Strides & Strategies
Timothy Ray Brown Has Been Cured of HIV/AIDS—Now He’s Committed to Helping Find Cures for Everyone
by Alina Oswald

Photographed Exclusively for A&U by Sean Black

During the last century, scientists have been able to find a cure for a long line of deadly diseases, so many have wondered: When is it going to be HIV’s turn? To borrow a line from a statement defining the Undetectable flash collective [A&U, December 2014]: “Where is the cure?”

Or, more pointedly: Where is the affordable, available-to-everyone cure? That’s exactly the question Timothy Ray Brown seeks to answer through his work with the Cure for AIDS Coalition.

Until not that long ago, Timothy Ray Brown was only known in research circles and the media as the Berlin Patient, that is, the first (and so far only) known person ever to be cured of HIV. Nowadays, his name rings that proverbial bell throughout the country and the world.
Occasionally, some people still call him “the Berlin Patient,” Brown shares with me over the phone. While it doesn’t seem to bother him, he adds, “I wanted to take back my name. I think that that would be the best way to get my story out there. And I think it’s appreciated by researchers, too, that I came out.”

Brown is not your usual activist. Or at least, he doesn’t seem to be. He’s soft-spoken, calm. Not necessarily what many might associate with what an activist should or would sound like. And yet, Brown might just be the activist to help us reconsider how we think in terms of finding a permanent solution (or solutions, as I find out from Brown) to HIV and AIDS.

I remember reading about Berlin Patient’s story several years ago. It mentioned an American man living with HIV and leukemia and who underwent a stem cell transplant procedure in Berlin, Germany (hence the name, “the Berlin Patient”), where he was living at the time. But that media narrative might be a very simplistic way of trying to describe Brown’s challenging, and also compelling journey through the hazards of eliminating the virus from his body and, ultimately, to a life free of HIV.

Many individuals living with HIV often look at their lives through a before-and-after filter, a transparent, yet impenetrable wall that might allow them to look back, but not go back to a life before an HIV diagnosis. Timothy Ray Brown has gone back to a life before an HIV diagnosis. He’s living proof that breaking that seemingly impenetrable wall is possible, and that going back to an HIV-negative status is, indeed, something that can actually be achieved.

The story of Timothy Ray Brown doesn’t start with the Berlin Patient or with his being cured of HIV. His story starts in his native Seattle, Washington, a city that saw its first cases of AIDS in 1982. Two years later, when Brown graduated from high school, Seattle’s AIDS cases were in the dozens. Brown went on to take classes at Seattle University, and also, around 1989, joined ACT UP/Seattle. Then, in 1990, he went on a trip to Europe, where he returned a few months later, and settled in Germany and took a job as a translator.

He studied political science in Berlin. It was there, in 1995, that he was diagnosed with HIV. Brown’s diagnosis came at a time of promising changes and medical advances in HIV treatment, when the new medications conferred a Lazarus effect on many of those living with the virus. A few short months after his diagnosis, thanks to those new drugs, Brown’s engagement in HIV treatment became “an inconvenient” (having to take up to fourteen pills a day) but “manageable” task.

But the story doesn’t end there; far from it. Fast-forward about ten years later to a time when Brown was diagnosed with acute myeloid leukemia (AML), a cancer that causes bone marrow to make abnormal cells.

Right away, Brown started chemotherapy to treat the leukemia, under the care of Dr. Gero Hütter, a hematologist, the doctor whose treatment of Brown would cure him of both leukemia and HIV.

Dr. Hütter took Brown’s blood samples and sent some of them to the German Red Cross. His idea was to try curing his patient’s leukemia—and maybe even HIV—by performing a stem cell transplant from a donor with a gene mutation, one that makes someone resistant to HIV infection.

HIV attacks the immune system by connecting to and then invading a certain type of immune system cell, called a T cell. Most strains of HIV use a T-cell protein, called CCR5 (or C-C chemokine receptor type 5) as a co-receptor to invade the host cell. Scientists have discovered that some individuals living mainly in northern Europe carry a mutation in their CCR5 gene, called a CCR5-delta32 mutation that, in turn, protects them from getting infected with the strains of HIV using CCR5 protein as an entry door into the host cell. (A class of antiretrovirals called entry inhibitors disrupts this or other coreceptors and proteins.)

In order to ensure that he had the best chances to cure his patient of HIV, Dr. Hütter didn’t look just for any kind of stem cell donor, but for a donor with this particular CCR5-delta32 mutation. And he found the right donor, also referred to by experts as “donor #61 homozygous for the CCR5-delta32 deletion.”

The procedure was far from a walk in the park. “I’d done a lot of soul searching,” Brown says, recalling his decision to go ahead with the stem cell transplant procedure. “My leukemia was in remission, and I thought, if it doesn’t come back, I don’t want to [go through with it].”
But by the end of 2006, Brown’s leukemia did come back. Shortly after that, it became clear that he was going to have to go through with the stem cell transplant after all.

“They took me off the chemo,” Brown says, explaining that that in itself could mean an increased risk of infection. “[Doctors] did a full body radiation, on my body, to [kill] my immune system and prepare me [for the transplant].

“I ended up having a second transplant, because after the first one, the leukemia came back in 2007. [After the second transplant] I went back to work, and I also went [back] to the gym. And I did notice that before the transplant I could not develop muscle; [after the procedure] I was actually able to regain muscle. That was kind of funny. I don’t think there was any discussion about me having a long term remission from HIV or being cured until [after] the second transplant.”

Doctors checked their patient thoroughly, looking for traces of HIV anywhere and everywhere in his body, ending up finding none. And still, months after that second transplant, Dr. Hütter and his team were very careful not to use the term “cured,” when referring to their patient, and so they called it “long-term remission” instead.

“In fact,” Brown underlines, speaking of Dr. Hütter, “in his paper that he wrote after the second transplant, and that was published in the New England Journal of Medicine, he used the term ‘long term remission.’ And so, actually, I didn’t believe that I was cured until that paper was released.” He laughs. “It took the New England Journal of Medicine [article, for me] to believe [that I was cured of HIV].”

Brown shares his amazing story, carefully using scientific and lay terms. Listening to his story, I wonder how it feels to be cured of HIV.

“It feels very good not [having] to take the medication for HIV,” Brown says. “Not to worry about that.” He goes on, “I don’t mean to say that it controlled my life, because that was something I’d do every day, I’d take my medications, but it felt very good not to have to do that anymore.”

Brown’s answer seems simple, but it’s profound for anyone who has taken antiretrovirals, switched regimens, and worried about viral loads, T-cell counts, and opportunistic infections. Maybe it gives a glimpse into what life would look like for many people, once we have an HIV cure—a sense of relief, breathing room. And that, alone, is amazing. That’s why these days, Brown’s attention is focused on making an HIV cure—or cures—a reality for everybody in need of one.

Timothy Ray Brown has been working on strategies to make that possible. In 2012, he founded the Timothy Ray AIDS Foundation. He also cofounded Cure for AIDS Coalition together with Dave Purdy, an HIV/AIDS activist who also serves as the Coalition’s CEO. (Recently, the Timothy Ray AIDS Foundation website has become one and the same with the Cure for AIDS Coalition, cureaidsreport.org.)

“Originally we were working under the World AIDS Institute,” Purdy explains. “Then we quickly realized that the missions were different, and that we needed to focus all our attention on a cure for a lot of different reasons. So we thought about starting a foundation, and we’ve since decided to create the Cure for AIDS Coalition.”

It feels very good not [having] to take the medication for HIV,” Brown says. “Not to worry about that. I don’t mean to say that it controlled my life, because that was something I’d do every day, I’d take my medications, but it felt very good not to have to do that anymore

As mentioned on its website, “The Cure for AIDS Coalition is a first of its kind AIDS organization in the world, a public benefit corporation whose sole mission is to find a cure for HIV and AIDS.…The Cure for AIDS Coalition seeks to unite, educate, raise awareness and advocate for full funding for research for a Cure for AIDS. It will be made up of a network of organizations, corporations, institutions, governments, foundations and individuals all dedicated to the goal of finding a cure for HIV.”

Brown has become a tireless advocate, bringing his message as a keynote speaker at conferences, colleges, and foundations, and has been featured in an episode of the HBO documentary, VICE. He went straight to the top to make cure research a priority by writing a letter to President Obama. In his letter, which is posted on the Cure for AIDS Report website, Brown mentions that, since he was cured in 2007, he has “given [his] mind, body and soul over to finding a cure for HIV.” The experience has taken him on a journey not only through being cured of HIV, but also through a more spiritual, transformational journey that, at least in part, turned him into the symbol of hope he is today, not only when it comes to an HIV cure, but also a cure for cancer.

It turns out that Brown and Purdy did hear back from (now former) White House AIDS Czar, Douglas Brooks, saying that Brown will be receiving a letter from President Obama. “For the record,” Purdy says, “that’s the first time Timothy [Ray Brown] has actually written a letter like that; actually, anything like that. It’s kind of a big deal for us.”

It seems that working together, Brown and Purdy have helped find solutions to problems seemingly impossible to solve. “Working together [scientists, activists, researchers],” Purdy says, “is a very important part of making a cure come to fruition. And thinking outside the box,” he adds. “[Try] everything. And if it doesn’t work out then [try something else]. Don’t give up!” The Coalition offers primers on the need for a cure, research strategies, and the obstacles (scientific, cultural, and political) involved. Researchers are currently looking at two types of cures: a sterilizing cure (in which no trace of HIV can be found in the body, as in Timothy’s case) and a functional cure (in which HIV remains in the body, but the individual no longer has to take HIV meds).

Dr. Hütter has tried to replicate the Berlin Patient’s success story with other patients. It did not work out.

Doctors in the U.S. have tried similar potential HIV cures, to no avail. There’s the case of the two Boston Patients, who received bone marrow transplants from donors, in 2008 and 2010, respectively. Unlike the Berlin Patient, the Boston Patients received stem cells from donors who were not immune to HIV. Also, the patients were not taken off anti-HIV medications after the transplant procedure. While their doctors, HIV specialists Timothy Henrich and Daniel Kuritzkes, based in Boston, Massachusetts, made the announcement that their patients were free of HIV, they also mentioned that it was too soon to call it a cure. It was too soon. The virus rebounded, months after the patients were taken off their anti-HIV medications.

Then there’s the case of the Mississippi toddler. The little girl was started on anti-HIV drugs right after birth, and the child appeared to be virus-free for the following two years. Her pediatrician, Dr. Hannah Gay, at the University of Mississippi Medical Center, in Jackson, Mississippi, later mentioned that HIV must have been dormant in the girl’s body for all those two years.

“In general, I think that we’ve learned a lot from when I was a patient, from the Boston Patients [for example],” Brown says.

In spite of the setbacks, scientists are not giving up. There are promises, but also obstacles along the way. “I’ve talked with one of the researchers working with a doctor performing these [procedures], and, unfortunately, it’s hard to find recipients,” Brown says. He explains that these procedures could be risky. Meanwhile, patients are doing well on their medications. So, there’s sometimes little incentive for them to enroll in studies, to help find a cure once and for all.

“And that’s what we’re trying to do as well,” Purdy adds. “If you look on our Cure AIDS Report website, we listed clinical trials [available across the country and around the world] for people who might be interested. Because a cure can come from different angles and different parts of the world.”

Purdy continues, “It seems like, back in the day, when people were dying [of AIDS-related causes], they were [more willing] to take risks. I think people are [still] willing to take risks [when it comes to participating in clinical trials to possibly find a cure for HIV.] I hope that people realize that the research benefits them.”

While some researchers are looking at sterilizing or functional cures, some are focused on preventative vaccines. “At first, I was very pro-cure, since no [preventative] vaccine has been found to be effective a hundred percent,” Brown says. “So, I was kind of for a cure. It would be nice [to have] both. In a way we sort of have a [preventative] vaccination in PrEP. I’m very pro-PrEP. I wish it were around before I became HIV-positive. It would have saved a lot of problems.” Brown says “sort of” because, unlike a vaccination, with its occasional boosters, PrEP is an ongoing daily regimen.

Purdy notes, “I guess, arguing about vaccine versus cure, we know that cure gets so much attention, especially from the media. Timothy [Ray Brown] realized that right from the beginning. We actually support all avenues. Interestingly enough, the vaccine [research] group has started to merge somewhat with the cure group. [We] think it’s because they can share knowledge and resources. And they can help each other. Because I think everybody agrees that a vaccine is going to be critical for the long term. Treatment as prevention is critical as well.”

Brown tends to believe that the cure strategy involving elimination or derailing of CCR5 protein might be a way to go. “I’m thinking that that’s going to be one of the keys to getting rid of HIV,” he says, while explaining that he’s also open to considering other strategies.
“I’m proof that HIV can be cured,” Timothy Ray Brown says. “But we have to find out better ways to do it, because nobody wants to go through what I went through, [but] if you have tested positive, don’t give up! You can do very well on medications.”

And, he adds, ever the caring advocate: “Also, and I’m saying this as a former smoker, people living with HIV live a usual lifespan, unless they smoke!”

Find out more about Timothy Ray Brown and his work at www.cureaidsreport.org.

Alina Oswald is Arts Editor of A&U. An accomplished photographer, she is also the author of Journeys Through Darkness, a biography of artist Kurt Weston. Visit her website at: www.alinaoswald.com.

Planting Magic
Julie Newmar and John Newmeyer, sister and brother, have supported the fight against AIDS—her, with wit, wisdom and warmth at fundraising events, and him, with front-lines advocacy and research
by Dann Dulin, with Hank Trout

Photographed Exclusively for A&U by Sean Black

Julie Newmar has a decidedly ethereal quality, almost otherworldly, not unlike the iconic Catwoman she portrayed in the wildly popular sixties television series, Batman. Julie is soft-spoken, evolved, spiritual, mystical, and an extraordinary beauty, raising the bar high as the New Normal for octogenarians.

Her unassuming Brentwood home in Los Angeles is also bewitching. An avid gardener, she has created an exquisite landscape of lush foliage that wraps around the house. From the street, her residence hides behind blooming rose bushes (a rose, begonia, and daylily are named after her), vine-laden trellises, and tall trees.

Strategically placed modern sculptures, one that even resembles Julie, are ensconced within the greenery. There’s a large waterfall in the backyard, constructed with massive prehistoric stones. Next to the water is an Alice in Wonderland mirrored door and not far away is a rubber snake resting by a tree. It looks frightenedly real! Rose bushes in the front yard are named for Marilyn Monroe, Oprah, Julia Child, and Betty White. A brick pathway meanders through this enchanted forest.

“I garden, therefore I am,” she writes in her 2011 book, The Conscious Catwoman Explains Life On Earth—part memoir, part self-help, and part spiritual. Gardening for Julie is an art that is vital and healing. It’s her life force. It brings her happiness. She envelops herself with the “ecstasy and choreography of nature” to think, to renew, and to refresh.

She designed the garden mainly for her son, John Jewl Smith, who lives with her. (She was married from 1977–1984.) John, thirty-five, is living with Downs syndrome and is deaf and mute. The garden also provides a place where Julie retreats to ponder on those she’s known who have succumbed to the AIDS epidemic.

“I’m not involved in the disaster part as much as I am involved in the inspiration part,” she asserts about the epidemic. “I’m on the other side of the dark coin.” Through the years Julie has offered her services to such organizations as AIDS Healthcare Foundation, AIDS Project Los Angeles, amfAR, and Children Affected By AIDS. She wore a Catwoman get-up designed by Thierry Mugler, for whom she modeled, at an AIDS fashion show fundraiser (the same one she wore in George Michael’s “Too Funky” video), she emceed an Out of the Closet benefit, and has attended several Ribbon of Hope Celebrations, which honors media companies that keep HIV and AIDS awareness out front in their programming.

“I’d show up and bless things, or do a performance, or just be there,” she points out, about her AIDS support.

“You’ve got the wrong person,” Julie adamantly contends about her contribution to the cause. “My brother is very worthy of this interview.” Her brother is epidemiologist John Newmeyer, PhD. (When she was nineteen, her mother shortened her birth name, Newmeyer, for numerological reasons.) “I’m in the background—way, way in the background.”

“My brother kept me abreast of the epidemic by informing me what he was doing with his patients who were HIV-positive or had AIDS,” she says. “He told me about the safe exchange of needles. In the beginning it sounded odd, as I was not familiar with drugs. Then it made splendid sense.” Dr. Newmeyer has written nearly ninety published works and Julie points to a corner of her office where she has stacked her brother’s books.

When I first arrived a short time ago, I was greeted at the transparent glass front door by Stephanie, her personal assistant and housekeeper, who’s been employed with Newmar for over sixteen years. She instructed me to walk down the shiny wood-floor to the door at the end of the hallway. I pass a large framed painting done by her son, several books lying on top of a contemporary curvy black wood table which included Deepak Chopra’s Life After Death, and a memento wall of framed articles and photographs including a Li’l Abner album cover, a Vanity Fair story on Julie, and a TV Guide cover story of “100 Greatest Episodes of All Time.”

Entering Julie’s office, I’m slightly startled to find a beguiling figure looking beeline toward me, sitting in an ordinary roller office chair, ready to greet. A thirty-six-inch computer screen sits directly behind her on a white elongated desk, with a large Mullion-type window that opens up onto the dense garden, palm fronds, and overhanging tree branches. The room is saturated with memorabilia (including a Catwoman doll), paintings, and paperwork. There’s a fireplace and skylight too. The entire room is, well, bright, with lots of overabundant streaming sunlight.

Ms Newmar wears vibrant multi-colored Bermuda shorts rolled up to just under the knee, hot pink fitted sweater, and a delightful dressy straw hat with a light grey scarf wrapped around it. Her glossy long platinum hair flows loosely out from the hat. (She loves wearing hats.) Deep maroon-colored closed slip-ons and a simple silver watch on her wrist completes the ensemble. Without uncertainty, the lady looks thirty years younger than her age of eighty-three.

Julie is welcoming, gracious, and charming. Even though she was raised in Los Angeles, her diction is refined and has a cosmopolitan lilt to it.

Several times during our time together she refers to her brother. “John is eight years younger,” she remarks, “and in a way he’s my mentor. Everything I know about HIV and AIDS is from his experience. I’m the afterthought.”

A&U contributor Hank Trout spoke with Julie’s brother in San Francisco and understood why Julie nudges him to the foreground. Just looking at his résumé, one can understand why. Dr. Newmeyer was educated at Caltech and Harvard. Some of his published works appeared mostly in professional journals such as Harvard Magazine, The People’s Almanac #2, and CoEvolution Quarterly.

According to his website, Dr. Newmeyer has also “hitched freight train rides, worked on a kibbutz, trekked in the Himalayas, invented and manufactured a board game, made a nearly-successful run for Congress in California, and travelled to the seven continents.”

He began work at the Haight-Ashbury Free Clinic in 1973 and continued working there through the worst years of the epidemic. With his focus on intravenous drug users, Dr. Newmeyer instituted a needle exchange program and a bleach distribution program in 1983, providing clean needles and small portable bottles of bleach (for virus-killing needle cleaning) despite opposition. Dr. Newmeyer said that there is little efficacy in trying to figure out why some people use; we should concentrate efforts on getting addicts healthy again.

“There are four things that work in arresting the spread of the virus in intravenous drug users,” he explained. “Needle exchange, bleach distribution, education, and various twelve-step programs that provide peer support for a life of abstinence, are things that work.”
“A bone healed is stronger than it was before it was broken,” Dr. Newmeyer said. “In the same way, an addict who survives his addiction is stronger for it.”

The government’s “war on drugs” has hindered progress in eradicating HIV in intravenous drug users, Dr. Newmeyer told Hank. “The ‘war on drugs,’ which criminalizes rather than helps users, actually alienates the very people who we should be helping.” We know, for instance, that needle exchange is an effective tool in controlling the spread of the disease—and the recent outbreak of HIV infections among users in southern Indiana, where Gov. Pence vehemently fought needle exchange programs, attests to the devastation caused by not embracing needle exchange programs. His latest book, Mother of All Gateway Drugs, takes a hard look at drug use patterns, and concludes that the longstanding war on drugs has resulted mostly in vast cruelty visited upon people merely because of their addictive disease, and huge waste of money on failed drug policies.

“The war cannot be won. The only sound policy is embraced by four simple words: legalize, tax, regulate and discourage,” Dr. Newmeyer has written.

Dr. Newmeyer takes encouragement, though, from recent developments, such as the federal government’s lifting of its ban on funding for needle exchange programs, and the growing willingness to consider things like the legalization of marijuana without hysterics.

Although he worries about the exorbitant cost, Dr. Newmeyer also welcomes PrEP as a tool in eradicating HIV/AIDS, particularly, he said, for couples who are serodifferent but want to enjoy the intimacy of condom-free sex, and also especially for women. “My concern,” he said, “is the outrageous cost of PrEP. Who can afford it? Who’s going to pay for it? That is something we need to have a serious conversation about.”

Dr. Newmeyer said that he had known some 110 men who died of AIDS, “many of them my former boyfriends,” and although he was, by his own admission, “wildly sexually active in the seventies and eighties,” he remains HIV-negative and lives now in a monogamous relationship. When the subject turned to long-term survivors of HIV/AIDS, Dr. Newmeyer said that he knows dozens of men who have survived and thrived despite their diagnosis. “I am very glad that they are still here,” he said, “and I genuinely appreciate their struggle, their strength.”

In addition to his work in epidemiology, Dr. Newmeyer’s other passion is winemaking. When he was twenty-two years old, on a visit to wineries in France and Italy, “I decided, what a wonderful way to live, and what a gift to pass on.” Hence, thirty-eight years ago, Dr. Newmeyer teamed with winemaker David Mahaffey and another partner to create Heron Lake Vineyard in the Wild Horse Valley, five miles east of Napa in Northern California. The forty-acre vineyard has become a model for utilizing renewable green energy, biodiversity protection, and careful, efficient farming. His expertise in statistics and logistics, acquired through his epidemiological work, make him a valuable asset to Mahaffey’s winemaking.

The affection in Dr. Newmeyer’s voice is palpable when he talks about his sister. “Julie is such a beautiful, life-affirming person,” he said. In addition to admiring Ms. Newmar’s HIV/AIDS work, Dr. Newmeyer also enjoyed talking about his sister’s contributions to drag queens! “Julie has really enjoyed working with very tall drag queens—including RuPaul, Donna Sachet in San Francisco—teaching them how to be more ‘feminine’ despite being six feet tall or taller. Julie herself is such a statuesque beauty, approaching six feet herself, she was a natural at teaching taller drag queens how to hold themselves, how to move.” He is clearly, and rightfully, proud of his sister’s HIV/AIDS advocacy, as well as her acting legacy.

Raised in the Los Feliz area of Los Angeles, Julie Newmar has a lineage that extends to the Mayflower. Her mother was a Ziegfeld Follies girl and her father was a professor at Los Angeles City College, where he taught engineering, and was head of the phys. ed. department and head football coach. She is the eldest of three children. (Her brother Peter died in a skiing accident at the age of twenty-five.) Julie studied classical piano and dance extensively, graduating high school at fifteen. Then for a year, Julie traveled around Europe with her mother and brother, John. Obtaining a 99% score on her entrance exam to UCLA, she spent only six weeks on campus before landing a choreography job with Universal Studios as a teacher and dance double.

At eighteen, she landed the film, Serpent of the Nile, where her entire body was spray-painted gold (see clips on YouTube), way before actress Shirley Eaton was spun gold in the famous death scene of the James Bond thriller Goldfinger. Newmar also played one of the brides in the lavish musical Seven Brides for Seven Brothers.

At nineteen she hit Broadway in Silk Stockings. Then came the musical Li’l Abner, where she

portrayed the voluptuous man-magnet, Stupefyin’ Jones. At twenty-five, she won a Tony Award for her role in the Broadway show The Marriage-Go-Round, starring legendary actors Claudette Colbert and Charles Boyer. She was accepted to the esteemed Actor’s Studio which Marilyn Monroe, Shelly Winters, Karl Malden, and Marlon Brando also attended.

Next, she toured the country, opposite Joel Grey in Stop the World, I Want to Get Off.

Her legs were insured for $10 million (except in the event of theft).

Transitioning to television, Julie played in most of the popular shows of the day: Bewitched, Columbo, Get Smart, Twilight Zone, Star Trek, The Beverly Hillbillies, and The Monkees. She scored a lead role in My Living Doll (playing a robot).

Of course, the pièce de résistance role was playing Catwoman in Batman. “I didn’t audition,” she recounts flippantly, “I think they were just hard up.” It was her brother John and his friends who were responsible for Julie accepting the part. “I had a lovely penthouse in Manhattan on Beekman Place and John and five of his friends had come down from Harvard. They were all sitting on my nine-foot couch and a call came in. I answered. Someone was asking about this Batman series. I knew nothing about it. ‘Would you like to play Catwoman?’ they asked. I replied, ‘What do you mean? What’s that?!’ The guys overheard my conversation and three of them leapt off the couch yelling, ‘Batman’s our favorite program!’ They told me that when Batman is on, they would cut class or drop their homework and run to the TV room to watch.” She stretches her legs out and leans back into the chair. “So essentially, my brother pushed me out the door to get on the plane the next day to California for a costume fitting. Four days later, I was on the set.”

Fast-forward fifty years later, to today, Batman returns! A Warner Brothers animated film, Batman: Return of The Caped Crusaders, was recently released and the original stars of the series, Adam West, Burt Ward, and Julie are voicing it. “Oh, it’s marvelously written; so clever and funny,” she says. Julie scoots up to her computer and shows me the first page from the script. She reads a couple of lines, also articulating the action words that she wrote in the margins of the script as well.

Catwoman never loses, never fails, or falls.

Not a problem, because she’s got nine lives.

Julie chuckles. She thinks back on when she recorded this several months ago in a tiny soundproof recording studio at Warner Brothers in Burbank.

Thanks to Catwoman and her other roles, Julie is firmly ensconced in pop culture. Her popularity as a Hollywood icon is so intense that she inspired a plot point in the 1995 film To Wong Foo, Thanks for Everything, Julie Newmar, a road movie where three drag queens, played by Wesley Snipes, Patrick Swayze, and John Leguizamo, travel cross-country to Hollywood, but end up stuck in a redneck town.

This highly intelligent and self-actualized woman has also dabbled in real estate, returning to UCLA to learn more about the business. She even received two patents, one for brassiere design and the other for pantyhose called Nudemar.

Julie credits her strength to her belief in Christian Science. Her mother and grandmother were Christian Scientists. It provided Julie stamina and discipline. “It’s very helpful…and healthful,” she states. She goes on. “I see young people floundering so unnecessarily. Religion is not dogma or history for me it’s the wellspring of life—goodness, values, morality. If you don’t get that in the first ten years of your life, you’re going to flounder, like getting into the drug world…and all of that.”

Christian Scientists rely on faith, not doctors, and they do not dwell on disease. “I cannot get into other people’s skin,” she pitches straightforward and precisely, fussing with her hair. Since discussing disease is negative for the Christian Scientist, it was a challenge to pull information from Julie about her feelings regarding the epidemic.

“Instead of talking about those people I’ve lost to AIDS,” she offers, “I think of the people who survived and—how did they do it?” (In a follow up email she admitted that Rudolf Nureyev was the person she missed the most). Julie has deep empathy for those who have died and who still suffer today from the disease. “I’m not a good sufferer,” she admits, adding, “I see the good in all things.” She pauses a moment. “That sounds disrespectful because of what you’re speaking of…such a misery. I’m sounding like an idiot. I see you are expecting full-throated answers. I’m a Christian Scientist.”

Julie’s brother acknowledges that faith can complement medical science. “Christian Scientists dwell in quite a different world than I do, given my work as an epidemiologist and my certainty that disease and disease vectors are very real. Julie knows this about me, and doesn’t challenge my work and that of my colleagues in the great battle against HIV,” he notes. “She is shrewd enough, however, to have figured out just where the ‘positive thinking’ of Christian Science is effective, namely in those many ailments which have a psychosomatic base. Some examples: stress-related ailments, neuroses, and insomnia.”

Julie is all about “yes” and inner life. She rises above the fray of sickness, sadness, and depression. Or, one can look at it that she avoids it or denies it. Either way, one can create their own reality. It’s a choice. Julie mentions the teachings of Abraham-Hicks, which is loosely based on several modalities such as reality therapy, cognitive therapy, and rational emotive therapy. Some common axioms of Abraham-Hicks: “Life is not meant to be a struggle, but a process of allowing”; “People are creators of their own thoughts.”; “People cannot die. Their lives are everlasting.”; and “Any desire born in one can be fulfilled.”

Julie’s bookkeeper will soon be arriving, so we wind down the interview. She invites me to lunch, lauding her live-in chef, Emmanuel. “And you’ve got to see the garden!” she politely insists, as lunch is being prepared. She calls out for Stephanie to give me the grand tour.

Awaiting Stephanie, Julie points to a huge image of her that’s standing against the wall. The image shows her in semi-profile; pensively looking down, garbed in a black high-necked outfit, holding a red rose that one petal has fallen. (The photograph is titled, “Tears Fall Like Petals,” taken by Sean Black as an homage to those who’ve died of AIDS. It appears in this article.) Julie tells me about an upcoming AIDS auction where this photo will be sold to raise funds.

As I exit the office door to begin my garden outing with Stephanie, I ask Julie, “What makes you care?” She swiftly responds, “You have to see things from other’s point of view.” Julie takes a beat, then her penetrating acorn eyes blaze and she fervently exclaims, with half-a-smile, “You… have… to!”

Newmar News

Finish this sentence: I feel sexiest when I am . . . When am I not sexy?

 What’s the greatest value of growing older? Basically, you clean up your act and get rid of negativity. You refine all that is good about your life.

What do you believe happens after we die? There’s a continuance, that’s why we have to care for others and ourselves at the highest level.

 If you could have any singer stop by your home to sing who would it be? Renee Fleming.

 Who is your celebrity crush right now? Catherine Deneuve. She’s elegant, she’s forthcoming, and she’s a smart lady.

 Out of the many people you have met is there one in particular who stands out the most? Violet Walker. She’s one of my junior high teachers who taught English and Social Studies. She was from Scotland and came to America to teach. I had her two hours every day. What an elevation that was and how differently I saw the world. There was clarity of thought and my focus was competent. Violet Walker was the ultimate. I wish every child to have a Violet Walker in their life.

Post-production (digital styling) by Eve Harlow Art & Photography (www.EveHarlowe.com). Flower portraits’ credits: Hair: Louise Moon/GRID Agency; Makeup: Garret Troy Gervaise/GRID Agency.

Sean Black is a Senior Editor of A&U. Follow him on Twitter @seanblackphoto.

Hank Trout writes the column For the Long Run for A&U. Follow him on Twitter @HankTroutWriter.

Dann Dulin is a Senior Editor of A&U. He interviewed singer/songwriter John Grant for the July cover story.

Making Her Mark
Globally revered burlesque queen and fashion maven Dita Von Teese channels Golden-Era style while breathing class back into an art form that’s had its bumps and grinds. It’s her decade-long commitment to people living with HIV and those vulnerable to its infection, however, that reveals a beauty deeper than her skin.
Text & Photos by Sean Black

Over the last several weeks, through her social media channels which include a Twitter following of over two million, Dita Von Teese has paid tribute to inspirations Mae West and poet Leonard Cohen, who recently passed; she’s shared #bts peeks of her recent shoot in front of the legendary lenses of French photo duo Pierre et Gilles; and urged Americans to cast their votes. The savviness of her spotlight extends well beyond her scintillating burlesque performances. Von Teese knows how important it is to connect with her off-stage audiences as well. She’s mastered the art of engagement through her inimitable persona and, like any lasting artist, Dita Von Teese wants us to think beyond our erogenous zones.

“I’ve always felt that talking about sex and celebrating it releases the taboos and stereotypes. One of my key messages has always been about the ways we can demand safe sex; finding clever ways of asserting ourselves, and as women, to stop being shamed for carrying condoms and insisting on their use. Aside from reproduction and personal pleasure, sex can bond relationships, promote spiritual growth, and enhance physical and emotional health. I think there is still a long way to go in creating a truly sex-positive society.”

The sheer act of burlesque is, at its core, cerebral, transformative and (yes!) entirely sex-positive—approaching sex not from a place of fear and shame but rather a place of empowerment, agency and openness, all of which are critical in changing the ways we regard and feed our sexual appetites, whether living with HIV or not.

During a special photo shoot and interview, A&U asked Dita to impart some of her wisdom about a sex-positive society considering women in today’s sphere still often feel disempowered when it comes to negotiating sexual relationships and feelings about their bodies.

“With what the statistics look like for young women, it’s more important than ever for them to insist on safe sex every single time, and that’s not always easy when you’re a young woman,” warns Dita. “I was lucky to have grown up in an era before the Internet, without the complications of things like cyber-slut shaming [degrading sex-positive women behind the veil of a screen name]. It is important today how young people learn about sex. I had all my first sex experiences in the safety of a six-year-long relationship, so I was quite lucky…I have concerns about the manner in which young people get their sex education, with the availability of very hardcore porn on the Internet.”

She elaborates on a deeply personal level: “When I’ve been dating, I often felt pressure to have unsafe sex, and then I realized I had major power, and started really using it when it came to having sex on my terms: safely! I stopped being afraid of a guy not ‘liking me’ because I didn’t do what he wanted, and instead, learned how to work safe sex into my seduction technique. I would really encourage young women to read books like Betony Vernon’s Boudoir Bible and Nina Hartley’s Guide to Total Sex. Sexual knowledge gives power, power to decide boundaries and to say ‘yes’ or ‘no.’” According to a World AIDS Day statement, UNAIDS reminds 15–24 years of age is a highly dangerous time for young women. Thus, alongside established safer sex practices, girls and women need access to all prevention options: PrEP, PEP, and treatment as prevention (TasP).

Her candor in the public sphere on sexual wellness began in 2005 when M•A•C Cosmetics approached her to be its spokesperson for their M•A•C AIDS Fund’s Viva Glam campaign (2006–2008), which, with sales of their custom lipsticks, has now raised over $400 million to fight AIDS. Following this act she lent her stylish talents to Macy’s Passport events in both Los Angeles and San Francisco.

In 2009, Dita headlined the Hennes & Mauritz (H&M)/Designers Against AIDS (DAA) collaboration for the Fashion Against AIDS T-shirt campaign. DAA is a non-profit organization that raises AIDS awareness in the international media geared specifically towards young people in industrialized countries using elements from pop culture (music, fashion, design, arts, sports, film, celebrities, etc). Over the years DAA has joined forces with some of the world‘s most acclaimed musicians and fashion designers, such as Timbaland, Katharine Hamnett, Katy Perry, Pharrell Williams/N.E.R.D., Estelle, Yoko Ono, Dangerous Muse, Cyndi Lauper, Robyn, Rihanna, and, of course, Von Teese.

“I love Dita and her engagement in the fight against HIV/AIDS,” DAA founder Ninette Murk tells A&U. “She’s always willing to help us out. We met for the first time at a shoot for Fashion Against AIDS in New York (I think back in 2008) and have been in contact ever since, she keeps asking how she can continue to help DAA and our causes.”

Other HIV/AIDS related causes she has supported recently are Labor of Love in the Hamptons benefiting Housing Works, a nonprofit helping those living with HIV and experiencing homelessness in New York City, and amfAR’s benefit album The Time Is Now, a collection of 80’s covers, for which Von Teese provided a throaty, torch-esque cover of Culture Club’s “Do You Really Want to Hurt Me?”

Michelangelo Lacqua one of the benefit compilation’s producers recalls a poignant conversation with Dita at amfAR’s Cinema Against AIDS in Cannes. “She was so completely engaged about life, about music, she is demure and so, so real. [When we spoke] it was like we went to high school together and we were catching up. I said that [for the album] we needed real and beautiful people not just artists; artists interested in effecting positive change.

“Seeing the strides made in the fight against AIDS, thanks to the efforts of amfAR and the M•A•C AIDS Fund, has made me see that collectively, we can all make a difference. amfAR is committed to finding a cure for AIDS by 2020, and that’s very exciting. Even in the ten years I’ve been affiliated with them, I’ve seen the major advances that their fundraising has achieved.”

For her most recent calendar commitment this past October, Dita hosted the charity fundraiser Photo16: An Auction to Benefit the AIDS Monument at the swanky Milk Studios in Los Angeles. The upcoming National AIDS Monument will be erected in the heart of West Hollywood to memorialize and celebrate the lives of those who’ve passed. This interactive and personal monument will live for this and future generations to remind us about the current state of HIV/AIDS.

I was lucky to be in attendance at the event, which she opened with, “I am sure everyone in this room has lost a friend or family member or an associate to AIDS; knows someone with HIV; or perhaps has witnessed a loved-one living their lives to the fullest even after being diagnosed with HIV with the advancement of HIV/AIDS treatments.”

Assessing the need to go beyond elevating her voice over a boisterous crowd she drops one of the straps of her shimmering indigo-blue dress. Immediately, I am transported back to one of the many memorable scenes in the 1962 film adaptation of Gypsy, starring Natalie Wood and Rosalind Russell. A second emotionally tongue-tied faux pas ensues and her striptease continues with the drop of her second strap. The switch in tone in the spacious room is audible. Dita has seized their undivided attention and continues.

“The fashion photography world is one of the hardest hit by the AIDS crisis, Robert Mapplethorpe…Kevyn Aucoin…Way Bandy, and Herb Ritts, whose work is on auction here tonight; the list of legends lost goes on and on and on. I am proud to stand here tonight with Photo 16 and to acknowledge their generosity and commitment in making sure that this monument comes to fruition. We all have a common purpose, a calling if you will, a need to tell the stories in order to remember that the common collective purpose is to end HIV/AIDS around the globe.”

The dedicated icon, a Michigan native by the name of Heather Sweet, became Dita Von Teese because she was enthralled during her childhood by Hollywood’s Golden Age and this love spilled over into her art. “I like to create a world of fantasy, something that’s a departure from reality. I love beauty and glamour, candy-coated, over the top, humorous and playful Technicolor fantasies. My shows are my childhood ideas and obsessions with the glamour of the Golden Age of Hollywood and ballet, reimagined with eroticism, and of course….the art of the tease.”

Grable, a WWII pin-up queen, was not the only Betty influencing her as a icon of sex and beauty. “From a young age, I had a fascination with vintage erotica, whether it be books, photos or movies, and I got my start in 1991 recreating Bettie Page’s stylized bondage photos and videos. So I guess I’ve just always liked the challenge of presenting sensuality and fetishism in a highly stylized way. My audience is mostly comprised of women, and the LGBTQ community, so it’s a much different thing now than it was back then, and vastly different from burlesque’s Golden Age in the 1930s and 40s when it was meant for the straight male gaze.” She has been performing since 1992.

Originally shy as a child she admits that she really didn’t find her voice until she was eighteen, when she was able to start purchasing clothes and dressing herself, wearing makeup, and dying her hair. “I gained confidence and call myself a Glamour Evangelist because glamour saved me and I love to preach about its power!”

If you want to read about her secrets, the best-selling author has just released her third book, Your Beauty Mark: The Ultimate Guide to Eccentric Glamour, a 400-page guide (It! Books/Harper Collins). Offering a peek she admits, “I think that exercising is so important. Even if I don’t feel so well, maybe dragging myself out of bed, maybe feeling like I might be getting sick, or sore from another workout…I always feel better afterwards and more energized. I remind myself of how fortunate I am to have that time for myself, how fortunate I am to have full use of my body. It’s a gift!” Along with her books she has her own line of lingerie, eyewear, and fragrances offered in four distinct scents.

If you are looking to catch her in the act, her newly revamped burlesque show The Art of the Teese featuring MC Murray Hill launches this February across the U.S., featuring a show-stopping cast of the creme de la creme of the neo-burlesque movement, with diversity in beauty, age, body shape, ethnicity, and gender. “I am bringing back one of my favorite acts that I created for my show at the Crazy Horse Paris, something I haven’t done in the United States before.” Von Teese promises more sparkle than ever before.

Whatever medium she chooses—burlesque, penning beauty tips, or advocacy—it’s Dita’s message that stays with us: Nurturing self-confidence and sexual wellness are acts of empowerment that reinforce feeling good and feeling good about yourself whether you’re a glamour gal or a femme fatale.

“I’m a girls’ girl, as they say; so I don’t have a bad reputation à la le femme fatale…but I sure do love to look like one!”

For more secrets and transformative information log on to www.dita.net. To purchase tickets for her upcoming show tour, The Art of the Teese, visit artoftheteese.com.

Post-production (digital styling) by Eve Harlow Art & Photography (www.EveHarlowe.com).

Hair: Tony Medina. Cranberry robe: Catherine D’lish. Photo assistants: Valerie Mercado and Carlos Rochas. Thanks to Apex Studios.

Sean Black is Senior Editor of A&U.

Editor’s note: This cover story originally ran in the October 2009 issue.

A Hero’s Voice
James Kyson gives voice to his character, Ando, on NBC’s Heroes, but he also has
another voice—the voice to challenge AIDS stigma in the Asian community
by Dann Dulin

Photographed Exclusively for A&u by Adam Bouska

He motorcycled to the cascading falls deep in the woods and he’s about to jump….

No, it’s not James Kyson. It’s a high school student on the 1980s TV series 21 Jump Street. HIV-positive, the young teen can no longer endure the hostility and bigotry of his classmates. This was a racy theme for television back then. Ironically, James viewed this episode at the same time he was taking a sex-ed class at his middle school on Long Island. The scene is still etched in his mind. It was James’ introduction to the disease.

“At the end, Johnny Depp embraces this guy and that was really powerful,” recalls James of the episode entitled, “A Big Disease with a Little Name.” “I think it helped to overcome some of the AIDS stigma at the time. It may have been one of the first, if not the first primetime program to address this subject. There were so many misconceptions about this disease, so much fear. People battling this disease were going through isolation and personal struggle because of the stigma attached to HIV. We’ve learned a lot since then, but we still have so much farther to go,” James points out, sitting comfortably on his ultra white-white leather sofa in his San Fernando Valley home in Los Angeles.

A few minutes earlier, my associate, Terry Ray, and I had arrived a bit early when we buzzed James from the front door intercom at his four-story Spanish-California style condo complex. He asked if we could give him about ten minutes, and then clicked open the black iron gate. We meandered through the street level courtyard of ornamental stone and manicured foliage. Five minutes later James shouted over the railing from the top floor asking us to come up.

James greeted us at his front door and apologized for the delay. He welcomed us into his home, asking us to please remove our shoes. (This cultural practice should be a health practice in every home.) Understandably, the stained wood floors are immaculate. His two-year old pad is spacious and airy, populated by an eclectic mix of antiques, knickknacks, art, and contemporary furniture. I sense that the décor of this young bachelor’s pad has had a mother’s touch. James looks spiffy in long, light-gray polyester workout pants and a white T-shirt that’s elaborately printed with light blue dragons, crosses, and eagle wings that center around the V-neck. A long silver chain hangs from his neck and drapes over his smooth, muscled chest. (He used to model underwear.) He sports a stylish, short brimmed, herringbone cap. “I’m a big hat guy!” he jovially reveals, looking younger than his thirty-three years. “I’m really big on accessories, because I feel like it’s just one of the ways I can express myself. Women have so much more going on with their fashion….”

Heroes, a show about everyday people with extraordinary powers, is James’ big break into celebrityhood, having bought a one-way ticket to Los Angeles back in 2001 as an aspiring actor. Since then he’s appeared in J.A.G., Las Vegas, The West Wing, and All About the Andersons, and James has several films awaiting release: White on Rice, How to Make Love to a Woman, Hard Breakers, and Doesn’t Texas Ever End. He was born in South Korea and moved to New York with his family when he was ten. Kyson, his middle name, comes from the first letters of his parents’ surnames (K & Y) and they added the word “son” to complete it. Kyson also means, “Child of the Spirit.”

Just this morning, the journalists who had been captured by the North Korean government, Laura Ling and Euna Lee, arrived in Los Angeles on a private jet accompanied by Bill Clinton. We briefly discuss this topic before segueing into HIV and AIDS. “What impacted me was when Magic Johnson announced that he had AIDS,” says James, crossing his legs, exposing bluish-grey material-lined Crocs on his feet. “I was in high school when he gave that big press conference saying he’s retiring and not coming back to the Lakers. That’s the first time it became personal. I followed basketball so closely that he had become like a family member. 21 Jump Street, Magic Johnson, and sex-ed class all brought to consciousness that I needed to be fully educated about this epidemic.”

James not only educated himself, he began to educate others. For nearly two years, he’s been national spokesperson for the Banyan Tree Project, a national campaign to alert Asians and Pacific Islanders about HIV/AIDS. He recently made a “Get Tested” PSA and, in May, the Asian Pacific AIDS Intervention Team (APAIT) bestowed upon him an Unsung Hero Award. “James has consistently stepped up to the plate when it comes to AIDS work,” comments Noël Alumit, author and program manager of APAIT. “He uses his celebrity status to help those who need it most.”

James’ motivation in joining the Banyan Tree Project was linked to his experience with the death of his “uncle-in-law,” his aunt’s husband. While James was growing up, his uncle was a strapping healthy six-foot-three man in his forties, but when James was in high school, his uncle was diagnosed with kidney cancer. He was ill for several years and signed up, unsuccessfully, for a transplant. Soon after James moved to Los Angeles, his uncle died. “I was very close to him,” he stresses. James fondles his lower lip for a moment. “Whenever you lose someone close to you, you become more aware. I felt the need to support and get involved because it connects me into the bigger consciousness.”

After James moved to Los Angeles, he attended a musical theater class and made the acquaintance of a fellow about the same age as his uncle. “I was new here, didn’t know a lot about the city, and I befriended him. He was gay and a former dancer. He talked about how his friends were literally dropping like flies in the eighties. This was my first conversation with someone who had had such a big personal loss. I couldn’t fathom it,” he sighs. “I had lost one person; imagine losing ten in a year!” He shakes his head and a few strands of hair fall over his Mars-brown eyes, which he sweeps back under the cap.

Ominously, in the last few years, the rate of HIV infection has risen in the Asian community. Like many other cultures, male Asians can have a machismo mind-set, which acts as a barrier to directly confront the issues of HIV/AIDS. James wants to penetrate that barrier of silence and denial. “That’s why I got involved, so that I could send the message that it’s okay to be who you are,” he offers. “I wanted to give HIV a voice in the Asian community.”

James’ voice can also be heard singing a tune at Hot in Hollywood, an annual event that benefits AIDS Healthcare Foundation and other AIDS charities in Los Angeles and globally. Hot in Hollywood began in 2006 with the idea to be just a ninety-nine-seat theater event, but quickly grew out of that venue. Last year, Avalon Hollywood hosted the event with over a thousand people in attendance. The entertainment event presents musical numbers and cabaret acts starring TV and film actors. “It’s fun because you get to see these people in a different light,” remarks James.

Last year’s event, the third year, raised half a million dollars. James’ friend, Michael Medico, who created Hot in Hollywood, was the executive producer. “Michael is such an inspiration to me. He turned his vision into reality,” he notes, shifting his legs apart, leaning his elbows on his knees, and crossing his hands. In doing so, his sleeve slides up to reveal a tattoo. I interrupt him asking what it means. He grins. “I was twenty-two when I got this in New York. It says justice, righteousness, courage and love,” says James, pointing to each Chinese character. “Though for me it means, live justly and love fearlessly.” He continues. “Hot In Hollywood, or any of the benefits I attend for that matter, is one side of Hollywood I really enjoy. Ya know?” He sits up and laughs. “So much of L.A. there’s this need to be pretentious, keep a certain façade, and they’re super conscious of who they’re seen with and how they’re viewed.”

Any pretention is left to the spectators when James dribbles a basketball down the court to sink a shot. If you spin together his love for basketball and his desire to help others, presto!, you have the Hollywood Knights, a team comprised of entertainers who play for charity—Hollywood’s answer to the Harlem Globetrotters. Not long ago James returned from a USO tour in Hawaii (his first time to the Islands) where the Hollywood Knights played against the Army, the Navy, the Marines, and the Air Force. “I met a lot of guys who just came back from deployment in Iraq and Afghanistan. They were like between twenty and twenty-five years old,” he says, breaking a moment to shoot a bewildered look, surprised by their young age. “We met some high-ranking officers who have been in the military for twenty years. I noticed that all of the soldiers had a huge sense of pride and commitment, even when just giving us a tour of the shops and their bunks. They have a strong belief in what they’re doing.”

He halts. James hears a key turning in the front door. His eyebrows arch, his expressive eyes dart to the side, and his mouth gapes open. “Hold on one second,” he blurts tentatively to me, then yells toward the front door, “Mark?” A female voice utters something in Korean. “Mom? Hi. Oh my god!” he says relieved. “We’re doing an interview.” He whispers an aside, “I had no idea she was dropping by!” They hug as they exchange a few words in Korean. He introduces us, and his mom is friendly and gracious. She’s carrying groceries and James chuckles to us, “This is why I love her!” We engage in a short conversation with her and she offers us vitamin-infused drinks. His mother goes into another room, James brings the drinks, and sits back down. “I think she told me she was coming but I kind’a forgot about it,” he says sheepishly. “I rent out one of the rooms to my old [college] roommate, but he does a 9–5, so I knew it couldn’t have been him coming in the door!”

Who are TV hero James Kyson’s heroes? “Magic Johnson, of course, and Lance Armstrong. This guy had cancer, overcame it, and won seven Tours de France. He just recently finished third. He’s superhuman,” he says. “It’s the amount of training these athletes have to endure that inspires me. Though life may hand you a dirty deal, I admire people like Lance who turn it into something positive.”

Margaret Cho [A&U, February 2000] is another hero for James. “I love and admire her!” he elates with childlike enthusiasm. “She was one of the only Asian-American faces on TV when I was in high school. While I was in college in Boston I went to her first standup, I’m The One That I Want. She speaks her mind! I like that….She’s a good role model, especially since she’s done a lot of work with HIV and AIDS.”

Though ethnically Korean, like Cho, James doesn’t quite feel part of that culture. During his college years he didn’t fit in. Unlike his peers, he was vocal and responsive. “It made me feel like I was very loud and that I needed to tone myself down. But we’re all human beings, I thought. How can you just keep it all to yourself?! People need other people. They need to feel like they can relate to somebody. If you don’t have that, you become so isolated,” he explains, his arms stretched out, palms to the ceiling. “It’s so important to have publications like A&U and campaigns like The Banyan Tree Project. Voices need to be heard.” He’s content as he glances out the living room window onto the street where just down the block is CBS Studio Center where CSI: NY is shot, and where Roseanne, Will & Grace, and Seinfeld were filmed.

The day after our interview, James was off on another charity gig to Atlantis on Paradise Island in the Bahamas. This time it’s with The Band From TV, which includes his Heroes castmates, Greg Grunberg and Adrian Pasdar, along with Hugh Laurie and Jesse Spencer from House M.D., James Denton and Teri Hatcher from Desperate Housewives, and Bob Guiney from The Bachelor and Date My House. Each band member donates to their own charity. At this concert, James will strum the guitar and rock the tambourine. “I’m not as musically gifted as those guys!” he claims, “but I’m there to lend support and have a good time. And hey, if I’m asked to do something for charity, I’m there.”

Thanks, James, your voice is coming through loud and clear.

With deep gratitude to Michael Medico, Leona Comer, and Mark Rebernik.

Dann Dulin interviewed Athol Fugard for the August 2009 cover story.

Living History
With a New Memoir, When We Rise, Iconic AIDS & Labor Activist Cleve Jones Connects the Past and the Future
by Hank Trout

Photographed Exclusively for A&U by Sean Black

“The Movement saved my life.”

With that simple declarative statement, the first sentence in the preface to his long-awaited and just-published memoir When We Rise: My Life in the Movement, Cleve Jones begins to open up his life to us. And what an extraordinary life it has been. We sat down to chat, one long-term survivor of HIV/AIDS to another, about the movement then and now, what we’ve learned and, importantly, what remains to be done.

Cleve was born in 1954, “into the last generation of homosexual people who grew up not knowing if there was anyone else on the entire planet who felt the way that we felt,” in Mt. Lebanon, Pennsylvania. His parents, an educated, professional couple, moved the family to Phoenix in 1968, where they both taught at Arizona State University. Like other teenagers at the time, the draft loomed over Cleve’s head. He was drawn to the Quakers due to their opposition to conscription. From that early age, he saw “big-picture” connections among various movements; thus, he participated in the grape boycotts of the United Farm Workers and the efforts to pass the Equal Rights Amendment. In 1971, he happened to see an article in LIFE magazine called “Homosexuals in Revolt!” and saw that a small group called Gay Liberation Arizona Desert was meeting at ASU. “I am pretty sure,” he writes, “that was the exact moment when I stopped planning to kill myself.”

Cleve’s political education turned into graduate school when he migrated to San Francisco. Here, Cleve met Harvey Milk, who recruited him to work on defeating Proposition 6, the “Briggs Initiative” which would have banned LGBT people from working in public schools, and introduced him to the coalition of labor and LGBT groups boycotting Coors Beer. Later, Cleve worked as a legislative assistant to newly elected Supervisor Harvey Milk, until Milk’s assassination on November 27, 1978, and to Assemblyman Art Agnos in Sacramento, becoming expert at getting things done. Those “things” include conceiving and incubating The NAMES Project/AIDS Memorial Quilt, co-founding the San Francisco AIDS Foundation, and helping to win marriage equality on a national level.

Oh! And writing a memoir! It was with the genesis of When We Rise that we started our conversation over coffee in San Francisco.

“I was recruited by Chad Griffin to help with the Prop 8 trial,” Cleve told me. “The day of our first court hearing, in Judge Vaughn Walker’s courtroom, film director Rob Reiner and his wife Michelle and the rest of our team were there. Afterwards we went for a walk, and I was yakking away, telling my stories as I always do. And Rob Reiner said to me, ‘You have to write a book!’ Well, when Rob Reiner says ‘you have to write a book,’ you better fucking well write a book!” And write he did. “The first sentence of the book was the first sentence that I wrote and it was the first that also, I think, gave me the direction for the book.”

“I had envisioned from the get-go that the book would be divided into half before 1981 and half after 1981, before and after AIDS hit,” Cleve told me. “And then as I began to write and recall the seventies, I realized that that was giving me the most pleasure and that those stories might be the most useful to young kids growing up.” There is a lot of exuberance in those pre-1981 stories, the exuberance of youthful attractiveness and of discovering new powers and new pleasures.

I asked Cleve whether he had kept a journal or a diary he could refer to while writing those sections. “No,” he said. “Actually, [after I had finished writing the book] I discovered a journal from 1977, and I learned that everything I had written about those travels through Europe and Egypt were all written in the wrong years! I had things happening in 1975 that didn’t happen till 1977, and vice versa, so in a mad panic just before publication date, I had to go and correct all of that.”

After completing 120 pages, Cleve wanted others to tell him if he was on the right track. So he sent the manuscript to a few friends, including a former editor at the San Francisco Chronicle and author Jo Becker, who were very encouraging. “Then I sent the manuscript to [writer] Armistead Maupin [A&U, June 1998]. I was so nervous—I mean, he’s ARMISTEAD FREAKING MAUPIN, y’know?! But he was really lovely and liked the book and gave me a wonderful blurb for the book.”

Maupin is not the only one. The ABC Network has already filmed a six-part miniseries to be called When We Rise, partially based upon Cleve’s memoir, produced and directed by Gus Van Sant and written by Oscar-winner Dustin Lance Black. “ABC brought Lance on board and they hired other writers; I spent a lot of time with them down there, they spent a lot of time up here. The series isn’t just about me, of course, it’s also about several of my friends, so I introduced the writers and producers to them. The result was a wonderful script, and they hired a great cast.”

I mentioned to Cleve that this is the second time he has watched an actor inhabit a character that is “Cleve Jones.” I asked if he experienced any déjà vu during filming.

“It’s a very peculiar experience!,” he said, laughing. “I like to tell about my first meeting with Emile Hirsch [who portrayed Jones in the 2008 film Milk]. I liked Emile because of Into the Wild, such a beautiful film. So I’m waiting to meet him and I hear the sound of a skateboard approaching. I look up, and there’s young Mr. Hirsch. I had a pick-up truck back then, so I said, ‘Why don’t you just get in the truck and let me drive you around San Francisco and let me show you my neighborhood and tell you stories.’ Then I realized that as I was driving around and talking with Emile, I was trying to ‘butch it up.’ And when I realized I was doing that, I was just horrified! I was like, What the fuck am I doing? But I think every gay man knows that feeling of not being certain if it’s safe to just relax and be yourself.

“I decided to take Emile home for dinner, and I sat him down and said, ‘Listen! I’m a queen and I’m proud of it! But I don’t want to be a cartoon queen!’ And he was perfect, he did the role just right. In the miniseries, Austin McKenzie plays ‘young Cleve’ and Guy Pearce plays ‘old Cleve.’ But no matter how it turns out, Emile was my first!”

Sitting and chatting with Cleve, I couldn’t help being aware of the history that he carries with him, a history that has often seen him butting heads with the leaders of national LGBT organizations. “I think it’s really important for people to be critical of their leadership, always,” he said. “After Prop 8 passed, I was just sick of the ping-pong game. I was just at the point where I was beginning to think that maybe I really was going to live quite a bit longer. And I really wanted to see marriage equality happen in my lifetime. When I heard from Evan Wolfson that he thought it would take another twenty-five or thirty years, that was simply unacceptable to me.

“I was just sick of the ping-pong game. The legislative strategy was a failed strategy. No victory was ever permanent or complete because they were state victories. So even if we had beaten Prop 8 or if we had taken it back to the ballot and won, we would still be second-class citizens, we still wouldn’t get Social Security parity, it wouldn’t address the military issue. It was clear to me that actual equality had to come through Federal action.

“I think it’s important for people to remember that as late as the summer of 2009, all of the national LGBT organizations and the ACLU vehemently opposed going to the Federal courts—vehemently!”

I reminded Cleve that even Barney Frank opposed taking the marriage equality fight to the courts.

“Barney’s a very intelligent man, quite possibly one of the brightest people ever to serve in Congress, but he doesn’t come from the movement,” Cleve said. “And I think part of his responsibility was to protect the Democratic party from the Left, and that’s the role that he played. But he did it with an unnecessarily mean-spirited vocabulary that really annoyed me. Like, telling the kids not to march [on Washington, D.C.] because all they were going to impress was the lawn.

“But I’ve never had much use for the national organizations, and I think a lot of what we have achieved has happened in spite of them.”

A lot of what we have achieved in the last thirty-five years, Cleve has written, happened because the AIDS crisis—when so many of our families and friends and others saw us sick and dying—changed so many hearts and minds. “There’s that, yes, but it’s so much more than that,” Cleve explained.

“Before AIDS, the notion of a ‘gay community’ was just that, a mere notion. We were still part of the subculture, still criminalized. So when AIDS happened, it forced a lot of us out of the closet, it forced families to deal with us, it forced congregations to deal with us. And yes, it changed some hearts and minds.

“The other thing that happened that was crucial to the marriage equality fight was, we looked at ourselves and the way that we were responding to the crisis, and we saw the devotion of our partners. Most people fought back against the epidemic. They joined ACT UP or the Shanti Project or they delivered meals—or they just stayed home and cared for their partners of twenty years until they died. So, after we went through that individually and collectively, after we emptied all those bedpans and spent all those nights pacing in the I.C.U. hallways and saw all the suffering and all the courage, we were like, What do you mean, this isn’t a marriage? Fuck you! This is exactly what a marriage looks like—and we want our rights!

“Also, the reality was that that ‘little piece of paper’—which is how most of us in gay liberation thought of marriage for many years—turned out to be something that could mean the difference between life and death! We knew people who died because they didn’t have access to their partners’ health insurance because their relationship was not acknowledged by the state or the insurance industry.”

Since Cleve and I are both members of the AIDS Generation, diagnosed with the virus before 1996, our talk turned to being a long-term survivor and the struggles against stigma and for services we face. “The generation that came up immediately after us, the men who are in their forties now, really did kind of turn their backs on us. And I think it’s understandable, because what they were witnessing as they were coming up was so horrifying that a lot of them just didn’t want to deal with it. But younger people do want to hear the stories. The AIDS crisis was a very long time ago for them. It’s like when I was young in the late sixties and early seventies and hearing stories from my grandparents about the Depression and World War II—it was that far back in the past for younger people. But they do want to hear about it, and that gives me hope.

“For many gay men in my generation, probably the majority, we were not able to keep our relationships with our biological families. We lost most of our closest friends. And during that time when we should have been saving money and investing in our futures, we were instead on the frontlines of a horrendous life-or-death battle. So I think that we’re very vulnerable economically. And with the housing crisis here in San Francisco, many long-term survivors are being forced out of the gayborhood. When we’re forced out, we lose an awful lot. When we lose the gayborhood, we lose political power, we lose cultural vitality, and we lose the specialized social services that are very important, not just to people with HIV but to transgender people, to seniors in general.”

As our conversation drew to a close—although I could have chatted with him for many hours more—I reminded Cleve that Harvey Milk famously admonished us, “You gotta give ‘em hope!”—and asked him, “What gives you hope these days?”

“Well, to be honest with you, what gives me hope right now is a certain young man I’ve met recently who has brought so much…” Cleve’s eyes watered over and he smiled a shy grin, his newfound joy very apparent. “I haven’t been this happy in decades. And it is a rational happiness, it’s not irrational.

“I’ve lived long enough to see the most amazing changes in my own lifetime, and those changes happened because of people like us, ordinary people who, many of us, were deeply flawed. But we changed the world. We absolutely did. And that’s part of what I wanted to convey in this book, and I hope young people will read it and see that you can endure, you can survive, you can win. Our world, the lives of LGBT people have changed profoundly. It’s easy to lose sight of that right now in the midst of this hideous campaign, but we continue with each generation, I believe, to make progress against racism and sexism. None of these things is solved over night or in a generation or even in two generations, but yes, we can change the world, change is possible.”

Many thanks to Parker Guest House (www.parkerguesthouse.com) and Dog-Eared Books (www.dogearedbooks.com) for their help with the photo shoot.

Hank Trout writes the For the Long Run column for A&U.

Mirror Image
Singer/Songwriter & AIDS Activist Siedah Garrett Reflects on Her Early Beginnings in Compton, California, to Becoming Michael Jackson’s Friend & Protégé and the Go-To Gal for Spinning Hits
by Dann Dulin

Photographed Exclusively for A&U by Sean Black

Siedah descends the stone stairs from her home. She’s bummed. Many others are too. This is the day after the Presidential election, and a shockwave has jolted the nation—and the world.

Siedah snarls sourly, her lips curling upward, appalled over America’s choice for our next leader. She sits at a hefty wooden table by the swimming pool that’s just a few feet away from the kitchen. The floor-to-ceiling sliding glass door, which separates the pool from the kitchen, is open on this warm afternoon. The modular contemporary house is an open space, with little obstruction from one room to another. Several months ago, Garrett and husband Erik moved into this bright and airy dwelling, which could make the next cover of Architectural Digest.

Once we both vent about the election, the mood lightens and Siedah radiates a burst of energy, reeling out stories and doing vocal impressions of the famous people she’s worked with over the years.

Moments earlier, I was parked in front of Siedah’s house, which borders on the Miracle Mile and Hancock Park sections of Los Angeles. As I gathered my paraphernalia for the interview, a large figure appeared at the side of my car. It was Erik Nuri, Siedah’s husband of two years. A Harvard grad and former RCA Records vice president, he’s now her manager. He offered me a permit for the restricted parking area.

Sipping on iced tea, Siedah offers me something to drink. I accept bottled water.

Siedah settles at the table, scooting inches near me to avoid the direct sunlight. She wears antique caramel-colored sunglasses embellished with rhinestones on the sides. Erik conveniently places a pinnacle acrylic award in front of me. “Erik wants you to see this,” she chuckles mildly. It is the Good Samaritan Award bestowed on Siedah in December 2005 from the Minority AIDS Project. Her efforts have been legion. She participated in L.A’s inaugural AIDS Walk, performed as part of Divas Simply Singing!, and worked with the Elton John AIDS Foundation, as well as other organizations.

At one APLA Health fundraiser, she served as Mistress of Ceremonies.

“I thought myself as a bit of…,” she dons a Brit accent, “a standup comedian.” One of her lines that night was, “They don’t want gays and lesbians to get married? Why shouldn’t they?! They need to be as miserable as the rest of us!” The audience responded with a hearty laugh.

Siedah’s not-so-secret passion is knitting, and she also knits and crochets wearables for people living with HIV/AIDS. “I’m motivated to give because I have so much,” she says, nursing her beverage as the ice cubes clank, clank against the sides of the glass. “I have a lot. When you’re blessed with a lot, you need to give back…a lot.” She clears her throat. “The lion’s share of my spare time and energy goes into creating stuff, mostly hats, scarves, and outerwear for others.”

For today’s interview, she sports an ordinary frumpy beige hat embellished with a large, lavender silk rose. It’s funky and chic. Her shiny dreads flow from under the hat onto a white fluffy blouse, and her tight semi-ripped jeans have a small red flower with green leaves painted on the thigh. She wears cutesy, stylish aqua-blue flats and is accessorized with wrist and ankle bracelets, a necklace, a bling ring, tiny dangling earrings, and clear, dazzling speckled nail polish.

This Grammy Award-winner and two-time Oscar-nominated songwriter has written hundreds of songs. She’s probably best known for co-writing Michael Jackson’s iconic “Man in the Mirror,” which was the fourth number-one hit from Michael’s BAD album and number one on the Billboard Hot 100 for several weeks after its debut. Siedah also sang backup on the track. It was one of Jackson’s favorite songs and it’s Siedah’s personal fave, too. Garrett sang with Jackson when they teamed up on the duet, “I Can’t Stop Loving You,” the first single from the BAD album, and then toured with him for eighteen months after the release of his Dangerous album.

Among the entertainment icons who’ve spun gold from Siedah’s lyrics are Quincy Jones, Ella Fitzgerald, Miles Davis, Roberta Flack, Barry White, Donna Summer, Earth Wind & Fire, Sergio Mendes, will.i.am, and Jamie Foxx. Siedah was also featured vocalist and dancer on Madonna’s 2004 Re-Invention Tour, collaborated on an album with the Brand New Heavies, and co-wrote the hit song “Love You I Do” for Jennifer Hudson in the film adaptation of Dreamgirls. That song won a Grammy, and garnered Siedah her first Academy Award nomination. Her second Oscar nomination was earned from the song “Real In Rio” from the animated film, Rio. Siedah also co-wrote and performed the official theme songs for the 2007 and 2015 Special Olympics World Games, and the 2010 World Expo event in China.

On this luminous day, Ms. Garrett is chummy, sanguine, easygoing, and unpretentious. She hasn’t forgotten her humble urban roots.

She was raised in Compton, California. Known as the “Hub City” of Los Angeles, it’s an inner-city, working-class community. Although Compton and Hollywood are in close proximity, in many ways they are worlds apart. With hard dedicated work, Siedah trekked down the yellow brick road from Compton to Hollywood show business success.

Born Deborah Christine, she was never fond of her name. “It’s a pretty name but nobody called me Deborah. It was always abbreviated to Deb, Debbie, or DeeDee. I hated it.” At age thirteen, she had the opportunity to change it to Siedah, which means “shining and star-like.”

During Siedah’s childhood, the family would move every nine months. “My mother had it figured out,” explains Siedah with a wink-wink, talking about her and her younger sister, Cynthia. “She had an aversion to paying rent.” Her mother would pay the first and last month’s rent and then it would take about nine months for the landlord to legally kick them out of the apartment. In the meantime, the gas and electricity might be turned off, and there were frequent knocks on the door by people demanding the rent. The furniture was also rented. To avoid repo, the family would move, sometimes in the middle of the night.

Siedah’s paternal grandmother, Laura Draugh, put a stop to the vagabond lifestyle by threatening to call the CPS (Child Protective Services) unless she was permitted to care for her grandchildren. Grandma lived in Watts, but she wanted her grandkids to attend Compton’s better schools. The resolution was to use her Aunt Earlestine’s Compton address. Grandma would drive the kids to school in the morning and Aunt Earlestine would pick them up. They’d stay at her house with their cousins, Cokie and his two older sisters, until the grandmother would pick them up.

“Every single day, the loving and caretaking of my paternal grandmother lives with me. I think of her more often than I ever did when she was alive,” offers a heartfelt Garrett, disclosing that Laura died when she was sixteen. Siedah’s mother, Doris, who wrote books under the name of Penny Rich, sadly died last summer of pancreatic cancer.

At fifteen, Siedah started singing. She was part of a five-piece band called Black Velvet & Satin Soul, performing top 40 cover songs at local clubs and private affairs. It was a cattle call (an audition where tons of people show up on a first come, first served basis) that transformed Siedah’s life. She was in her mid-twenties.

“I had a girlfriend that I had been singing with for a few years and she knew about the audition,” recalls Siedah. Then she lowers her voice and adds, “but she didn’t tell me.” She purses her mouth, her foxy golden eyes dart to the side, and she whispers in patronizing rhythm, “Yep, that’s my friend!” Siedah found out about the audition when her friend’s boyfriend called her. She asked for the address; he gave it to her, but he didn’t know the time. Siedah showed up at seven a.m. The actual audition didn’t start until noon. By that time there were people lined up around the block, but Siedah was the third person to be seen.

Quincy Jones was looking to create a new vocal group like Manhattan Transfer or Fifth Dimension, though he, himself, did not conduct the initial auditions. For nine months, Siedah received letters —“Congratulations, you’re one of 500”; “Congratulations, you’re one of 250,” then 100, then 50, 25, 10. Finally Siedah was picked, along with three guys, and the band Deco was formed. (She didn’t meet Quincy until after her third callback.)

Years later Quincy confided to Siedah that it was she who set the standard for everyone else who auditioned, “They had to be either better than Siedah or as good as Siedah.”

When it came time to sign the contract, Quincy offered the band a publishing agreement and an artist agreement. She knew she could be an artist but had never written a song before. Siedah told the guys that she didn’t favor this part of the contract. The other band members took her plea to Quincy and he responded in a strict tone, “Either you all sign it or nobody signs.” The guys returned to Siedah and said, “Bitch, you better sign this contract!” Adjusting her position at the table, Siedah lets out a howl and says, “When three large black men tell you to sign, ya sign!”

Not wanting to disappoint Quincy Jones, she learned the craft of songwriting. After a year, the band dissolved and Siedah was kept on for seven more years with Quincy Jones and Warner-Chappell Music. During those years, she also recorded a solo album for Quincy’s Qwest Records.

“Do you want more water?” asks Siedah. She goes to the huge double-doored ultramodern built-in fridge to collect it. While there, she pours herself more tea.

Two and a half years into Siedah’s contract, Quincy was in the studio with Michael Jackson. Quincy informed her and the other five songwriters on staff that Michael needed one more up-tempo pop song. Siedah went to her friend and fellow songwriter, Glen Ballard, who went to the keyboard and began to peck out some notes. While he was composing, Siedah flipped through her lyric book. She came across a phrase that she had written down two years prior, “The Man in The Mirror.” Siedah straight away started to construct. “I couldn’t write fast enough,” she enthuses, adjusting to avoid the sun, which is now creeping into her area. Within twelve minutes they had the first verse and the chorus. They split, agreeing that each of them would work on the song then reunite the following day to record a demo.

It was Friday night when they finished recording the demo but it was too late to call Quest Publishing offices and Siedah wanted Quincy to hear the song that night. She called him. “Q, Glen and I have really come up with a great song for Michael!” Quincy asked that she take it into his office, he’d listen to it, and get back with her on Monday or Tuesday.

“Can I just drop it off now?” she pleaded eagerly.

“No, I’m in the middle of a meeting with twelve people sitting around the table,” Quincy answered.

Siedah insisted, knowing that Quincy had six daughters, so “he knew he wasn’t going to win [this argument],” says Siedah.

“All right. Shit…” responded Quincy, hanging up.

Siedah went to his home and handed him the demo cassette. Siedah stressed, “Quincy, the only thing I ask is, please get back with me. Don’t make me wait.” He agreed. Three hours later, Siedah was making dinner and the phone rang. “Sid, this is the best song I’ve heard in ten years, but….” Siedah froze, not hearing anything else. She went numb, awash in the moment. When she returned to reality, Quincy was saying, “….Michael has been in the studio for over two years; he hasn’t recorded anything he didn’t write, but don’t worry, Sid. If Michael doesn’t do it on his record, I’ll do it with James Ingram on my record.”

Four days later Siedah got a call from Quincy, who was in a playful spirit. “We in da studio recordin’ your ol’ piece of sooong.” Siedah glows. Quincy adds, “But…Michael says the chorus is not long enough. Hold on.” Siedah heard in an inaudible low singsong hushed voice, “Nee, nee, nee. Nee, nee, nee, nee, nee.” (Listening to this engaging storyteller is sheer heaven as she’s captivating, humorous, and absolutely entertaining, mimicking Michael to a “T,” in a good-natured way). Quincy said, “Sid, Michael says he really wants you to bring home the idea of…Hold on.” Again she hears, “Heh, heh, heh, heh, heh, heh, heh, heh, hee..” Quincy says, “Wait a minute, Sid.”

Siedah continues. “Q puts…”—she pauses, straightens up, throws her shoulders back and says in a regal manner, as if being announced to the Queen—“…Michael Jackson…on the phone. Now, I don’t know about you, but when I was growing up, Michael Jackson was my husband,” screeches Siedah, nearly breaking into tears with passion, while her voice cracks. “So in my mind, I’m on the phone with my husband. But I didn’t want to be a….” She dons the persona of a hysterical fan, screaming nonsensical words, flailing her arms like an octopus. Instead of behaving the way she truly felt, she composed herself. When Michael came to the phone, Siedah replied with the coolest AT&T delivery, “How can I help you?”

The first thing Michael said to her was, “I love this song,” then he followed with, “I love your voice.” Siedah was in bliss, but she replied in a soft modest timbre, “Why thanks.”

Days later, Quincy invited Siedah to the studio to meet Michael. Michael began listening to the demo, as Quincy, Siedah and engineer Bruce Swedien were stationed around the mixing board. Quincy took Siedah aside and said, “Michael says the key is too high. Can you sing it for him in a lower key?” She agreed. Siedah was making her way back to the vocal booth when she realized Michael was filming her.

Surprised and slightly disturbed, she asked, “What are you doing?”

He answered, “I want to film you recording this song.”

“Whhhy..?” she begged.

“Because I…want…to…sing…it…like you,” said Michael.

Siedah flatly declared, “Great Mike. All my friends are really going to believe me when I tell them…he wants to sing it like me!”

This footage can be found in Spike Lee’s 2012 documentary BAD 25. “You can see Michael filming me and his reflection on the glass in the studio,” Siedah points out. “So I’m the chick in the mirror while the man in the mirror is filming me.”

The rising sun’s afternoon rays intensify. We move inside and sit on white bar stools at a mammoth white Formica counter, centered in the kitchen. Siedah replenishes us with more fluids, as we delve into another mirror.

In 1981, when the AIDS epidemic emerged, Siedah learned that her cousin Cokie had died. They had grown up together but weren’t close as adults. “I heard he was sick, lost a lot of weight, then I heard he died,” she laments, closing her eyes. “He was only in his twenties.” Siedah takes a moment. “No one knew what it was, no one had ever heard of it, and there wasn’t a cure.”

Fast-forward nearly three decades. Siedah is performing at the Bermuda Music Festival with Quincy Jones. Afterward, they had dinner with the Premier of Bermuda, Ewart Brown, MD. Twenty people were seated around a huge table, alongside the Premier. Quincy introduced Siedah. The Premier murmured, “Hmm, Garrett….” Then he continued, “Are you any relation to Cokie?”

Siedah was dumbfounded. “I…went…ghost. I felt my blood drain….” She doesn’t finish the sentence.

While the Premier awaited Siedah’s reply, she pondered, ‘He doesn’t mean my cousin?! He can’t mean him!’

Siedah exclaimed to the Premier, “Cokie Garrett?”

He answered, “Yes, Cokie Garrett.”

She replied, “That’s my cousin.”

Siedah’s speech wobbles and she fights back tears, but continues. “The Premier said, ‘I was his physician. I took care of him when no one would touch him.’”

Siedah halts. She surrenders to the primal gut-wrenching emotion, and weeps. Tears stream down her cheeks. I hand her a tissue and stroke her back. “Oh my gosh. Thank you,” she says, surprised at her own outburst. Breathing heavily, she clarifies, “When I was talking to him I just started crying uncontrollably. I felt so embarrassed. Here’s the Premier of Bermuda and I’m bawling. Quincy was at the other end of the table wondering what the hell was going on. I’m losing it. So I thank this man for taking care of my cousin when no one else wanted to touch him.”

The epidemic had affected Siedah when her cousin died, but the full impact didn’t come until decades later.

Reminiscing about this strikes a chord. She’s returns to the early days of AIDS when some songwriting friends of hers would take a daily swim at the YMCA. One day they didn’t go anymore and she wondered why. They told her, “There are gay people who swim in the pool.” At that time, people did not know how this disease was transmitted, so they were frantic, creating their own fear.

Siedah has not yet written a song about the epidemic. Although the majority of her songwriting is now commissioned for special projects and events, television, film, and musicals, several times this afternoon she brings the topic up. “I’m going to get around to writing that song…,” she insists, twirling her dreadlocks. She starts singing Prince’s song, “Sign o’ the Times”: “‘…a skinny man died of a big disease with a little name….’ We all knew Prince was talking about AIDS.”

I support her idea of composing a song. As we walk toward the front door, I can picture notes and lyrics swirling in her head. (Siedah is also open to doing a PSA about HIV prevention, as well.) Husband Erik, who has an HIV-positive older brother, is collaborating with Siedah on a screenplay about music in the late forties and early fifties. We near the atrium where we pass the BAD album wall, which is plastered with elegant framed platinum records, awards, and pictures of Siedah and Michael, including one of the original demo.

As we are walking into the atrium that leads to the iron door, Erik, who’s been working in another room, sees us through the glass walls. He joins us. Gracious and hospitable, they leisurely walk me outside. We bid farewell.

Gazing into the mirror with Siedah today was inspirational. It reflects the light upon all who share the hope that compassion still exists and will thrive, especially in the unprecedented and uncertainity of our new political era. Let’s take a look at ourselves and make a change.

Wardrobe, styling & accessories provided by Siedah Garrett. Designer knits by Siedah Garrett: http://twitter.com/SIEDAHGARRETT #siedahcreations.Hair & makeup: Jeff Jones; www.krop.com/jeffjonesmakeuphair. Post-production (digital styling) by Eve Harlowe Digital Styling(www.EveHarlowe.com). Shot at Apex Photo Studios, Downtown L.A.: www.apexphotostudios.com.

For more information, log on to: www.siedah.com.

Dann Dulin is a Senior Editor of A&U.

Writing Life
Novelist E. Lynn Harris Shares with A&U’s B. Andrew Plant How AIDS Helped Inspire Him to Start Writing, Why the Pandemic Is Integral to the Lives of His Characters, and What He Hopes Readers Take Away from his Books—Awareness, Compassion, and a Love of Their Own

Because all of E. Lynn Harris’s eight novels do not include storylines pertaining to AIDS, people may not realize that—in a way—it is because of the AIDS pandemic that the author began writing.

“I’m a very squeamish person, and I didn’t like being around illness [when I first knew people with HIV disease],” Harris says. “So, I would write letters to my friends who were ill.”

One of those friends, Richard, not only pressed the author to make in-person visits, he encouraged Harris—who at that time was a young computer marketing executive—to embrace and expand his writing. “He told me I had a gift,” Harris says, “and made me look at what I could do with my writing. I had always liked to do it and I liked to express myself that way. I knew it would probably be part of whatever I did. I just didn’t know that writing would be the core of what I do.”

Indeed it is. E. Lynn Harris’s first seven novels have all been bestsellers, starting in 1991 with Invisible Life—originally self-published but republished three years later by a major house. He has paid multiple visits to The New York Times’ bestseller’s list and he has won a wide variety of literary awards. There are more than three million copies of Harris’s books in print.

It was with this impressive young literary career in mind that I interviewed the author on the eve of the publication of his eighth novel, A Love of My Own. We talked in June, with Harris excited about a brief vacation which he was about to begin—a two-week respite that would include his last free time for months. As he explained—in this, his first interview in a string of publicity associated with the new book—his appearances in conjunction with the novel would begin on July 30, the day of its release, and continue daily for months, quite literally.

Harris, who for a young man is nonetheless an old pro at interviews and book launches, seemed perhaps unusually relaxed as he agreed to talk about a time when he first became aware of AIDS.

“It was in the late 1980s, I believe, while I was living in New York,” he says. (He also has lived in Dallas, Atlanta, Washington, D.C., Chicago, and New York again.) “There were rumors about people being ill, people saying they were not ill, people dying suddenly. It was a ‘gay disease,’ then we heard other people had it, then we would hear the terrible stories about what [sicknesses] people got who had it.

“Then it really hit home in the early 1990s when I began to lose some close friends,” Harris says. “It spurred me to write, not knowing what else to do.” He then tells me about Richard, one of the friends to whom he would write—the friend who complimented his writing and encouraged him to do more with it.

He reflects on that time, saying, “I didn’t feel like I could be around someone who was very sick—it scared me, and I didn’t know what to do. Still, I couldn’t let them pass [away] without them knowing how I felt about them. So I wrote. That’s what I could do.

“[But Richard] wouldn’t take ‘no’ for an answer,” Harris says, obviously reflecting both on fond memories of a departed friend and laughing a bit at himself—for not quite being able to make the visits he so wanted to make. “He not only made me come see him, but he definitely encouraged me to write. He was a like a big brother that way.”

That friend indeed had the effect of a big brother because, in Harris’s own words, “He made me grow up. The experience made me grow up.

“[Through him] I saw illness and dying—and actually life itself—wasn’t like I thought it was,” he says. “Spending time with Richard—and with other friends—took the focus off me.” He speaks with the confidence of someone who is obviously glad to have made the spiritual journey of personal growth and caregiving. “I was able to be with that friend in his last four or five months.”

In some respects, Harris’s story is not that different from those of many of us who have lived alongside the modern plague. Still, the fact that this amiable and prolific man seized his gift and did something—something big—with it is what makes him different. It also makes him a bit like a character from one of his novels—characters that make changes, make waves, and make a difference after experiencing a life-changing catharsis.

“Especially when I was writing my early novels,” Harris says, “I hoped that I would live to write when there was no longer something called ‘AIDS.’” It soon became apparent that that wasn’t going to happen.

So, why does he not include AIDS in every storyline? “It’s like anything else that’s current,” he says. “You don’t want to ignore it, but you don’t want to force the point either. That doesn’t do any good. But [not forcing the point] doesn’t mean the issue isn’t there.”

As an example of incorporating current events into his books, Harris notes that “an event like 9/11” couldn’t be ignored. “I mean, you can’t just pretend it didn’t happen.” In fact, terrorist attacks on the U.S. and the effect those had on the psyches of individuals are crucial to character development in A Love of My Own.

But the changes to people’s lives after September 11 aren’t overused or overemphasized, either, and that’s sort of how Harris deals with HIV disease in the lives of his characters. E. Lynn Harris characters are vividly sexual, so it is natural that they ask one another things like, “Are you using protection?”

Similarly, as one of them plots character assassination against another, it seems natural enough for them to erroneously imply that someone is HIV positive. By having characters wield such information against one another, Harris artfully points up the negative stigma still associated with HIV and AIDS.

Other AIDS references are much more direct. Attorney Raymond Tyler, Jr., who in a previous Harris novel lost a friend to AIDS, takes center stage again in this latest book. In one scene he reminds us that the death of his friend caused him to establish a foundation to help others. And, when the going gets tough professionally and romantically in this book, Tyler again reflects on his life—thinking about expanding his foundation to help more people and foregoing Thanksgiving invitations to work at a home for youths with AIDS.

The disease also touches the lives of other characters in A Love of My Own, even if its only as they write a check to AIDS service organizations or admonish one another to “play safe.”

Whether it is a conscious effort or not, Harris’s characters are not invulnerable to AIDS, regardless of their background, education, or socioeconomic status. A runaway teen is HIV-positive and seeking a free meal, while more advantaged characters also are struck by the disease. Likewise, black and white characters alike are infected with or affected by AIDS, and people of all colors do good work in AIDS service arenas.

He brings realism to his depiction of HIV disease by showing it across all lines. By showing that it does not discriminate.

“It is very important to carry the message,” Harris says. “I don’t want AIDS to become something people are tired of talking about. It is very, very personal and we must all take responsibility. We do it in different ways at different times, but we must all do our parts.”

The author has done his part in different ways, too. The very fact he writes about what he calls “the down low population within the African-American community,” referring to bisexuality, was at first somewhat scandalous itself. But it also proved alluring for readers. Whatever drew them in, he is glad he could contribute to awareness and debate.

“I had no idea this [including bisexual characters] would take hold with the audience,” Harris says, “but it is more [prevalent] in the African-American community, even if people didn’t talk about it. Women, especially, began taking note.”

He says he is proud that bit of awareness might cause someone to think about HIV risk where they wouldn’t have before. It might cause them to question what they are told, how they are treated—and whether or not they are tested.

“Early on in my [writing] career, if a charity or [AIDS service organization] function asked, I would appear, and not charge a fee or charge a reduced fee,” he says. “I do that kind of thing less now, though, because I don’t want to appear as an expert or present myself as an expert.”

He says he sincerely does not want to take the focus off AIDS itself by being the focus of an event.

Harris also wants to help create focus in the minds of young people around the dangers of AIDS. “I meet young guys who have been affected,” he says, “but they don’t seem to realize the severity of being infected or living with the disease…or how easy it would have been to prevent it. Because treatment does make it more like other less serious chronic diseases, they think having AIDS is like having diabetes or something…and it’s not that way.”

That concern is reflected in the author’s current novel when one of the main characters meets a teenager infected with HIV and must contain himself when he realizes what he really wants know about the youth is whether someone told him how not to become infected. The character overcomes his bewildered-and-angered-yet-protective thoughts, and instead pursues a conversation of compassion with the young person.

“I remember how hard it hit me when I read in a national newspaper for the first time that one of the fastest growing groups of people with HIV are urban black youth,” Harris says. “Somehow we’re not getting the message to young people….”

Ultimately, Harris has the same wish for people of all ages. “I hope [through my writing] I can help make people more sympathetic, more aware,” he says. “They can see examples—good and bad—that my characters set. I hope they can especially learn from the good examples of my characters, when they help each other. Maybe people will read about them and do some of those ‘giving things.’”

He pauses for a moment and then starts to repeat himself, obviously wanting to underscore a point he finds particularly important. “You have to be there and have compassion,” he says. “That’s the message.”

Harris has been there to see friends through the worst of AIDS and to see friends lost to the disease, but he also knows the positive and sometimes ironic upswings too. “A friend I thought I was going to lose at one point has had to go back to work,” he says. “His health has improved so much. Seeing that kind of thing is wonderful.”

The ultimate reality of AIDS is not as bright as that, Harris knows. “It’s a dream world to think that we’ll live to see this disease gone,” he says. “Drugs will make this more of a chronic disease. A vaccine will happen….But this is with us for a long time to come.”

All the more reason, then, Harris says, to “mention the differences within each of us, and help people see that AIDS is not a scarlet letter.”

How appropriate that an author should make a literary reference. And you can be sure E. Lynn Harris will again make reference to HIV and AIDS, both in his writing and as he speaks and meets-and-greets across the country on book tour after book tour after book tour.

After all, he seems to be on a mission to write, and on a mission to help stop AIDS—in his own strong, quiet way.

B. Andrew Plant is an Atlanta-based freelance writer. He interviewed political activist and consultant David Mixner in the July 2002 issue.

Chicken Soup for the Positive Soul

Just as the incomparable Patti LaBelle’s indelible talent has earned her a place among R&B royalty, A&U’s B. Andrew Plant discovers firsthand how her unwavering devotion to people with medical challenges has earned her an honored place among leading health advocates and why her commitment to touching the lives of people affected by HIV/AIDS always starts with a hug.

When Patti LaBelle called me for our interview, she was quintessentially Patti: On time, gracious, forthcoming, cheerful, and passionate about her causes. I was starstruck. After all, this is the Grammy-winning songstress whose forty-year run in the music business is unprecedented.

About the only other thing Patti could have done to prove it was really her on the other end of the line was to demonstrate that signature four-octave vocal instrument that has been heard in concert halls around the world. But that wouldn’t have been situation-appropriate—something that is very important to the famous Philadelphian. Instead, a quieter voice than I might have expected greeted me, immediately thanking me for the opportunity to “talk about this terrible disease.”

In fact, throughout our time together, the true Patti shone through increasingly. Her easy manner and matter-of-fact pronouncements about health, healing, and unselfconsciously doing the right thing put me at ease. As with the rest of her gazillion fans, I began to feel I was simply talking to a friend on the phone.

That outcome would please the woman who has scores of albums and many, many television and film credits to her name. After all, as she explained to me, one of her goals is to bring a healthful, loving, and equalizing embrace to people, figuratively and literally.

“I remember this one time early on [in the AIDS crisis] I hugged a man who was very sick with AIDS,” she says. “He was covered with [lesions]; he looked very sick. But I grabbed him and gave him a big hug and just held him a bit. He needed that, and I did, too. Just as soon as I let go of him, someone said, ‘How could you hug him like that; aren’t you afraid?’”

Patti lets that comment hang there just a moment before decisively answering. “How could you not hug him?” I asked. “I still don’t understand that. We didn’t understand enough then to know if it was really safe to hug and touch someone with AIDS, but I was somehow blessed enough to know it was okay. It just felt right. I get angry with people who are prejudiced!”

Yes, Patti LaBelle understood both the dire nature of AIDS and the need for action from the very beginning. She did not wait until AIDS was a popular cause for celebrities. She did not hesitate in asking questions about the then-new epidemic.

“I knew one person who was [affected] and I saw what this might do to a whole lot of friends,” she tells me, “and unfortunately I was right. I began doing everything I knew how to do to help, and sometimes it was hard to know what to do, but I had to do something, anything….”

Indeed, I remember being at a Patti LaBelle concert in the 1980s and hearing her talk about health. About taking care of yourself. About the need to take the threat of AIDS seriously. And she has been consistent in the role of caring messenger. Still today in concerts she talks from the stage about AIDS, about healthy choices, about the effect diabetes and other diseases have had on her friends and family.

“I am blessed with this voice,” she says, “and people come to hear me and part of what they are going to hear is what needs to be said about this.” My new friend Patti tells me she feels part of her calling is delivery not only of song, but also these healthful messages.

And, just as she has been a musical pioneer—sometimes teaming with unlikely duet partners and often taking on new genres—Patti has indeed been a pioneer for doing the right thing, above and beyond AIDS. She told me right up front that she hates prejudice, and that’s a theme we would revisit several times during our interview.

“AIDS hit gay people first [that we knew of], but it’s not just about ‘gay’ or ‘straight,’” she says. “We were seeing and saying then what people know better now…that AIDS can and will touch everybody.”

“I became a banner carrier for people [with AIDS] for what they were just getting into,” Patti says, “maybe because nobody else was noticing or doing enough. I keep carrying that banner because we still haven’t gotten serious enough about this thing. It’s [affected] too many people in too many ways in too many places.”

This remarkable lady who helmed the legendary Patti LaBelle & The Bluebelles (1960s) and the 1970s group Labelle, and who has had two decades of phenomenal solo success, obviously does more than just talk about the issues she cares about. She lovingly tells the story of visiting a friend who was dying of AIDS.

He was in the hospital and Patti took him food and hand-fed him. Even more incredible, she did so right after a concert. That’s right, the woman who gives concerts that are so spiritually and physically exhausting that even her audience is tired went to a restaurant that was open late, “got noodles and shrimp to go,” and essentially played nurse and Mom to her friend.

“I also worked to get him into another hospital and to get him the cocktail,” she proudly told me. “He is healthier.” And the legendary singer makes clear she believes it was the love and attention and food and prayer that helped her friend rebound, just as much as it was the right medication.

After years of giving of herself, the singer has finally taken her own admonitions about health to heart. She talks of Luther Vandross’s health problems and about losing both of her parents, her sisters, and a best friend (to diabetes and cancer).

“I woke up [after seeing illness up close and losing those close to her] and started taking better care of myself,” she says, telling me that she for too long took her own diabetes diagnosis too lightly. “I’ve realized now only I can make the decision to be healthier. I’m not always on time [with my medication] and not perfect about it every day, but I do my best.”

The most important thing, she says, “is to remember I’ve got a disease—it doesn’t have me.” The same goes for HIV disease and other maladies, she says. “Don’t ever think that it’s a death sentence. Do what you can! Don’t ever let it be in control….”

She goes on to tell me that, on this very day, she is headed to her doctor to investigate the viability of an insulin pump. “Is it for me? Am I a candidate? Would it make me healthier and make my life easier?” she asks rhetorically. “When I hang up from talking to you, that’s what I’m going to go find out.”

Patti concedes that her own health issues and those of her family are probably part of what give her a better understanding of people with HIV/AIDS. “I understand some of the same issues,” she says, at least in regards to having to take medication and it being inconvenient and having to go for medical appointments more frequently. “Living with a disease means you have to think about health choices every day, like it or not.”

As for the friends she has lost—to AIDS and otherwise—Patti is philosophical. “They are in a better place,” she says, “but love never dies. Their essence is still here. I feel their spirits in my house.”

But she’d rather not lose friends who are ill in the first place. “You put on that happy face for them. Pray for them to get better. You don’t have to be an angel, just be someone who can give,” she says.

And she certainly gives. Patti serves as a spokeswoman for the National Medical Association (which administers a scholarship in her name) and the American Diabetes Association. She also serves on the boards of the National Alzheimer’s Association and the National Cancer Institute. Recently, the University of Miami’s prestigious Sylvester Comprehensive Cancer Center dedicated a special research laboratory in her honor for her tireless work on behalf of cancer awareness.

Notably, at amfAR’s annual gala last November in New York City, Patti was honored with the nonprofit’s Award of Courage, “for outstanding leadership and distinguished service in furtherance

of the Foundation’s mission and for helping to increase AIDS awareness and accelerate the pace of HIV/AIDS research.”

For nearly a decade, she has served as honorary chairperson of the National Minority AIDS Council (as a spokeswoman for the Council’s Live Long, Sugar campaign). The Council previously presented her with a Lifetime Achievement Award. She also has participated in benefit performances and prevention campaigns for a variety of other AIDS organizations, including Mpule’s Children’s Center in Botswana, the African American & Hispanic Leadership Conference on HIV/AIDS, Agouron Pharmaceuticals’ Fighting HIV through R&B campaign, the Songs for Life album benefiting the Royal Initiative to Combat AIDS in South Africa, the 2004 Super Bowl Gospel Celebration benefiting Houston’s Project WAVE, the Black AIDS Institute’s Rhythms for Health campaign, the 2004 Fashion Cares benefit, and the 2004 YouthAIDS benefit in New York.

Patti has received three honorary doctoral degrees—from Cambridge University, Drexel University, and the Berklee School of Music—so I ask if we are now allowed to call her, “Dr. Patti.”

“You sure can!” she says. “I am so blessed with that…that they’ve given me doctorates. I appreciate the recognition and respect.” She goes on, at my insistence, to talk a bit about her Grammy Awards and her many other accolades.

“Those are wonderful, especially when they come from people in the industry or people on the street. Fans. You know. They’re letting me know how I can make them feel and that feels good to me,” she says. “My success is not measured by [book and record] sales or all the accolades, really. To have the respect of people who want to come listen to me. That’s what makes me feel successful.”

Given that Dr. Patti is famous for her cooking (she’s cooked for more than one talk show host, is said to carry hot sauce in her purse, and is the author of two cookbooks), I wanted to know what she would cook for someone with AIDS. “I would make them my healing, feel-better soup,” she says. “I make it for myself and for anyone who is feeling bad. It’s like medicine for the body and for the soul.”

She goes on to tell how she recently made the soup while staying in a New York City hotel. (With a little detective work I found this particular trip to New York was made so she could sing at the wedding of Star Jones Reynolds.) “I didn’t feel good and was hoarse and my friend had a bad, bad flu, so I whipped up this good chicken soup and had the bellman and everyone in to eat it,” she says matter-of-factly. Don’t all international superstars cook for the masses?

The origins of the soup recipe are as wonderful as the cook. Patti talks of her long-time music director, Budd Ellison, and the fact that he was diagnosed several years ago with prostate cancer. Ellison had long been a vegetarian, but his doctor told him he wanted him to actively add protein back into his diet, including fish and chicken [see Sidebar].

“So I made him this chicken soup with all kinds of vegetables and stuff in it,” the cook tells me proudly. “I was so happy when he asked for more later. There wasn’t any, but I made more!” Since then, “Budd’s Back-to-Life Soup,” as Patti named it, has become a staple for her and her extended family, prepared whenever someone needs a healthful boost.

In addition to LaBelle Cuisine, the bestselling cookbook in which Budd’s eponymous soup appears, LaBelle is the author of three other bestsellers: Don’t Block the Blessings: Revelations of a Lifetime (her autobiography), Patti LaBelle’s Lite Cuisine (cookbook number two, with a nod toward healthy eating), and Patti’s Pearls (helpful insight from a woman who has lived, loved and learned).

Okay, so we know what she would cook for her ailing friends. What would this music legend sing for people with AIDS? “‘The Best Is Yet to Come,’” Patti says. “A song I recorded with Grover Washington [Jr.]. It’s got a good message…that you must hold on, keep on….”

“There’s another one I would sing too,” she says. “‘New Day.’ It’s a newer one…about new possibilities…spreading your wings.” “New Day” appears on Patti’s Timeless Journey album that was released in May 2004, in conjunction with the diva’s sixtieth birthday.

When I marvel that Lady Marmalade has hit this milestone, she proudly says, “Yes, I turned sixty and I celebrated.” Like the lady said, the best is yet to come.

As we wind down, I ask the humble legend for her final words on the AIDS crisis. “I want the world to stop being so mean, you know?” she says. “We have the ability to make a person feel better. And we can make them better. I am praying we do right.”

“We as a people can’t give enough to people living with AIDS,” Patti says. “Take them a meal or have a conversation about the people who love them or pray with them. There’s something we can all do.”

She’s quiet for a moment on the other end of the phone before saying, “Tell people that I will keep doing whatever I can for people with AIDS. Tell them I will do whatever. Tell them I care.”

B. Andrew Plant interviewed Senator Hillary Rodham Clinton for the April 2005 issue.

Budd’s Back-to-Life Soup

Makes 8 to 10 servings
One 3-1/2-pound chicken
Salt and freshly ground black pepper
2 medium onions, chopped
1 medium leek, white part with 2
inches of light green top, chopped and
well-rinsed
8 ounces green beans, trimmed, cut
into 1-inch lengths
2 cups fresh or frozen corn kernels
3 medium carrots, chopped
One 15-ounce can diced tomatoes,
with juice
1 small green bell pepper, seeded
and chopped
2 garlic cloves, chopped
Rinse the chicken under cold running water. Season well, inside and out, with salt and pepper. Place in a soup pot and add enough lightly salted cold water to barely cover. Bring to a boil over high heat. Skim off any foam that rises to the surface. Reduce heat to medium-low and cover. Simmer until the meat falls off the bone, about 1-1/2 hours. Remove the chicken from the broth. Remove and discard the skin and bones. Chop the meat and set aside.

Add the onions, leek, green beans, corn, carrots, tomatoes, bell pepper, and garlic to the broth. Simmer until the vegetables are tender, about 30 minutes. Return the meat to the broth. Skim any fat from the surface. Season with salt and pepper. Serve hot.

Recipe taken from The New York Times best-seller, LaBelle Cuisine: Recipes to Sing About, by Patti LaBelle, with Laura B. Randolph

June 2005

Kindness Is Action
Actress & Activist Alexandra Billings Extols the Importance of Compassion

by Chael Needle
Photographed Exclusively for A&U by Sean Black

Alexandra Billings knows how to light fires. On-screen, on a cabaret stage, or at an APLA benefit, she takes whatever matter that makes up stars—that molten, nebulous energy, roiling in a lifetime of sparks and explosions—and disperses it on earth to everyone. The flames are kindled by kindness.

When accepting a Human Rights Campaign Visibility Award in 2016, she spoke from the heart to the attendees at the gala dinner about being a survivor: “I look around and I see you all, and I can’t tell you how grateful I am that you’re here. And I have to say something to you: I think you look great! You look swell, really. It’s wonderful that you’re here, eating the chicken. It’s delightful. But I must tell you that we have to do more than sit and speak and talk to our neighbors and eat great food and put on fancy clothes. I come from a tribe of people that I lost, almost eighty-five percent of. They’re not here. And when I buried them, in the eighties and the early nineties, nobody wanted them. So we would tie my friends up in hospital sheets and leave them outside hospitals. We would put them inside people’s cars because they were ‘diseased’ and nobody wanted to take care of them. So we were the caretakers. We took care of each other. We were family. That’s what we did. And for all those people who are no longer here, who can no longer speak, who can no longer see you, that can no longer stand, walk, eat, dress up, and talk to their neighbors, I ask you, with everything that’s left in me: You must speak loudly, clearly, with distinction, with history, and, most of all, you must speak with kindness.”

In other interviews, Billings has extolled the power of the tribe as essential for survival. I asked her what the power of the tribe means for her.

“The power of who we are, and when I say ‘we,’ I mean the transgender community can be found in the fact of us. What I mean is, we’re still on the planet, and we have been since the beginning of time; since humanity began to discover itself and its own gender containers we’ve been around….We appear a lot in history, artistically—statues, painting, and writing….

“And I think that history reverberates. I don’t think it’s random. I think it’s very specific. What I mean is, when we first started to communicate, we began to draw on walls. ‘Here’s what I did today; I killed this animal, I brought it here and we ate it. Now we’re going to go to sleep. And I’m going to draw you these pictures.’ We did that because we needed desperately to leave a mark, because, otherwise, we could have grunted and groaned, and made sounds; and we did that, but we also needed to leave a mark. We needed someone, something, a record of ourselves. I believe the transgender tribe has done the same. There’s a great power in that.

“This is something that we forget a lot. We bypass who we used to be because we’re so concerned with who we are. If we forget who we were, then we don’t become who we’re supposed to be. We stay stagnant. That’s the reason there’s history,” she says about the ability to recollect and see what worked and what didn’t. That ability to recollect, she says, is “tied to our instinct. So, the power of our tribe lies in the history of us. We have got to pay attention to it, because we’re living in a political hotbed right now. I’ve been through revolutions. I lived through the AIDS plague. I remember this revolution very clearly. I know exactly [what’s happening]. I know the signs; I can smell it a mile away. I’m telling you, if we don’t pay attention to how we behave, we’re lost.”

Nurturing the tribe, or anyone, depends on another essential element. “In order to support other human beings you have to be present. I have a very, very good friend who has been positive for many many years and he never told anybody, ever….He’s in his fifties. I’m the first person he told. I’m going to say two maybe three months ago, he said, ‘Okay Alex, I think I’m ready to tell people.’ It was extraordinary—he hasn’t done it yet; he’s just sort of readying himself—but it was extraordinary for me to witness this fear and hesitation in this day and age of coming out, however you come out, genderwise or sexuality, religious, whatever the door is, you open it. I’m always going back to The Wizard of Oz, because everything’s about The Wizard of Oz, quite frankly,” she says, speaking this last part, this truism, quickly as a jokey aside. “You remember when Dorothy opens the door, when she first opens the door and it’s sort of slow at first? Then it picks up a little bit of speed. You see everything becomes Technicolor. Everything becomes alive, and fresh, and new. So I think if we’re going to help each other, if we’re going to support each other, if we’re going to nurture each other, we’ve got to be present. That means you got to speak what’s true, whether it’s about your HIV status, whether it’s about your gender politics, your religious convictions, your spiritual questions, whatever it is that you’re holding in; the only way we can support each other is if you are fully there, I think.”

As a commencement speaker at a recent California State University, Long Beach, College of the Arts graduation ceremony, the recently named Most Distinguished Alum rallied the students to believe in themselves and follow their own paths—to speak what’s true. As the daughter of parents who were both teachers, perhaps it’s no surprise that she loves to engage others in dialogue, in the process of learning, whether it’s in a university classroom, at her local LGBT center, moderating a panel on transgender issues at the White House during the Obama years, or in her guest columns for The Huffington Post, speaking out against HB2 and Hillary Clinton’s misrepresentation of the Reagans’ involvement in the fight against AIDS, among other topics.

A few years ago, Billings was graduated from California State University, Long Beach, with an MFA. With her newly minted degree, she pursued a position in academe and expressed interest in teaching at her alma mater. However, the theatre arts department did not have a tenure line open. She was offered a year contract.

She was game. “I have been teaching now for almost thirty years,” she says, most notably the Viewpoints acting courses offered by the famed Steppenwolf Theatre, with whom she has worked since her Chicago days. “I really wanted a home and I really loved CSU. The students there are really extraordinary. I’ve taught in universities all across the country, and it’s a very special group of actors that come into the theater department.”

She accepted the appointment and then wanted to stay on. She fought for it. Thanks to her diligence and tenacity, and a supportive chair and colleagues, Joanne Gordon and Hugh O’Gorman, in particular, the department found the money to open a tenure line for her. As we spoke, she was busy preparing for the upcoming semester (two undergrad acting classes and one grad course).

When asked what she enjoys most about teaching, Billings pauses before replying: “Being the student. Because it really is what happens. I find that the longer I do this, the more I’m able to stand in awe of all the things I sort of don’t know. And it’s always reflected back in the hearts and the actions of this generation.”

This generation—the Millenials—have gotten a bad rap, she says, referencing the stereotypes that they are “lazy, self-centered, selfish.” “I don’t find that to be true at all, not at all. I find them to be imaginative and powerful and funny, intelligent and kind, and extremely compassionate. My being transgender isn’t an issue that they deal with. It’s a non-issue to them. It doesn’t exist for these people. This whole older generation—and I include Democrats and Republicans, liberals and conservatives…[who] are coming down on this generation—I challenge them by saying, ‘You don’t know this generation. I do. I’m with them, all the time. I’m telling you, they are the ones who are going to go out and reshape what we have caused.’ Because Donald Trump is our fault, not theirs.

“That’s what I learn from them, constantly. I teach them art and they teach me life.”

Her core message that she tries to convey in her teaching is that “there is no line between your art and your life. If you bring your whole life into your art, you will have art in your life. I really try and hammer home that what they do on the stage—imagine and dream, and tell stories of other human beings, they can do off the stage.”

Billings has had a long career of imagining and dreaming and telling stories of other human beings. She has mined her own experiences for her one-woman autobiographical stage piece, Before I Disappear, and two theatrical cabarets, I’m Still Here, and, more recently, S/He and Me. She has also made two albums, Being Alive and The Story Goes On. Her life story was the subject of a PBS documentary, From Schoolboy to Showgirl, which garnered an Emmy nom in 2009.

Billings was introduced to musical theater at a young age (her father Robert Billings taught music at Harbor College in Los Angeles, and served as the musical director for the L.A. Civic Light Opera House for nearly two decades). Coming of age in Chicago, where she had moved with her newly remarried mother and brother, she did drag in the early eighties as Shanté. After years of theater work in Chicago, in Off-Broadway and touring productions; performing her nightclub act; collecting awards (five After Dark Awards, a Joseph Jefferson Award and the MAC Hanson Award for Best Cabaret Artist); and often working with her wife, director and writer Chrisanne Blankenship, Billings moved to L.A., where she found work in television and film. Recent credits include How to Get Away with Murder and the feature film, Valley of Bones.

Her current role on the Emmy, Golden Globe, and Peabody award-lavished Transparent, for which Billings won a SAG Award as part of the ensemble, has expanded her fan base. It’s easy to understand why. Billings brings to Davina her superb acting chops, infusing the character with a serenity and groundedness that makes it understandable why Maura, played by Jeffrey Tambor, feels emboldened by the friendship and gravitates toward her. As a fan of the Amazon original series, I gravitated toward Davina, too, and I’m not alone.
“People are gravitating towards her I think because she represents a very specific kind of person, period, but certainly a very specific kind of trans person you rarely see [on television or in the movies],” Billings shares. Her past television acting turns, all of which, by the way, have been characters who are transgender, on shows like Grey’s Anatomy (on a GLAAD Award-winning episode), ER, and Nurses, among others, have been stellar, but they have been arguably a narrow view of transgender life, mining drama from issues associated with transgender women (health complications, transphobic parents) rather than from the characters of the women themselves.

“There was a time in my life where I told my representation, ‘Listen, here’s the deal. I’m not playing any more people in hospitals, so I’m not wearing any more hospital gowns. I’m not going to die anymore. I’m not going to be a prostitute or a drug dealer.’ After I said that, I didn’t work for about three years. There was nothing to do. There was no part.”

Transparent was a different story. Though the show has been criticized by some for casting a cisgender man (Tambor) as a transgender woman, the show’s creator Jill Soloway has sought to create a trans-inclusive space on set, within the cast, and behind the scenes, hiring writers, directors, and crew who are transgender or gender nonconforming. Soloway was more than receptive to Billings’s input about Davina. The part was “written beautifully. There certainly wasn’t a big conversation to have. I said, ‘Listen, if this is going to continue, I don’t want to get sick; I don’t want to be ill. I don’t mind being complicated and having problems,’” she said, very much aware that “problems” are par for the course on television. “‘But I want to be honest. This is how I dress, this is how I sound, this is what I look like, this is the way I speak. I would like that to be true in the show.’”

Soloway, says Billings, was completely committed to that vision. “You know what’s funny and sad is that it’s so revelatory. This is such an unfortunate conversation that we’re having because a trans person is acting in some [everyday] way, and I hate to use this word, but in some way we’re normalizing being transgender. That tends to shake up a lot of people,” she says about the attitude that wants to keep transgender indiviudals as part of “them” rather than a part of “us.” “You know, a little assimilation is fine. It really is. We can all meet in the center and then we can go away and go to our outer edges. It’s okay for us to meet occasionally, truly.”

What Transparent does right is that it avoids positioning the audience as tourists, as cisgender visitors to the lives of characters who happen to be transgender. The show is as much for the LGBTQ community as it is for the global community. By following Maura, who, by transitioning, suddenly has two families, an ex-wife and three children and a trans family, the show is able to challenge viewers’ assumptions about difference. Thanks to Maura Pfefferman’s bold and self-empowered move to be herself and to resist other people’s attempt to closet her, all of the other Pfeffermans begin to be more open about their own gender identity and past and present relationships that do not conform to a heteronormative template. They all become one big queer family. And the characters who are trans and the LGBTQ community members that Maura meets, though not without their own conflicts and issues, are the ones who provide a sense of stability for Maura, a counterpoint to the frenetic Pfeffermans.

Billings finds that liberating, as well. “I think what is life-changing for other trans folk, especially for the youth, is that they see trans people like Trace Lysette [who plays Shea], and myself, on TV and they know we’re trans actors but they also see the characters behaving in ways that are not necessarily overly irresponsible, that are fairly well adjusted, kind, compassionate human beings. They’re your neighbors or your friends, or your relatives. So the example is more about our own community than it is about this gigantic lesson that we’re trying to change cis people’s minds about something. That doesn’t really enter into the equation.”

Transparent has been a blessing for Billings. “Every year I get more and more grateful. To have something like this happen at this stage in my life is really extraordinary and so completely unexpected. Completely unexpected. Everyone that’s involved in the show is very much like-minded. We all can’t believe our luck….” Season 4 of the show has yet to start filming and is due next September.

It’s a bright spot on a horizon that has been looking bleak for many. Asked what she is most concerned about as we go forward in terms of protecting our health or protecting our communities, she says about our current political state, “I’m really concerned about the way that we’re handling this. I think that we need to be careful that we don’t become alarmist. The most important thing that we can do—and I mean this, if nothing gets in the article, put this in because this is really important to me—for humanity in this country, but also around the world, is to spread who we are and our love and compassion, and kindness to the people who disagree with us the most. What I’m witnessing right now is a real disdain for people who don’t agree with whatever it is we subscribe to. That not only creates distance and animosity, it creates a gulf [that] I don’t know that we will ever recover from. I’m far less worried about Donald Trump—you know, he’s a reality star for godssakes….It’s all smoke and mirrors. He’s P.T. Barnum. I couldn’t care less about this man. I’m far more concerned with how we’re receiving him than I am about him on the whole. We’ve got to get together because we’re splitting ourselves right down the middle.”

Did she have to go through a process, a learning curve, to become compassionate toward people who don’t agree with us?

“Absolutely. Remember I’m fifty-four years old. I’ve been on the planet for a long time. That took me a long time. I still haven’t really figured it out, but I do know, for me, [compassion and kindness] gets me out of my own fear and my own ego.

“When I was little, the bullies won. They beat me up and pushed me and hit me, and called me names, and sabotaged me. They won. I turned all of that inner anger to outer anger. I was a very angry twentysomething, and violent. What I realized was, I can disarm the bully and the enemy, if, in fact, that’s who they are, if I go toward them in a loving, kind way and ask them, ‘How can I help? What can I do?’ Not, ‘What’s wrong?’ Not, ‘What do you believe?’ None of that stuff, because all that does is start debate. But really, truly asking, ‘How can I be of service to you?’

“Does it always work? Of course not. But that’s not the point. The point is, I’m no longer drawing lines in the sand and saying, ‘You stay over there, I’m going to stay over here. You believe that and I believe this.This is how we’re going to speak.’ It doesn’t make any sense. It doesn’t work in relationships and doesn’t work with humanity.”

Seroconverting to positive in 1985 and diagnosed with AIDS in 1995, Billings had to find her footing at first. How did she survive those first years physically, emotionally? What kept her going post-diagnosis?

“Oh, boy that’s a good question. I really believe that my wife saved my life. I was loved completely and fully,” she says about Chrisanne, whom she has known since high school drama club. “I had an incredible support system. I went out and I searched for stuff, support groups and information, and one thing or another.”

It started, however, with Chrisanne. “I remember when I was first diagnosed, I went into a terrible depression, which makes sense. I was lying on the bed curled up in a little ball. My wife came in and said, ‘Okay, look, here’s the thing. I totally get that you’re super-depressed and super-sad, certainly. But if you’re going to curl up in a ball and die, I can’t watch it. I can’t be around to watch it.’

“That really struck something in me because I thought, ‘She’s right,’ and not just her, but that would be true of anybody, everybody in my life. With the help of others, I just didn’t give up. I didn’t stop. I kept doing things. I felt like, ‘Look if my time is up and I’m going to go, then I’m going to go.’ I helped a lot of my friends die, a lot….I felt, ‘Well this is what’s happening right now. If it’s going to happen, it’s going to happen. But it’s not going to happen with me just sitting around and doing nothing.’”

Being an active participant helped her thrive, as did learning to be kinder to herself and others. “Kindness is action. You have to do things. You can’t just be kind. You got to do something in order for that to be true.”

Were there moments that stick out for her where she kind of found her “kindness groove,” to say “Hey, this is working’”?

She laughs at my description: “My ‘kindness groove.’ That’s genius. I feel like that sort of happened, oh, I don’t know, probably fifteen-ish years ago,” she says, giving a nod to meditation and her students. “My students are some of the greatest teachers I’ve ever had. Just in the last fifteen years as I’ve been teaching more and more, they have allowed me [to grow] and said to me very clearly, ‘When you do this, when you say this, when you behave in this way, this moves us forward or this opens us up even farther.’ That’s when I went, ‘Okay, then we should keep doing that….That’s a really good idea. That’s what was changing me.’ They were changing me. I would leave and go, ‘Okay, I think I can actually apply this. Maybe I can actually try this myself.’”

I wondered if the younger generation, especially when she speaks to LGBT audiences, heed her lessons about the early AIDS epidemic—how she carries with her always those who were “systematically murdered.”

“Look, I think the younger generation hears as much as they want to hear and then they go out and they play. That’s what they should do. You can only talk to somebody for so long about the old days before they just become the boring old days. You come back to: I say what I say. I speak what’s true. If twenty percent of it penetrates, I’m good.”

Speaking of the disconnect with the old days, I mention that students in one of my writing classes had never seen West Side Story. I was agahast until I remembered it debuted sixty years ago.

“Listen, that happens to me all the time! I can’t tell you how many Liza Minnelli references I make in class, and people look at me like I’m insane and have to ask me, ‘Isn’t she the daughter of Dorothy?’ I just go: I can’t have this conversation with you, it just upsets me!”

“And it all comes back to Dorothy,” I quipped.

“Well, hello.”

For more information about Alexandra Billings, log on to: www.alexandrabillings.com.

Post-production (digital styling) by Eve Harlowe Art & Photography (www.EveHarlowe.com). Hair by Louise Moon/GRID Agency; Makeup by Garret Troy Gervaise/GRID Agency. Special thanks to Apex Photo Studios: www.apexphotostudios.com.

Sean Black photographed Dita Von Teese for the December 2016 issue.

Chael Needle is Managing Editor of A&U.

Seeing (RED)
Ange(RED) over the state of AIDS, Bobby Shriver gets revved up with A&U’s Dann Dulin about irrational mindsets, selling products as a form of fundraising, and what he learned from this very interview
by Dann Dulin

Photography by Tim Courtney

What do Dakota Fanning, Mary J. Blige, Apolo Anton Ohno, Penelope Cruz, Chris Rock, and Steven Spielberg have in common? They all have been models for famed photographer Annie Leibovitz to lend their support to (PRODUCT) RED.

(RED) is a new economic initiative established by Bobby Shriver and Bono that was launched in the United Kingdom in March of 2006, and here in October. (RED) engages businesses to sell their product with a percentage of that sale going toward the Global Fund in its battle against AIDS, malaria, and tuberculosis in Africa. The Fund represents a novel approach to international health financing. In a nutshell, it purchases medicines and then distributes them to the poor.

After opening the door to the (RED) offices located in a West Los Angeles high-rise early one morning, I immediately spot Bobby Shriver in his tiny cubicle, already conducting business on the phone. Greeted by several friendly assistants who offer me a beverage, I am seated on a black vinyl sofa. The lobby area is dripping with (RED) ads, life-size posters, and products. Magazines, such as Dazed and Harper’s with (RED) ads and articles inside, are scattered on the reception table, and there are even several bouquets of fresh long-stemmed red roses. The small makeshift “suite” is industrial-style, complete with cement floors. The atmosphere is informal, yet diligent. It’s definitely a working environment.

After a brief wait, a tall figure swaggers toward me, extends his hand, and flashes a familiar full-tooth hearty grin, “Hi, I’m Bobby. It’s nice to meet you.” I’ve seen that smile before. I grew up with it. He is part of an American dynasty—the Kennedy clan. Eldest of five children, his mother is Eunice Shriver, founder of the Special Olympics and sister to President John F. Kennedy. Bobby’s father is Robert Sargent Shriver (Bobby is named after him), former Ambassador to France who ran for the Vice Presidency in 1972. And of course his sis, Maria Shriver, is a noted journalist and the wife of California’s governor. Though Bobby has a strong family foundation, he is his own man.

Today, he sports casual, hip jeans, black, comfy, somewhat preppy shoes, and an eggshell-colored, bulky hooded sweatshirt zipped halfway that reveals a tight, white V-neck T-shirt. Around his neck dangles a lengthy (PRODUCT) RED scarf. Right away, I sense a lighthearted and outgoing individual. Along with his affable assistant, Julie Cordua, we convene in one of the larger offices. Throughout the interview, Bobby, who is fifty-two and resembles a young collegiate, is playful, upbeat, with a fun sense of humor—and on occasion, a little whacky. I feel a camaraderie with him, possibly because of similar personalities, but also because we are both of the same generation. He sits in a simple office chair with roller wheels, legs stretched out in front of him, and briefly flips through an old issue of A&U while tapping his foot.

I note his Gap scarf. He instantly replies, “It’s made in South Africa by people with HIV.” (Other items of (PRODUCT) RED include sunglasses, wallets, shoes, iPods, and phones that are manufactured by companies that have joined (RED)—The Gap, Converse, Emporio Armani, Motorola, and Apple.) “And though this scarf is red, not all the products are red,” Bobby points out, explaining that the color red was chosen because it symbolizes a state of emergency and because blood is red which is the principal route for HIV to enter the body.

“Red is a state of mind, not just a color,” Shriver clarifies, in his husky, raspy voice. “There are (RED) people in the world and these people don’t just wear the color red. They have a social consciousness and understand that shopping is a form of power. When they shop they exercise that power by reaching into their pockets. Then there are others who aren’t (RED) people. They might like to wear the color red, and god bless them, they don’t yet understand that some portion of their money can buy influence.” He further explains, “(RED) kind of works in a manner similar to how American Express works. They go to merchants and say, ‘Look, we’re gonna charge you more than Visa.’ The companies ask, ‘Why would I accept that?’ They respond, ‘Because our card members spend a lot of money and you want them as your customers.’ Then the merchant concludes, ‘Well, in that case, I’m gonna accept American Express cards even though it costs me more.’ In a funny way, that’s what we’re trying to do.” He chuckles to himself. “We’re trying to say, ‘We’re gonna assemble (RED) people and they’re gonna shop based on that symbol.’”

Interestingly enough, one of the reasons that (RED) developed was Shriver’s discomfort with asking people for money. “I grew up in a political family where that was common,” he says. “My mom ran the Special Olympics and she would have dinners to ask people for money. I always hated that. So I thought I needed to do something else. I wanted to make some product that I could sell to people.” In the mid-eighties, Shriver began producing the pop culture album series entitled A Very Special Christmas, with the proceeds benefiting Special Olympics. He met Bono some twenty years ago during his work on that album. “The records sold like crazy, and that was so much nicer than asking people for money!” Bobby says, with a tone of relief in his voice. In 2002, he started working politically with Bono by cofounding DATA (Debt, AIDS, Trade, Africa), an NGO that strengthens equality and justice for the African people.

(RED) initially began in Shriver’s living room and developed over a period of time. “We knew we needed a symbol, sort of like the Nike Swoosh that people could see and think, ‘That’s me. I’m fast. I’m sexy.’ I know when I buy something I want some of the money of my purchase to go for something good,” remarks Bobby, thinking. “The idea of (RED) is sort of ripping off Paul Newman’s idea a little bit. People buy his dog food, popcorn, cookies, salad dressing and almost nobody can tell you where the money goes. Interesting. Do you know where the money goes?” he asks rhetorically, “But you buy the stuff anyway.” I respond that I buy because I trust Paul Newman. Shriver adds, “And the products are good!” We briefly discuss Newman’s organization, The Hole in the Wall Gang, a camp for terminally ill kids. “The point is that the consumer doesn’t need to know exactly where the money is going,” Shriver emphasizes. “They just need to trust the seller and the products need to be good.”

Here in America, (RED) is nearly six months-old. How is it doing? “In sales, we’ve been told that we’ve earned about twenty-five million bucks in three months. The Global Fund had received four to five million dollars in the previous five years—total. So in terms of private-sector money, there’s been a five hundred percent increase,” he exclaims excitedly. “People have bought a lot of stuff and that is great. But it makes me nervous because it was [only] the launch. (RED) went public on shows like Oprah, Larry King, and Martha Stewart. We aren’t feeling successful yet. We feel that sustainability is the big game. Although, ya know, we’re working away at it. We’re going to do another Oprah in October in what she calls the “What Did You Do With The Money?” show. Bobby laughs, exhibiting a slightly apprehensive look.

(RED) presently promotes products that people don’t buy with great frequency, like cell phones, and so they are now working toward more daily-use items such as salad dressing, cookies, toothpaste, cosmetics, and lipsticks. “We don’t yet have the capacity, as you can see by this little office, to deal with a lot of niche kinds of companies,” he says. “Our focus right now is on large companies that can potentially keep money flowing into the Global Fund. This will then encourage governments, who are putting billions of dollars into that entity, feel, ‘Okay, there is some private-sector money coming into the Global Fund.’ So then the Fund will be a real public/private partnership.”

(RED) also creates AIDS awareness, thus helping to eliminate the stigma, I say to Bobby. He’s interested and asks, “Why do you think so?” I answer, “Because it’s like what we were just talking about with Paul Newman. People trust you and Bono—two straight men.” “I never thought of that! That we’re straight,” he says, giggling, yet engaged and curious. “I honestly never thought of that. I wonder if that’s true? People look at us and say, ‘There’s two straight men.’ You think that’s the thing?” Indeed. Most Americans still view AIDS as a gay disease. (RED) is pop culture and the Gap is certainly a symbol of middle-class America. What Bobby and Bono have done is truly reach into the core of society, enabling them not only to be educated—the number one tool to fight AIDS—but to globally help others in need. “Usually I don’t learn anything [in interviews],” says Bobby in amazement, “but I learned two things today: I’m straight, and Gap is America.” We all have a jovial laugh.

Bobby is delighted to talk about (RED). His enthusiasm and fervor are infectious. But how has AIDS personally affected him? He points to a poster-size sepia photograph of a regal African woman alone in the desert landscape leaning against the wall next to me. “Herb was my best friend,” he replies softly with a trace of sadness, referring to Herb Ritts, the legendary photographer who died of AIDS in 2002. The photograph is a cover shot of Ritts’s book, Africa. Through the years, Shriver has witnessed the deaths of many others who have “brutally suffered and died of AIDS,” but Ritts’s death impacted him the most. “Herb and I would go out four nights a week with each other. We traveled the world together. When I came to L.A., I was single and a lot of my friends had already gotten married. Since Herb was gay and not involved with anyone, he was available. Having gay guy friends is a very good thing because they’re always available!” joyfully laughs Shriver, tilting back and clasping his hands behind his head. I indicate that there still seems to be some question circulating about Ritts’s cause of death. Shriver hesitates a moment, not quite understanding, then it registers. He relates that initially there was a hush about his death because his mother didn’t know. “Hard to believe, but she had not been told,” he notes.

Growing up in a political household, Shriver has been a longtime activist, following in the Kennedy legacy. The Yale-educated lawyer currently serves on the Santa Monica City Council, where he resides, and he has been highly instrumental in reducing homelessness in that city. In 2000, then-Governor Gray Davis appointed him to the California State Parks and Recreation Commission. Last year, after he was reappointed by his brother-in-law, Governor Arnold Schwarzenegger, his fellow commissioners elected him as chair. As I sit in front of this yoga-practicing dynamo today, I’m aware of how much his life has been devoted to public service. Though he comes from privilege, his heart lies with Everyman. Shriver certainly incorporates his uncle, President Kennedy’s wise philosophy stated in his inaugural address: “Ask not what your country can do for you—ask what you can do for your country.”

Indeed, Shriver could have rebelled and taken a totally different path. What keeps him motivated? “It makes me mad!” he shouts emphatically. I bait, “What do you care?” “I don’t care. I’m just pissed. I don’t really see it as injustice. I don’t know. It just pisses me off! It’s like homelessness. You walk around Santa Monica and you see these people who are clearly severely mentally ill and some are veterans. And up here in Westwood at the V.A. hospital there are empty buildings. Why is that?” he asks vehemently, barely taking a breath to continue. “And it pisses me off to see people dying of AIDS when you can just hand them a little pill. It pissesmeoff.” He says this as if the sentiment were a one-word mantra.

Two years ago, something else pissed Shriver off that changed the direction of his life. What got him stirred up occurred a couple days before Thanksgiving. He and other neighbors were issued a criminal infraction notice from Santa Monica City Hall to enforce a 1948 ordinance, demanding that his hedges be cut by the following Monday. He was able to get the city to withdraw the notice, but in April he was served with civil compliance orders. If he didn’t cut the hedges in a month, he would be charged a $25,000 per-day fine. Their attitude got to Shriver. “The mindset! The mindset of the city was, ‘Fuck You,’” he says fervently, visually upset, stumbling on his words. He shakes his head, throwing his thick, bouncy, salt and pepper hair into a slight tizzy, tossing bangs over his otherwise clean forehead. “That’s the same mindset as the issue of homelessness and AIDS. [It’s like someone irrationally demanding] ‘You don’t need the pill!’” At age fifty, this encounter propelled him to run for the City Council.

Bobby wants to squarely address an issue. “I think sometimes people feel like, ‘Hey, wait a minute. How come you aren’t working on HIV in America? Kids are getting infected here, too.’” Bobby is somber. “The way people live in these poor countries, and these are the poorest countries in the world, is really unimaginable to Americans.” As he continues talking, to make his point, he rolls toward me, taps my knee then rolls back. “In the U.S. every street corner has a Sav-On, a CVS, or a Walgreens, right? That doesn’t exist in these countries. No such thing as a pharmacy. People say, ‘What do you mean there are no pharmacies?’ There’s no pharmacy,” he repeats sternly. “And there’s no hospital. Therefore, even though there are serious problems in America, like the absence of universal health insurance, the situation over there is really beyond that,” sighs Bobby, his hands in a prayer-like fashion over his heart. “The HIV community in America has a big opportunity to lead world opinion by saying, ‘Look, we’re HIV-positive here. It costs us nine hundred bucks a month for our meds. We don’t like it. But guess what? We figured out how to get the money for them.’ But what can we do for those who are also battling HIV overseas? That’s why we’re buying these meds; that’s why we’re writing about the problem. We understand that the issue of HIV
in the poor nations of the world represents a very different set of problems, but we can contribute to
a solution.

“We’re trying to make (RED) not fun, but easy, adventurous, smart, and empowering. We don’t want to heavy people up with guilt. It’s not smart. People want to feel powerful,” Shriver explains. “They see an image of a woman dying in bed with her two kids also dying and she doesn’t have twenty cents. They think that’s wrong. Ya know, we’re Americans. We’re not going to put up with that. What we used to say to people was, ‘Write a letter to the President or to your Senator.’ Most people don’t want to do that. But [instead] if you say, ‘Buy that T-shirt and with that T-shirt you can buy [a PWA] a week’s worth of treatment,’ then they ask, ‘Really?!’” He leans forward, looks me in the eye, keenly, and hollers passionately, “So, get out there and save lives—shop!” Bobby then flashes another one of those famous inspi(RED) smiles.

Thank you to Sherri Lewis (aka “Schmata Girl”), and Rob Novickas for their valuable input.

Dann Dulin interviewed Queen Latifah and Andrea Williams for the February issue.

SHRIVER’S STANDPOINT

What happens after we die?
We go to heaven, of course.

Name your favorite sitcom of all time.
Hogan’s Heroes.

Where do you go to recharge your batteries?
I haven’t been on vacation for so long, I don’t remember, honestly. When I was a kid I would go to the Cape.

Who do you want next in the White House?
Barack Obama.

What is your favorite movie of all time?
It’s a Wonderful Life. Oh, when he toasts his brother [Jimmy Stewart], with all his friends around and says, ‘To the richest man in town’ and the guy’s broke, that’s a big deal. I love that idea–‘the richest man in town’–because that’s the real idea of the world. In contemporary culture, people think the richest man in the world is Bill Gates. God bless him. We work with him, and he’s a nice fellow. But people’s concept of wealth is in terms of just money. That’s not wealth. [He pauses, looks upward.] Yes, that’s one part in the film that makes me cry even though I’ve seen it many times.

What city in the world do you like to visit the most?
Paris, because I lived there and went to school when I was a kid.

Who were your role models?
My parents.

Who do you look up to now?
I think Oprah is amazing. I’ve known her a long time–before she was living in Baltimore. How she grinds that sucker out everyday for twenty years…. Paul Newman is a pretty amazing character. He’s done amazing things. These people are workers. I like people who work!

Out of the many people you have met, is there one in particular who stands out who impressed you, influenced you, or inspired you the most?
Many people.

Who would you like to meet that you haven’t met yet?
Many people!

Complete this sentence. “The one thing I don’t like about growing up in a famous family is…..
My parents weren’t around. They were always working….” [He laughs.]

If you could have a dinner date with anyone from history, who would it be and why?
Jesus, because he’s got the answer to a big question.

BOBBY’S BROS

Bobby gives a brief answer to some of the people who have touched his life

Al Gore: Musician.

Caroline Kennedy: Water skiing.

Julie Andrews: The Sound of Music.

Arnold Schwarzenegger: Fun.

Chris Rock: [He lets out a hearty laugh] Married.

Ashley Judd: Star.

Madonna: Herb [Ritts]. I think of them together. She’s very disciplined.

John F. Kennedy Jr.: [He gives a half-grin] New York City. He was a real New Yorker.

Jamie Lee Curtis: Hot!

Oprah: Worker.

Jacqueline Kennedy: Voice.

Bono: Smart.

Bruce Springsteen: Young. He makes me feel youthful. “…Tie your hair back in a long white bow; meet me in the fields out behind the dynamo…They made their choices and they’ll never know, what it means to steal, to cheat, to lie…” That’s youth music. You don’t say this when you’re a grown up! [from Prove It All Night]

Mary J. Blige: Ghetto fabulous.

Maria Shriver: A worker. She’s a mule.

Bobby names one word to describe himself: Worker.

March 2007

Ambassador of Care
Actor, activist & union boss Kate Shindle uses a new platform to speak out on HIV
by Larry Buhl

Photographed Exclusively for A&U by Sean Black

It was a too-warm nearly-spring day in Los Angeles when I met Kate Shindle at her temporary digs downtown. It was midway through the L.A. run of Fun Home, the musical adaptation of Alison Bechdel’s graphic novel memoir of the same name. Shindle plays adult Bechdel in a touring production of the show that won a slew of Tony Awards in 2015, including Best Musical.

Shindle has been an HIV/AIDS activist almost as long as she’s been acting and singing. Traveling from city to city with the cast of Fun Home has been giving her a platform to talk about HIV/AIDS, (I’ll get to that) just as she did as Miss America (I’ll get to that, too).

I wanted to talk about her two decades of HIV/AIDS work, her new role as ambassador for The Elizabeth Taylor AIDS Foundation and her leadership in Actors’ Equity, the theatrical actors union. And we did cover all that. But as a theater geek, I kept coming back to the show.

A “beautiful heartbreaker”
Fun Home is a challenging and true coming-of-age story—not Shindle’s—of a young lesbian growing up in central Pennsylvania in the 1970s, and the un-closeting and unraveling of a compartmentalized and ultimately unknowable father. Ben Brantley of the New York Times called it a “beautiful heartbreaker of a musical.”

The “fun” is short for funeral. In addition to teaching high school English, the father, Bruce, also managed a funeral home, which provides the setting for a showstopper song, “Come to the Fun Home,” performed by the three Bechdel kids decked out in their groovy 70s bell bottoms.

Daddy!
Come here! Hey, right here! Right now!
You’re making me mad.
Listen to me.
Listen to me.
Listen to me….
—Nine-year old Alison, Fun Home

Shindle plays forty-three-year-old Alison Bechdel, a successful artist and cartoonist who’s trying to understand her younger self and her parents, particularly her father. As she watches the show’s events with the audience, the adult Alison narrates, presenting a scene with a caption, as if in one of her cartoon panels. Sometimes she speaks directly to the characters, though they can’t see or hear her.

Shindle, as Alison, explains how her father was obsessed with appearances, including their museum-like home decorated to an inch of its life with antiques, and the proper look of his family. His angry insistence on making young tomboyish Alison dress like other girls can strike the audience as somewhat cruel.

The LGBT and coming out themes are central in Fun Home but it appeals to anyone whose family looks perfect on the outside but on the inside doesn’t talk about a lot of things that they probably should be talking about.

Bruce is also meticulous about his appearance as a straight man though he’s been sleeping with men, and possibly underage boys, for decades. His façade cracks after Alison comes out to him, inadvertently showing him the freedom he could never hope to enjoy for himself.

It’s a twist on the typical coming-of-age LGBT story. While eighteen-year-old Alison thinks this is her coming out story, she later suspects she’s a catalyst for her father’s non-coming out tragedy.

“The LGBT and coming out themes are central in Fun Home but it appeals to anyone whose family looks perfect on the outside but on the inside doesn’t talk about a lot of things that they probably should be talking about,” Shindle says.

Toward the end of Fun Home, Shindle replaces college-age Alison on a car ride with her father. She knows this will be her last chance to see her father alive, her last chance to connect with him and say “I know who you are and it’s all right.” Through her heartbreaking song, “Telephone Wire,” we suspect that there won’t be a warm and cuddly father-daughter understanding.

This car ride,
This is where it has to happen!
There must be some other chances.
There’s a moment I’m forgetting
Where you tell me you see me.
—Adult Alison, Fun Home

In an ironic echo throughout the musical Bruce muses to himself that he “might still break a heart or two.” He’s talking about breaking young men’s hearts, but the audience knows the hearts he’s breaking belong to his family.

The car ride scene is good example of point of entry for people who don’t have a closeted gay parent, Shindle explains. “A lot of people approached me after the show and said, ‘I haven’t had that issue but I’ve definitely taken that car ride.’”

Shindle was drawn to the character despite having a very different background than Bechdel. At first she assumed the show’s subject matter—a lesbian lead character and a “shut up and kiss me” girl-girl scene—could be a difficult sell in some states. Especially North Carolina, in the era of HB2 (the state’s transgender bathroom bill), she said. What she found was a very warm welcome in every city since it opened in Cleveland in October.

“There are progressive thinkers and people who love good theater everywhere, to be challenged and not only entertained. This show gives people credit for being able to think.”
Given the amount of outrage Shindle expressed at the statements of Senator Ted Cruz, R-TX, she very well may speak out about LGBT issues when the show comes to his state later this year. She says the “red herring arguments” that Cruz and other culture warriors give about transgender people is “reductive.”

“[Cruz says] trans people won’t use the bathroom of their birth gender because they’re either pedophiles or pretending to be trans to abuse people. It’s red meat and plays into the misinformation and fear people already have about what it means to be trans. Cruz paints himself as a constitutional expert and yet he uses these ridiculous and specious arguments.”

There’s one slight drawback to playing Alison Bechdel. She needed to cut her hair short. “At first I thought I could do it with a wig but ultimately that wasn’t going to work. On the other hand, the show is a really good reason to cut it.”

Have tiara, will advocate
The journey of Fun Home is a quest for an answer to the question: How did this family get here? For Kate Shindle, the journey from Miss America to the star of a highly acclaimed musical—and two decades of HIV/AIDS advocacy—was not exactly linear.

Shindle doesn’t talk much about the year she spent with “the crown,” partly because it was well chronicled in her 2014 book, Being Miss America, Behind the Rhinestone Curtain, and partly because her career has moved so far from it. She’s been a working actor since she graduated from college in 1999. In addition to TV and film roles, she’s played Sally Bowles in a touring production of Cabaret, and was a member of the original Broadway cast of Legally Blonde, which is where she met the producers of Fun Home.

[Needle exchange] didn’t make sense to me and I think that is often the case with people who don’t know about it, because you feel like you are complicit in someone’s drug addiction. Then I understood that it encourages people to get treatment even if treatment isn’t a condition in participating in these programs.

Shindle grew up in New Jersey and during her senior year in high school she enrolled in America’s Junior Miss, which is technically not a beauty pageant (no swimsuit competition, and you got a medal not a crown).

She enrolled at Northwestern University in 1994 with a plan to study theater. But she also entered the Miss Illinois pageant during her junior year, and won. The following year she was crowned Miss America. She took a year off from college, and in that time she traveled the country talking about HIV/AIDS.

Shindle says the most fulfilling part about being Miss America was the ability to make a difference, as a twenty-year-old college student who suddenly had a national platform to talk about HIV/AIDS.

“It was amazing in ways I hadn’t anticipated,” Shindle tells me. “The platform was an opportunity that hadn’t been part of Miss America I followed as a kid, and it turned out to be the most appealing part.”

Most of her duties involved advocating HIV/AIDS prevention and education, through educating students, lobbying legislators, and helping nonprofits raise funds. “At the time there was the launch of a home access HIV test so you could test yourself, so I promoted the importance of knowing your status,” she said.

And she shared the importance of needle exchange, a concept that’s still controversial considering how many states and municipalities still outlaw it or restrict it. Shindle didn’t get the concept either, at first.

“[Needle exchange] didn’t make sense to me and I think that is often the case with people who don’t know about it, because you feel like you are complicit in someone’s drug addiction. Then I understood that it encourages people to get treatment even if treatment isn’t a condition in participating in these programs.”

During her reign, Shindle urged the Clinton administration to legalize needle exchange nationwide, to no avail. But she says that she felt her efforts helped the issue reach critical mass as a harm reduction strategy.

On de-criminalizing HIV
Though she entered college not knowing anyone who had HIV or AIDS, she left college knowing many. Over the years many theater friends, and even an uncle, contracted the virus. She remained an outspoken HIV/AIDS activist years after her reign and raised tens of millions of dollars for various organizations. She also chaired a conference session at the World Health Organization in Geneva, Switzerland.

Her knowledge and passion about the issue made Managing Director of The Elizabeth Taylor AIDS Foundation, Joel Goldman [A&U, May 2016], think of her for an ambassador position. Last month Goldman, a friend from way back, announced Shindle’s ambassadorship as well as her mission: to advocate for reforming outdated HIV criminal statutes.

HIV criminal laws add penalties, sometimes very harsh penalties, for those who don’t disclose their HIV status before having sex. Sometimes the laws tack on penalties to those who are HIV-positive for engaging in criminal behaviors that don’t spread HIV, or for activities that don’t have anything to do with HIV. According to the U.S. Centers for Disease Control and Prevention, two dozen states criminalize one or more behaviors that pose a “low or negligible risk for HIV transmission.”

Back in the 1980s and ’90s these laws, all at the state level, were passed ostensibly to keep people safe, but they were largely based on misinformation and ignorance about how HIV is transmitted. And then, they were forgotten.

Many of the criminal codes are still on the books and some are still enforced. In some cases a person with HIV can get a felony conviction and decades in prison for a crime that someone without HIV would get a misdemeanor for.

Some lawmakers are paying attention. In February a group of Democratic state lawmakers in California introduced Senate Bill 239, which would update California’s 1988 HIV law to state that intentionally transmitting any infectious disease, including HIV, would be a misdemeanor, not a felony. If SB 239 passes into law, it will no longer be a felony for an HIV-positive person to donate blood, organs, semen, or breast milk. That’s because existing law ensures all donors of any bodily substance are screened for HIV and other diseases before any bodily fluids are donated.

Other states, however, are still far behind the times.

Shindle calls the laws “draconian and archaic.”

“They are a remnant of another time, when a lot of people were scared. They pushed through legislations to keep constituents safe or to appease constituents who wanted to feel safer.”

She adds that the laws are not only harsh and not based on science, they discourage people from getting tested. “We don’t need any incentives for people not to get tested.”

Union Boss
Shindle has another topic to speak on as Fun Home travels from city to city. As the President of Actors’ Equity Association since May of 2015, she’s been looking for ways to improve pay and benefits for more than 50,000 actors and stage managers across the United States.

Wearing her union boss hat, Shindle recently called out Trump administration’s proposal to defund the National Endowment for the Arts (NEA). The day after we met, she took a night off from the show and flew to D.C. to address the National Press Club. Her message: the NEA is a “good deal” and its elimination would be a job killer.

“There is so much irrefutable evidence that the arts serve as an economic engine, even and especially in cities and towns whose factories or industry jobs have disappeared,” she said. “All together, the arts are a $700 billion industry employing directly 4.7 million Americans and millions more indirectly.”

Whether Shindle’s words are heard by the President—or, more importantly, Congress—remains to be seen.

At this cultural moment, it’s important to be ambassadors of compassion and care.

Shindle admits she was pro-union long before she got involved in Actors’ Equity. “We performers are conditioned to be grateful for jobs and feel lucky when we do work that it can translate into willingness to work just for exposure. But actors are essential to the art and the commerce of theater and Actors’ Equity is at the juncture of art and commerce. We recognize the value of performing but at the same time we say it’s important to get a wage for it.”

In other words, performers’ unions are about standing up, speaking out, and being recognized. Which brings us back to Fun Home.

Shindle says one of the important messages from the show is that people need to be free to recognize and embrace and live their identities. “And when they can’t do that, bad things happen like with Bruce Bechdel,” she says.

“At this cultural moment, it’s important to be ambassadors of compassion and care,” she adds. “We need to stand up for people who are trying to make the best of what they have, whether they’re trans, straight, gay, people of color or HIV positive. The more I can encourage and catalyze conversation and openness and dignity and respect, the more successful I feel this adventure will have been.”

Hair and makeup by Eric Leonardos.

Follow Kate Shindle on Twitter @kateshindle. For more information about The Elizabeth Taylor AIDS Foundation, log on to www.elizabethtayloraidsfoundation.org.

Sean Black, a Senior Editor of A&U, photographed Alexandra Billings for the March cover story.

Larry Buhl is a radio news reporter, screenwriter, and novelist living in Los Angeles. Follow him on Twitter @LarryBuhl.

Full of Life
The outspoken, delightful Queen Latifah raps with A&U’s Dann Dulin about “da monsta,” confronting family loss, self-empowerment & her new role in an HBO movie about living with HIV

“Chicken shits!” replies a playful Dana Owens, aka Queen Latifah, in a low, understated voice as she bursts into a mild chuckle in response to my comment that not many actors would jump at the chance, as she did, to take on the role of an HIV-positive person. The HBO film, Life Support, which preems on March 10, is based on the life of AIDS activist, Andrea Williams. Written and directed by Andrea’s brother Nelson George, the project counts Latifah and Jamie Foxx among its executive producers.

Latifah grabbed the role because she has not only been at the forefront of the AIDS epidemic from the beginning, but because she identified with the character of Ana Willis, Andrea’s alter ego in the film. “Once Andrea and I talked,” Latifah reveals, “I connected with her. So I felt, ‘Okay, I know where you’re from; I know where you’ve been. Not everything, but I’ve been in some of those same places, hung out on some of those same streets, and gone through some of those same experiences. And, if not, then I can draw from my family, I can draw from you, I can draw from Brooklyn.’ I hung out in BK a lot growing up, so it was important for me to get back East, absorb New York again, and to just catch the vibe again. Ya know what I mean?”

Latifah, who turns thirty-seven in March, sits on an elegant brushed-gold sofa in a suite on the eighth floor of the Pasadena Ritz-Carlton. She’s meeting with a select group of journalists today to discuss her latest project. In a few days she will be off to the Sundance Film Festival, where Life Support will be the closing film. Latifah wears a black, long-sleeved wrap dress that extends below the knee and sheer ebony hose. Legs crossed at the ankle, her feet are comfy in the hotel’s white terrycloth slippers. With manicured nails of clear polish, she’s accessorized with large hoop earrings, a diamond tennis bracelet, and several long gold necklaces that include her signature motorcycle key, which once belonged to her brother, Lance. He was killed in a traffic accident on the motorcycle that had been a birthday gift from his sis. After the tragedy, Latifah and her mother, Rita Owens, founded the Lancelot H. Owens Foundation, which provides college scholarships and endows various charities, whose causes include AIDS research. During the grieving process, she wrote the album, Black Reign, for him, which went platinum. One of the songs, “Coochie Bang,” advises safe sex: “Brothers better strap their thang, thang, ladies; don’t let a man if they don’t have a condom.”

At the moment, Latifah’s affable entourage—an assistant, makeup artist, hair stylist, and PR rep—stay quietly behind the closed bedroom door. In the living room, Latifah is cool, calm, and centered. It’s hard to know if she is always like this. Latifah also has a good-natured sense of humor, very down-home friendly, and she’s passionate about her role as an activist in Life Support. With any role she undertakes, whether it’s the butch lesbian Cleo in Set It Off, the dying Georgia Byrd in Last Holiday, the sassy Mama Morton in Chicago, or the smooth-talkin’ Motormouth Maybelle in the upcoming Hairspray, Latifah immerses herself in the character. She tests limits not only professionally, but in her personal life, as well. As she recounts in her 1999 autobiography, Girls First, a terrified Latifah hesitated at the edge of a fifty-foot Jamaican cliff, not wanting to take the planned leap into the ocean below. But she did it! It wasn’t about the jump. “I needed to know if I could be brave enough to overcome my fear….When I came out of the water, I was exhilarated.”

Latifah tackled fear early in life when she lost two of her cousins, Fifi and Darien, who both died of AIDS-releated complications. “I wasn’t afforded the luxury of avoiding it and acting like it didn’t exist. It was like, you got to deal with this or….” She doesn’t finish the sentence, but briefly looks out the window onto the San Gabriel Valley lawns, palm trees, and greenery amid Spanish-style red-tiled roofs. “I don’t get to hug my cousin. I don’t get to say goodbye. I don’t get to touch him and let him know, ‘I love you,’” Latifah says urgently, shifting her eyes back into the room. “This was the eighties. I’m glad I took the time to read about AIDS and continued to be educated as much as I could, because back then they were actually thinking that this was just a gay disease; that you can’t touch anyone with AIDS. There were all these untrue rumors. So if you didn’t do any research, you wouldn’t know the truth.”

Fifi was a heroin addict and probably contracted HIV through the use of dirty needles. She died of the opportunistic infection, PCP. “I saw her deteriorate and die. It was sad. It was tough,” says a distraught Latifah, shaking her head. “She was Muslim so she had a Muslim burial. She was beautiful. She was buried in two days, which is customary. It was a quick, quick, goodbye. It wasn’t really about just what caused her death, it was about me losing one of my cousins who I loved. She left two young sons who are going to have to deal with this.”

Like most normal teens, Latifah’s developing years weren’t just about hanging out at parties, it was about confronting core life issues. During this period, Latifah also lost several aunts and uncles to drugs and alcohol. “It seemed like we were going to a funeral every year. Most of my friends didn’t go to funerals until they were in their twenties,” she says. “It was an emotional situation every time. I’d watch my family cry, my dad cry. Seeing that as a little kid, you kind of learn and relate to the fragility of life.” There’s a brief silence. “Darien got a blood transfusion that was tainted. In a matter of months, he was gone. It was about how something like this could take my virile, strong male cousin who would knock any guy out for me to this thin, frail, docile person who lost his life to this thing in no time. So, it was just like, What is this?!”

I ask Latifah how her cousin’s HIV diagnosis “infected” her. “It didn’t infect me,” she responds with understandable surprise—“Affect.” She laughs and becomes playful. “Oooh, go easy. Ya know what I mean?! I’m fightin’ against that right there!” As her head bobs with amusing attitude, her shiny wavy hair bounces. This is the familiar, likeable Latifah I’ve seen in films, on stage, and on the tube. She’s having fun. We both laugh. She continues to rib. “Take your time, now. Say it right! There’s a big difference in those vowels there.”

While we’re on the subject, I ask her if she gets tested. “I’ve gotten so many tests [through the years]. I get ’em periodically to just make sure. The test is better now. I mean, the first time I got tested it took two weeks!” she blasts. “That was the worst two weeks of my life! I was like, ‘Omigod, I’m thinking of every—single—thing—I—ever—did.’ I was probably nineteen or twenty and just thinking about that one time,” she laments, stretching out the two words. “It was like, ‘Please, God.’ And when that test came back negative I was like, ‘Thank God. Omigod. Thank God!’” She’s animated, brings her hand to her mouth and mockingly bites it. “I’m glad the test is shorter now. They’ve even got a swab test, but it’s not that reliable because Andrea has taken that test and it comes up negative.”

I comment that the eighties were rough times for many of us who saw our loved ones tortuously die. “Hard times for sure,” agrees Latifah, “but I think it’s worse now. We’re making it convenient to turn a blind eye to what’s happening. What makes it worse is that we really think we’ve got a handle on it. We don’t. There’s no reason so many people should be infected worldwide. Had the government not viewed AIDS as a gay disease in the beginning, then they could have lassoed this thing pretty quickly.” She leans forward. “If politicians aren’t serving the AIDS crisis, out they go!” Latifah fervently declares. “This is a preventable disease.” She picks up the bottled Arrowhead water that sits atop the dark brown wood coffee table and takes a sip.

Latifah believes that the subject of AIDS needs to be media-splashed, but with a twist. “Put a regular face on it like BET is doing,” she notes, referring to BET’s PSA campaign where young HIV-positive people are draped in red blankets. They reveal how young they were, and how they contracted HIV. “They look normal. And I think it’s important to put a normal face on this disease, so that people don’t see it as a monster. Ya know, in some places they call it ‘da monsta.’” She slightly raises her eyebrows, intently looks at me with those expressive, light brown eyes, and mimics. “‘Oh yeah, he got da monsta; ya know, the package.’ And there’s no face that it comes along with to say: ‘Hmmm, I better make him wear a rubber because he’s got it.’ It doesn’t work like that,” she scoffs in a calm voice. “I think that young people need to be better informed. So must older people who are now back in the dating scene after divorce or widowhood. This is a different day and age.

“I remember when the Gay Men’s Health Crisis [GMHC] used to have the big AIDS dance-a-thons. We’d do those every year from the first one on,” recalls Latifah about the early years of the epidemic. “They need to get that crackin’ again. That was really a big, big event. Five thousand people dancing all night to raise money for stopping AIDS. They made a lot of money.” The dance-a-thons are back, I later confirm.

There’s a soft knock on the front door. A rep slowly peeks in and motions for Latifah. Time to end already?! The door slowly closes. Latifah pays no mind. “I’m glad GMHC sort of opened up a little bit, because even they kinda did the ‘gay men’s thing’ for a second. And it was like, ‘This is going to affect everybody, so can ya help the girls out a little bit? I know [you’ve got a lot to deal with] being infected, but you gotta open up too. You got to set the example.’ And now GMHC is one of the strongest organizations around that’s taking care of people.”

Latifah is, indeed, true to her name—an Arabic word meaning delicate, sensitive, and kind. But just where does that passion for compassion come from? “My parents instilled a lot of love and strength in me and set a good example. They pumped me up with all of those themes: You can accomplish anything you want if you just believe it; set your mind to it and work hard; keep God first, and this and that. I am empathetic. I don’t know if it’s because I’m a Pisces,” she smiles, exposing her big dimples, “but I feel for people, and I’ve never looked at myself as being better than anyone else. Not in school, not in life. I got voted ‘Most Popular’ in high school, and it wasn’t just because I was popular, but because people really liked me. I treated the nerds with respect. I treated the jocks with respect. I treated the thugs with respect. I treated the ho’s with respect. Everybody was a person to me.

“I can have a conversation with anybody. I’ve always been like that. My parents prepared me to hold a conversation with anyone, whether they were older than me, younger than me, or smarter than me,” she boasts proudly. “That gave me the confidence to walk into any room in Hollywood and sell whatever I had. And so when I see somebody suffering I just wanna help. I’m the type that will pull over and help somebody who’s stranded on the side of the road. You hear that about Tom Cruise a lot. I met him and I can relate to why he cares about people. This is the same kind of person who will donate money to a cause, or give money to someone on the street, or help out with the AIDS crisis. You care, so you do.

“Classmates,” she utters suddenly in a loud whisper. “I’ve lost classmates who were in the movie Paris Is Burning. They’re gone! They’re gone. Like, these were my buddies. We’d hang out in the Village together. And to think, these kids are gone. They didn’t even reach twenty-one because of this disease.” She clears her throat and coughs. “But to think of the kids who are not going to reach twenty-one now, for really no good reason other than the fact that they’re not going to the doctor to get regular checkups, they’re not asking for an AIDS test, and they’re not using condoms because they think AIDS won’t happen to them. Girls trusting boys who can’t be trusted; and boys trusting girls who can’t be trusted.” She gnaws the lower side of her lip and slightly nods.

The limelight does not shield Latifah from danger. “I’ve had to deal with asking the questions of my sexual partner. Ya know what I mean? ‘Do you use protection while you do this?’ Look, I mean, I’ve had to bring my own condoms to these situations, which made me worry. Like, ‘Didn’t you know you were gonna get some tonight?!’” she says with a wry manner, swaying her head cockily from side to side and laughing.

There’s a rap on the door again; time for her next interview. Unfazed, she continues laughing. “I mean, you know your size better than me, but….” She halts and turns somber. “Some don’t have self-respect or self-esteem. They fall to the pressure because they wanna be loved. If the man says, ‘I don’t like the way that feels,’ then he’ll take it off. Or if the woman says, ‘I don’t like rubber. It makes me irritated.’ Again, off it comes. It’s like, damn, that’s all it takes [to get infected]!” Dana looks away for a second, opens her hands, and shrugs. “I was just taught to protect myself. That’s in my power.” Honest, proud, genuine and yes, powerful. Queen Latifah is, indeed, royalty.

APPROACHING ANDREA
Andrea Williams, the Individual Living with HIV Who Inspired Queen Latifah’s Character in Life Support, Chats with A&U

In the film, the organization is called Life Support. Is that the real name?
[She answers in her heavy Brooklyn brogue] No, it’s Life Force. It’s been around since 1989 and I’ve been with them since 2000.

What else is fictional in the film?
I was not into drugs, but contracted HIV through my husband who probably got infected by being a user himself. We are still married. [She pauses to think.] The teen dying from AIDS in the film was a real-life person, and he was, indeed, a friend of my daughter. I was first diagnosed in 1993, so the [film’s one-year time span] is a culmination of about fifteen years.

What did you think of Queen Latifah’s portrayal of you?
She wasn’t really being me, but she did a damn good job. A damn good job! [She says this loudly and with punch.] Dana got into it. She was givin’ out the condoms on the street [in the film], doin’ it just like we do! [She chuckles.]

In Life Support, Ana gives her daughter condoms. Did you really do that?
[She’s passionate.] I give everyone condoms! And I not only show them how to use ‘em, but I also show them some nasty STD pictures that I carry with me. Also, I give risk reduction workshops that are basically safer sex parties. The first part is information, sort of like HIV 101. The next part is instructional that includes learning which condom is best for the individual. There are many types on the market and it can be confusing—the Rough Rider, the Pleasure Plus, [Lifestyle] Vibra ribbed, and [Crown] Skinless Skin. I bring these condoms so they can see them and feel them. The last part is how to enhance your sex life with toys, which I demonstrate. When I do these parties I do them in people’s houses. It’s like a Tupperware Party. I go right to your house and it’s free of charge. All’s you have to do is get some people and I’m your entertainment.

What else do you do for Life Force?
I’m a pre- and post-HIV test counselor. Some days I go to a needle exchange testing site. The user comes in, exchanges needles, and we ask them if they want to be tested. I also facilitate an HIV-positive support group. I am no longer in support groups, because I got support-grouped out! [She laughs.]

Since you are out in the field, on the front lines, what do you see currently happening in the AIDS community?
I am seeing a lot of older people infected with HIV. I’m talking about people over fifty, people over sixty. I know a guy who in a matter of weeks deteriorated. Now he’s in a wheelchair and on dialysis.

What are the immediate needs of your AIDS community?
Money. My organization recently didn’t get funded by a contract. So right now I don’t know what will happen. We don’t have money to buy condoms or print our literature, so I’ve had to stop with my Tupperware Parties. [She smiles, but weakly.]

For more information about Life Force or to make a donation, log on to www.lifeforceinc.org.

Thanks to Susan Nowak for making it a reality; Amanda Silverman for her constant support; Mark Rebernik for his editorial expertise; and Matthew Hetznecker for his overabundant observations.

Dann Dulin interviewed Julie Andrews for the November 2006 issue.

Diva for Justice
Health educator, TV star & Ambassador for The Elizabeth Taylor AIDS Foundation Chandi Moore talks about HIV criminalization laws, trans identity and needing no excuses
by Larry Buhl

Photographed Exclusively for A&U by Sean Black

At the photo shoot for this story, Julie Cloutier, a representative from The Elizabeth Taylor AIDS Foundation, presented Chandi Moore with three ribbons to select from Taylor’s own collection, a gesture for being ETAF’s newest ambassador.

When Cloutier opened the third box to show the largest and most bejeweled ribbon, everyone surrounding her—the photographer, Sean Black, and the men doing hair and make up—said, simultaneously, “Oh that one, that’s so Chandi.”

With her purple locks and long lashes, Chandi Moore’s public persona could be described as Big Beautiful Diva. But when I sat down at her office at Children’s Hospital of Los Angeles, where she’s a trans youth health and HIV prevention educator, she came across as gently sweet, grounded, and other-focused. She tends to call people “sweetie,” which threw me at first.

Chandi Moore may be the most famous person currently working at Children’s Hospital, thanks to reality television.

Moore wasn’t looking for a role in television when Caitlyn Jenner’s producers discovered her in 2015.

“I don’t know how they found me, to be quite honest,” Moore says. “I was here at work and I got a call from a production company saying they wanted to talk about something with Caitlyn Jenner and would I sign a disclosure? O-kayyy.”

That led to an in-person interview, then a Skype interview, then a mixer where she met Jenner, and then a leading role on I Am Cait.

That role led to public disclosure, through televised heartfelt discussions with Jenner, of her struggles with coming out trans to her family and her run-ins with the law. It also led to articles like “19 Times Chandi Moore Was the Real Star of I Am Cait” and random encounters on the street—almost all favorable—and even one at the Grand Canyon.

“We were filming in Arizona during the second season and we went to the Grand Canyon,” Moore recalls. “While we were shopping this lady from Russia spotted me. She reached out and hugged me and thanked me for being myself.”

Knowing me, knowing you
For many trans people there are persistent questions of identity. The question is, first, who am I? After that question is answered it’s society that asks, daily: Who are you?
“People feel obligated to tell me who I am and who I am not,” Moore says. “I pick and choose my battles, though. I have a thick armor, but I don’t take on every battle.”
So, for those who are inclined to tell her who she is, she has a simple message.

“I’m trans. I am okay with being trans. And I want you to know that I am trans so that when you come talk to me you know what you’re getting into. That’s part of the reason I wear big lashes. It eliminates the whole problem getting that out in the open right away.”

“I don’t want a relationship with a boyfriend who feels like he has to be sneaky about it,” she continues. “I want a partner who is comfortable with me and doing regular things out in public that cisgender women and men do.”

Moore explains that her identity is not about “passing” as a woman.

“I don’t want to be a woman. I am happy being the best of both worlds. I feel like a lot of issues people suffer from is that they think we all want to be women. Some of us just want to be. Just be.”

Growing up and just being was more of a challenge for Moore, she tells me. Born Earl Moore, she was raised in Los Angeles with three siblings by very religious parents.
She now considers herself more spiritual than religious, but at the time her family’s devotion to the church put up extra obstacles to coming to terms with who she was.
“Whenever the church doors were open, we were at church, vacation bible school, ushers, all of it. It was hard for me to go to church and think that sermons of love were about me. That got me disconnected with God for so many years.”

The birth of Chandelier
Her transition was going to happen eventually, but it was a drag show at a straight nightclub in Culver City, California, that hastened the coming out, Moore says.
“I think I felt [trans] deep inside for a long time but was suppressing it because I didn’t know what to do with how I was feeling,” she tells me. “But other people recognized what I could not see.”

And those people—friends—gave her a little push out of the closet by making her part of a drag show.

“They gave me the wardrobe and hired a make-up and hair stylist for me, so I felt like I couldn’t back out,” she says. “Then they had me pull names out of a hat. I pulled out Chandelier.”

She shortened it to Chandi, and the rest is history.

But first, there was a stop in prison.

Getting by, getting caught, getting out
On an episode of I Am Cait, Chandi confessed to Jenner about what she did to survive during the salad days of her transition. For those who didn’t see the show, here is the recap: In the early nineties she moved away from her family—cut ties with them—and ended up with what she calls an “unsavory crowd.” For survival money she resorted to check cashing, credit card fraud, and selling fake IDs. She was caught and sent to prison in 1992 and with good behavior served less than six months of a sixteen-month sentence.
If you think that being trans in prison is difficult and degrading and humiliating, Chandi says you’re right. At the California Rehabilitation Center in Norco, she was placed with the general population of men, because that’s where officials determined she should be based on her genitalia.

“There were 1,500 men in our area and eight of us were trans, but they wouldn’t classify us as trans. Their designation for us was PC, because we needed protective custody.” Except the PCs weren’t given anything close to protective custody.

“There weren’t single showers, just eight-men stalls, and I would try to shower super-early or late at night,” Chandi recalled. “Still there would always be men coming to the shower following me, trying to get whatever, a look, a touch, anything.”

The authorities did nothing to protect her from the advances. What saved her was a friendship she formed with a straight boxer in her dorm who acted as her platonic guardian.
Chandi told me that her relatively short prison experience was a “huge wake up call.”

“I had epiphany in prison that I did not want my life to be like that. I felt there was something more in me that I could offer the world and being in prison wasn’t going to help me get there.”

After getting out, she continued on her journey to transition and to figure out what she could be giving to the world. She reconnected with her parents, who put her through cosmetology school. With a beauty certificate she started working at the Beverly Center Macy’s cosmetics counter.

After a few years a friend and mentor told her about a job opening for a health educator at the Minority AIDS Project. “I said I don’t know anything about prevention. But I felt like if I was trained properly with the right tools I could do it.”

While working at Minority AIDS Project she volunteered with Trans GIA (girl in action) Divas to empower trans women. The group won the Trans Pride LA community advocate award in 2011.

At her current position at Children’s Hospital of Los Angeles, Chandi facilitates HIV testing and counseling. She also leads groups like BLUSH (Brave Leaders Unified to Strengthen Health), which educates trans youth about HIV. And she’s getting a certificate in research to be able to lead more focus groups. She’s done expert consultation for the U.S. Centers for Disease Control (CDC) on youth and HIV. She also stars in the CDC’s new HIV testing and prevention campaign, “Doing It.”

Empowering trans youth to stay safe
The statistics on HIV for trans women are shocking. Studies show that transgender women are forty-nine times more likely to be HIV-positive and that one out of every three trans women of color is HIV-positive already.

“The rate of HIV [among trans women] is slowly dwindling and we think PrEP has a lot to do with that,” Moore says. “But the rate of STDs is going up, and we think PrEP has to do with that too. People have been a little comfortable with using PrEP without a condom.”

Moore explains that the high rate of HIV and STDs among trans women of color stems from how families and society treats them.

“Trans women of color often don’t have the support of family when they decide to transition. They get put out on the streets. That’s where the survival sex comes in. These johns out here don’t care. They will pay more to have sex unprotected. And the women need the money. They will do what they need to do. They have to pay for their room for the night, food, and keep up their appearance to look appealing to the johns. That puts them more at risk.”

Moore says most know the risk factors of HIV transmission. “All of that is out the window when they need to survive.”

Moore’s survival in her youth didn’t require sex, she says. And she’s HIV-negative, despite being “outed” in a magazine as one of the most “amazing HIV-positive people of 2016.”
“They never talked to me before they wrote the article,” Moore says, rolling her eyes. “I saw it in my Facebook inbox. I didn’t tell them to correct it, because I guess I was happy getting accolades for the work I do.”

Then Moore started hearing that friends were upset because she never disclosed her HIV status.

“They were saying ‘I wish Chandi would have told me because I wouldn’t have treated her differently.’”

So Moore made a Facebook post to correct the record, which ended up offending people who were positive.

“They said, ‘Why did you have to say you’re negative? There’s nothing wrong with being positive.’’” The fact that she got flack from both sides Moore attributes to the stigma still surrounding HIV.

All of her work in HIV education and outreach, though maybe not the public HIV misdiagnosis, could have happened without I Am Cait. But Moore says she’s glad the show gave her a bigger platform for the issues she was already talking about.

One of the newer issues is reforming HIV criminalization laws.

HIV decriminalization advocate
“HIV criminalization is very intricate and sometimes misunderstood at first even by the highly educated,” Moore says.

“Because HIV affects marginalized populations, particularly gay, African-American, poor, drug users, and sex workers, it is a uniquely stigmatized disease. Once people learn the facts about the current state of HIV and what these laws do, most people understand that reforming the laws are actually key to ending the AIDS epidemic.”

In 1990 the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act, required states to pass criminal laws (if none existed) to prosecute any person who knowingly exposed anyone to HIV. Thirty-two states in the U.S. still have HIV criminal laws on the books. Eleven states can send people living with HIV to prison for behaviors that pose no risk of transmission.

Moore’s first effort as ETAF ambassador is to encourage lawmakers to co-sponsor the latest iteration of the bill written by Congresswoman Barbara Lee (D-CA) [A&U, October 2012], the Repeal HIV Discrimination Act, which encourages states to review and reform statutes that can criminalize people living with HIV.

“These laws that criminalize people using their HIV status are based on outdated science and discourage people from getting tested,” Moore says.

Moore points to other laws she says are outdated, like felony solicitation enforcement, which disproportionately impacts transgender women of color.

She says social media is one of the key ways she’s advocating for change, but being an ambassador for ETAF has allowed her to use her voice in other platforms.

“Fighting for those trans and gender non-conforming, non-binary and queer youth who feel that they have no voice gives me the drive to do all I can.”

Re-connecting
As for Moore’s relationship with her family, she tells me it’s never been better.

“It took us a long time to get there. My mom came on the show and had a conversation with Caitlyn. People stop me on the streets and tell me to thank my mom for doing that.”
Ever the helper, when she left her family in the early nineties, her concern was less for herself than for them.

“I worried that it would be awkward and embarrassing for my family to explain to others [that I was trans]. I thought that staying away from them was the best thing.”

Moore uses her experience to advise trans youth and young adults to “leave the door open a bit” with family. “I tell them that their families may not grasp everything right now. But give them time to be reintroduced to the person that you’ve become. My mom didn’t give birth to Chandelier. She needed time to know how to love Chandelier.”

Make-Up and Hair by Sir Tony: www.beautybysirtony.com.
Gown by Tony Iniguez Manaz: www.facebook.com/IniguezTony.
Nails: INAILS. Manicurist: Vanessa Cun.
Studio: Apex Photo Studios www.apexphotostudios.com.
Elizabeth Taylor’s red ribbon worn by Chandi Moore, courtesy of The Elizabeth Taylor AIDS Foundation.

Sean Black photographed Jenna Ortega for the May cover story. Follow him on Twitter and Instagram.

Larry Buhl is a radio news reporter, screenwriter, and novelist living in Los Angeles. He interviewed actress Jenna Ortega for the May cover story. Follow him on Twitter @LarryBuhl.

Superstar Status, Humanitarian Heart
Gloria Estefan shares with A&U’s Dann Dulin how she pushed on the limits of modern medicine, her belief in the power of positive thinking, and her prescription for HIV prevention for the Gen Y and Latin Communities.

Gloria Estefan is no Diva. Though encircled by her lively entourage, including a hair stylist, makeup artist, personal assistants, and a film crew, as soon as her eye catches me entering her Beverly Hills Hotel cabana, she abruptly tears herself away. Bounding toward me, Gloria extends her hand and says warmly, “Hi, so very nice to meet you. I’m sorry that I’m running late.” She invites me to the private terrace where she will conduct two short TV interviews. Before the cameras roll, Estefan is concerned that I have a seat. She’s friendly and gracious to everyone. Watching Gloria during the tapings, she radiates honesty, humility, intelligence, and passion. One interviewer even asks her to repeat her answers directly in Spanish, and Gloria changes gears with ease and composure. Afterwards, I touch her shoulder and say, “Now you can relax?” thinking she had to be “on” for the camera. Surprised by my comment, she politely, yet assuredly responds matter-of-factly, “Oh, no. I am relaxed.” Gloria?s a no-bull kind of woman—secure and comfortable in her own skin.

As I set up for the interview in the living room of her lavish Mediterranean-style bungalow, I flashback to November 1999 when I first contacted her for an interview. It’s been a long road, which included three polite and thoughtful rejection letters from her longtime manager due to scheduling conflicts. Finally, just a month ago, an interview date was set in Miami (her home)—airline tickets purchased, etc.—but several days prior to my departure, Gloria had to cancel. Feeling bad about it, Gloria offered to pay for my flight and invited me to partake in an upcoming “media day,” to promote her long awaited, personal album, Unwrapped. Unfortunately, I developed an infected tooth and couldn’t accept! Weeks later, her friendly and efficient assistant, Zeida, called and said excitedly, “Gloria’s going to be in L.A. for a few days, can you see her then?!” Here I am.

As I collect my thoughts, Gloria walks in from the terrace and sits down next to me on the large comfy sofa. Behind us stands an extraordinarily huge floral arrangement set in a faux Romanesque ceramic urn, the kind you usually see in the lobby of a five-star hotel. Gloria is clad in a casually elegant outfit—a long, black skirt with four-inch black boots, and a cobalt blue long-sleeve t-shirt. Her beautiful flowing locks are in ringlets, bouncy and shiny. There is an unusual motif on the shirt, and she later explains that it was designed by Carlos Betancourt (who also created the artwork for Unwrapped) and is the Taino symbol, which represents Cuban Indians. At forty-six, Gloria has a youthful glow, a spirited personality, and is poised and centered. And yes, she is short!

The five-time Grammy Award winning singer, songwriter, and actress (1999’s Music of the Heart with Meryl Streep), Estefan has been an AIDS activist from the start, participating in such benefits as LIFEbeat’s Beat Goes On II, and the New York Toys ‘R’ Us Event (to help HIV-positive kids, and babies affected by crack cocaine). She has participated in the Miami AIDS Walk, and has shot several PSAs. Gloria and her husband of twenty-five years, Emilio, are co-chairs of Miami?s Community Alliance Against AIDS, which provides care to people with HIV and AIDS, and educates youth about prevention. Her other humanitarian interests include anti-violence campaigns, arts education, child welfare, American Red Cross, United Way, and paralysis research (she is chairwoman for the Miami Project to Cure Paralysis). In 1992, the Estefans staged a concert that raised $3 million to help South Florida residents who were devastated by Hurricane Andrew.

“I’ve lost a lot of friends to AIDS. It?s been tough. We do as much as we can,” she says demurely then adds, “When a hospital needed a specific machine for the Pediatric AIDS unit, my foundation bought one.” Since 1997, The Gloria Estefan Foundation reaches out to those who struggle outside the safeguards of society by promoting education, good health, and cultural development. “It’s important to keep talking about AIDS. What happens is that with new medications extending life, young people tend to forget the dangers and they are loose on protection. Miami’s Community Alliance Against AIDS keeps awareness out there. It?s so important.”

Gloria practices what she preaches. At home, she maintains open lines of communication with her children, Emily, nine, and her son, Nayib, twenty-three, a filmmaker. Nayib recently completed a documentary of his mother putting together her CD, Unwrapped—a musical photo album of her life that was inspired by the five-year hiatus from her career in order to hang with her family. (For the first time in all of her twenty-two albums, Gloria wears the producer’s hat. She wrote most of the songs and the introspective soulful/pop CD features duets with Stevie Wonder and Chrissie Hynde.) “When Magic Johnson came out, we were in Australia and Nayib was about eleven. He started asking questions about AIDS, so I took the opportunity to talk to him about condoms. We had already had the talk about sex so that was already under the belt. After the conversation, I went to take a shower. I guess he had been a little embarrassed to ask more questions then, so he sat on the toilet, like being in a confessional, and said, ‘Mom, you said to ask you more questions?’ And then he laid into me with questions like you would not believe. I was sweatin’ there in the shower!” she exclaims, recalling the incident.

“But I’ve always been very honest and normal about these things because it’s important. I said to him, “‘Fatherhood is a responsibility of yours—don’t ever leave it up to only the girl. Because regardless of whether you love this woman or not, that baby is going to be yours and you’re gonna have to take care of it. It’s going to be your family for the rest of your life.'”

Along with pregnancy, Gloria made sure that her son understood that disease can also be a by-product of an intimate relationship. “If you don’t take care of yourself on a wild night—you’ve had a couple of drinks, you’re not worried about anything—that night can come back to haunt you. And you will have to deal with it. It’s a choice you make. It’s always a choice. Don’t ever blame it on anything else, like, the liquor, a drug, that night, another person. No. You have to make the choice before you get into that situation,” she emphasizes.

At that moment, as if on cue, Emily and Emilio enter, laden with packages, apparently returning from a shopping spree. Gloria sweetly shouts “hi” to Emily and informs Emilio, “We’re doing an interview.” An enthusiastic Emily darts toward Gloria to show the boxed shoes they bought for her Las Vegas appearance (Gloria replaced Celine Dion for one week in October), but daddy sweeps Emily along. “I can’t wait to see them,” Gloria asserts. “You’ll show me right when I’m done. All right, baby?” Emilio apologizes for interrupting, then he and Emily depart. “She’s so good. She’s really a joy,” Gloria boasts, as she scoots forward on the sofa. (Gloria wrote the song You for her daughter, which is on the new album.) “AIDS or sex hasn’t come up yet. Believe me, once she has any curiosity about it, I will most definitely deal with her as well. She’s very mature and responsible, so I know that that conversation will go a long way. I think women tend to grow up a little faster.”

Cuban-born and Miami-raised, Glorita (as her dad called her) was just two-and-a-half when her mother and father fled Cuba on one of the last freedom flights. Shortly afterwards, her father, Jose Fajardo, returned to Cuba as a freedom fighter in the Bay of Pigs invasion. He was captured and jailed in Havana. After his release, he returned to Miami, enlisted in the American Armed Forces and fought in Vietnam. After the war, Jose became seriously ill from the effects of Agent Orange, and was confined to a wheelchair.Gloria, eleven at the time, took care of her ailing father, even picking him up when he failed to remember that he couldn’t walk. She also looked after her younger sister, Rebecca, while her mother taught elementary school.

Music was Gloria’s escape, and singing in her bedroom kept her sane. Music was a staple in her life. Even as a baby, her mother would sing to her as she changed her diapers. Gloria’s father was later hospitalized and diagnosed with multiple sclerosis. Gloria was devastated. In 1978, Gloria graduated summa cum laude from University of Miami with a major in psych, and married Cuban-born bandleader, Emilio, whom she met several years prior at a wedding where he was playing. Emilio coaxed a shy Gloria to join his band, The Miami Sound Machine (formerly called the Miami Latin Boys but renamed after she joined), pushed her to center stage, and boosted her confidence (think Karen Carpenter, who is also one of Gloria’s all time favorite singers, hiding behind those drums). In another interview, upon meeting Gloria, Emilio has said, “She was sad because of her father. The only moments I saw her happy was when she sang. Her eyes would come alive.” In 1980, after years of sickness, Gloria’s father died at home. Near the end of his life, he barely recognized the daughter who cared for him.That same year, Nayib was born, and the Miami Sound Machine signed their first record contract.

In 1990, at the peak of her career, a road accident nearly claimed Gloria’s life. Her tour bus collided with a semitrailer on a snowy Pennsylvania highway. She was paralyzed from her injuries. It was an arduous road to recovery, including an operation to place two steel rods into her spine, and a yearlong agonizing physical rehabilitation.

Throughout her recovery, memories of her father flooded Gloria’s mind and of her experiences having a terminally ill person in the home. Even though she believes that she gained strength from that experience and that strength aided her in her own recovery, Gloria didn’t want to burden her own family. Her prognosis was very bad. The doctor confided to her: “This is definitely what medicine says, but as a human being, I’m now going to tell you that I think it’s up to you. Depending what you decide will be the outcome.” Gloria was determined to do the maximum in terms of healing to regain her independence and to save her family the pain of caring for her. She tried practically everything, including alternative medicine to heal herself. She took herbs, received massages, meditated, ate healthy, and so on. “I’m a very independent person, and people had to sit me up, lay me down, turn me, and it was like, how am I going to get through this?! Thanks to my husband, who was incredible. He would have to walk me, since I couldn’t walk by myself. And I couldn’t sleep for more than forty-five minutes because the pain was really bad. Emilio would be up every several hours to comfort me,” Gloria says reverently, then declares, “I almost threw a party four months later when I put my underwear on myself. I wanted to celebrate!”

Estefan spent five to six hours a day in rehab. “I would talk to myself daily into getting up and moving those extra five feet because the next day it’d be harder. It’s a process. It’s not easy. You just stick with it. You get down, you cry. It comes to the point where you say, Okay, I got it out, I cried, but now I’ve got to go forward. You have to move ahead,” attests Gloria, “How can I make this better? You take it one day at a time.” She thinks a moment and with a measure of self-assurance continues: “Had it worked out another way, then I would have played sports in a wheelchair or have done my writing. I would have kept going. I’m a person that always looks forward. But I tried as hard as I could.”

But Gloria triumphed. Today, her doctor is dumbfounded. “My doctor still believes it was miraculous, since they said I?d never walk again. He says, ‘I operated on you! I saw what was there.’ Two girls were in rehab with me who had the exact same thing wrong with them, and they are still in wheelchairs. All my life I had that fear because of my dad being in a wheelchair. But I always had the feeling it’s going be okay, plus I’ve been a little physic here and there. That?s all I kept thinking ‘I’m gonna be fine. It has to be.'”

What advice would she give someone who is facing a medical challenge? “First of all, medicine is in its infancy, so you take it with a grain of salt. Thoughts create reality and we have amazing powers to heal ourselves. Every seven years, every single cell in your body is totally new and different. What does that mean? With meditation and conscious awareness you can steer yourself. You can affect your health in a negative way or in a positive way. If you’re not going to be smart enough to say I’m tired, I need to rest, your body will zap you down and make you sick. It’ll give you what you need,” explains Gloria resting her head on her hand, with an elbow on her knee. “If you’re ill, you go inwards—it doesn’t mean you don’t take medicine, you do—but you can accelerate the healing. Sometimes if you are strong enough in your thought processes, you can replace a lot of medications. Don’t fall into the trap of believing what they tell you is the status quo.”

“I learned that we all have amazing discipline, each of us, whether we know it or not. I learned to have patience with myself, and about the incredible power of prayer. I could feel it around me. The response was worldwide. I received tens of thousands of cards and letters,” she says elatedly. “People were on their knees praying in the lobby of the hospital. I could feel it as a physical energy around me, and I sucked it in. I meditated and used it in my recuperation. I’m a cynic; I need some kind of proof. So many people wanted to help. I saw the goodness in people. The outpouring of love was great. It?s as close as you could be to seeing your own funeral, quite honestly. And I read every letter and card. It was beautiful.”

The effects of this unfortunate event are evident today. “It’s very hard to stress me out, quite honestly. It’s all relative,” she says sternly with commitment. “When I compare any problem I may have—career or life—to starting over from scratch, what it took to get past something like that, it doesn’t mean anything. It doesn’t. I think, Why am I going to get upset about this little problem?! This is nuts. This is nothing. I can walk, I can talk, get up and get water. I can run. I can make music. I wouldn’t want to go through it again,” she says with deadpan humor then reveals in a solemn mode, “but I would not change it.”

Death has clouded Gloria’s life many times over the years. How does she deal with the pain of loss? “I feel that death is a transition and you are simply growing into a different experience. We may not be able to communicate with the tuning in [device] that we have right now, though some people can and psychics too can pick it up. It’s like tuning in a radio, if you don’t have a radio that can tune into a certain station, you won’t pick up the information. When people pass on to a different realm, it’s a growing experience, an evolution,” she states. “I focus and say, This person is out of life temporarily but at some point we’ll meet up again. I really do believe that. It’s not the end. For them it’s a new beginning, and somehow you will meet up again in a different place.”

To Gloria, one’s concept of an afterlife depends upon the belief system or religion in which one was raised. “Like I said before, thoughts create reality. After death, you go into a different experience perhaps you are still in this physical cycle and you may come back; perhaps you don’t. I certainly don’t know. To me, our soul is like a tree,” she explains. “The roots are having a different experience than the leaves but it’s still a part of that tree. Perhaps this life is one leaf on that tree, and simultaneously you’re having many experiences as part of that soul. And your soul memory is attached to God and everything. Time is just an illusion; in fact, there’s a song on the current album about time (Time Waits). Time could be existing parallel, or whatever.” She throws her hands up.

Another song, a #1 hit, Coming Out of the Dark from her 1991 album, Into The Light, co-written by Gloria, Emilio, and Jon Secada (A&U December 2000) was meaningful to many PWAs and others too. Estefan sang this ballad on The American Music Awards, her first appearance since her accident:

Though life is never easy the rest in unknown
Up to now for me it’s been hands against stone
Spent each and every moment
Searching for what to believe
Coming out of the dark, I finally see the light now
It’s shinning on me

Coming out of the dark, I know the love that saved me
You’re sharing with me.

“A lot of my seriously ill friends listened to it and it gave them strength,” she says.

“For me, music can change things. I always consciously think about that when I’m writing. In some way, I want to empower the person that’s listening or let them express themselves emotionally because that’s what music did for me when I couldn’t do it. This is the best thing about what I do.” Gloria pauses to think of more AIDS-related songs that she has been associated with. “Oh, several years ago, Liza [Minnelli] called me at home. She was at the studio recording a song for an AIDS charity. She asked me to write Spanish lyrics for it. I did, talked her through pronunciation, and she recorded it on the spot. I have a Spanish heart, and an American head,” she says proudly.

As a role model for Latinos, and a trailblazer for performers like Christina Aguilera, Ricky Martin, Marc Anthony, and Shakira, Estfan has been instrumental in introducing Latin music to a worldwide audience. She has successfully promoted AIDS awareness in the Latino community, as well. “I’ve done PSAs in Spanish where I talk about HIV and advise the parents to talk to their kids. Education is the number tool in the fight against AIDS, and we need to start early so that this awareness becomes a part of their lifestyle.”

Unfortunately, there has been a rise of HIV infection in the Latin community. How can she address this? “It’s probably because we don’t like to talk about it,” she says in a straightforward manner. “Hispanics, they love having relationships! They’re sensual; they’re sexual but talking about it, that’s tough. Parents don’t talk to their kids early enough. A lot of guys venture out and don’t let their families know what they’re involved in, so they can’t talk to them even if they wanted to,” she notes. “Then there’s a lot of embarrassment about it. It’s a culture thing. Information is a big part of AIDS prevention, and the macho mentality gets in the way. Information is the only tool. Fortunately, as generations go by, we tend to get more into the melting pot and become more apart of the American culture thus weakening that macho mentality. People like us, who are bicultural and bilingual, we deal with our kids differently than our parents did. My mother would have never talked to me about any of that. She’s still embarrassed about it. I kid her like crazy and make her very uncomfortable.”

Yikes, the interview is coming to a close, and I feel as though I didn?t get enough of Gloria Estefan. It?s nearly 10 p.m, and although her day has included an appearance on The Tonight Show with Jay Leno and numerous other interviews—even now a wardrobe fitting beckons her in another room—Gloria gently escorts me to the door. “Hopefully they’ll soon be a cure. And once there is a cure you will see cures for other diseases like multiple sclerosis, Parkinson’s, Alzheimer’s—anything that is neuron-related.” Because of her celebrity, Gloria feels it is her responsibility to use the media attention for the public good. She uses her platform wisely. Bidding farewell with gratitude, Gloria sums up: “It’s imperative that we continue the dialogue about AIDS, especially with the younger generation.”

GLORIOUS GLORIA

Gloria is preserved (her likeness) both in wax, and in concrete: at London’s Madame Tussaud’s, and on the Hollywood Walk of Fame.

Where is you favorite place to disappear to? Where do you go to recharge your batteries?

Our beach house. It’s very private. It’s a couple of hours north of Miami, right on the Treasure Coast. We found it about a year and an half ago. The whole family meets there and spends quality time with each other. We’re either at the beach or in the pool all day. [She ponders.] And we have great dinners together!

When they make a movie of your life, whom would you like to play Gloria Estefan?

I hope I’m not around. I’ll be dead, so who cares?!

Out of the many people you have met, is there one in particular who stands out who impressed you or inspired you the most?

[She thinks.] That?s difficult. Meryl Streep.

What would you most like to change about yourself?

I wouldn’t mind having a little more torso. Taller, maybe, even though I have long legs. Not that I feel short but apparently to everyone I go by, they say, ?She?s so tiny! She?s so tiny!?

On Connie Francis with whom she is co-writing a screenplay about Connie’s life, and who also will portray her in the movie:

Connie is a brilliant lady—so funny and so much to offer. I want her in the Rock and Roll Hall of Fame. I?ve been working with her for two years now. She had the best contracts in Hollywood at that time. What an amazing businesswoman, and an amazing person.

Gloria gives her reaction to these people who have touched her life

Ricky Martin: sexy, and very spiritual
Mandy Moore: so cute, young, fresh, smart
Enrique Iglesias: very loving, warm, and a flirt
Shakira: incredible energy, talented writer, consummate performer
Celia Cruz: the most remarkable human being I?ve ever met, quite honestly
Marc Anthony: sexy, and a bit shy

Name one word to describe Gloria Estefan: Honest.

Dann Dulin is Senior Editor of A&U.

December 2003

A Warrior’s Gift
Marine War Veteran Corporal Chris Van Etten Survives a Tragic Situation In Afghanistan and Now Serves As An Inspiration for Everyone Who Feels Less-Than
by Dann Dulin

Photographed exclusively for A&U by Sean Black

This story about Chris Van Etten, the Jockey model for the “Show ’Em What’s Underneath” campaign, almost didn’t happen.

Our interview had been set for nearly two months. I intended to drive to see Chris at his new home in Temecula, California, having recently moved there from San Diego. He had intended to drive to me in Los Angeles—about a two-hour jaunt. Fortunately, on the day of our meeting, I awoke to find an email from the veteran.

Chris apologized that he had to cancel. “My prosthetic keeps giving me issues,” he explained. “Details are a little personal but it’s come to the point where I’m not able to keep it on for very long.” And he ended the email with “…but I can’t comfortably make it up there.” What?! I didn’t quite understand at first. Then I realized that he was planning on driving up to L.A.!

Had Chris’s leg not been bothering him, both of us would have been passing one another on the I-15 freeway, ending up at each other’s place, knocking on the door, and getting no answer! Fate interceded.

Living in a large apartment complex not far from the highway, I’m greeted by a “Hello” welcome mat at the front door. A petite lone Eucalyptus crenulata tree stands to the side of the entrance, and just beyond, cars whiz by on the freeway. Samantha, his fiancé, opens the eight-paneled wooden door and Chris is close at hand. We settle into the cozy living room, while the series The Office is frozen on their television, which they were viewing on Netflix prior to my arrival. Directly beside him, lying on the sandalwood-colored leather sofa is Harley, his military dog who served with him in Afghanistan.

The twenty-six year old Illinois native comes from a military family. His mother and father, who met in the Air Force, are both retired. At eighteen, Van Etten (pronounced ET-ten, with accent on first syllable) enlisted in July 2009. He took the standard medical exams and submitted a blood specimen. This was the first time he was tested for HIV. He wasn’t worried because “wearing protection was always a prerequisite.” Though Chris is in a committed relationship, he still gets tested yearly.

After passing the exam, Chris was sent off to boot camp and then assigned to 1st Battalion 7th Marines Charlie Company, better known as “Suicide Charley.” Deployed to Afghanistan in June 2012, he was conducting dismounted patrol with his unit one night when his squad-mate and best friend stepped on an IED (improvised explosive device). Chris and his buddies rushed to his aid. As they were lifting his body, Chris stepped on another IED. He lost both legs. His friend died.

“TJ [Baune] was an exemplar to all of us,” he says. “Hands down one of the best people and Marines that I’ve ever met.” Chris’s already low register deepens and there’s a hint of moisture in his eyes.

What got me through, and I know it sounds corny, but every day I told myself that it will get better. Every day I would look at myself in the mirror, force myself to smile and tell myself in the mirror that it was going to get better.

Chris spent a year in intensive rehabilitation, though he was walking with prosthetics within a couple of months. It was demanding and stressful, but he learned how to walk again. It was a greater challenge to overcome the mental anguish. Battered by depression, insomnia, and anxiety, Chris also had to wean himself off painkillers.

Van Etten was saved by the gym.

“I had low points during rehab, but when I got out, that’s when I really hit my lowest, trying to figure out, ‘What now?!’” It took time. What got him through this period were his workouts. It was therapy and the gym that became his friends. Reentering civilian life he concluded, “It would be pitiful of me to try and sit here and pretend like my life sucks when there’s people out there that are missing more limbs; people out there who don’t have a husband or a son or a brother.”

Pressing further, Chris reveals, “What got me through, and I know it sounds corny, but every day I told myself that it will get better. Every day I would look at myself in the mirror, force myself to smile and tell myself in the mirror that it was going to get better. Whether you believe it or not, telling yourself supports that thought,” he urges, boasting, “and it did get better.” His success can be boiled down to plain ol’ grit and willpower. Chris refused to be a victim.

Nestled back into the sofa, Chris wears his favorite get-up, T-shirt and shorts. His black shirt sports a logo “Straight Legless Clothing” and his shorts are khaki. He takes off his prosthetic and explains where it rubs into his leg. He leaves it off for the duration of our talk. Chris is affable, straightforward, and genuine, and looks like he just walked in after cutting wood for the fire.

As he speaks, I gaze at Chris—and swoon. Not for the obvious reason, that Chris Van Etten has striking looks and a gripping presence, but due to his daunting courage, old-soul wisdom, life-changing inspiration, and unyielding drive to care for others. The soldier has a unique combination of George Bailey vulnerability with Matthew Bourne strength.

Van Etten’s charitable work began in high school, when he participated in an AIDS Walk. He’s currently active with the Semper Fi Fund (an all-around support organization for Vets and their families), Joshua Chamberlain Society (a long-term multifaceted support grassroots charity for veterans), and Homes For Our Troops (privately funded nonprofit that builds mortgage-free homes for Vets). “These three organizations have gone way out of their way to help me,” he attests in a somber manner, “and I try to go out of my way to help them give back a little of what they gave me.”

Chris initially learned about the AIDS epidemic in middle school. He was in seventh grade health class. The school arranged to have an HIV-positive speaker come in and talk to the students. “He talked about what HIV does to your body and all the pills you have to take to keep yourself from dying,” clarifies Chris, in his measured cadence diction. “It made such an impact on me by seeing firsthand a person who had the disease.”

Samantha takes note and in a disappointed tone, says, “I never had a keynote speaker.” (She nods towards Chris to make sure she’s not interrupting. Chris replies, “No, it’s fine.”) She quickly whisks her long blonde tresses away from her face. “I think when you have someone who is living this disease, people listen more and respond more. That would have made a huge difference in my school and community.”

“Hands down, listening to him really made a huge impression on me about the epidemic,” agrees Chris unwavering. “He made me understand that this is the risk one takes by not having protected sex. This got through to me much more than watching it on PowerPoint or by a teacher’s slideshow. This man was a living example of the disease,” he says. “That’s powerful.”

Samantha, his fiancé, affirms. “You see that this person is just a human being. It’s not like, you get AIDS and you become a monster. You’re still a person and you’re living your life.” She peers over at Chris. “After all these years you remember this speaker?” They both snicker in agreement since Chris usually has a “horrible memory.” Sam playfully scoffs, “You don’t remember anything!” Chris concurs, “I can’t tell you what my teachers looked like, but I can describe that guy.”

When Chris became sexually active, he remembered the speaker back in middle school and took precautions. “AIDS is not something you should live in fear of, but it’s something people should take into consideration whenever they’re having sex,” he says. Even after a cure is found, protection is still going to matter, due to pregnancy and STDs. Is one night with someone that you don’t want to spend the rest of your life with worth a lifetime of battling an illness? Sex should be taken seriously.”

We discuss the high infection rates of his generation. “Sex should not be made out to be this scary monster,” the lacrosse player, marathoner, and skier insists. “That puts high schoolers off. These kids should be informed about STDs and taught how to protect themselves. People will be more receptive to this than to abstain from sex.” In November 2016, Time magazine reported that STDs reached record highs, as reported by federal data: “Cases of chlamydia, gonorrhea and syphilis all rose from 2014 to 2015, for a second year in a row.”

Harley pushes her hind paws into Chris’s thighs. She seems to be dreaming. The yellow Labrador and golden retriever mix does not leave his side during our time together.

Chris goes on. “I remember when I was younger, there was such stigma surrounding the epidemic. Even while I was still in my negative youthful head, I realized that judging people was not the way to go,” he says cocksure. “But attitudes have changed. It’s really nice to see how accepting people have become in the last decade. We’re all different but we…are…all… human.”

“It’s human nature to fear what we don’t know,” Chris says. “You don’t have to understand how somebody else lives, unless the way they live is physically harming you. You don’t have to put your nose in other people’s business. Let people live the life they want to live!”

Sam jumps in, “I feel like in our [Millennial] generation we were taught about HIV and then we moved on. It was explained as an STD and that was all.” Chris reflects, “It was taught with empathy. In the beginning, AIDS was made to look more like a monster where as now it’s made to look more like an obstacle where we need to help people overcome it.”

Chris believes that social media has helped alleviate some of the stigma through greater awareness about alternative lifestyles, and by dissemination of rapid information about the epidemic and other STDs.

Van Etten has also encountered social stigma. He tends to center more on the positive aspects of his life. “When I realize people are talking about me I hope it’s more curiosity than anything else. I tell everyone, ‘Don’t be afraid to come up and ask me.’ That’s the only way a person is going to learn,” he says. “When they do, I try and show them that it’s not something I’m uncomfortable with. One way to get rid of a stigma is to get educated.”

Chris likes to refer to himself as “handi-capable.”

“When people look at me, I want them to always think of something inspiring and positive. I don’t want them to think, ‘Here’s this guy who went through all that and he’s let the anger and misery take over.’”

Chris has done a lot of soul searching over the last few years. “I was an angry person when I was growing up,” he offers. “I wasn’t the type of person who would lash out. I just stop caring. I’d shut down. After I was injured, I realized how delicate life was and I almost left this world being an angry person. I didn’t want that to happen.” He props his leg up on the prosthetic, resting it atop. “I don’t think my life would have taken this direction had it not been for the fact that I was injured. In a weird way…it was a gift.” This writer has heard this all too often of people who have been infected with HIV.

Chris acquired his insight and courage from his parents, especially his mother. “My parents are the big reason why I am who I am,” he expresses wholeheartedly, petting Harley.

Chris’s mother had Stage Three breast cancer when he was in high school. It was aggressive, but localized, and the doctors caught it before it could spread. The chemo treatments ate away at her body. “It was miserable,” he recounts, “but she came out of it a stronger person. I could tell that she had a new found view on life. She was always an amazing person, but after that, she was really this absolutely amazing positive person. Starting a conversation with someone, she could make that person be her best friend in five minutes.”

Chris had a role model to help him through his tumultuous times after the injury. Indeed, his mother pitched in and aided him all through his rehabilitation. She relocated to San Diego, leaving Chris’s father and his two brothers, Clint and Cameron, who were both in school back in Illinois. “My brothers were fairly young. They were entering a significant time in their lives when she chose to come out…,” he points out in a humble timbre.

His mother was very much a part of his recovery. “Going through what I did, I tried to use her constant drive too,” interjects Chris, Sam shaking her head in accord. “My dad is a tough guy and he can intimidate others, but hands down he’s one of my best friends.”

Chris and his mom are currently writing a book. Sam is eager to reveal the premise. “It’s a cool concept. It’s about what he’s going through and what she’s going through at the same time.” Chris sums up, “One chapter is my story on a certain subject and the next chapter will be about her experience.” I ask about the title, but he doesn’t want to jinx the book by revealing too much.

Harley snuggles closer to Chris, laying her head on his leg. Observing the interaction between Chris and Harley, one can easily see their titanic bond. Later, when asked to name his favorite moment of all time, he answers, “When I got Harley back.” And that was not a simple task.

“It’s not easy to acquire the dog you served with in the military,” according to Vietnam Vet, Ed Reeves, who recently published his captivating story about this subject, My Search for my Vietnam Scout Dog Prince. It usually takes a year and a half of red tape to get the dog you served with, but in Chris’s case, it took five months to get Harley, due in part to Van Etten’s family friends. Ed Reeves was not that fortunate. Harley is Chris’s pride and joy.

Samantha, of course, is another form of bliss. In 2014, Chris and Sam met in his hometown’s Gold’s Gym following Chris’s rehab. (At one point, I ask Chris to show me pictures of his family. When I look at his mother, interestingly enough, I find that there’s a definite similarity in looks between Sam and Chris’s mom.) Sam is a trainer and noticed Chris first. She spotted him doing pull-ups then asked a friend who worked at the desk who this guy was. The friend said, “Oh, that’s Chris Van Etten, I went to high school with him.” Samantha commented to her, “He’s going to be my boyfriend one day.” In a few months, sure enough! Sam messaged Chris first saying, “I think we should hang out.” They did, and the couple tied the knot on April Fool’s Day 2017, in Oceanside, California.

They are currently having a house built through Homes For Our Troops. The property will not just be wheelchair-accessible, it’s a home designed for a wheelchair. “It’s exciting,” gushes Chris with relish. The house should be ready later this year.

Their passion is to open a gym, which will offer programs for those who are overcoming a physical injury or disability, whether it’s those who have had major surgery or paraplegics or amputees. They can get back into the gym and workout safely with trained instructors. The first one will open in Temecula. “It’s not so much about building a business, but a good gym that people are happy with. We have the whole design concept but not the name yet,” remarks Chris. Do I hear Inner Power Gym or The Warrior’s Gym? Van Etten currently attends college, taking business classes online.

I like public speaking and it’s a great way to share my story. I learned that with my injury, and what happened to me, that I would like to inspire others to be appreciative of their life.

Chris is also passionate about motivational speaking, for which Jockey has afforded him a platform. On the 4th of July last year, promoting the Jockey campaign, he appeared on Today’s “Kathie Lee and Hoda,” then city-by-city appeared on their local news or morning show. Chris plans on continuing speaking around the country once he receives his business degree.

“I’m much better speaking to a group of people than I am one-on-one,” he confesses modestly. Early on, his nervousness was marginally noticeable, but otherwise the Marine is cool, calm, and collected. His demeanor is disarming and engaging. “I like public speaking and it’s a great way to share my story. I learned that with my injury, and what happened to me, that I would like to inspire others to be appreciative of their life.” Having a rich smooth voice, when this charismatic Vet speaks, one listens.

Chris knows there will be more Vets who will go through similar ordeals. “They will get out of the service and say, ‘What now?!’ I always tell them to find something that they can dive into, something to put all their passion into and all their concentration into so they’re not sitting around letting their [negative] thoughts get the better of them. They’re working toward…something.” He changes position and leans in. “I direct this to anyone who is faced with powerful challenges, such as HIV…,” he blurts with gusto, repeating that working out was his focus, which saved his life.

From the gym, Chris springboarded into modeling. A woman saw him one day while he was working out and was so inspired that she posted it to her Facebook page, “I was so awed by this amputee working out at the gym today….” Chris saw it, which generated the idea for him of a better way to reach people—through ads. In 2013 he posed for some “small-time” gigs. It was a friend who told Chris that Jockey was looking for models.

“I liked what they were trying to get across. Their message is about showing strength and perseverance through all odds,” Chris specifies, his face austere. “The main idea of the campaign is there’s a part of everyone that the public doesn’t see, and to show what’s underneath, what’s great about you. I wanted to help promote that idea. Everyday people doing not so everyday things, trying to better the world in one way or another.”

Jockey liked Chris’s story, too. They asked if he would be interested in joining the campaign. He told them, “Hell, yes! I’d love to a part of this. It’s awesome.” He pauses, tousles his hair, and parts his Mick Jagger lips into a tender smile. “It’s been a crazy rollercoaster ride—and I’ve loved every second of it!” he rhapsodizes. “So many people have been responsive in a positive light and everybody I’ve spoken with has been motivated by the message.” The campaign was launched June 2016.

Chris is currently featured in celebrated photographer Michael Stokes’ extraordinary high-powered trendsetting coffee table book, Always Loyal (published 2015). The book showcases wounded war vets in nearly naked glory in intimate poses, celebrating their lost limbs. (The photographer donated $10,000 from the sale of his book to the Semper Fi Fund.) Stokes was the first person Chris ever shot with, back in 2013.

Chris cares about others and he cares about this country. His whole family celebrates freedom. The day before I met them, Chris and Sam drove to San Diego to send off his nineteen-year-old brother, Cameron, to boot camp.

Queried about being a humanitarian, Chris responds. “It should be everyone’s responsibility to try and better this world. Society is so sucked up on the negatives that we tend to overlook the positives. It should be everyone’s goal to help each other. Do something everyday that gives back, no matter how big or small it is.”

This may sound a bit “Oprah,” but Chris is steadfast. He rises, excusing himself. Samantha and I look over toward Harley. He chomps on a Chewbacca stuffed toy. She says, “Oh, you’ll think this is cool.” She comes over to Harley, lifts up her ear, and displays Harley’s Marine Corp serial number that’s tattooed on her ear. “Everything in the military is numbered, and that’s Harley’s,” Sam explains with a soft, jolly lilt.

Chris returns. He carries a large unwrapped package. It’s the Always Loyal book, which he bestows upon me as a gift. Van Etten sits back down, looks off momentarily, and gently sighs, “Unfortunately, many of my buddies have died, just like many people have died from AIDS and other tragic illnesses. We’re all going to go some…time. Not all of us can be lucky enough to live a full life,” utters Chris, anchored in gratitude, “but as long as I’m here, I’m going to celebrate every day of my life.” His baby blues sparkle.

Dann Dulin interviewed singer/songwriter Siedah Garrett for the February cover story.

Telling Tales
Academy Award-Winning Screenwriter, Director & Activist Dustin Lance Black’s Stories Keep History Alive
by Dann Dulin

Photographed Exclusively for A&U by Sean Black

Dustin Lance Black needs a fix.

He’s in Los Angeles for a few days from his home in London. We arranged a meeting at his West Hollywood hotel. After my arrival, he firmly suggests we go out for some coffee. He inquires about the best place to go and I hesitate, as I’m not familiar with coffeehouses. I recall that I had driven past one on my way to meet him. Together we trek down Holloway Drive in the direct, late-morning sunlight, chatting like two old friends.

I interviewed Lance in 2001 after the release of his first feature indie, The Journey of Jared Price, which he wrote and directed. I was touched and inspired by the story of a gay teen coming to terms with self-discovery.

“It’s really good to see you again,” Lance expounds, as we momentarily take a whiff of a fragrant jasmine bush. “It’s been a generation since we’ve seen each other. A lot has changed in sixteen years….” I interject, “Yes, in your world!” I rattle off some of his achievements: On the Bus (a documentary about gay guys attending Burning Man), Pedro (about the life of Pedro Zamora, who was featured on MTV’s The Real World and died of AIDS-related causes), Big Love (an HBO series), J Edgar (directed by Clint Eastwood)—and now an Oscar (for Milk)!

Smiling modestly, Lance is a trifle surprised at my recall. “How much farther is this place?” he asks, perspiring from the intense sun. I point to the café just ahead on the corner.

When we arrive, Lance places his order and asks if I would like anything. I decline and look for a quiet table, nearly impossible in these lively places. I spot one back in a cozy corner. Moments later, Lance joins me, placing his black java on the table and snuggling back against the window that looks out onto a tree-shaded patio.

“Since we last saw one another, a lot has changed in our world [the LGBT community], including HIV,” Lance specifies, picking up from our earlier conversation. Several months ago, Lance’s seven-part miniseries When We Rise, based on LGBT and AIDS activist Cleve Jones’s memoir [A&U, January 2017], was aired on ABC over four nights.

Black undertook an ambitious task, presenting over forty years of gay history, from the Stonewall riots in 1969 to 2015, when the Supreme Court recognized marriage equality. The series covers the AIDS epidemic and the ensuing medical breakthroughs, the Harvey Milk assassination, ACT UP, and Prop 8. It’s told through a handful of characters and certainly is not a complete history. I mean, over the past fifty years homosexuality has evolved in the public consciousness from a deplorable illness to legal same-gender marriage! Many of the characters in When We Rise, though HIV-positive, survive. The all-star cast includes Guy Pearce, Rachel Griffiths, David Hyde Pierce, Rosie O’Donnell, Rob Reiner, Whoopi Goldberg [A&U, June 2000], Michael Kenneth Williams, and Mary-Louise Parker [A&U, October 1999].

Black was floored when a major network expressed interest in the project. “By airing it on ABC, it means cementing the series in history, lifting it up so more people find it. I wanted it to be accessible,” he remarks. “The big push now is to get it into high schools across the nation. It’s now streaming online at ABC.com.”

A friendly Italian waiter delivers Lance’s egg and Italian ham sandwich to our table.

Black has admirers, as well as naysayers. Some argue that he has taken too much on and left out important events and key people. Critics said it was uneven, too broad, and had the tone of an afterschool special.

But Lance is satisfied with the results. “We need more storytellers and more filmmakers,” he urges, being a bit affected by the negative press. “I’m a white gay man, and we need other people’s stories. Our diversity will come from diverse voices, telling stories from different perspectives. We gather strength by knowing our history.”

Lance says the most common thing he hears from teens and young adults after they watch When We Rise is that they never knew how horrible some parts of the movement had been. They are angry that this history has been hidden from them. “They are very emotional,” he points out.

Black excuses himself to get a refill. A sign above the counter reads, “Good Vibes Only.”

Clothed in his trademark gear, skinny black jeans and a form-fitting light grey sweater, Lance cuts a lean solid figure for his forty-two years. With his clean good looks and skyscraper cheekbones, he could be in a Norman Rockwell illustration or stepping out of the pages of GQ magazine.

In fact, Lance recently signed with Wilhelmina Models, a legendary agency that handles Nick Jonas and Nicki Minaj. He will be representing brands and his objective is to bring more diverse people into ads. “I want to lift up our differences,” he declares. “I find that hopeful and I will continue to do that any way I can.” He takes a hit of caffeine. “I think we are in grave danger if we assimilate. We need to celebrate the magnificence and value of our differences. We solve problems in this world by putting different perspectives on that problem, solving it quicker, better, faster and more permanently. Resist assimilation!”

Reared mainly in San Antonio, Texas, Lance moved to the California central coast at age thirteen with his two brothers (one older, one younger), his mom, and stepdad. His biological father deserted the family. Lance grew up in a military Mormon household.

“I was shy and closeted. I didn’t know there were people like me,” Lance laments. It was in theater that he found freedom. Lance went from high school theater to community theatre and graduated UCLA’s School of Theater, Film and Television in 1996. “Finding the theatre saved my life,” he admits, gazing away, his face resting upon his hand. It was during this period that he discovered Harvey Milk and began honing his writing skills.

Born in 1974, Lance came of age during the boiling era of the epidemic, when being diagnosed could mean death. “If you were positive, you started planning your last moves,” he mutters sullenly, raising an eyebrow. His mom being an immunologist (HIV/AIDS nurse), Black was well versed on safe sex. “We had a conversation about it early on, so I took vigilant care of myself.” During his senior year of high school he was tested for the first time. Two years later, Lance lost a dear friend in Los Angeles.

He got sick and a month later came down with pneumonia. Friends of mine took him to the Free Clinic where they were advised to take him to the emergency room. When they arrived at the ER, a friend went in to fetch help to bring him into the hospital. When he returned to the car, the guy was gone. He was twenty-one. This was a wake-up call for all of us.

“He got sick and a month later came down with pneumonia. Friends of mine took him to the Free Clinic where they were advised to take him to the emergency room. When they arrived at the ER, a friend went in to fetch help to bring him into the hospital. When he returned to the car, the guy was gone. He was twenty-one.” Kaboom! A symphony of chills swirl throughout my body. We sit for a moment in silence until Lance, eyes moist, utters frankly, “This was a wake-up call for all of us.”

“My [theater] mentors would get sick and then usually just vanish,” he says. “Only later did I understand what was going on.” It wasn’t until the late nineties before Lance would encounter hope. He used to frequent this business where he could buy “short-ends,” discarded ends of film stock from major movie companies, that he needed for his films. His contact there was Paul, who over time became thinner and thinner. Lance was concerned. One time he walked in and was confronted with a new employee. “Instead of a skinny guy, there was this jolly chubby guy. I asked about Paul. He replied, ‘Honey, I’m Paul! I’m on meds now and getting better.’ I gave him the biggest hug.” Lance exalts a toothy smile.

“Don’t floss your teeth [and exacerbate your gums to the point of bleeding] before you make-out with somebody because that might be a way to get infected,” recalls Lance of the status quo then. “I was my mother’s son, a very emotional, traditional guy. I didn’t have sex until I was in a relationship. I don’t regret that now. Since my group had lost friends to this disease, there was no question that we wouldn’t use a condom!”

Even so, he would get tested regularly at the Los Angeles Gay and Lesbian Center. “It was free,” he recounts, “so a lot of people were doing it there. I knew I was all right, but it was my new gay duty. For the results you had to wait for about a week. During that time, there was this slow build of anxiety where I would analyze every little thing I had done over the last six months. I started convincing myself that I did something wrong.” He shakes his head back and forth then uses his hand to comb through his rich honey copper hair. “After a week, you’d return to get your results, sit in the waiting room until they called your name, and then go in with a counselor who would reveal your results. If you were negative, they would talk about how to keep yourself testing negative and if you were positive what your next step would be. I thankfully never got a positive result. It was so terrifying.”

At that time there was no effective treatment. “It was very plain to my generation what we needed to do to stay alive and healthy. There was little talk about unprotected sex. It was just taken for granted that a condom would be used. There was no choice!” he pronounces adamantly. “That was a very specific time, in a very specific generation.”

In 2012 Lance’s older brother, Marcus, forty, died of bone cancer. When their father abandoned them, it was Marcus who took over the patriarchal duties and became Lance’s protector, even warding off their first strict stepfather. Lance came out to Marcus in the early 2000s, and Marcus accepted him with open arms. A few years later, Marcus came out to Lance. “When I give speeches now, I usually have something of my brother’s in my pocket and I just think about how he’s holding me as I get up there in front of all those people.”

Two years later, Black’s beloved mother died. He’s currently writing about her in a memoir called Mama’s Boy: The Story of Two Americas. How does he deal with the loss? He replies in a flippant, wounded tone, “I don’t know. Get back with me in a few years.” He stirs his brew and gently plays with the swizzle stick. “It doesn’t get any easier. It feels like a plane went down and all the people I loved are in it.” He pauses. “I have one biological family member left.”

He soothes the grief through service. “I knew I was very different growing up. I had a mom who was paralyzed and she looked incredibly different. She certainly moved differently,” he relates, as his index finger slowly circles the lip of his empty cup. “Scoliosis of the spine drew eyes her way and not in kind ways. I saw how she was treated negatively for her differences. I knew how I’d be treated negatively for my difference.” He sections off a helping of his sandwich and readies to bite, but instead concludes, “You combine the anger and the frustration, along with the empathy, and you get…Activist.”

Cleve Jones, who conceived the AIDS Memorial Quilt, inspires Lance. “I’ve worked with him for a decade. He’s one of the only activists I know who got into this work as a teenager and is still doing it today,” he observes brightly. “You don’t get paid very much. It’s not an easy life, but I hope it’s a rewarding life and at the end of my days I hope I will be happy having spent my time this way.” Lance supports several AIDS organizations, including the Elton John AIDS Foundation, Project Angel Food, and GMHC. He directed a PSA for AIDS Project Los Angeles, with Jeffrey Katzenberg and Sara Gilbert.

Among his other heroes are Larry Kramer (“I don’t always agree with him, but that’s good.”), Diane Jones (“What I admired about her was that I could never get her to use the word, ‘I.’ She only used, ‘we.’”), and Cecilia Chung [A&U, July 2017]. Jones and Chung are both portrayed in When We Rise. “Cecilia was out there fighting for a community that hadn’t even found its footing yet. She already had a steely sense of self worth and pride that inspired others and kept people alive—and gave other’s hope. Cecilia…is…a…visionary. I was so happy to tell part of her story,” he notes. “There’s more to tell.” Today Ms. Chung is on the Presidential Advisory Council on HIV/AIDS and works at the Transgender Law Center.

Lance’s phone vibrates. He answers. It’s Tom (Daley, British Olympic diver) calling from England. “I’ll only be a few minutes,” he whispers, his inquisitive delft blue eyes glancing my way then off. He strolls outside to the patio. (Though now married, at the time they were engaged. During our meeting, I asked him when they were getting hitched and he declined to answer. I prodded. “I’m not telling!” he refused flatly. Less than four weeks later, they tied the knot in a storybook wedding held in a castle in the English countryside.)

Minutes pass. Through the window I espy Lance pacing back and forth on the sidewalk, passing the eatery several times, in and out of sight. He’s laser-focused.

Lance and Tom are frequent targets of the paparazzi. They’ve been snapped smooching in a public parking lot, changing planes in an airport, and even on the beach, with bottled water in hand. Lance later tells me, “I live a very open life. The tabloids make up very colorful stories. It doesn’t really bother me. Here’s how I look at it. There will come a day when no one will want to claim to have slept with me or Tom and that will be a truly tragic day.”

The two met at a mutual friend’s party after Tom was in town picking up an award from Nickelodeon. “He walked in an hour late with a gaggle of beautiful women. I assumed he was straight,” Lance reflects, already having known of Daley’s stature in the sport’s world. “We talked and he was very charming right off.” Lance left early, as he had to ready a script for the next day. On Lance’s exit, Tom approached him, took Lance’s phone and entered his own number, adding a semicolon and a parenthesis, making a winky face. “No straight man would do that!” giggles Lance now. “From then on we talked or texted every day.”

A half hour passes. Lance returns. He’s apologetic. (I learn several days later that he and Tom were talking to the wedding planner.)

Lance tells me that when he and Tom met four years ago, it wasn’t necessary for them to go out and get tested for HIV. Since Tom is a professional athlete, his health is constantly monitored, and of course, Black gets tested frequently. “Before Tom, though, when I entered a relationship both of us would test together,” he offers, scooting his bar stool a bit closer to our petite round wood table. “One guy I dated for awhile tested positive after we broke up. His diagnosis actually brought us closer together.”

In the past few years, Lance has been absorbed in fighting for marriage equality and sees a strong connection between this issue and the epidemic. “When young people start to rail against marriage equality I say, ‘Well, you never survived a plague. You never saw what it meant to have your relationship delegitimized when your partner died. Everything you built and owned together was taken away. You were told you had no rights to visit [your partner in the hospital], you had no rights to your home, to your property, and to you partner’s social security, unlike straight couples.’”

He peers out the panes of glass and looks across the street at what used to be the iconic Tower Records building. Lance inhales and releases an elongated sigh. “…Late eighties, early nineties. I remember all the men’s lives who were cut short. Now I look to the youngsters out there today who have discovered PrEP. I’m hopeful this generation won’t experience what we experienced. It’s important for them to be informed. The fight is not over. PrEP doesn’t end the struggle. We’re learning that there are ramifications to completely unprotected sex, even if PrEP is one hundred-percent effective.”

With that, we stride back to the hotel, conversing about our lives, politics, and films. The discussion circles back to this generation and HIV.

“I hope they are having conversations about STIs,” persists Lance bluntly, crossing the street. “Just because you’re on PrEP doesn’t mean you can’t be hurt severely by other infections. You can’t assume the other person [if negative] is on PrEP either. It’s not a cure-all; PrEP is not a prevent-all.”

Lance hammers on. “It’s our responsibility [as gay people] to end this disease and that might mean asking some uncomfortable questions. PrEP is a wonderful thing. Understand its power and use it wisely,” he advises.

At the hotel, we have a farewell embrace, amidst the leafy surroundings and calming burbles from the lawn fountain. “Let’s not make it another decade before we get together,” Lance jokes. He takes a beat. “You know, Dann, these kids’ lives are precious. We need them to be strong so they can fight for equality…,” says Black, with intoxicated gumption. He marches off.

The eternal Activist fades into the lobby, spinning yet another real tale that empowers us with encouragement.

Sean Black photographed Chris Van Etten for the July cover story. Follow him on Twitter and Instagram @seanblackphoto.

Dann Dulin is a Senior Editor of A&U. He interviewed Chris Van Etten for the July cover story. Follow him on Twitter @DannDulin.

Beauty Ally
Hair stylist and makeup artist Eric Leonardos uses his reality-show celebrity to give back
by Larry Buhl

Photographed Exclusively for A&U by Sean Black

When Eric Leonardos casually asks me where I go to get my haircut, I freeze. I’m sitting in his mid-century inspired living room in West Hollywood, expecting him to throw shade when I confess. Supercuts. Every month. I prepare to explain that haircuts are a transactional thing with me, and I don’t like to make appointments and curly hair is pretty goof-proof, isn’t it?

I assume saying this to a hair and make up artist, one who retains some celebrity clients as well, would be sacrilege. But Leonardos simply smiles and reassures me that my approach to hair is fine for me. Still, I’m missing out, he adds.

“Some people want to come back to the same stylist not only for their skill but for their experience and the connection with that person,” Leonardos says. “I get to know them and they get to know me and we share things about our lives.”

Leonardos wasn’t asking me about my hair habits to shame me. He was making a larger point about human connection and how the quest for beauty should be more than running away from ugliness, which ties into his initiative, Beauty Allies.

But before I get to Beauty Allies, it’s important to understand how Leonardos gained a national platform to talk about these things. It all started with that prototypical “meet a stranger, get a gig on a reality show, come out as HIV-positive to the world” Hollywood fairytale.

Prince Charming, found and lost
In early 2016 the casting people behind the LOGO TV series Finding Prince Charming reached out to Leonardos via Facebook. One of the casting editors had met him at a party a month earlier.

“Just before I was contacted by the show I had just made a decision to focus more on helping people in the HIV community,” Leonardos says. And, thanks to Shonda Rhimes, who wrote the best-selling book, Year of Yes, he designated 2016 as his year of saying yes.

It wasn’t until a subsequent Skype interview with the casting director that Leonardos figured that being on the show, if he were cast, could be a springboard to doing more regarding HIV. But he would have to make it through the interview process, and, ironically, disclosing his HIV-positive status could kill his chances to be on the show.

“HIV is an important issue in dating,” Leonardos tells me. “If I’m going to be intimate I’m going to talk about it with someone I’m dating. I decided if I go on this show I would be honest about it.”

Project Angel Food Volunteer Makeover Day

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As it turned out HIV wasn’t an issue to the producers, and in June Leonardos was boarding a black SUV and driving to an undisclosed location to be sequestered in a house with thirteen other guys vying for the affection of an Atlanta-based interior designer, Robert Sepulveda, Jr., a man of chiseled cheekbones and salt-and-pepper scruff who claimed to be looking for his own “white picket fence dream.”

If you’re not familiar with Finding Prince Charming, think of it as the gay male answer to The Bachelor and The Bachelorette. There are some differences between the shows, in addition to sexual orientation. At the end of each forty-five-minute episode of Finding Prince Charming, instead of a “rose ceremony,” there was a black-tie event. This involved Sepulveda asking a finalist to remove his tie—he always gave a reason—before gently and diplomatically ejecting him from the show.

In an emotional scene in the last of nine episodes Sepulveda told Leonardos he would keep his tie, saying, “I think that our lives crossed for a reason.”

That was several episodes after Leonardos came out to him—and the viewing audience and the world—as HIV-positive. This was episode five, at a masquerade party where contestants were asked to take off their self-made masks and reveal a secret. Eric was last to remove his mask and he took a deep breath before confessing.

“Ten years ago I found out that I was HIV-positive,” he told Sepulveda. “I’ve learned to love who I am today. I share this with you because I have to. It’s a part of me. It’s a small part of me‚ it’s only a part of me—there’s much more to me than that.”

“Hey, there’s nothing you could say that would scare me away from you,” Sepulveda said, before running his hand through Eric’s hair and kissing him. Leonardos affirms to me that such moments are completely unscripted.

“I knew the weight of what I was going to do,” Leonardos recalls. “I didn’t know that I would do it then, not until that day. The production staff did say I would know when the right time to talk about [HIV] would be. It had to be the right time. It’s much like real life in that way.”

Leonardos adds that throughout the episodes—the stilted mixers, the group dates, the “tell me about yourself in a hashtag” game—he tried to present himself as he really was. Which was not easy, given the unreality of the reality show format.

“I went on the show to be myself and talk about HIV, even though I didn’t know how I was going to talk about it if I had the opportunity to represent myself and community and anyone living with HIV in the best way I could.”

Leonardos estimates that over the course of the show he saw Sepulveda in total maybe twenty hours (real time not air time), including four dates with him—two alone and several group dates—just enough time to decide you would like to keep getting to know someone.

As the “winner,” Leonardos joined Sepulveda and walked off into the sunset to see if things would work out in real life. Ultimately they didn’t work and Leonardos doesn’t go into specifics of why, just that the connection he thought they shared just wasn’t there when the cameras were off. “We’re still friends,” Leonardos tells me, adding that the surreal way they were introduced may have hindered, rather than encouraged, a stronger bond.

“The idea was, whoever he had the strongest connection with, he would choose, but it’s hard to believe two people could get married out of that situation.”

Alliance Beauty Day

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A new platform
Though neither man found that white picket fence, at least not with each other, Leonardos, at the end of the show, has something even more valuable.

“If I hadn’t made it to the top three in the run-off, the show might have been just a blip in my life. Now I will forever be the winner of an all-gay dating show,” he says. “I can’t erase it even if I wanted to. So I can either run with it or hide from it.”

Running and hiding was not an option, he admits, and he was still in his year of saying yes. With three million viewers who had followed him for nine weeks, plus stories in US Weekly and Access Hollywood, as well as many Instagram followers, he had a platform, and a chance to use his fame to help others.

“When I was younger I watched celebrities on TV and I thought if I were them I would use that fame for good.”

At his home, the thirty-six-year-old Leonardos shows me his vision board, and he’s so excited about his many projects that I have a hard time following everything. So I ask him about Beauty Allies, something that he’s been thinking about for years.

He explains that beauty should be an “inside job.” I’m intrigued. He continues.

“Our society is obsessed with outer beauty, but I believe there must be balance in beauty.” To clarify, he reads to me from his notebook (he says he writes in his notebook daily):

“What makes something beautiful is not about fitting into a perfect mold. A majority of our society has decided on what’s beautiful for the human being and people are trying to fit into that mold. When there is an imbalance, when the thought is negative, then the ritual of putting on make up is about saying ‘I’m not good enough.’ If people have that thought then that will create an unhappy, dissatisfied person.

“We can approach beauty from a more balanced place and see a lot less of these people obsessed with perfection on the outside and call on them to focus on beauty on the inside,” he concludes, beaming. I’m still self-conscious about my Supercuts revelation, and I’m not exactly clear how his vision relates to philanthropy.

He explains by offering the mission statement of Beauty Allies: It’s a national network of beauty professionals that will highlight noble causes and “promote balance to an outer-beauty obsessed society.”

I’m still looking for the bottom line, so Leonardos shares what he’s already accomplished vis-à-vis Beauty Allies.

Beauty, inside out
In February, Leonardos and his salon at the time, Public Service Salon, launched an Alliance Beauty Day, a makeover campaign in conjunction with the Alliance for Housing and Healing (AHH), a Los Angeles-based group that provides the basic necessities to those struggling with HIV/AIDS and poverty. Twelve formerly homeless clients—eleven women and one man—got the full salon treatment from Leonardos and other stylists at the salon. An ally, M•A•C Cosmetics, provided cosmetics and a makeup consultant.

Leonardos said it was about giving a new sense of self-worth.

“Some were getting back into the workforce. Some experienced a lot of trauma. They shared their stories with me and I listened. What I got back was the experience of watching these women see their outsides begin to match their beautiful insides.”

A&U highlighted the event in an online feature in March. Desiree Whitney had nothing but praise for Leonardos and his crew as well as AHH and its development director Jack Lorenz.

“After three and a half years of being homeless, literally living on the streets of Hollywood, I was depressed, exhausted, disillusioned and hopeless. I am fifty-seven but felt eighty.…I look better than I have in many years, but what they did for my soul was truly a miracle. I feel forty, excited about my new life and BEAUTIFUL inside and out.”

It’s the inside-and-out beauty that Leonardos was promoting, he tells me.

“[The AHH makeover day] was aligned with the mission of Beauty Allies because we were promoting beauty in a balanced way. We did not bring in [the clients] to point out things wrong with them. The goal was to make them feel great.”

The AHH event inspired him to do more. In May Leonardos organized another free salon day, this time giving makeovers—bringing out the inner beauty, not fixing problems, he insists—to longtime volunteers of Project Angel Food, an L.A.-based nonprofit that has brought meals to people with HIV/AIDS since 1989.

“I told [Project Angel Food] let’s reward some of your best volunteers and showcase and expose with the resources we have,” he says.

He also uses social media to get peoples’ attention and drive them to the Beauty Allies website.

You can be a beauty ally in many ways. You can give to the organization, so we can do more work like this. We may donate cosmetics, so if you have unopened cosmetics unexpired, maybe we will use it.

“You can be a beauty ally in many ways. You can give to the organization, so we can do more work like this. We may donate cosmetics, so if you have unopened cosmetics unexpired, maybe we will use it.” He’s active on Twitter, promoting his beauty days and reminding people of National HIV Testing Day, as well as promoting speeches he’s given for HIV/AIDS Services in North Texas and for the HIV/AIDS group Thrive Tribe.

Beauty Allies is in the early stages of getting a 501(c)3 designation, but Leonardos is being an ally outside the fledgling organization. When we last spoke, he was organizing a Trans Lounge, under the auspices of the Los Angeles LGBTQ Center, to help trans women in the early stages of their transition deal with new ways of doing hair and makeup. And he’s getting settled in his new salon, the U.S. flagship store of Paris-based franchise Mod’s Hair.

And he’s continuing to balance his salon and charity work with freelancing for celebrities. He’s not a union stylist, he emphasizes. That means he can’t work on the set. But if an actor leaves the set to do some press for a TV show, the network will contract with him, and SAG/AFTRA sets the rate and the duties, protecting him from saying “yes” to an unreasonable actor’s demands. Although the actors he works with, including Betsy Brandt of Breaking Bad and Life in Pieces, are very reasonable and respectful of his time.

“Unions protect us. People may not value our time the way we do. Sometimes we will go above and beyond because of our passion for what we do. Over time that’s exhausting. You want regulations to protect you.”

On being out about HIV
Having this much attention as an out and proud man with HIV was unlikely just two years ago, and nearly inconceivable back in 2006, when Leonardos was living in Austin, Texas and learned his status. Initially he didn’t want to tell anyone and didn’t want to date out of fear of rejection. It wasn’t until a friend from Los Angeles encouraged him to visit, saying that people were more hip to what the virus was and what it wasn’t. Leonardos says that assessment is generally true, although he still experiences some micro-rejections and the icky but well-intentioned sympathetic responses. But none of those responses are reason to clam up about his status. In fact, he feels a duty to speak out about the issues faced by people living with HIV.

“For one thing, I think we can agree that people with HIV should not be homeless,” he tells me. “We can agree that people with HIV shouldn’t be rejected.”

His advocacy has resonated with others. Says Joel Goldman [A&U, June 2016], managing director of The Elizabeth Taylor AIDS Foundation (ETAF): “When Eric disclosed his HIV status on Finding Prince Charming I saw a giant chunk of stigma chipped away. Then when he was chosen as the winner, the stigma that surrounds people living with HIV was chipped away even more. As soon as that moment happened, I knew that he would be a great member of our ETAF Ambassador team. He joined ETAF at AIDSWatch in D.C. and I was impressed with his commitment to be a champion for many HIV/AIDS organizations.”

Well into year two of his year of saying yes, Leonardos says he’s still looking for ways of giving back to the community, and he’s open to ideas.

For more information about Beauty Allies, log on to: www.ericleonardos.com.

Sean Black photographed Dustin Lance Black for the August cover story. Follow him on Twitter and Instagram @seanblackphoto.

Larry Buhl is a radio news reporter, screenwriter, and novelist living in Los Angeles. He interviewed advocate Chandi Moore for the June cover story. Follow him on Twitter @LarryBuhl.

Let’s Be Frank
Barney Frank Talks AIDS, Government, and Fending Off the Homophobes in the Early Years of the Epidemic
by Lester Strong

Photographed Exclusively for A&U by Sean Black

Barney Frank: elected a Democratic member of the Massachusetts state House of Representatives in 1972, then a member of the U.S. House of Representatives in 1980, where he served until his retirement in 2013. Newsweek magazine described him as “a viscerally committed liberal: agile, acerbic and ferociously intelligent….” Playboy magazine called him an “enormously effective legislator, popular with his constituents and many of his peers in the House.” And to The Boston Globe Magazine he was a “master parliamentarian with a razor-sharp wit.”

Barney Frank may have been popular with his constituents and many of his Congressional colleagues, but during his thirty-plus years as an elected official, he was no stranger to controversy and hard choices. As an unabashed liberal, he faced criticism not just from the political right, but from the political left. As a gay man who consistently supported and even initiated pro-gay legislation, he ran into opposition not only from homophobic politicians, but from LGBT activists who disagreed with his approach to achieving equal rights. And as a gay politician serving in the 1990s on the House Budget Committee who was greatly concerned to help alleviate the AIDS crisis, he often ran into difficult decisions on the allocation of government funding for medical research efforts versus funding for care of those suffering from the disease.

During a recent wide-ranging interview, Frank discussed the controversies he encountered during his political career, especially as they related to AIDS, and suggested strategies he thinks are needed these days for dealing with a healthcare crisis that despite all the progress on the medical front refuses to go away.

Born and reared in Bayonne, New Jersey, from early adolescence on, Frank knew two things about himself: He wanted to be part of the governmental process, and he was gay. “I was early on very angry at racial injustice,” he said during the interview. “In particular, I remember learning about the murder of Emmett Till, a black teenager who, at fourteen years old in 1954, was exactly my age. He had been brutalized and severely tortured before being lynched by two white men in the Jim Crow-era South based on what later proved to be fabricated charges. I was outraged, and said, ‘You know, I’d like to change that.’ Politics is the ideal way to do that because it’s a way to change things on a big scale.”
As for being gay, he also understood that it would pose problems for him trying to become an elected official. “However,” he noted, “I began to learn there was a way you could get involved in government not as an elected official, not as a person out front, but as an aide to elected officials, which wasn’t so problematic for gay people.”

Frank’s outrage over racial injustice led him to participate in the “Freedom Summer” of 1964, when he joined many other college students in Mississippi for a black voter registration drive. After graduating from Harvard College in Cambridge, Massachusetts, he left graduate school in 1968 for his first job in government as Chief Assistant to the then Mayor of Boston, Kevin White, followed in 1971 by becoming Administrative Assistant to Massachusetts Congressman Michael Harrington in Washington, D.C.

His breakthrough into electoral politics came in 1972. At the urging of friends, and contrary to his own earlier conviction that he would be unelectable to any office, he decided to run for the Massachusetts House of Representatives in Boston’s Ward Five, a seat being vacated that year by a moderate Republican, and he won. “Of course, this was 1972,” Frank commented. “I wanted very much to be in office, but I decided I couldn’t come out [as gay] and be successful. However, being gay, I felt it would be hypocritical, even despicable, to be anything other than an advocate of gay rights. So when I received a questionnaire from a gay group asking if I would sponsor a gay rights bill in the Massachusetts legislature, I said yes, I’d do it. So in my first year in office I filed the first gay rights bill in the history of the state.” The bill went down in defeat, but this was the first of many lesbian, gay, bisexual, and transgender (LGBT) issues he would support over his decades as an elected official.

In 1980, Frank ran for the U.S House of Representatives and won. For most of his time in Congress he represented a varied district encompassing some Boston suburbs down to the coastal communities of Fall River and New Bedford. A varied constituency, to say the least, but one that he represented so ably until his retirement in 2013 that he seldom faced any serious opposition to re-election.

Then by 1984 or 1985 it became clear there were things we could do, specifically three things: The first was to search for a cure to this incurable disease. The second was to provide help for those who were sick or dying because of it. The third, and increasingly more important as time went on, was to prevent people with the disease from being discriminated against.

Over the years, Frank worked hard on a number of issues: affordable rental housing for low-and moderate-income people; civil rights, including LGBT rights; defending affirmative action; controlling military spending to free up funding for other important needs, and financial regulation, especially after the economic meltdown in 2008. But in 1981, a problem reared its ugly head that spoke to him personally as a gay man: the AIDS crisis.

Asked how he learned about the disease, Frank replied: “At first I learned of it the way a lot of people did, by reading about it. But I had a friend, a young gay man who really knew a lot about it because when the testing for it came out he discovered he was HIV-positive. He talked to me quite a bit about the disease before he died of AIDS-related causes. I wasn’t on any of the Congressional committees that dealt with healthcare, so early on other colleagues of mine were much more active than I was in dealing with the crisis, especially Henry Waxman, who represented a part of Los Angeles where it was a serious issue, and my colleague from Massachusetts, Gerry Studds, the first man to acknowledge being gay in Congress.”

Frank continued: “I was aware of the illness, but not focused on it at first since there didn’t seem to be much we could do about it. Then by 1984 or 1985 it became clear there were things we could do, specifically three things: The first was to search for a cure to this incurable disease. The second was to provide help for those who were sick or dying because of it. The third, and increasingly more important as time went on, was to prevent people with the disease from being discriminated against.”

Perhaps another reason Frank was less attentive to the AIDS crisis during its early years was his limited social contact with the gay community. “Look,” he said during the interview, “until 1987 I was closeted. I met some gay people politically, but my gay circles were still somewhat restricted. I was always very active as an advocate, but I didn’t become fully part of the community until 1987, when I came out.”

To be specific, Frank came out publicly as a gay man in a Boston Globe article on Memorial Day in 1987, and on the following day he marched in a Boston AIDS march. “So, most memorably,” he said, “I addressed an AIDS march as an openly gay man for the first time in May 1987.”

On the AIDS front in Washington, D.C., by the mid to late 1980s, according to Frank, he along with his colleagues Gerry Studds and Henry Waxman were working hard on a number of issues: “Gerry was doing a great deal to press the [Reagan] administration to educate the public about AIDS. Henry was working on health policy. And I was focused on fighting discrimination against people living with AIDS and leading the fight against what we jocularly called the ‘No Promo Homo’ amendments to spending bills for medical research on AIDS and providing care for those sick from the disease. You have to remember, at the time AIDS was overwhelmingly identified with gay men, even though others were known to have it. But by the mid to late 1980s, the right-wing homophobes couldn’t come right out and say, ‘Let them die.’ So instead of trying to kill the legislation outright, they had a strategy of trying to retard our efforts to fight the disease and deal compassionately with people who had it by attaching riders to bills saying that none of the government funds provided for research, for caring for people in hospitals, or to social service agencies dealing with AIDS could be used to promote homosexuality.

“Well, the notion of promoting homosexuality is a great stupidity. Thinking you can promote it or retard it by what you say! But if these amendments had passed, people would have been afraid that if they were nice to gay people, if they told people they should feel good about being gay, if they tried to counter the shaming of gay people it would be considered ‘promoting homosexuality’ and would get them in trouble. So I spent a lot of time trying to defeat these amendments, which, if they had passed, would have made our pro-gay efforts, and our anti-AIDS efforts, ineffective.”

In those days, “before the Tea Party Republicans,” according to Frank, Democrats and Republicans could sometimes work across party lines on legislation they considered important. One such instance was an immigration rule stating that no one with an infectious disease could come to the United States. Along with Republican Senator Alan Simpson of Wyoming, Frank and other Democrats fought to remove AIDS from the list of infectious diseases on the grounds that it could not be transmitted by casual contact (i.e., by shaking hands, by sneezing, by being in the same room, etc.). They lost that fight because of machinations by arch anti-gay bigot Jesse Helms, a Republican Senator from North Carolina. Following the defeat, however, a coalition of Democrats and some Republicans—most notably Senator Orrin Hatch of Utah—devised an effective counterstrategy: They managed to amend the damaging language in other bills so that while it expressed negative sentiments, it had no legal force.

In the 1990s, Frank joined the House Budget Committee. “On the Budget Committee, I worked to increase funding for AIDS,” Franks remarked. “But that led to tough choices. There was never enough federal money to fund all the needs related to AIDS. But should what there was go toward medical research on ways to end the epidemic or at least mitigate its physical damage to the immune system, or toward the medical and social service care people living with AIDS required? I was certainly concerned about the care aspect of the epidemic, but my preference was for the greater proportion of funding to go toward research. I thought it was extremely important to end the epidemic.”

As is clear from Frank’s account of his work in Congress in regard to all LGBT issues, including AIDS, he was heavily enmeshed in working within the political system to solve the problems he felt important. And in doing so, he faced criticism from many of those involved with the issues outside of government in LGBT and AIDS organizations, where protests, demonstrations, national marches, and angry confrontations with government officials and representatives of non-governmental organizations like pharmaceutical companies were standard operating procedures.

Here we meet up not just with two very different approaches toward achieving political goals, but with approaches that at times were quite antagonistic, certainly in regard to AIDS activism. Asked to comment about those differences, Frank replied: “My relations with ACT UP were almost adversarial. I think that organization failed to make a distinction between pressuring politicians and pressuring private companies. There was no way you were going to intimidate politicians by coercive demonstrations, sit-ins, and putting a gigantic condom over Jesse Helms’s house. If anything, such tactics were counterproductive. They just allowed the politicians to go after more money for their election campaigns from donors who agreed with them politically. On the other hand, putting public pressure on drug companies through demonstrations and sit-ins can be very effective. Private corporations have a much lower tolerance for being publicly criticized than politicians. If a corporation found it was only sixty percent popular, it would be terrified. A politician who can get sixty percent of the vote is very happy.”

I think it’s important to keep up the funding. But while it made sense in the 1980s to focus on AIDS as a separate medical issue, I think today it should be folded into the problem of healthcare across the board. There are so many illnesses that are particularly problematic for low-income people…

He continued: “Another problem was the tendency of activists to denounce the politicians closest to them who didn’t vote just the way they wanted the politicians to vote. They found it somehow emotionally more satisfying to attack the politicians that were helping, but not helping enough as they saw it, as opposed to going after their outright enemies in effective ways that would hurt those enemies politically. I’m no friend of the National Rifle Association [NRA], but they are very, very effective in getting what they want in Congress. How? The NRA has never held a public ‘shoot-in’ or ‘die-in’ in Washington or a state capitol that I know of. But every member is urged to register to vote and to know who all the politicians backing their position are. The NRA lets its members know when any vote on a bill relating to ‘gun rights’ is coming up and has them contact their elected representatives and let them know ‘You better vote for my position.’ It’s a very simple process. It’s not necessarily emotionally satisfying. You’re not on the streets cheering with all your friends. But it is very effective.”

After interviewing Barney Frank, one thing is clear: His many years in elective office have given him an intimate knowledge of how government works, and of how to interact with the legislative branch in such a way as to maximize the possibility of having your own needs met. His words carry weight. He was also active in many areas there is simply no space to cover in an article devoted to his work around AIDS, some that were LGBT related (marriage equality) and some not (low-income housing, the financial crisis in 2008). But, to end this article, there was one additional comment he made about the AIDS crisis worth quoting here: “I think it’s important to keep up the funding. But while it made sense in the 1980s to focus on AIDS as a separate medical issue, I think today it should be folded into the problem of healthcare across the board. There are so many illnesses that are particularly problematic for low-income people, and even for those who are not low income. We should be working on good health policies in general that include AIDS—for good health insurance coverage, for low pharmaceutical costs, and for good research into the causes and cures for many diseases.”

Coming from Barney Frank, these words should be listened to.

Lester Strong is Special Projects Editor for A&U.

Finding Strength
International LGBTQ and HIV/AIDS activist Carlos Idibouo shares his life’s journey and calls for increased access to treatment and prevention

Text & Photos by Alina Oswald

I would never call myself an activist. People call me an activist,” Carlos Idibouo tells me, sitting across from me in my studio. He is in town from Canada, and stopped by to tell me his story and plans for the future. Idibouo is recognized internationally for his LGBTQ and HIV activism work. An Ivory Coast native now living in Canada, he is on the board of several national and international organizations, including the Gay and Lesbian International Sports Association, GLISA, where he represents Africa. He was a member of the LGBT Francophonie Conference Scientific Committee, part of this year’s Canada Pride Montreal. As I write this, he is in Indianapolis, attending InterPride, the 2017 World Conference, where he was selected by InterPride board of directors to represent Africa Region 16.

Idibouo travels the world to spread the word about equality—LGBTQ as well as women’s equality—and also HIV/AIDS prevention and education. He does it while speaking fluently in English, French or Spanish. He does it by speaking in the universal language of activism.

Quite recently he attended this year’s IAS Conference of HIV Science in Paris, France. Not only that, but he was one of the thirty people selected by IAS to write the Paris Statement, a vote of confidence in the power of science to address HIV across various strategies.

Carlos Idibouo became involved in HIV activism at the age of eighteen, when he was still living in Ivory Coast. He volunteered for Red Ribbon, Ruban Rouge in French, the first Ivory Coast HIV organization, cofounded by Cyriaque Yapo Ako in 1994. Ako is an internationally recognized activist who, in 2006, as executive director of the Reseau Ivoirien des Organisations de PVVIH in Cote d’Ivoire, met with President Bush in D.C., for that year’s White House World AIDS Day. In 2003, Carlos Idibouo and Cyriaque Yapo Ako started the first LGBTQ organization in Ivory Coast. Rainbow Plus—Arc-en-Ciel Plus Cote d’Ivoire—served the LGBTQ community and members of the community living with HIV or AIDS.
At the beginning of 2006, Idibouo attended a workshop, where he ended up being interviewed, as a participant, by the media. Then the article came out.

“Cyriaque called to tell me that my picture was [on the front page] of the newspaper,” Idibouo recalls, explaining that he was completely unaware of the article that had been written about him or the picture plastered over the front page of the newspaper. “I hung up with Cyriaque and a few minutes later, my sister called. She knew that I was gay but she didn’t expect to see it in the newspaper. She started crying. She asked me what I was thinking. [She] was asking me questions I [couldn’t] really answer. I hadn’t seen the newspaper yet.”

At the time Idibouo was on his way back home to Abidjan (in Ivory Coast), returning from yet another workshop. He was waiting for a cab in a busy bus station—a crowded place where people wait in line to get a cab, much like at the airport here, in the States. While he was waiting, a woman came to him, staring closely at his face then starting screaming “It’s him! It’s him!” he recalls. A cab driver noticed the commotion and advised him to get into the first available cab and leave. Only once he was in the cab, on his way home, he realized what had just happened, and that the woman must have recognized him from the newspaper, and that his life was in danger in Ivory Coast.

When he finally grabbed a copy of that newspaper, he noticed his picture on the front page. The caption read, he mentions: “Carlos Idibouo, President of Gays, Lesbians, and Bisexuals.”

He knew that, as a gay man, he wasn’t safe in other African countries. That said, Ivory Coast was (is) considered a progressive country in Western Africa. But the country’s penal code calls homosexuality an immoral act. Hence, if gay people are found having sex, they are thrown in jail. That’s what happened to two guys, he points out. They were sentenced to eighteen months in jail for having sex. The penal code doesn’t clearly define homosexuality as a crime, but if caught having sex with another person of the same sex, an individual is taken to court where the judge rules based on his or her personal beliefs. “It’s a very subjective decision,” Idibouo emphasizes.

Meanwhile, he received a scholarship to participate in the 2006 International AIDS Conference in Toronto, Canada. He had never traveled to North America before and had no idea what to expect. Yet, there he was, in Toronto, attending the conference. A man recognized him from one of the videos playing on screens, on the walls, and the two started chatting. At one point, the man asked if he wanted to stay in Canada.

“I just freaked out when he asked me that question,” Idibouo recalls. “[I told him] I didn’t know anybody [in Canada], and he said ‘but you know me now.’” (Over the years, the two became best of buddies.) They decided to pick up the conversation the following day.

After a sleepless night, he realized that he wanted, after all, to stay in Canada. His new friend put him in touch with a lawyer who, in turn, helped him apply for his refugee status.

While the immigration process in Canada is different from that in the U.S., going through the immigration process, as a legal immigrant or as a refugee, is often an endless, frustrating, depressing, anxiety-causing experience. It involves filling out mountains of paperwork, fingerprinting, waiting for hours to talk to officials, schedule interviews and going through interviews—and that if people are lucky enough to actually get an interview. But for those going through this process it’s all worth it. Coming from a poor country to a country that, until then, one could only dream of, can be an overwhelming, as well as mind-boggling, experience.

“It’s not something that you plan,” he comments. “I don’t think anybody plans on going through this kind of experience. I came to Canada not having a clue what was going to happen to me in terms of claiming a legal status. I found that out when I was already in Canada. And I had to go through the process, because I had made the decision to stay.” This is not something that one can change their mind about halfway into the journey, he further explains, because by then the return ticket is not valid anymore and people don’t have money to buy another ticket. So, they have to stay and go through the entire process.

Thing is, while waiting to receive any news from the immigration office, people find themselves living for years in an ongoing state of uncertainty, unsure of what is to happen to them. Yes, upon applying for legal status they receive a work permit and social security number to go with that work permit, but that only allows them to work, to find a job and earn a living. Pay taxes, too. But they still lack that piece of paper that proves that they’re legal refugees or permanent residents.

It usually takes years to get through it, from applying for legal status to becoming a citizen. (It took Idibouo two years and three months to receive his refugee status. Only then, he could apply for permanent residency. Three years after becoming a permanent resident, he could apply for citizenship.) Years of living in this state of uncertainty can lead to depression and anxiety.

“I want to set up a platform where people will be able to self-identify themselves, without worries,” Carlos Idibouo explains. The House of Culture for Human Diversity will celebrate the diversity of human beings and human rights, be those women’s rights or LGBTQ rights. The new nonprofit will focus on HIV awareness and education, in particular on eliminating stigma and using culture and art to address stigma and related issues.

Some evidence points to an environment of exploitation that endangers the health of migrants. While there’s little information regarding causes of post-migration HIV infections among migrants in the U.S., studies have shown that, oftentimes, socio-economic conditions put migrants in Europe or North America at higher risk of acquiring HIV. That is, because of socio-economic conditions many migrants end up in relationships that, in turn, put them at high risk for HIV (and other STI) infections. Migrants to several of the European Union and European Economic Area seroconverted after moving to those countries; as reported in a recent Avert article, sixty-three percent of the HIV-positive migrants to European Union and European Economic Area seroconverted after they had relocated to their new countries.

Idibouo is very much aware of these statistics (or lack thereof in certain cases) and offers his personal story as a way of giving voice to a much needed, yet often avoided conversation. Idibouo’s story helps to right the wrong assumption that many immigrants bring HIV with them to their new countries. Not only that, but it also adds to the already complex HIV story, while touching on lesser-known facets of HIV seroconversion.

“There are rich men, in a position of power, talking about speeding up your immigration process, [and so] at the end of the day you want to believe them,” Idibouo shares, commenting on migrants who end up in relationships that could place them at risk for HIV. “And you find yourself in a very vulnerable situation where you can’t say no. You don’t have the right words to convince the other person that you don’t want to engage in any kind of sexual intercourse with him.” He pauses, as if trying to find the best way to explain it. “You see, [for migrants] coming to North America, to the rich people country, is part of a dream process. You come here and the first person that you meet on your path is one who tells you that he’s going to marry you and that you won’t have to worry about anything—legal status, money, work. For someone who comes from a very poor country and hears all these things, it’s like [finding] paradise. You don’t measure the notion of risk. You’re aware of it, but it’s the last thing on your mind, because the most important thing for you is your [immigration] status.”

So, even if they are aware of, say, HIV, new immigrants or refugees tell themselves that they’re in a country where HIV is not a death sentence anymore, and that there are medications available to them. They tell themselves that if HIV does happen to them, they’ll deal with it later, once they get their immigration status in order. And so, they go with that person who seems to offer their dreams on a silver platter. They do what that person says, while throwing safety out the proverbial window.

“You can’t say no,” Idibouo reiterates, “because you have just met someone who would be able to save your life and you’re afraid that you’re going to lose that person. And so, you’re trapped. It’s only later on, when you get your legal status, that you realize that you could have avoided [risking exposing yourself to HIV]. But by then it’s often too late.”

He ended up in a complicated relationship. On one hand, because of that very relationship he didn’t have to worry about food or money, and lived in a beautiful place in Toronto. On the other hand, nothing in that beautiful place belonged to him. Every single glass, plate or book had a story and a history he was not a part of. The rules of engagement in the relationship itself were vaguely defined, too.

After a while, Idibouo moved to Montreal for studies. The relationship continued, with Idibouo commuting between Montreal and Toronto.

“In December 2011, I organized an HIV forum in partnership with Clinique l’Actuel in Montreal,” he recalls. People could come to the forum and, if they wanted, they could get tested for HIV. And as an activist, he volunteered to get tested for HIV, so that others would follow his example. He wasn’t worried about the results, because he was getting tested regularly and the results would always come back negative. This time around was no different. And yet, he left the clinic with the feeling that something was not right.
In April of 2012, while still in Montreal and right before leaving for Toronto, he decided to get tested for all STIs. The doctor told him that he could include an HIV test for free. So he got tested for HIV yet again.

As days went by, the clinic would call him in Toronto to let him know about his many test results-—that he had tested negative for one STI or another. And then one day, the clinic called again. He got transferred to the doctor, who, in turn, told him that he had to speak with him in person. Idibouo insisted that, if the call was about his HIV test result, he needed to know. He mentioned that he’d been working in the HIV field for many years and was prepared for whatever the doctor had to say to him. And he basically talked the doctor into giving him the HIV test result over the phone. It was positive. He asked to have his file transferred to his doctor in Toronto.

Idibouo comments that, while nobody wishes HIV, or any other disease, on anybody, he’s glad that it happened in a time and day when medications are available. “I didn’t lose my hair; I’m just shaving because I want to,” he laughs. “I didn’t lose weight, didn’t have to go through side effects related to AZT….” He then confesses, “I was ashamed, knowing that I have been working in the field for so many years, and found myself being HIV-positive. I was ashamed, but not for long, because I was waiting to see how people around me reacted to the news, and they didn’t blame me.” Yet, the complicated relationship he was in ended several months later, in December 2012.

Then he offers, “I’ve never told my folks back home.” When I ask what’s going to happen when his family will see this article, he calmly answers, “I’m fine with that. I have a different approach to talk about things now.”

Now, Carlos Idibouo is at work founding a new nonprofit. The House of Culture for Human Diversity represents the outcome of all his work as an activist, throughout the decades. “I want to set up a platform where people will be able to self-identify themselves, without worries,” he explains. The House of Culture for Human Diversity will celebrate the diversity of human beings and human rights, be those women’s rights or LGBTQ rights. The new nonprofit will focus on HIV awareness and education, in particular on eliminating stigma and using culture and art to address stigma and related issues.

Now, he’s very much involved in the U=U campaign. “I love it,” he says, because “the science is able to prove [that undetectable really means untransmittable].” But, he points out, not everybody can afford to become undetectable because of poverty, lack of access to care, and other factors.

Aside from U=U campaign, Idibouo is also a PrEP advocate. Recently, Ontario decided to subsidize the cost of PrEP, making it much more affordable. But, he mentions, some people, in particular those new to the country, still cannot afford PrEP. And so, despite all the progress, availability does not mean affordability.

“I’ve never been afraid of HIV,” Idibouo says. “When I was very young [as an HIV activist], I’ve seen so many people dying, some dying in my arms. Even when I cofounded Rainbow Plus, there were [still] people from the LGBT community who were dying [from the virus]. So, I’ve never been afraid of HIV. I’m afraid of human beings, because human beings give social power to HIV—that is, the discrimination that comes with it, the stigma and rejection, and people who could survive but let themselves die because of that social power that humans give to HIV.”

But that can be reversed. People can take the power away from HIV. They can educate themselves about HIV and make “getting to zero” new infections happen. He mentions the importance of looking ahead and embracing new prevention strategies such as the 90-90-90 treatment target to end AIDS. Its goal is that, by 2020, 90 percent of the people to know their HIV status; of those HIV-positive, 90 percent to be in treatment; of those in treatment, 90 percent to be undetectable.

“Every single person, especially if they’re sexually active, needs to be involved and part of this campaign,” Carlos Idibouo emphasizes. Every person needs to take the power away from HIV. “I took power over HIV. After all, being able to recognize your weaknesses is a strength.”

Learn more about Carlos Idibouo and the House of Culture for Human Diversity by visiting: http://bit.ly/2kN4FsT.

Alina Oswald is Arts Editor of A&U. She interviewed advocate Omar Garcia for the October issue.