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Nov. 28--S.M. Young first saw the face of AIDS on her younger brother. In 1991 he died at 28. He left behind a 5-year-old son. A couple of years later the disease would take his girlfriend.
Toni Nelson says she first saw it after rushing to her estranged father's bedside just days before he died from the fatal virus.
"As it turns out, my father had HIV for 10 years without even knowing it," Nelson wrote. "He found out about a year before the rest of the family did but was ashamed and feared that everyone would disown him. I guess I could understand, but I was his daughter ... his only daughter. Why couldn't he talk to me?"
The diagnosis of a brother, the loss of a father, or the act of simply hiding the condition of an infected relative are all stories that are part of the 58 first-person narratives in a new landmark book of essays about how the AIDS epidemic has disproportionately affected black families.
In "Not In My Family: AIDS in the African-American Community" (Agate Publishing, $16) blacks affected by the deadly disease share their pain and wisdom after decades of suffering in silence as HIV/AIDS hit nearly every area of the community from basketball legend Magic Johnson to everyday people like Jeffrey Dwayne Robertson, an HIV-infected AIDS activist.
The collection, a patchwork of personal essays, stories and poems, was written to galvanize public attention around the epidemic, according to editor Gil I. Robertson IV, Jeffrey's brother.
"Black America, we have a problem," said Robertson, a veteran journalist whose syndicated column, "The Robertson Treatment," appears in more than 30 newspapers. He also is president of the African American Film Critics Association.
"HIV/AIDS is running rampant through our communities," he said, explaining his inspiration for the project. "Many of us are sick, dying, living in fear and shame, and many of us who aren't afflicted are living in denial. Worse too, many people in our communities act as if they are immune to the problem altogether. 'Not me.' 'Not in my family!' And that's the problem."
The fear factor
He said many factors have contributed to the skyrocketing HIV/AIDS rates, including "dysfunction, fear, poverty and lack of information."
Former U.S. Surgeon General Joycelyn Elders said in a recent telephone interview, "This book is very important because we see the many different sides, opinions and phases of this disease and how it affects families in ways we have not seen before through our own families or people we know."
Elders, who wrote an essay for the book, said HIV/AIDS is a major problem in the black community.
"There are many who don't know they have the disease, and just because we got good drugs now to treat it doesn't mean everybody gets them," Elders said. "This books explains in very simple language that anyone can read and understand that we still got a problem and we all need to do something about it."
The epidemic first garnered national headlines in 1981 as a "gay men's cancer," striking homosexual men and intravenous drug users.
But according to the U.S. Centers for Disease Control and Prevention, the number of blacks being diagnosed with AIDS has increased from 25 percent in 1985 to 49 percent of all diagnoses in 2004.
More women infected
And black women are the new face of HIV/AIDS. Now, women account for nearly 30 percent of new diagnoses in the United States, compared with 8 percent in 1985, according to the CDC.
In New York State, newly reported cases among women have nearly tripled, rising from 12 percent in 1986 to 34 percent in 2003, according to an 18-month investigation by the New York State AIDS Advisory Council. African-American and Hispanic women represent 86 percent of the 53,500 women who have been diagnosed with HIV and AIDS in the state, according to the 70-page report released in December.
In New York City, AIDS was the leading killer of non-Hispanic black women 25 to 44 and the second-leading cause of death for Hispanic women 25 to 44 in 2004, according to statistics released this year.
Last week, the United Nations reported the global HIV epidemic is growing, leaving an estimated 39.5 million people infected worldwide. The deadly virus has claimed 2.9 million lives this year, and 4.3 million more people became infected with HIV, according to the UN's AIDS epidemic update report.
Robertson said the book attempts to put "a black community face" on the statistics through sharing personal stories, advice and a call to action from a variety of viewpoints including those from ministers, entertainers, writers, parents and siblings.
It represents the first time a cross-section of prominent African-Americans has combined forces in a book designed to urge the black community, especially families, to come to grips with the AIDS epidemic.
Notable contributors
The book includes contributions from such notable African-Americans as the Rev. Calvin Butts, pastor of Harlem's Abyssinian Baptist Church, singer Patti LaBelle, author Randall Robinson, actors Hill Harper and Sheryl Lee Ralph, and U.S. Rep. Jesse Jackson Jr. (D-Ill.)
Robertson said his own family was left "shocked and in fear" after learning about his brother's diagnosis, which has taken the family years to overcome.
Jeffrey Dwayne Robertson, Gil's brother, said HIV/AIDS became his reality during the sexual freedom of the 1970s, when he allowed himself to get caught up in a sexually promiscuous lifestyle "fueled by the backdrop of disco music, bright lights, bathhouses and drug binges."
He wrote in an essay titled "Living My Life with AIDS": "During that time, within that environment, and having unprotected sex, I would have gotten it from a man or a woman."
In her essay, comedian Mo'Nique says that many blacks remained silent because AIDS has a stigma of being "a shameful disease." She talks about the family secret of having an uncle with AIDS. Even after he died, she said, her grandmother continued to tell people he died from kidney problems.
"For a long time, AIDS didn't have a face in Black America," she writes in her essay titled "AIDS: You Better Ask Somebody!" " ... In '85, the only one we knew was Rock Hudson, and he didn't mean anything to us. Then we started to put a face to it, and we knew the people who were affected. It was our mothers, sisters, cousins, best friends, and lovers. We knew that they weren't horrible people that did anything bad. So we became conflicted that the [stuff] they had been telling us wasn't true."
A need for education
One book contributor, Dr. Rani Whitfield, whose family practice is in Baton Rouge, La., said there is a lack of understanding, education and dissemination of information in the black community about HIV/AIDS.
"The book, hopefully, will spark nationwide discussion about the topic of HIV/AIDS," said Whitfield, whose essay is titled "Giving Back: The Greatest Love of All.
The discussion, Whitfield said, needs to move beyond homosexuality and "down low," or secret, gay sex among men. He said drug use, the potential of spreading AIDS among black men in prison and heterosexuals engaging in risky behaviors often get left out of the discussion.
"Collectively, these all put African-Americans in a battle that we cannot win, that is until the discussion begins," said Whitfield, who has organized a book signing and discussion in his native Baton Rouge in January.
In addition to the book, others in the black community also are stepping forward. A report endorsed by many black leaders and written by Robert Fullilove of Columbia University's Mailman School of Public Health was released as part of a series of events leading up to World AIDS Day Dec. 1. The recommendations include the creation of more affordable housing, testing prisoners, and a more public discussion of the issue of "down low" gay sex.
Black churches, which have come under fire in the past for not doing enough to stop the HIV/AIDS epidemic, also are moving to center stage, in part, through their contribution to the book.
Butts, chairman and co-founder of the National Black Leadership Commission on AIDS, said a national coalition of black ministers is forming across denominational lines to draw up a national agenda to raise money and shape policy to help end the epidemic.
He compared the new ministers' initiative to the civil rights movement of the 1950s and 1960s and said African-American clergy would galvanize their resources to fight an enemy that has the potential to "obliterate our community."
The group, Butts said, would be calling on the government "to demonstrate responsibility ... by accelerating its HIV/AIDS prevention, treatment and care agenda."
Reaching out further
The group also is calling on the CDC to launch a comprehensive health initiative behind prison walls and on "the media to tell the truth about our [black clergy] work."
Butts said the group also would reach out to white ministers. "The scourge of HIV/ AIDS crosses ethnic and religious lines and spans all levels of America's economic echelon," he said.
Prominent church leaders in the HIV/AIDS ministers' movement include the Rev. Amos C. Brown, senior pastor of the Third Baptist Church in San Francisco, Warren H. Stewart Sr. of the National Baptist Convention and Bishop T.D. Jakes, pastor of the Potter's House of Dallas. The group is expected to unveil its plans next year in several events leading up to Black History Month in February.
Butts said the black church has not been given credit for caring for those infected with the deadly disease from the beginning, though he admits that the church, like everyone, may have been slow off the mark in dealing with AIDS because nobody knew about the disease. He saw firsthand how the disease tore apart families either through death or abandonment.
"For many years we were seeing people dying, but we didn't know what was wrong with them," he said. "We were told it was cancer, and often they were gay men, but there were also several young women.
"When we learned of HIV/AIDS diagnosis ... at that point we began to investigate, because it was our church members who were dying. That was our involvement early on taking care of members."
Butts said part of the coalition's agenda will be to set the record straight and secure money for churches already proving HIV/AIDS-related services.
Agenda in Washington
Rep. Greg Meeks (D-N.Y.) said black members of Congress from around the country would unite behind a similar agenda in Washington.
"Directly or indirectly everybody has known someone with a family member affected by HIV/AIDS," said Meeks, whose essay, "Bearing Responsibility," appears in the collection. "The question now is, Have I done my fair share to ring the bell to wake up people? The finger-pointing has to stop -- that's not getting anybody nowhere. We are in the midst of an epidemic, and we need to raise a unified voice to draw attention to the crisis."
Copyright 2006 Newsday Inc.
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Copyright (c) 2006, Newsday, Melville, N.Y.
Distributed by McClatchy-Tribune Business News.
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