For Talia, teach others about HIV and women
March 10 is National Women and Girls HIV Awareness Day. On March 10, 1996, when I was five months into my new job as a social worker for women and children with HIV and AIDS at the Children’s Diagnostic & Treatment Center (CDTC) in Fort Lauderdale, Fla., this was just another challenging workday. In 1996 there was little public acknowledgment of anything having to do with women or girls being impacted by HIV/AIDS.
If my co-workers and I were aware of anything particularly meaningful on that day, it was that the numbers of infected women and children in major cities throughout the United States were skyrocketing; and all of those people desperately needed the medical and social services our nonprofit agency could provide. To help meet this escalating situation, I was given a small caseload within 10 days of being hired. By 2000, I was caring for 50 families, the majority having multiple infected members in them.
I believe it’s fair to say that when one thinks about the first two decades of the AIDS epidemic (1981 to 2001), only men come to mind. Women and children did not have media attention, celebrities speaking out on their behalf, or any powerful organizations such as the Gay Men’s Health Crisis or ACT Up to fight for them.
There is a long, bleak history of women being excluded from major AIDS research studies, drug trials, access to early diagnostic testing, as well as access to a potentially lifeextending medication for the disease (AZT).
Women and children knew it was dangerous to reveal that they had HIV or AIDS. Rarely did their friends or even relatives know what they were going through. None of the recurring illnesses, frequent clinic appointments and hospitalizations, weight loss, and children’s absences from school could be explained truthfully. It’s not that these women were in denial; they simply could not share what was happening to them because of the stigma and overwhelming fear of AIDS at this time in the history of the epidemic.
Regarding this apparent self-preservation mechanism, let me share with you the story of one of my young female clients who, in spite of what I’ve just implied, broke the mold about publicly sharing her diagnosis.
I was Talia’s social worker from the time she was 9 years old until age 13. As a child with HIV, she was quite unique in surprising ways — she had no qualms about sharing her diagnosis and was unafraid of the inevitable negative responses. Talia told family members, friends, and even classmates about her HIV status.
After Talia’s mother died of AIDS, she and her siblings went to live with their mom’s sister Joanne. The day Joanne called and told me her niece was revealing her diagnosis to people, I immediately scheduled a home visit. I wanted to understand how she had reached this decision about something so many people were, understandably, not willing to reveal.
“I was born with this disease,” she stated very matterof-factly, “and I’m not ashamed.”
It was clear to me that Talia had thought through what had happened to her at birth and had made peace with it. She felt it was her responsibility to teach people about HIV and AIDS, to help others from becoming infected, and to give them emotional support if they were infected already. By disclosing her own diagnosis and wanting to help keep others safe, Talia proved herself to be brave and mature beyond her years.
In 2004, I was in a new position and no longer worked directly with clients. One day, Talia’s Aunt Joanne called to advise me Talia had died. She was only 17. Though she had not been my client for four years, Joanne was aware of the trust that had developed between us, and asked me to deliver a eulogy at the funeral, adding that everyone coming knew Talia had died of AIDS. Because she had alerted me to this fact, I was able to craft a different kind of eulogy from others I had written in the past. I didn’t have to keep “the secret.” I could talk freely about Talia’s fearlessness and truth telling. Had she lived longer, she would have undoubtedly grown into a powerful voice for education about the disease and acceptance of people with HIV/AIDS.
Standing behind the pulpit at the funeral, I looked out at the large crowd of people who had come to the church for Talia’s homegoing. Sensing that this might well be the last time I delivered such a eulogy, I wanted to do right by this brave young woman and her loving family. I wanted to include them because of their unselfish acceptance of this terminally ill child and her siblings into their lives.
As I read my eulogy, the congregation vocalized its approval of Talia’s actions and strength. The smiling faces of her relatives reflected their pride in her character.
Because I am a saver of things, it was not difficult to find that eulogy written 19 years earlier. Here in part, is some of what I said that day remembering and honoring Talia — her precocious courage and her too early passing.
“Talia was part of a family that had experienced a tremendous amount of loss and grief. In spite of this, they never stopped taking care of each other. They cared for Talia’s mother until her death, and then they continued to care for Talia until her passing.
“Talia’s Aunt Joanne made a deathbed promise to her sister that she would raise Talia and her siblings as best she could. She kept that promise. When Talia’s older sister, Teresha, became a teenager, she, like the grownups, took on some of the responsibility for helping with Talia.
“Last night at the viewing in the funeral home, I told Teresha that she had done a beautiful job of caring for Talia. Teresha’s eyes filled with tears as she answered me, her voice heavy with emotion.
“‘Oh, but I wasn’t finished taking care of her. I had so much more to give.’
“When I sat down to write this eulogy, I began to wonder where this family’s wellspring of strength came from. How was it that Talia was so brave and honest about her illness at a time when few others were? How was it that Teresha, just a teenager at the time, so selflessly shared in the caregiving responsibilities for her sister? Where did Talia’s passion to teach others about HIV and AIDS come from?
“I believe that until there’s a cure for AIDS, it’s up to all of us to reach out, offer support, and teach others Talia, so that no one — child or adult — ever feels alone while battling this stigmatizing and terrifying disease. In this way, we will honor her short but beautiful life.”
Though I have retired from my years of work with women and children with HIV/AIDS, my clients’ voices, which were not heard during the early years of that epidemic, still resonate deeply with me. Their stories are missing chapters in the history of the AIDS epidemic in our country.
Today, the world is very different for women and children who are thriving while being HIV positive. Thanks to research studies specifically focused on women and children with HIV, advances in education, prevention, and access to highly effective medications, and the availability of more specialized health care providers, HIV is now viewed as a chronic disease like many others, and no longer a terminal one.