African Americans Tell Their Stories About HIV in a New Book

An Interview With Gil Robertson

Contributing Editor

Today's HIV Frontlines U.S. interview is with Gil Robertson IV. Gil's brother, Jeffrey, tested HIV positive in 1982 and their family, defying the norms of the time, immediately surrounded Jeffrey with love and support. Inspired by his family's experience, Gil began gathering stories from dozens of African Americans about how HIV had altered their lives. The result is Not in My Family: AIDS in the African-American Community. In this one-of-a-kind anthology, leaders such as the Reverend Al Sharpton and entertainers like Jasmine Guy and Mo'Nique write about HIV along with activists, artists, HIV-positive people and their relatives. Whether you are looking for smart commentary on issues that keep the HIV pandemic raging in black communities, or longing for models of supportive responses to a loved one's HIV diagnosis, this is the book to read. I've invited Gil here to discuss his book and his amazing family.

Welcome, Gil Robertson.

Thank you.

Thank you so much for talking to me today.

Absolutely. Thank you for sharing the work and vision of this project.

Of course, our pleasure. Can you tell me a little bit about how your book, Not in My Family, came about? I understand that it was the culmination of a long journey for you.

Yes and no. I'm a journalist, so as part of my work I cover interesting and provocative and topical subjects. Obviously, given my personal history with HIV and AIDS, it was something that was always in the back of my head. My older brother Jeffrey has been living with HIV for over a quarter century now -- 26 years and counting. We talked about sharing our family's story with others in hope of helping other families get through a lot of the difficulties associated with living with someone who has HIV/AIDS, knowing someone who has HIV/AIDS, all the different emotions that an individual and their family would go through when dealing with these circumstances.

What was your family's -- your mother's and your father's -- initial reaction to your brother's diagnosis?

Our situation is why the book became an anthology, because as I began to put together the initial groundwork for the project, I very quickly discovered that our family was a bit of an anomaly as things go with this particular disease.

"We were going to stick by my brother as he went through this journey with HIV; there was never any question, never a hesitation."

Unlike most families, unfortunately, our family took a circle-the-wagons approach where everyone in our immediate family and extended family was just there. We were going to stick by my brother as he went through this journey with HIV; there was never any question, never a hesitation. There was certainly a willingness, there was an immediate buy-in -- that we are family and we're going to respect those ties that bind us as family.

After your brother found out that he had been infected, did he tell the family right away, or did he have some trepidation?

In terms of the timeline, I'm not really sure. By the time he tested positive, he and I were already living away from home. I was called home for a family meeting. I duly showed up and my brother met me, and we went to the bedroom that we shared as children, and he told me.

All the range of emotions that one might expect upon hearing such heavy news went through my head. It seemed in some ways just surreal, because as he was telling me this, what I heard was that he was telling me that he was going to die. Of course, I was just in shock. We all know that all of us are going to die. But at the time, we're talking 26 years ago, it was like he was saying: I'm going to die soon. Back then, folks were dying in a calendar year upon testing positive for this thing.

It was difficult. It was certainly tearful and it was hard to grapple with what the outcome of this could be, and what it would do and mean to me as an individual and to our family as a whole.

Watching my mom -- my mom apparently knew about my brother's diagnosis a little bit longer than I did. I'm not really sure when our dad found out, except that he said something to me one day, in passing, that let me know that he knew.

The family just pretty much went on as normal. Obviously, everyone immediately went to the library. The Internet wasn't a major fixture at that time. But we went about collecting information that would hopefully prolong his life and maintain his good health.

We took certain precautions in terms our interactions with him. Family dinners became, for a while, an exercise in making sure that the proper cleansing things were available such as bleach, and washing dishes, and things like that, because that kills the virus. Early on -- again, we're talking a quarter of a century ago -- there was some exercise in trying to make sure that everything was all good. But there was never really any kind of controversy.

I just can't imagine how a person can abandon a family member. I mean, how do you love someone one minute and then throw them out the door and have nothing to do with them the next? There was never any of that in our family, and even in our extended family the tone that our parents represented was followed by each and every member in the family.

"Shame on those families -- on anyone -- who takes love, and takes the bond of family, so lightly that they would use something like HIV to diminish another person, a person that they supposedly love!"

Although, when I spoke of trepidation, I was speaking of some vibrations coming from certain quarters within our extended family that were not as welcoming. But everyone came around fairly quickly and again, I have to applaud our parents because they truly set the standard -- which was: This is our son, this is a member of this family, and we're going to support him. Shame on those families -- on anyone -- who takes love, and takes the bond of family, so lightly that they would use something like HIV to diminish another person, a person that they supposedly love! But I'm going to get off my soapbox.

It's wonderful, especially in the early days, that your brother had the vast majority of your family's support right off.


But it does sound as if, back then, people didn't know how the virus was transmitted. Did he tell you all how he got infected? Did he have any idea?

We had assumed through sexual contact. I mean, my brother's gay. That, at the time -- according to the media messages -- was the primary way of exposure. That assumption was made, but he really doesn't know who the partner was who gave him the disease.

Again, that wasn't a big deal. The fact was that he had something and it was important for us to offer our support.

As you say in your book, that was quite an anomaly especially back then. Even now it's unusual to have a family be so supportive. But getting back to the book, and speaking of family: The book has such a powerful, evocative title. Why did you title the book Not in My Family?

"It is really time for Americans as a nation, and black America in particular, to come to grips with the fact that HIV and AIDS is not a disease that you can run away from. You can't negotiate it, you can't out talk it. It's something that we have to face and deal with if we're ever going to solve this problem."

It was meant to send a message out to folks that they've got to stop living in this bubble, they've got to stop isolating themselves from this issue. This is something that affects all of our families, either directly or indirectly. It is really time for Americans as a nation, and black America in particular, to come to grips with the fact that HIV and AIDS is not a disease that you can run away from. You can't negotiate it, you can't out talk it. It's something that we have to face and deal with if we're ever going to solve this problem.

What do you think is particularly hard for African-American families and African-American communities in dealing with HIV?

I think a lot of it really has to do with a combination of things, including a lack of information and a lack of resources. In some quarters there are still a lot of questions about how this disease is transmitted and how people are exposed to it. There are still a lot of half-truths and old wives' tales and urban myths associated with this disease that really need to be dispelled. There's a lot of ignorance; there's a lot of apathy as well.

I think familiarity breeds comfort. That was really the crux of why I gathered the cross-section of voices from the community for the book. I wanted people to see that: Oh, so-and-so has a story, this person has a story -- folks that they could relate to, folks that they perhaps admire. Hopefully that would give other people the courage to step out there and confront this disease in a way that was proactive and would move the community, move science, move mankind forward in being able to find the solution.

Folks are still into hiding, into denying the existence of HIV. As long as you deny something exists, you're not going to solve the problem. The first effort that anyone has to make in dealing with something is confrontation. After you've confronted it, you can begin to devise a way of dealing with it in a constructive manner.

The title speaks to the fact that it's time for all of us to recognize that HIV and AIDS are in our lives, either directly or indirectly. HIV is something that we don't want to get, it's something that we want to be aware of, and it's something that, for those in our lives who may have it, it's a situation where we want to be able to provide compassion and support.

The conversation breeds familiarity, which hopefully will alleviate the silence around the disease. If you know that folks that you respect and admire have a story to tell, it allows you to come out of the shadows and reveal your own truth.

What were your specific goals with this book, in terms of who you wanted to read it, what groups or communities, in addition to the African-American community?

I really wanted everyone. Everyone, I think, could benefit from the stories that I shared. I wanted all Americans, all people around the world to be able to draw some comfort and some solace from these stories and from these experiences that are shared in the pages of Not in My Family.

[U.S. Representative] Maxine Waters said a year ago on Capitol Hill that Not in My Family was a book that every American family should have. It's my title, but I would agree, it really is an incredible piece of work. It's funny that when you're in something, you often can't really see the impact that it's having on others. But I must tell you, I've gotten calls and letters and e-mails and texts from folks who tell me that it really changed their lives.

Most recently, I was reached out to by a friend of mine who bought the book for her sister, whose husband had succumbed to AIDS. She said the book allowed her for the first time in 10 years to have a conversation with her kids about how Daddy died. And I was like: Wow. That blew me away that I could play a role in allowing this family to begin to fully heal from the death of a loved one.

That was really the goal: The book was really an exercise to celebrate my brother's life, to celebrate his resiliency, his spirit in turning every stone to help him manage this disease. It was a celebration of my family for providing him with the support -- mentally, spiritually, financially -- to deal with this situation as well as they could. It was also an effort to send a message out to society that this is something that we really need to pay attention to.

My goal for Not in My Family was really for readers to recognize that our community was not a monolith. There are different pockets, different streams of thought within our community.

I really wanted this to be like the family coming together. I think I described it to someone as "Christmas dinner at Grandma's." Everyone's out there living in the world, living their own lives. You have all the different personalities, all the different personality types now sitting at this big family table -- from the debutante, to the professional brother, to the hip hop guy, to the straight-up thug. You have Shaniqua sitting there with Biff. We're having a conversation about this, and Grandma gets to the head of the table and she says, "Look, we have a problem in this family. It's HIV and AIDS. We're going to sit here and we're going to talk about it. We're going to throw all this stuff on the table. When you leave here today, you're going to leave here, at least, giving some thought to the situation and what we can do on an individual level and on the collective level to find some solution for these circumstances."

You definitely do that in terms of bringing everyone to the table. Have you covered HIV and HIV-related topics in addition to your work on this book?

Early on I did. Early on, 20 years ago, I guess. Soon after finding out and soon after embarking on my journey as a journalist, I did a couple of stories on HIV for a hip hop publication called Rap Pages. I contributed some pieces there, one about our family and another one about a facility in Los Angeles that gave care to individuals who were dealing with HIV.

I wrote a couple of other pieces -- I was fairly open about the situation that our family was dealing with from Day One. I didn't see what the big deal was. If someone was going to have a problem with me because my brother was HIV positive, then that was their problem. I certainly wasn't going to deny him in favor of someone else. Whenever I was asked to comment or write about my brother's situation or how my family has reacted to it, I would step to the plate.

Through all this, because you have been so open about your brother's status and about your family's reaction, have you encountered a lot of reactions that are based in homophobia specifically?

Yes, we've gotten some of those. I don't know whether it's a reaction of homophobia or what, but there have been callers into radio shows and things like that about people who feel that HIV is retribution for an act against nature. Again, I'm not going to really tolerate that, and I think my energy probably lets people know that I'm not really the one to make those comments to. Fortunately, I haven't really had to deal with a lot of that.

For the last year, since the release of the book, I've been giving quite a few lectures on the topic, particularly in the African-American community or in disenfranchised communities across the country. You have to deal with a lot of silence and a lot of trepidation from audience members who really don't know how to come out and say that they have a story to tell, that they have concerns about this situation. Folks are very preoccupied about what others might think.

Typically, during a presentation, you might sometimes spend an hour breaking through a lot of the barriers that exist around this subject. The good news is, once you're able to get past that, it's just incredible. It flows like water down a river.

Do you think that after all of this work -- the book that you've put out, and the efforts of so many organizations, like Black AIDS Institute and also Balm in Gilead, working in churches, and other groups, that there's been an effect? Have you seen a dramatic decrease in HIV, or a change in peoples' attitudes, or institutional attitudes towards people with HIV?

The efforts of Phill Wilson [founder and CEO of Black AIDS Institute] and Pernessa Seele [founder and CEO of The Balm in Gilead] have been beyond exemplary -- they have certainly been loyal and dedicated foot soldiers in pushing forth an agenda that speaks directly to the community, and speaks directly to the concerns and issues around this particular disease in black America. Has it caused people to change their behavior? I'm not really sure. We're still seeing caseloads remaining equal, remaining level with where they've been for a while now.

"I think because of my project, because of _Not in My Family,_ because of efforts put forth by the CDC and by Balm in Gilead and Black AIDS Institute, there's a greater awareness, a greater understanding that HIV needs to be addressed."

I think that the word is spreading. I think because of my project, because of Not in My Family, because of efforts put forth by the CDC [U.S. Centers for Disease Control and Prevention] and by Balm in Gilead and Black AIDS Institute, there's a greater awareness, a greater understanding that HIV needs to be addressed. Is it being addressed in the way that it should be? One can only look at the presidential primaries the way they're going on right now. A conversation about HIV and AIDS in the community hasn't really been put out there, even though one of the candidates is an African American.

I don't know, I don't know. The book has performed well, the musical soundtrack that is a companion piece for it has performed well. I just signed a deal for an audio book for Not in My Family that will be coming out this World AIDS Day, so I guess we're making some headway. I won't feel we're making enough until the numbers drop drastically. This is a story that's still in progress.

You have such an amazing collection of writers and people who are represented in the book. You've got political folks like [U.S. Representative] Jesse Jackson, Jr., and religious leaders like Reverend Calvin Butts [pastor of the Abyssinian Baptist Church in Harlem, New York]. You've also got Sheryl Lee Ralph, who's been an HIV activist for years, and also Mo'Nique, who's very outspoken from her pulpit, the comedy world. You've got a lot of regular folks also, who talk about their experiences with HIV. How did you decide who was going to be included in the book? Do you have any favorites?

I don't have any favorites. I think that, depending on the week or what mood I might be in when I read the book, a different essay may strike me or say something to me, or feed me, nurture me, in a different sort of way. I think that most readers would agree that all of the stories, all of the contributors, did an excellent job in sharing their truth, in sharing their story, in sharing their pain, their fears, their hopes, their triumphs associated with this situation.

As far as collecting the essays that are included, it really wasn't as difficult as it might seem. I am an arts and entertainment journalist, so I've spent nearly 20 years covering the world of celebrity. It was really just putting the word out that I was working on this project, and folks finding the time to participate. We also put the word out via various message boards online for regular people, for everyday folks who aren't necessarily in the limelight, to make story submissions. Other than that, I just reached out to other people who I thought would be important, that people would listen to, that would make a difference in peoples' lives. People who had respect within the black community. I asked them, straightforward and simply, if they'd like to take part.

You didn't get anyone who was resistant to working on the project or being publicly associated with it?

"The only camp where we just didn't get any answer at all regarding being included in the book were, unfortunately, by and large from the world of athletics and also from the world of hip hop."

I didn't get anyone who was resistant. The only camp where we just didn't get any answer at all regarding being included in the book were, unfortunately, by and large from the world of athletics and also from the world of hip hop. No one came out and directly said no to me. Folks would either just get the information and not remember to call me back, or not remember to follow up. I'm making assumptions here. Some folks -- we did have a couple of athletes -- just happened not to meet the deadline after it was pushed back and pushed back, so what do you say? I don't cover sports, so I guess those people really didn't care. [Laughs.] It was a fairly painless experience gathering the contributors who made it into the book.

That's interesting that you received a more tense response from the sports world and also the hip hop world. Why do you think that is? Feel free to opine about that.

You're talking about African-American men mostly. I think black men have a lot of issues around their identities and the role that sexuality plays into that. Obviously it was very important to speak to that particular group within the African-American population.

We found other voices to pick up the slack, which is why you have the adult film star, Mr. Marcus, who gave us a terrific piece. You have other voices, you have several hip hop journalists, who spoke very well about their feelings and reactions to the situation.

As to why: The attitudes that feed into black masculinity in this country contribute to why those folks remain silent -- attitudes that you can see every day on television or walking down any big city street. The over-the-top hyper-masculinity -- it has to do a lot with peoples' self-esteem, how people see themselves, and things like that.

I have to say that since the book has come out there have been folks from those camps, from the hip hop community and the sports community who have stepped forward and said, "Hey, I wish I had gotten back in touch with you. I do have something to say." If we decide to move forward with part two of the book you'll see an interesting mix, some interesting additions to the existing text.

That's great! That's really good to hear, that you're getting some "post-partum" interest. But you did certainly find people to represent and respond to the approach to masculinity that you're talking about in Not in My Family. Did you assign any of the essays specifically, saying, "I want this person to speak to this aspect of HIV"?

There were specific talking points that I wanted to address in the book. I certainly wanted for there to be some thoughts, some words given to the question of: Would you date someone with HIV or AIDS? I found two heterosexual women and one gay man who spoke to that conversation point. I wanted to be fully representative of the black community. I very deliberately went after some Afro-Latins. People seem to forget that you might be from the Dominican Republic or Puerto Rico, but that your roots are still African in origin, and that if you're living in this country, very often you're perceived as a person of color or a person of African descent.

Nancy Mercado very quickly stepped forward and agreed to give us a piece that offered us the nuances that are particular within the Afro-Latino community. I thought it would be interesting to have Josiah Kibira, an African American born in Tanzania who grew up there but now calls Minnesota home, talk about his experiences in both places. He wrote a really telling piece, a very interesting piece, called "AIDS Has No Tribe."

There was a deliberate effort in making sure that there were some voices represented. Sheryl Lee Ralph was a must. Sheryl has been out there in the front lines for so long that she had to be a part of it.

We wanted to have some humor interjected into some of the pieces as well, which is why we have an essay from the 3 Blacque Chix, which is an acting troupe out of Los Angeles. They deliver their message in a way that the target audience can definitely understand.

Then you have, of course, the congresspeople. Obviously they're community service, so they have their bit to say about the issue and what they've done on the effort.

We have a mix of young people. I was on the phone with a good friend of mine who is a legislative director for Congresswoman Stephanie Tubbs Jones. We were talking about the subject and it prompted her to have a conversation with her son, who at the time was 13. She asked him what he knew about HIV, and during the course of their conversation he told her that he wanted to be HIV positive. Needless to say, I got a call from Melvenia very concerned and she said, "My son wants to be HIV positive."

We got him on the phone and began to try to get into his head. What we discovered was that to a 13-year-old, anything with "positive" attached to it he associates as a good thing. When you get positive marks in school, you're rewarded. So he thought HIV-positive was the camp to be in. Obviously, he was quickly told otherwise. It was interesting because, from the mind of a child, of course a child would associate the plus symbol with something great and the negative symbol with something that's not so great. That was an eye opener, because who would have thought?

We also have the religious community represented in the book. Obviously, Rev. Calvin Butts presides over one of the most important ministries in America [Abyssinian Baptist Church in Harlem, NY], so he's there. I wanted to have voices of folks who had succumbed to the disease, high-level people like Max Robinson, who was the first African-American anchor for ABC News -- I think on any network. His brother -- author, activist, lawyer, great American, Randall Robinson -- gave us a terrific piece. We also have a piece from dance music star Sylvester James. His sister wrote a very touching essay about her brother's life and what he meant to her.

Did you get the most response from any particular piece? Or a distinctive response from any one piece in the book?

Different pieces hit different audiences in different ways. That was obviously deliberate, as we just discussed. I wanted something that spoke to the various communities within the black community. As far as standout pieces, "Sweet Tea Ethics: Black Luv, Health Care and Cultural Mistrust" by Ed Garnes has been a highlight piece. It's a piece that I often use in my presentations.

Was there any particular reaction that any one person or any group of people had to one piece that sticks out in your mind?

There was a great deal of conversation about a piece called "A Revolutionary Act" by Craig Washington, who is an HIV-positive AIDS activist. Over the course of his essay, he is very detailed. He expresses his thoughts in a very unapologetic way. There was some concern that his piece could turn off certain areas of the community. There was talk given to making some edits. In the end, I really had to respect his voice and where he was coming from. The fact is that gay people do have sex, and he describes how they have it! Let's grow up here.

"People who aren't willing to look at the world as it really is shouldn't pick up the book. This is about us not wanting to paint a pretty picture or put on rose-colored glasses. It's about us really wanting to confront the facts and realities associated with HIV"

People who aren't willing to look at the world as it really is shouldn't pick up the book. This is about us not wanting to paint a pretty picture or put on rose-colored glasses. It's about us really wanting to confront the facts and realities associated with HIV and AIDS. There was a lot of talk given to Craig's piece and I'm glad that I stood the course and went ahead and left it as it was, because it's a brilliant piece of work.

In your book, do you address any HIV denialism or any conspiracy theories related to HIV? Some people think it's a conspiracy from the government, or the drugs are really what make people sick, and they don't take them. Of course, that has catastrophic results for the individuals who take that course. Do you cover that in the book at all? Do you talk about denialism?

We certainly cover it in the introduction. There's a fairly extensive intro. There's also an appendix at the back that offers useful terms associated with this disease, as well as a nationwide listing of centers where people can get more information.

"The Power of Truth" by the Reverend Al Sharpton certainly touches upon conspiracy theories, and folks not feeding into denial or paranoia with regards to the situation. There are several pieces that speak to that.

Fortunately, in covering those issues, the essayists were quick to bring folks back down to earth and acquaint them with the realities. It really doesn't matter how a person got the disease. Buying into conspiracy theories isn't going to help your son or daughter if they're living with the disease. It's really about mobilizing -- it's about dealing with the issue at hand in a very realistic and a very straightforward way. We can deal with all the other issues after we've dealt with this one.

This book has been out for over a year now. It came out in 2006, but we've been dealing with the epidemic for over 25 years now. Why now after all this time and with all the work that has been done, why did you feel that this was an opportune time to put this book out there?

It was really just time. The first meeting I had with my brother was in my house, in my den in Los Angeles. Ironically, I ended up finishing the book in L.A., too. I went home to finish it, but I decided to relocate to Atlanta and that's when I really started to pursue this project actively. It probably took us about a year to sell it. It's not a project that you can just throw out there that's going to take wings and fly away on its own. It's a kind of project for which you do need a certain amount of due diligence in order to succeed, which is why I appreciate your taking this time to provide another platform for it.

My life is very, very busy, as I mentioned. It probably, all together, took me about four years from the point of me sitting down with Jeffrey and saying, "Hey, do you want to do something?" to actually getting it done. That was largely on my scheduling, that I really just didn't have the time. I don't have a really interesting story to tell you, other than that it was just me living my life that kind of got in the way.

There wasn't an event or something that made you feel that this was the time to have it?

No. It was amazing that no other book had been released similar to Not in My Family. You had a lot of books talking about the disease, talking about the black community and the disease, but you had never had a book where black people were talking about the disease themselves. It's crazy that it took 25 years into the epidemic for someone to organize a group of African Americans to share their thoughts and feelings about a disease that disproportionately affects them.

I drew a lot of my information and facts from Randy Shilts's book And The Band Played On. There are a lot of books out there since Mr. Shilts's book that have spoken to this disease and have offered explanations or attempted to bring about a better understanding as to why this disease is happening now and who it's happening to -- the population groups that are being affected.

I'm glad that I, hopefully, will change some lives, and make a difference in how people are living and coping with HIV.

It sounds like the book already has and will continue to as well.

I certainly hope so. The one thing I enjoy the most really is interacting with young people and talking with them about the subject. The workshops that we have, "Let's Talk About Sex in the Age of HIV and AIDS," are really crowd pleasers. The students walk away feeling different, and prepared to really make a statement and make a difference among their peer groups and in their home communities. I'm in awe at the reaction, and the ability to influence young people, and all people really, in some way with the messages that are featured in Not in My Family.

Is there anything else that you'd like to say to our listeners and our readers?

Again, thank you for this opportunity. The Body does phenomenal work and I'm certainly glad that it's there as a resource for people.

Please visit the Web site, A reminder that there is also a music companion, "Not in My Family: Songs of Hope and Inspiration" through Sony BMG. It features Kirk Franklin, Donnie McClurkin, Tramaine Hawkins, Byron Cage, and other top gospel acts singing songs that hopefully will inspire people to make a difference and to live their lives with their heads held high -- those folks who have been affected by HIV and AIDS. That's basically it.

Thank you so much, Gil, for taking the time to speak with me and tell me about this amazing book. Good luck with it, and it's been a pleasure speaking with you.


To read excerpts from Not in My Family, click here.

For more information on the Not in My Family book, CD or workshops, or to contact Gil Robertson IV, click here.

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Gil Robertson IV

Gil Robertson IV

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