To be able to help in this way was awesome and I’m a better person for it.”

As important as these efforts were, they were only the beginning for Saundra. Those who witnessed her compassion, intelligence and dedication to people with AIDS in her community saw greater things in her future. She was encouraged to make her work in the fight against HIV a steady job and just like that, she took a leap of faith.

By the early 1990s, Saundra was working as a case manager at the Chicago Women’s AIDS Project, helping to secure services for “wonderful women in all walks of life.”

“I saw them not just survive with HIV, but thrive in life for the first time.”

Though Saundra’s work was full of faith, love and dedication, one of her greatest labors of love was presented to her in the middle of the decade. Her best friend, Victor, was sick with AIDS. Saundra left her job, moved to the Pacific Northwest and became his caregiver for the last six months of his life.

Over a decade of caring and giving might have taken their toll on most people, but not Saundra. After her best friend died, those who loved and respected her work persuaded her to move to New York City, where she lives and works today.

“When I started working with AIDS in 1988, I thought one person could make a difference and help people stay alive and I still feel that way.”

These days, Saundra coordinates the staff and volunteers in the Treatment Education Department at Gay Men’s Health Crisis, a nonprofit organization that assists thousands of people with AIDS in the nation’s biggest metropolitan area. She oversees the unit that provides HIV treatment counseling, presentations, training, workshops and other critical services throughout the five boroughs of the Big Apple.

“Treatment isn’t exactly sexy,” she said when asked about the challenges of her job. “Our goal is to stay on the cutting edge. How do we stay fresh, develop a niche? Some of the stuff we do involves getting away from the workshop model altogether.”

Saundra has been at GMHC for nine years, but her enthusiasm for helping others hasn’t waned in the least. Over the years, Saundra has made a comfortable niche in the HIV treatment community and is frequently sought after to present at conferences and workshops throughout the country.  She has dedicated her time and knowledge to train health workers and people living with HIV/AIDS in the Black community throughout the U.S. on the science and treatment of HIV.

“I feel very blessed in my experience with HIV. I’ve experienced a lot of viewpoints: being an activist, sitting in and putting my body on the line; volunteering for the Names Project; delivering food; being a paid provider, seeing how clients live with HIV. It’s been an awesome ride. I’m humbled by it every day.”


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