Shirley Royster: AIDS Activist and Survivor

In 1986, Shirley Royster, then 39-years-old, learned that she had been exposed to the virus that caused AIDS. The news wasn’t a complete surprise to her; she had spent a number of years on the streets struggling with drug addiction. When she learned that her former girlfriend, a woman she shared needles with regularly, had died from AIDS, Shirley knew she needed to get tested.

In the early days of the disease, the response was the same everywhere Shirley went; the only information she was given was ‘get your affairs in order.’ Royster heeded that advice and made arrangements for friends to care for her two small children when she died. For AIDS patients at the time, it wasn’t a question of ‘if’ you would die – it was simply a question of ‘when.’

One of the most difficult parts of living with AIDS at that time, Shirley remembers, was the lack of information and support. During the first six years of her diagnosis, she didn’t show any signs of the disease and her T-cell count was normal. She was eager to maintain her health, but no one could recommend treatments for staying healthy. In fact, it took her years just to find a support group for women with HIV.

In 1992, Shirley’s T-cells were destroyed by another drug, and she began what would be a series of treatments for the disease. People living with AIDS in the early 1990s were often given complex drug cocktails that included AZT, a time-sensitive drug.

It was during this time period that Shirley began shifting her career. She had long been an advocate for vulnerable groups, including women suffering from domestic abuse and families facing eviction. Through an AIDS support group at The Dimmock Health Center in Roxbury, Shirley met HIV survivor Jim Campbell – a man who would change her life. Jim was a tireless advocate for people living with HIV. He fought for HIV for funding and research, standing on the side of the consumer. At Jim’s invitation, Shirley began attending meetings at the State House, the Department of Public Health, and many other locations. Soon she became involved with another group, Positive Directions, that trained people with HIV to speak about their experiences to Boston Public Schools students. Through these outreach initiatives, Shirley was able to bring to the community the information and resources that had been absent for her when she was first diagnosed.

Despite the advances in education and advocacy, this was still a difficult time in Shirley’s life. She was losing friends on a daily basis. Her days were filled with meetings; her evenings were spent at homes or hospitals to sit on death watches for loved ones. The disease was so unpredictable, she remembers, that one day she would see a friend who seemed to be doing alright, and two days later they would be gone. Survivor’s guilt brought a whole new dimension to her reality. Shirley continued on living, while many of her friends with the disease died.

In 1996, the introduction of a new antiviral drug, protease inhibitors, changed the landscape of AIDS. Suddenly, people with HIV/AIDS were living longer, healthier lives. Following this breakthrough, many people with HIV/AIDS – included Shirley – began outliving their life expectancies. With a suddenly brighter and longer future ahead, people like Shirley needed strategies to keep living and find housing and employment.

Shirley and Jim shifted the focus of their tireless advocacy to center around aging with HIV, responding to the needs of thousands Massachusetts residents living with AIDS as they entered their senior years. Over the years, Shirley has worked with some impressive leaders in the fight around HIV/AIDs, including the late Senator Ted Kennedy, Barney Frank, and activist Larry Kessler.

There is no doubt that Shirley Royster is an inspiration to so many people. Faced with her own health crisis, fears, and challenges, she continued to fight for others less fortunate than herself. When asked what has sustained her all these years, a grin crept across her face.

“My partner Catherine, my children, my friends and my faith, that is what has kept me going,” she said. “Every day I wake up is a blessing that I never take for granted.”

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