JANUARY 2017 • ISSUE 267 • AMERICA’S AIDS MAGAZINE
Memory & Persistence Daniel Garza • New Film, EKAJ • Rob Ordonez • Artist Kelly L. Taylor
cleve
JONES
WITH HIS NEW MEMOIR, WHEN WE RISE, THE ADVOCATE REINVIGORATES THE AIDS ACTIVISM HE HELPED INVENT
WHAT IS ODEFSEY®? ODEFSEY is a 1-pill, once-a-day prescription medicine used to treat HIV-1 in people 12 years and older. It can either be used in people who are starting HIV-1 treatment, have never taken HIV-1 medicines before, and have an amount of HIV-1 in their blood (“viral load”) that is no more than 100,000 copies/mL; or in people who are replacing their current HIV-1 medicines and whose healthcare provider determines they meet certain requirements. These include having an undetectable viral load (less than 50 copies/mL) for 6 months or more on their current HIV-1 treatment. ODEFSEY combines 3 medicines into 1 pill taken once a day with a meal. ODEFSEY is a complete HIV-1 treatment and should not be used with other HIV-1 medicines. ODEFSEY does not cure HIV-1 infection or AIDS. To control HIV-1 infection and decrease HIV-related illnesses, you must keep taking ODEFSEY. Ask your healthcare provider if you have questions about how to reduce the risk of passing HIV-1 to others. Always practice safer sex and use condoms to lower the EJCPEG QH UGZWCN EQPVCEV YKVJ DQF[ ƃ WKFU 0GXGT TGWUG QT UJCTG PGGFNGU QT QVJGT KVGOU VJCV JCXG DQF[ ƃ WKFU QP VJGO
IMPORTANT SAFETY INFORMATION
What is the most important information I should know about ODEFSEY? ODEFSEY may cause serious side effects:
• Buildup of an acid in your blood (lactic acidosis), which
is a serious medical emergency. Symptoms of lactic acidosis include feeling very weak or tired, unusual muscle pain, trouble breathing, stomach pain with nausea or vomiting, feeling cold (especially in your arms and legs), feeling dizzy or lightheaded, and/or a fast or irregular heartbeat. • Serious liver problems. The liver may become large and fatty. Symptoms of liver problems include your skin or the white part of your eyes turning yellow (jaundice); dark “tea-colored” urine; loss of appetite; light-colored bowel movements (stools); nausea; and/or pain, aching, or tenderness on the right side of your stomach area. • You may be more likely to get lactic acidosis or serious liver problems if you are female, very overweight, or have been taking ODEFSEY or a similar medicine for a long time. In some cases, lactic acidosis and serious liver problems have led to death. Call your healthcare provider right away if you have any symptoms of these conditions.
• Worsening of hepatitis B virus (HBV) infection. ODEFSEY
is not approved to treat HBV. If you have both HIV-1 and HBV and stop taking ODEFSEY, your HBV may suddenly get worse. &Q PQV UVQR VCMKPI 1&'(5'; YKVJQWV Ƃ TUV VCNMKPI VQ [QWT healthcare provider, as they will need to monitor your health.
Who should not take ODEFSEY?
Do not take ODEFSEY if you take: • Certain prescription medicines for other conditions. It is important to ask your healthcare provider or pharmacist about medicines that should not be taken with ODEFSEY. Do not start a new medicine without telling your healthcare provider. • The herbal supplement St. John’s wort. • Any other medicines to treat HIV-1 infection.
What are the other possible side effects of ODEFSEY?
Serious side effects of ODEFSEY may also include: • Severe skin rash and allergic reactions. Skin rash is a common side effect of ODEFSEY. Call your healthcare provider right away if you get a rash, as some rashes and allergic reactions may need to be treated in a hospital. Stop taking ODEFSEY and get medical help right away if you get a rash with any of the following symptoms: fever, skin blisters, mouth sores, redness or swelling of the eyes (conjunctivitis), swelling of the face, lips, mouth, or throat, trouble breathing or swallowing, pain on the right side of the stomach (abdominal) area, and/or dark “tea-colored” urine. • Depression or mood changes. Tell your healthcare provider right away if you: feel sad or hopeless, feel anxious or restless, have thoughts of hurting yourself (suicide) or have tried to hurt yourself. • Changes in liver enzymes. People who have had hepatitis B or C or who have certain liver enzyme changes may have a higher risk for new or worse liver problems while taking ODEFSEY. Liver problems can also happen in people who have not had liver disease. Your healthcare provider may do tests to check your liver enzymes before and during treatment with ODEFSEY. • Changes in body fat, which can happen in people taking HIV-1 medicines. • Changes in your immune system. Your immune system OC[ IGV UVTQPIGT CPF DGIKP VQ Ƃ IJV KPHGEVKQPU 6GNN [QWT healthcare provider if you have any new symptoms after you start taking ODEFSEY. • Kidney problems, including kidney failure. Your healthcare provider should do blood and urine tests to check your kidneys. Your healthcare provider may tell you to stop taking ODEFSEY if you develop new or worse kidney problems. • Bone problems, such as bone pain, softening, or thinning, which may lead to fractures. Your healthcare provider may do tests to check your bones. The most common side effects of rilpivirine, one of the medicines in ODEFSEY, are depression, trouble sleeping (insomnia), and headache. The most common side effect of emtricitabine and tenofovir alafenamide, two of the medicines in ODEFSEY, is nausea. Tell your healthcare provider if you have any side effects that bother you or do not go away.
What should I tell my healthcare provider before taking ODEFSEY?
• All your health problems. Be sure to tell your healthcare
provider if you have or have had any kidney, bone, mental health (depression or suicidal thoughts), or liver problems, including hepatitis virus infection. • All the medicines you take, including prescription and overthe-counter medicines, vitamins, and herbal supplements. Other medicines may affect how ODEFSEY works. Keep a list of all your medicines and show it to your healthcare provider and pharmacist. Ask your healthcare provider if it is safe to take ODEFSEY with all of your other medicines. • If you are pregnant or plan to become pregnant. It is not known if ODEFSEY can harm your unborn baby. Tell your healthcare provider if you become pregnant while taking ODEFSEY. • If you are breastfeeding (nursing) or plan to breastfeed. Do not breastfeed. HIV-1 can be passed to the baby in breast milk.
Ask your healthcare provider if ODEFSEY is right for you, and visit ODEFSEY.com to learn more. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.
Please see Important Facts about ODEFSEY including important warnings on the following page.
ODEFSEY does not cure HIV-1 or AIDS.
SHOW YOUR
photo by Stuart Locklear
RADIANCE
ODEFSEY is a complete, 1-pill, once-a-day HIV-1 treatment for people 12 years and older who are either new to treatment and have less than 100,000 copies/mL of virus in their blood or people whose healthcare provider determines they can replace their current HIV-1 medicines with ODEFSEY.
IMPORTANT FACTS This is only a brief summary of important information about ODEFSEY® and does not replace talking to your healthcare provider about your condition and your treatment.
(oh-DEF-see) MOST IMPORTANT INFORMATION ABOUT ODEFSEY
POSSIBLE SIDE EFFECTS OF ODEFSEY
ODEFSEY may cause serious side effects, including:
ODEFSEY can cause serious side effects, including:
•
•
•
Buildup of lactic acid in your blood (lactic acidosis), which is a serious medical emergency that can lead to death. Call your healthcare provider right away if you have any of these symptoms: feeling very weak or tired, unusual muscle pain, trouble breathing, stomach pain with nausea or vomiting, feeling cold (especially in your arms and legs), feeling dizzy or lightheaded, and/or a fast or irregular heartbeat. Severe liver problems, which in some cases can lead to death. Call your healthcare provider right away if you have any of these symptoms: your skin or the white part of your eyes turns yellow (jaundice); dark “tea-colored” urine; loss of appetite; light-colored bowel movements (stools); nausea; and/ or pain, aching, or tenderness on the right side of your stomach area. Worsening of hepatitis B (HBV) infection. ODEFSEY is not approved to treat HBV. If you have both HIV-1 and HBV, your HBV may suddenly get worse if you stop taking ODEFSEY. Do not stop taking ODEFSEY without first talking to your healthcare provider, as they will need to check your health regularly for several months.
You may be more likely to get lactic acidosis or severe liver problems if you are female, very overweight, or have been taking ODEFSEY or a similar medicine for a long time.
•
• • • • • • •
Those in the “Most Important Information About ODEFSEY” section. Severe skin rash and allergic reactions. Depression or mood changes. Changes in liver enzymes. Changes in body fat. Changes in your immune system. New or worse kidney problems, including kidney failure. Bone problems.
The most common side effects of rilpivirine, one of the medicines in ODEFSEY, are depression, trouble sleeping (insomnia), and headache. The most common side effect of emtricitabine and tenofovir alafenamide, two of the medicines in ODEFSEY, is nausea. These are not all the possible side effects of ODEFSEY. Tell your healthcare provider right away if you have any new symptoms while taking ODEFSEY. Your healthcare provider will need to do tests to monitor your health before and during treatment with ODEFSEY.
BEFORE TAKING ODEFSEY
ABOUT ODEFSEY •
•
ODEFSEY is a prescription medicine used to treat HIV-1 in people 12 years of age and older who have never taken HIV-1 medicines before and who have an amount of HIV-1 in their blood (“viral load”) that is no more than 100,000 copies/mL. ODEFSEY can also be used to replace current HIV-1 medicines for some people who have an undetectable viral load (less than 50 copies/ mL), have been on the same HIV-1 medicines for at least 6 months, have never failed HIV-1 treatment, and whose healthcare provider determines that they meet certain other requirements. ODEFSEY does not cure HIV-1 or AIDS. Ask your healthcare provider about how to prevent passing HIV-1 to others.
Do NOT take ODEFSEY if you: • Take a medicine that contains: carbamazepine (Carbatrol®, Epitol®, Equetro®, Tegretol®, Tegretol-XR®, Teril®), dexamethasone (Ozurdex®, Maxidex®, Decadron®, Baycadron™), dexlansoprazole (Dexilant®), esomeprazole (Nexium®, Vimovo®), lansoprazole (Prevacid®), omeprazole (Prilosec®, Zegerid®), oxcarbazepine (Trileptal®), pantoprazole sodium (Protonix®), phenobarbital (Luminal®), phenytoin (Dilantin®, Dilantin-125®, Phenytek®), rabeprazole (Aciphex®), rifampin (Rifadin®, Rifamate®, Rifater®, Rimactane®), or rifapentine (Priftin®). •
Take the herbal supplement St. John’s wort.
•
Take any other HIV-1 medicines at the same time.
Tell your healthcare provider if you: • Have or have had any kidney, bone, mental health (depression or suicidal thoughts), or liver problems, including hepatitis infection. • Have any other medical condition. • Are pregnant or plan to become pregnant. • Are breastfeeding (nursing) or plan to breastfeed. Do not breastfeed if you have HIV-1 because of the risk of passing HIV-1 to your baby. Tell your healthcare provider about all the medicines you take: • Keep a list that includes all prescription and over-the-counter medicines, vitamins, and herbal supplements, and show it to your healthcare provider and pharmacist. • Ask your healthcare provider or pharmacist about medicines that should not be taken with ODEFSEY.
HOW TO TAKE ODEFSEY • •
ODEFSEY is a complete 1-pill, once-a-day HIV-1 medicine. Take ODEFSEY with a meal.
GET MORE INFORMATION •
• •
This is only a brief summary of important information about ODEFSEY. Talk to your healthcare provider or pharmacist to learn more. Go to ODEFSEY.com or call 1-800-GILEAD-5 If you need help paying for your medicine, visit ODEFSEY.com for program information.
ODEFSEY, the ODEFSEY Logo, GILEAD, and the GILEAD Logo are trademarks of Gilead Sciences, Inc., or its related companies. All other marks referenced herein are the property of their respective owners. Version date: March 2016 © 2016 Gilead Sciences, Inc. All rights reserved. ODEC0026 06/16
“
We need to throw away the stigma and fear about HIV testing. It’s time we make HIV testing a part of our health routine. — Jay Ellis, Actor
”
I’M
DOING IT Testing for HIV
#DoingIt Testing is Fast, Free, and Confidential cdc.gov/DoingIt
c o n t e n t s January 2017
44 Cover AIDS Activist Cleve Jones Talks with A&U’s Hank Trout About His New Memoir, When We Rise, and the Importance of Keeping Younger Generations Informed About HIV
Departments
Features 28 Gallery Artist Kelly L. Taylor Evokes Loss & Survival in Her Still Lifes 32 Daniel in the Lion’s Den HIV Educator Daniel Garza Shares His Journey of Empowerment to Inspire Others 36 Desperately Seeking Robert New York City-Based Photographer Robert Ordonez Combines Art & AIDS Activism 40 Teflon Tough With a New Film, EKAJ, Cati & Michael Gonzalez Explore Social Drivers of HIV Risk 16 Ruby’s Rap Ruby raps with Actor Jimmy Fowlie
cover photo by Sean Black
6
Frontdesk
8
Mailbox
10
NewsBreak
viewfinder 18
Just*in Time
20
Brave New World
21
For the Long Run
25
Bright Lights, Small City
26
Our Story, Our Time
lifeguide 50
Destination: Cure
51
The Whole Perspective
52
Positive Justice
53
The Culture of AIDS
54
Lifelines
56
Survival Guide
A&U Frontdesk
Cleaving to the Past
J
ones, Cleve. If you look up Cleve Jones’ name in the index listings of the hundreds of books on the history of AIDS (And The Band Played On is just one example), you will find “the founder of the NAMES Project/ AIDS Memorial Quilt.” It’s almost like looking up Moses in the syllabus of any religious studies course. His name is bound to be there. His name is that big. That’s how important Jones is to the largest AIDS memorial in the world. That’s right, if measured inch by inch, square foot by square foot, even mile by mile, the Quilt is the one AIDS memorial that hasn’t been surpassed in physical size. Even the Guinness Book of World Records lists it as the largest moveable monument in the world. It’s almost as big as Mount Rushmore when it’s fully assembled— as it was on the Mall in Washington, D.C., in 1996. No one thought that that was the last time a nation would come together in one place to grieve for the hundreds of thousands of Americans who had died from this modern-day plague. But that was the last time it was laid out in its entirety in the nation’s capital. While close to 1.2 million Americans are living with HIV in America, the Quilt is bigger in size than the Macy’s Thanksgiving Day Parade‚ for friggin’ sake. It’s that big. What I’d love to see is a sponsor or sponsors bring it back to Washington in all its pain, sorrow, and beauty—a monumental reminder that AIDS ain’t over. Yet. It won’t be until there’s a cure. It won’t be until every man, woman, and child in Africa is spared a death sentence. It won’t be until everyone is undetectable in this country. But we need to know our history. As Cleve Jones, who has long contributed to AIDS, LGBTQ, and labor activism movements, told A&U’s Hank Trout in an exclusive cover story interview. “[Y]ounger 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
AMERICA’S AIDS MAGAZINE issue 267 vol. 26 no. 1 January 2017 editorial offices: (518) 426-9010 fax: (518) 436-5354 Editor in Chief & Publisher David Waggoner
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.” His new memoir, When We Rise, helps trace this history and became the inspiration for a soon-to-air ABC miniseries. But perhaps the Quilt’s newest iteration—breaking it into smaller Quilts that are shown as small as panels in hundreds of communities every World AIDS Day—is a more effective way to engage the at-risk youth who weren’t even born when the first wave of deaths threatened entire communities in New York, Los Angeles, and San Francisco. Perhaps the reason why this “perishable” form of remembrance is so strong is that it is a visual reminder of the loved ones we have lost to AIDS; whose names are not forgotten, and never will be. Better than any history book about the pandemic, the Quilt is our ambassador from the past to this nation in the future—when it’s only a matter of time and we can write the final chapter on AIDS. Of course the history of AIDS is still being written by those living with or impacted by HIV. In this issue we feature fashion photographer and advocate Robert Ordonez, HIV educator Daniel Garza, and filmmakers Cati Gonzalez and Michael Gonzalez—all of them remind us that we are still at risk but also that this day and age offers greater opportunities to connect to care. All of our lives are living pieces of the Quilt, and every day brings a chance to rededicate our efforts to pick up dropped stitches and end AIDS, and make sure the struggle was worth it.
DAVID WAGGONER
Managing Editor: Chael Needle Senior Editors: Dann Dulin, Sean Black Editor at Large: Chip Alfred Special Projects Editor: Lester Strong Literary Editor: Brent Calderwood Arts Editor: Alina Oswald Consulting Editor: Nick Steele Copy Editor: Maureen Hunter Contributing Editors: Sarah Churchill Downes, Reed Massengill, Kelly McQuain, Lesléa Newman, Robert E. Penn Contributing Writers: Tyeshia Alston, Noël Alumit, T.J. Banks, Larry Buhl, Ruby Comer, Diane Goettel, Sally Hessney, George M. Johnson, John Francis Leonard, Angela Leroux-Lindsey, Dale Reynolds, Connie Rose, David Rosenberg, Corey Saucier, Stevie St. John, Justin B. Terry-Smith, Hank Trout, Patricia Nell Warren, Chuck Willman, Jeannie Wraight, Rob Zukowski Art Director: Timothy J. Haines Contributing Photographers: Jordan Ancel, Davidd Batalon, Mark Bennington, Tom Bianchi, Sean Black, Adam Bouska, Brian Bowen Smith, Tim Courtney, Duane Cramer, Stephen Churchill Downes, Greg Gorman, Francis Hills, Renée Jacobs, Michael Kerner, Tara Lessard, Tom McGovern, Nancy Perry, Annie Tritt National Advertising Director: Harold Burdick, Jr. Sales & Marketing: David L. Bonitatibus Advertising Sales Office: (518) 426-9010 National Advertising Representative: Rivendell Media (212) 242-6863 Subscription Info: (518) 426-9010 Circulation Manager: Robert Schelepanow Bookkeeper: Richard Garcia Board of Directors President: David Waggoner Vice President: Harold Burdick, Jr. Secretary: Richard Garcia Founding Board Members: Mark S. Labrecque, 1961–1992, Christopher Hewitt, 1946–2004, Mark Galbraith, 1962–2011 In Memoriam: Bill Jacobson, 1939–2005 Rhomylly B. Forbes, 1963–2011 • Chris Companik, 1957–2012 Nancy Ellegate, 1959–2015 A&U (ISSN 1074-0872) is published by Art & Understanding, Inc., 25 Monroe St., Suite 205, Albany, NY 12210-2743, USA. For A&U advertising information please call 518-426-9010; for subscriptions and address changes please call 518-426-9010; for letters to the editor and unsolicited manuscripts write A&U Magazine, 25 Monroe Street, Albany, New York 12210; fax 518-436-5354; or e-mail: mailbox@ aumag.org. All unsolicited manuscripts that do not have a S.A.S.E. cannot be returned and will not be acknowledged. ©2017 Art & Understanding, Inc. ALL RIGHTS RESERVED. A&U may not be reproduced in any manner, either in whole or in part, without written permission of the publisher. A&U and the graphic representations thereof are the registered trademarks of Art & Understanding, Inc., a 501 (c) (3) nonprofit organization. Individual Subscription rates: $24.95 (12 issues). Institutional rates: $80.00 (12 issues). For subscriptions outside the USA and possessions, $30.95/Canada, $49.95/international, payable in advance in U.S. currency. First North American serial rights revert to contributors upon publication. A&U retains the right to anthologize work in further issues, as well as in microform or reprinting on the Internet within the context of each issue. Statements of writers, artists and advertisers are not necessarily those of the publisher. Readers note: subjects and contributors to A&U are both HIV-positive and HIV-negative. In the absence of a specific statement herein concerning the serostatus of any individual mentioned in, or contributing material to, this publication, no inference is made with respect thereto and none should be implied. Letters written to A&U or its contributors are assumed intended for publication. Art & Understanding, Inc. assumes no responsibility or liability for unsolicited submissions and does not guarantee the return thereof. PostMaster: Please send address corrections to A&U Magazine, 25 Monroe Street, Suite 205, Albany NY 12210-2743, USA
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1 9 th Annual
FROM THE EDGE A BENEFIT FOR VISUAL AIDS Ja nu ar y 13- 15, 2 017
hosted by METRO PICTURES POSTCARD-SIZE ARTWORKS BY Kerry James Marshall ● Robert Longo Marilyn Minter ● John Baldessari Nicole Eisenman ● Mark Bradford Jim Hodges ● Julie Mehretu Isaac Julien ● Lorraine O’Grady Hans Haacke ● and over 1500 more… Artworks displayed anonymously. Artist’s name revealed after purchase. First-come, first-served.
METRO PICTURES 519 W 24TH STREET NYC PREVIEW PARTY 2017 Friday January 13 from 6 – 8
Learn more and purchase tickets at visualaids.org.
BENEFIT SALE 2017 Saturday January 14 from 10 – 6 Sunday January 15 from 12 – 4
VisualAIDS.org
x o b l i ma The Cat’s Meow
There is no doubt that Julie Newmar is a very elegant lady; she looks it all the way. I was very young back in the sixties
NOVEMBER 2016 • ISSUE 265 • AMERICA’S AIDS MAGAZINE
NOVELIST RABIH ALAMEDDINE • ADVOCATE BRUCE WARD • PHOTOG THOMAS MCGOVERN • INSCRIBE • PRODUCERS ANNE O’SHEA & BRIAN QUATTRINI
*plus A&U’s 15th Annual Holiday Gift Guide
julieNEWMAR &
JOHNnewmeye
SISTER & BROTHER UNITE IN AIDS ADVOCACY
8
Bearing the Unbearable The “Bearing Witness (To AIDS)” photos by Thomas McGovern were very powerful [Gallery, November 2016]. The two photos that really hit me were the ones that show the marchers in D.C., and the photo of the coffin being carried by a man’s friends; the people are very angry indeed. Enough said. AIDS is what it is! —Seth Tillson New York, New York
“The fight against AIDS needs more people like Julie Newmar and John Newmeyer”
STRATEGIES OF REVIVAL
Dulin, November 2016]. Dr. Newmeyer had a lot of interesting things to say in your interview. He had some very progressive views on needle exchange programs that continue to keep people from getting infected with HIV. As we know the so-called “War on Drugs” is a failure. People that are drug “infected” need to be treated like human beings not as criminals. Dr. Newmeyer says that “Julie is such a beautiful, life affirming person.” I could not agree more. She is much more than Catwom-
it seems that the world has sometimes forgotten about the pandemic until I see someone like Julie fighting for the cause. —Marge Peltier Taos, New Mexico
and Batman was definitely one of my favorite shows. I was in love with Burt Ward at the time. Batman was a great show—so many famous stars ended up on the show playing various characters. Now I can see why Julie was picked for the show, she has that sinewy, lithe, sensual look. To me she was the epitome of a cat, she looked like a cat and walked like a cat. I guess her dancing made the grade. It’s sad that she has some mobility issues, especially having been a dancer. I’m proud that she works with AIDS causes; my son died of AIDS and
In Like Flynn Jennifer Flynn Walker is the type of woman that we have been looking for [“VOCAL in New York, by Alina Oswald, November 2016]. She looks like the kick-ass woman she is. She is not afraid to look you in the face and tell you like it is. What I love is that she takes it all and deals with it all. She covers the full panoply of HIV and AIDS issues. We need more women like Jennifer to take on the big shots that don’t want to deal with AIDS anymore. Watch out Trump— she’s coming after you to deal with AIDS. —Barry Slimovitch Newark, New Jersey
Send e-mail to: mailbox@aumag.org Send letters to: Mailbox, A&U, 25 Monroe Street, Suite 205, Albany, NY 12210 Or click on “Mailbox” on our Web site’s home page: www.aumag.org Tweet Us @au_magazine Facebook: http://on.fb.me/AUFANPAGE All correspondence requires name, address, and daytime phone number for confirmation. Letters may be edited for length and clarity. A&U • JANUARY 2017
photo by Sean Black
I found Julie Newmar and her brother, John Newmeyer, very interesting [cover story, “Planting Magic,” by Dann
an! The fight against AIDS needs more people like Julie Newmar and John Newmeyer. —Lauren Laurie Richards Mobile, Alabama
NEWSBREAK The Elizabeth Taylor AIDS Foundation (ETAF) will be the Presenting Sponsor for AIDSWatch 2017. AIDSWatch mobilizes hundreds of HIV/AIDS advocates, bringing them to Washington, D.C., to meet with members of Congress to inform them about policies and resources needed to address the epidemic. AIDSWatch, which is organized by the Treatment Access Expansion Project (TAEP), AIDS United and the US People Living with HIV Caucus, takes place March 27-28, 2017. In its longstanding support of AIDSWatch, ETAF continues Elizabeth Taylor’s legacy of meeting with leadership at the highest levels to raise awareness about HIV/AIDS and encourage action to help those in need. With her powerful voice and foresight, Taylor helped destigmatize AIDS starting in the 1980s, a time when a compassionate response to individuals living with HIV/AIDS was sorely missing in both public and private spheres. She helped found amfAR, which today continues to be a leader in supporting and funding AIDS research. And in 1991, she established The Elizabeth Taylor AIDS Foundation to support organizations addressing direct-care needs and providing services for people living with HIV/AIDS, especially those in the most marginalized communities. It continues to provide grants to programs around the world and raises awareness thanks to its Ambassadors, many of whom are Taylor’s grandchildren. “Elizabeth Taylor is proof that change is made when someone speaks up from the heart and inspires others to take action. There’s no other event quite like AIDSWatch for doing just that and we are proud to continue to support it,” said Joel Goldman [A&U, June 2016], managing director of ETAF, in a prepared release. AIDSWatch trains participants on HIV research, prevention, treatment, and important policy developments, helping to fine-tune their advocacy and messaging skills in order to amplify their voice on the Hill and within their own communities. This year, AIDSWatch will focus on the pernicious effects of unjust HIV criminalization laws, which are often based on outdated HIV science and encourage stigma and unfair treatment of people who are aware of their positive serostatus. “These laws punish responsible behavior like getting tested and privilege ignorance of HIV status,” said Goldman. “This is exactly the type of issue that Elizabeth Taylor would have passionately taken on with all her might. HIV criminalization laws are counterproductive to ending this epidemic, and are not based on current science or fact, but rather ignorance and fear.” AIDSWatch will address other issues, including the Ryan White HIV/AIDS Program, quality sexual health education, housing, and ongoing federal investments in HIV care, prevention and research. For more information about The Elizabeth Taylor AIDS Foundation, visit www.etaf.org. To register for AIDSWatch, log on to: www. aidsunited.org/AIDSWatch.
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A&U • JANUARY 2017
photos by Khalid Naji-Allah
AIDSWatch & The Elizabeth Taylor AIDS Foundation Go to Washington
NewsBreak
Absolutely & Unconditionally Fabulous Hilariously quirky, toe-tap worthy and poignantly memorable is the highly acclaimed, Tony Award-winning musical Falsettos, a revival running on Broadway now through January 8, 2017. The refreshingly offbeat musical provides a glimpse into the lives and loves of a group of individuals who ultimately bend to their own definitions of family, culminating in acceptance, support, and unconditional love—the kind of “tight-knit” family that often came to the fore in the devastating early years of the AIDS crisis when those who were dying faced intolerance, stigma, and shame from not only society but also their “real” families. The early eighties were a time when the notion of family had never been more critical, a time when the pandemic had yet to claim 35 million lives, a time when many of those lives could have been saved if only prejudice did not weigh down politics. Even though the plot of the musical may have taken a different turn if written today, in the age of HIV treatments, the themes still resonate in a time when hate is trumping love. At the November 25, 2016 performance, Andrew Rannells Stephanie J. Block, who plays Trina, a forgiving, slightly neurotic talks about Broadway Cares with his Falsettos’ cast (right to and dutiful wife and mother, seeking to fulfill her own needs for a left) Betsy Wolfe, Anthony Rosenthal (holding autographed change, provides several outstanding moments including a relatable and posters for sale benefiting Broadway Cares), Christian Borle, laugh-out-loud emotional breakdown. All actors however lift some of the Stephanie J. Block, Brandon Uranowitz, Tracie Thoms. weightier topics with comedic skills and light-hearted lines. The stellar cast includes Block (Wicked), Christian Borle (Something Rotten!, Peter and the Starcatcher), Andrew Rannells (The Book of Mormon, Hamilton), Tracie Thoms (Rent), Brandon Uranowitz (An American in Paris) and Betsy Wolfe (Bullets Over Broadway). With both heartwarming and heartbreaking moments, the emotionally charged play is the creation of William Finn, who wrote the music and lyrics, as well as the book with James Lapine, who was the original director of the earlier iteration some twenty-five years ago. Pulling from their Off-Broadway one-acts to bring The March of the Falsettos and Falsettoland to Broadway, Finn and Lapine take us into the lives of a gay playboy named Whizzer, Marvin, his lover seeking monogamy, Marvin’s wife Trina, their ten-year-old son Jason, and their extended family, all set during the eighties. On the night of my attendance, headliner Andrew Rannells led the poster auction and request for door donations for leading HIV/ AIDS services organization Broadway Cares/Equity Fights AIDS, a vital nonprofit that draws upon the talents, resources, and generosity of the American theater community. Since 1988 Broadway Cares/Equity Fights AIDS has raised more than $250 million for essential services for people with AIDS and other critical illnesses in all fifty states. —Reporting by Sean Black
photo by Sean Black
In Memoriam A&U mourns the passing of Gina Quattrochi, Chief Executive Officer of Bailey House, a New York City-based nonprofit dedicated to providing housing and other supportive services to individuals living with HIV/AIDS. She died on December 13, 2016, after a battle with cancer. Started in 1983 under a different name, Bailey House was the first supportive housing agency for PLWHA in the country and early on established the “housing is healthcare” model. Currently, it provides services to more than 1,800 men, women and children living with HIV/AIDS and other chronic illnesses across New York City. Quattrochi served as CEO for twenty-five years; previously, she had been on the nonprofit’s board of directors for five years. Her impact is immeasurable and her efforts wide-reaching. Among her leadership roles, she was former president and an ongoing board member of the National AIDS Housing Coalition, a founding member of the “30 for 30 Campaign,” and was currently a member of New York Governor Andrew Cuomo’s Ending the Epidemic Task Force. For her dedicated HIV/AIDS advocacy and work, she had recently been honored by the New York City Health Department, at the unveiling of the New York City AIDS Memorial, and by Bridging Access to Care. In 2001, Quattrochi explained to A&U’s Chael Needle how everyone could understand that “the future starts with a place to live”: “I think the whole issue of comfort—it’s a human need whether you’re facing a terminal illness or you’re in perfect health. When I used to do speaking engagements in the early days, I knew that a lot of people in the audiences couldn’t make the leap to having AIDS but everybody certainly knows how they feel when they have the flu. And where do you want to be when you have the flu? You want to be home in bed. You don’t want to be out at work. You certainly don’t want to be sleeping on a subway grate... it’s a no-brainer.” For her amazing ability to turn insights into action, and her compassionate commitment to addressing the needs of people living with HIV/AIDS, Gina Quattrochi will always have a home in our hearts. For more information about Bailey House or to make a donation, log on to: www.baileyhouse.org. JANUARY 2017 • A&U
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by Ruby Comer
Jimmy Fowlie
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10,000 turkeys on Thanksgiving to a wide range of organizations, including the Inland AIDS Project, enough to feed 4,000 people. In the late evening, Jimmy and I meet at Ceilo restaurant, atop Morongo. What a sight at night! It’s a 360-degree view of the twinkling lights of the desert cities. Ruby Comer: Jimmy [who’s already seated] … lovely to meet you. Jimmy Fowlie: You too, Ruby. [He rises for this ol’ gal. Hmm, manners.] Thanks for coming here. Say, what’s the correct way to pronounce your last name? Foul-EE. I think it’s Scottish? In all honesty, I haven’t really investigated my heritage because I’m adopted. That’s interesting. [We thumb through the menu when I blurt]…HIV and AIDS. What do you think? [A bit surprised, he winces his clear twinkling-nugget azure eyes] I think about the struggle that LGBT people came through before I was born. How to Survive a Plague has to be one of the most inspiring documentaries because you see the years/decades of work that people like Peter Staley [A&U, June 2015] put in. I consider him a hero. It’s so incredible. I think about the fight, and the passion, and the equality. A first-rate reply, Jimmy. When did you first get tested? I was eighteen. I found out that a guy I had had sex with was HIV-positive, but he had never disclosed that information. I used a condom but I still tested. I was nervous sitting there in the waiting room. Although I was HIV-negative, it still impacted me a great deal. I was so grateful to have the support of the center that allowed free and accessible testing. How did it impact? It just made me realize how easily one can acquire this disease! As a young gay man
I didn’t have the capacity to really talk about these issues. It made me really compassionate to anyone who is dealing with this disease. It’s so important that we talk about it to break through the stigma. Yes, sir. I understand you are in the dating pool… [he interrupts with an over-the-top clearing of his throat]. Nope, not in a relationship! But I have this puppet that I pretend I’m dating on Instagram. [I laugh.] I’ll have to take a peek at that. Why, you’re as cute as a button, Jimmy F. I’d go for you in a heartbeat! [He breaks into a wide smile exhibiting those perfect pearly whites.] You know, it’s tough talking STDs, how do you approach the subject with a new date? I just say, “Hey, I got tested—then I say the date—and I don’t have any STDs and I’m HIV-negative.” That usually gets the conversation going, and the other person feels comfortable talking about it. Right-O. Any hesitation about dating someone who’s HIV-positive? I tried! [He chuckles.] This guy was positive and I was like so in love with him [he says loudly throwing his arms up skyward]. He was not into me, Ruby! continued on page 54 A&U • JANUARY 2017
Ruby illustration by Davidd Batalon; photo by Dana Patrick
G
o Go Boy…” is all I saw and I froze right there. Scanning the Internet one evening it was those words alone that hooked me. This broad always enjoys stickin’ a fiver down some bikini shorts! It turns out that Go Go Boy Interrupted is the name of a web series, starring Jimmy Fowlie, based on his adventures as a go go boy while he attended the University of Southern California. Beginning in 2014, the plot centers around Danny Carter, thirty, who finds himself aged out of his profession. The episodes are riotous! Hailing from Boston, Jimmy is an actor, writer, and director, having begun his career with the improv group The Groundlings. (Currently he teaches there.) Reading his résumé, I learned that the talented lad volunteers for Project Angel Food (an organization that distributes food to homebound clients). That piqued my interest even more. After contacting the thirty-one-year-old Mr. Fowlie, he requested I meet him down at Morongo Resort and Casino near Palm Springs, California. That’s ducky, as I will be in P.S. attending an event at the Desert AIDS Project (DAP). These guys do one helluva bang-up job—let me tell you! Morongo is like a diamond in the desert. The stand-alone sci-fi high-rise is like something out of The Day The Earth Stood Still. At night it sparkles with lush hues of blues, violets, and yellows. It’s a full-on resort with spa, exercise room, entertainment, restaurant, gaming, and dining. The contemporary rooms are spiffy, and I have a grand view of Mt. Jacinto from my roomy suite. Ms. Ruby likes a large bathroom and this bathroom even has a walk-in shower with a stone seat where I can park my tuckus while shaving my legs! According to the Morongo tribal spokesperson I encounter, they give more than $1 million annually to various nonprofit organizations, including churches, veterans groups, schools, food pantries, homeless shelters, and many others. One of their annual projects is giving
SOMETIMES, OUR HIGHEST HEIGHTS HAPPEN
LONG BEFORE TAKEOFF. Proud Partner of the Elizabeth Taylor AIDS Foundation.
Justin— Been a while since we last chatted. I am really interested in surrogacy, as I want a child of my own. As I explained before I am positive, undetectable for many years. Can you advise me where I can go to get this done at an economical cost? Based on my research there are a few organizations that do it, but I would rather get a referral than take what I hear online. Any advice? —Ebenezer I hope all is well. I really want to give you advice, but first I would like to start out with my own story on fatherhood. Before my husband and I got married we had a talk about children. He really wasn’t thinking about it, but I felt I had a need to procreate. So, after our talk, we decided that we would explore all options. At first, we looked at surrogacy by researching different clinics in our area. When we found one that we were comfortable with we made an appointment. We
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saw a doctor and mentioned that there might be an issue since I was HIV-positive. The doctor gave us options and mostly we didn’t like them. For instance, there is a hefty bill that comes along with trying surrogacy and being HIV-positive. So, the procedure of sperm cleansing will be very costly. Insemination of the surrogate costs about $10,000. Then you will need to make sure that the sperm has inseminated the woman; sometimes it doesn’t work the first time, which will cost more money. At the start of the process, you must find a woman who is willing to be inseminated by your sperm. You will then have to pay for her medical expenses for the entire pregnancy. Then you have the hospital expenses, as well. All in all, there is a pretty penny to pay when it comes to surrogacy. When we were looking for a company to go to that specialized in sperm cleansing for HIV-positive men it was suggested that, “some people mortgage their house to help pay the expenses.” This totally turned me off to the idea. But I think you need to go through your own journey with surrogacy. Everyone has to have their own journey when it comes to parenthood. The one solution that my husband and I came upon was going through our state’s Department of Social Services (DSS). We took a training called PRIDE training,
which was great and almost a week long. It was all about the rules and regulations of adopting or fostering a child. Our house then needed to get inspected by the Fire Marshal/Fire Commissioner to make sure it was safe to have children and the DSS had to come out to the house to tell us how many children we could have in our house (depends on the size). After this was complete we immediately got a call from DSS about a fourteen-year-old boy who identified as gay within hours of being approved because we did stipulate that we would take a LGBT youth that needed a home. Then our second son came to us because he knew of our first in high school. This is how we became parents. Many people don’t think that people who are HIV-positive can become parents. At one meeting a person asked, “How do we keep the child away from the parent if the parent is HIV-positive?” When I heard a guy ask that question, my husband had to stop me from saying something—not to mention his wife was so embarrassed. But we had to educate him on his ignorance, and so we did. Just because you have HIV doesn’t mean you can’t use surrogacy to have a child, but know that there are plenty of children out there that need a loving home. Merry Christmas, Happy Hanukkah, Happy Kwanza ,and a Happy New Year. ◊ A&U • JANUARY 2017
photo by Don Harris © Don Harris Photographics, LLC. all rights reserved
Justin B. Terry-Smith, MPH, has been fighting the good fight since 1999. He’s garnered recognition and awards for his work, but he’s more concerned about looking for new ways to transform society for the better than resting on his laurels. He started up in gay rights and HIV activism in 2005, published an HIV-themed children’s book, I Have A Secret (Creative House Press) in 2011, and created his own award-winning video blog called, “Justin’s HIV Journal”: justinshivjournal. blogspot.com. Presently, he is working toward his doctorate in public health. Visit his main Web site at www.justinbsmith.com. He welcomes your questions at jsmithco98@hotmail.com.
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Dying of AIDS
R
ightNowThisVerySecond we are playing gospel music at full volume. Which is not very loud. I have my cell phone plugged into the wall and Pandora is blasting a station called “John P. Kee Radio” because John P. Kee is the only artist that she will listen too....The Thai food arrived fifteen minutes ago and we are stuffing our faces with flat rice noodles; and raising our hands; and smiling; and dancing; and singing “Hallelujah,” the way we Black folks do. Today is a very good day! We have had so few good days. Two months ago my mother fell again. But this time she broke both her knees and both her wrists; and I fear a bit of her mind may have broken too. It’s been miserable. Can I say that again? It’s been MISERABLE!! I’ve been homeless, an intravenous drug addict, and (literally) dying on my deathbed from AIDS. But caring for my mother for this short amount of time has been the most difficult thing I have ever had to do. My heart is out of breath, my soul is saturated with sewer water, and for the first time EVER, I think that maybe things will not be “okay.” You see, not many people know this, but I am made of magic. I wear pink glittering wings underneath my skin-tight T-shirts, and carry handfuls of fairy dust inside the pockets of my homemade Daisy Duke shorts; and whenever I have ever had a problem or situation that may interrupt my carefree days of sushi, sex, and pumpernickel, I just throw a little fairy-dust on it. Someone doesn’t like me? Poof! Suddenly we are best friends and they’re inviting me to all the popular parties....My computer crashes and I can’t afford to buy my a new one? Poof! Suddenly because of tax purposes I am gifted with a new Mac Book Air and iPhone 6. I’m emaciated with a 101 T cells and fungus growing out of my mouth from a virus I got from a stranger in a bathhouse.... And, Poof, skip to twenty years later, and I am muscular and healthy (and still having sex with strangers in bathhouses). Poof poof poof! But my magic does not work on her. Never has. I’ve been sprinkling it in be-
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tween her bedding when I change and wash her sheets; I’ve been mixing it in her food when I fix her a plate and a drink before she goes to sleep; and I’ve been dusting it gently up and down her back while I carry her cradled in my arms up and down the stairs....But it does not make her smile—it does not make her see—and it does not make her broken body walk again. But she will walk again. I swear it. Because being a forty-year-old man who takes care of his elderly mother will not be my life. I’m way too cute to be that cliché. There are far scarier things in this wide, winding universe it seems than death and dying of a disease. And living with your mother is one of them. RightNowThisVerySecond I’ve been up for three days, the nurse is scheduled to come in thirty minutes, and I am running in concentric circles while my mother calls me terrible names as I try to find her favorite pair of jeans! My eyes are bloodshot, I am dehydrated and haggard, I think my hemorrhoid is acting up, and I just want to put my head under the covers and cry the way that little boys do when the dream becomes a nightmare, and the nightmare is a little too real. She has told me more than a hundred times that this is not my responsibility— that it is not my job to take care of her. That if I don’t want to do it, “Don’t do it!” And this is what you do not know: At my core I am primarily a selfish person. I am petty and superficial, and I do not believe in self-sacrifice. I believe in magic and miracles and fairy dust. And my magic has never worked on her. We scream,
shout, fight, and say things that we can never take back...But now this tragedy has given us an opportunity to finally be close. For us to finally work through our issues. For me to make us both proud and do for her what she did for me as a newborn child forty years ago. The universe has called me to grow a pair, turn the other cheek, and care for my helpless beautiful blinding mother. And I don’t want to. This is too hard. I want to rip off all my clothes, climb a barbed-wire fence, and escape across the sweltering desert. I want to stop taking my medications and have my T cells drop to zero so that I will have an excuse to not answer when she calls. It’s such a horrible thing to say but I’d rather be dying of AIDS than spending every day with my mother. (Im pretty sure God is going to kill me for that.) I think I’m a terrible person. “Coming, mother!” Corey Saucier is an artist and writer living in Los Angeles. He is a Lambda Literary Fellow in Fiction and Non-Fiction and is currently penning his first novel. His musings and wanderings on Love, Life, and Nonsense can be found at www. justwords.tumblr.com. A&U • JANUARY 2017
illustration by Timothy J. Haines
...and other fun things i would rather be doing
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The Neglect of Survivors Must End
by
Hank Trout prevention, yes! but ignoring long-term
hiv/aids survivors is unconscionable
photo © Saul Bromberger and Sandra Hoover Photography. All Rights Reserved
E
veryone knows the statistics: More than half of the 1,300,000 people in the U.S. living with HIV are over the age of fifty; by 2020 we will make up seventy percent of those infected. Many of us in the AIDS Generation, diagnosed before the life-saving antiretroviral “cocktails” became available, have lived with this virus for twenty-five, thirty or more years. And yet scant attention is paid to the unique needs and challenges of surviving with HIV into our fifties, sixties, and beyond. Scant attention, indeed. At last year’s five-day International AIDS 2016 Conference in Durban, South Africa, more than 15,000 attendees from AIDS-related medical and social services professions shared information and strategies for preventing new infections, for “ending” AIDS. I’ve spoken informally with other long-term survivors who attended AIDS2016, including activist Jesús Guillén, Let’s Kick A.S.S. founder Tez Anderson, and others. The word that came up first when I asked any of them about the Conference was “Frustrating!” Of more than 150 sessions and workshops on the latest developments in HIV science, programs and advocacy, only one program of note—a panel presented jointly by the ACRIA Center on HIV and Aging, Let’s Kick A.S.S., and others, called “Ageism, HIV and Aging”—addressed long-term survivors’ issues. Fewer than forty people attended. Let that sink in. Out of 15,000-plus conference attendees, only forty or so could be bothered to learn about issues faced by us long-term survivors. Jesús Guillén echoed that frustration. Jesús was in Durban representing the film Last Men Standing, a documentary about eight long-term survivors in San Francisco. “It was a success,” Jesús wrote, “but if we were not there, there was going to be zero exposure of our lives. Once again, I felt like we were forgotten.” The conference planned for 2018 in Amsterdam shows little promise of addressing long-term survivors’ issues. The organizers of AIDS2018 have announced a
JANUARY 2017 • A&U
contest to design the conference’s logo. Unfortunately, the contest is open only to entrants between the ages of ten and thirty! This is another back-handed slap in the face to every long-term survivor on the planet. It does not bode well for our inclusion in the AIDS2018 agenda. The situation in the U.S. is equally dire. Bizarrely, the President’s National HIV/AIDS Strategy ignores the problems of older HIV-positive Americans. The Strategy focuses upon preventing new infections and making sure that those newly infected are given access to medications. The Strategy briefly references “caring for those living with HIV” but focuses on the newly infected. Similarly, the Strategy mentions the importance of stable housing in HIV treatment, but it focuses on housing for homeless youth. The AIDS Generation is shamefully absent from AIDS policy. Let me be clear: Of course preventing new infections and “ending AIDS” are worthy, admirable goals, goals that we all share and support enthusiastically. But pursuing prevention goals while ignoring the real-life needs of hundreds of thousands of men and women who have lived with the virus for decades cannot be the solution. Yes, let’s do everything we can to prevent the next AIDS generation—but we must also take care of the first generation to survive. This care must include financial support. For example, what happens to those women and men who, on the solemn indisputable advice of doctors with death sentences in hand, opted to subsist on long-term disability insurance policies, figuring they would die before long?
Now they’re still alive, unexpectedly, and those policies will expire when they turn sixty-five. That forty to seventy percent reduction in their income will leave them destitute and in many cases homeless. Why is their housing not prioritized in anyone’s Strategy? That increased care for long-term survivors must also include more medical research into the effects of HIV on the aging body and the consequences of ingesting toxic medications for decades (an expensive venture, granted, one that might be philanthropically funded by the pharmaceutical companies for whom we have been uncompensated guinea pigs for decades, maybe?); and emotional/social support for the ongoing grief and trauma of having survived so many who didn’t. Neglecting the very real day-to-day needs of long-term HIV/AIDS survivors is simply unconscionable. But that neglect will continue until you and I stand up, shake our fists in the air, and DEMAND that our governments and our medical policy-makers listen to us and address our needs. We didn’t get access to these life-saving medications by politely asking for them and quietly waiting for them. We need to remember that. Hank Trout edited Drummer, Malebox, and Folsom magazines in the early 1980s. A long-term survivor of HIV/AIDS (diagnosed in 1989), he is a thirty-six-year resident of San Francisco, where he lives with his fiancé Rick. Follow him on Twitter @HankTroutWriter.
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YOU MATTER AND SO DOES YOUR HEALTH
That’s why starting and staying on HIV-1 treatment is so important.
What is DESCOVY ? ®
DESCOVY is a prescription medicine that is used together with other HIV-1 medicines to treat HIV-1 in people 12 [GCTU CPF QNFGT &'5%18; KU PQV HQT WUG VQ JGNR TGFWEG VJG TKUM QH IGVVKPI *+8 KPHGEVKQP &'5%18; EQODKPGU medicines into 1 pill taken once a day. Because DESCOVY D[ KVUGNH KU PQV C EQORNGVG VTGCVOGPV HQT *+8 KV OWUV DG used together with other HIV-1 medicines.
DESCOVY does not cure HIV-1 infection or AIDS. 6Q EQPVTQN *+8 KPHGEVKQP CPF FGETGCUG *+8 TGNCVGF illnesses, you must keep taking DESCOVY. Ask your JGCNVJECTG RTQXKFGT KH [QW JCXG SWGUVKQPU CDQWV JQY VQ TGFWEG VJG TKUM QH RCUUKPI *+8 VQ QVJGTU #NYC[U RTCEVKEG UCHGT UGZ CPF WUG EQPFQOU VQ NQYGT VJG EJCPEG QH UGZWCN EQPVCEV YKVJ DQF[ ƃ WKFU 0GXGT TGWUG QT UJCTG PGGFNGU QT QVJGT KVGOU VJCV JCXG DQF[ ƃ WKFU QP VJGO
What are the other possible side effects of DESCOVY? Serious side effects of DESCOVY may also include: • •
•
•
Changes in body fat, which can happen in people taking HIV-1 medicines.
Changes in your immune system. Your immune system OC[ IGV UVTQPIGT CPF DGIKP VQ Æ‚ IJV KPHGEVKQPU 6GNN [QWT JGCNVJECTG RTQXKFGT KH [QW JCXG CP[ PGY U[ORVQOU CHVGT you start taking DESCOVY. Kidney problems, including kidney failure. Your healthcare provider should do blood and urine tests to check your kidneys. Your healthcare provider may tell you VQ UVQR VCMKPI &'5%18; KH [QW FGXGNQR PGY QT YQTUG kidney problems. Bone problems, UWEJ CU DQPG RCKP UQHVGPKPI QT VJKPPKPI YJKEJ OC[ NGCF VQ HTCEVWTGU ;QWT JGCNVJECTG provider may do tests to check your bones.
IMPORTANT SAFETY INFORMATION
The most common side effect QH &'5%18; KU PCWUGC 6GNN [QWT JGCNVJECTG RTQXKFGT KH [QW JCXG CP[ UKFG GHHGEVU that bother you or don’t go away.
DESCOVY may cause serious side effects:
What should I tell my healthcare provider before taking DESCOVY?
What is the most important information I should know about DESCOVY? •
•
•
•
Buildup of an acid in your blood (lactic acidosis), which is C UGTKQWU OGFKECN GOGTIGPE[ 5[ORVQOU QH NCEVKE CEKFQUKU KPENWFG HGGNKPI XGT[ YGCM QT VKTGF WPWUWCN OWUENG RCKP trouble breathing, stomach pain with nausea or vomiting, HGGNKPI EQNF GURGEKCNN[ KP [QWT CTOU CPF NGIU HGGNKPI FK\\[ QT NKIJVJGCFGF CPF QT C HCUV QT KTTGIWNCT JGCTVDGCV
Serious liver problems. 6JG NKXGT OC[ DGEQOG NCTIG CPF HCVV[ 5[ORVQOU QH NKXGT RTQDNGOU KPENWFG [QWT UMKP QT VJG YJKVG RCTV QH [QWT G[GU VWTPKPI [GNNQY LCWPFKEG FCTM pVGC EQNQTGFq WTKPG NKIJV EQNQTGF DQYGN OQXGOGPVU
UVQQNU NQUU QH CRRGVKVG PCWUGC CPF QT RCKP CEJKPI QT VGPFGTPGUU QP VJG TKIJV UKFG QH [QWT UVQOCEJ CTGC You may be more likely to get lactic acidosis or serious liver problems KH [QW CTG HGOCNG XGT[ QXGTYGKIJV QT JCXG DGGP VCMKPI &'5%18; HQT C NQPI time. In some cases, lactic acidosis and serious liver problems have led to death. Call your healthcare provider TKIJV CYC[ KH [QW JCXG CP[ U[ORVQOU QH VJGUG EQPFKVKQPU Worsening of hepatitis B (HBV) infection. DESCOVY KU PQV CRRTQXGF VQ VTGCV *$8 +H [QW JCXG DQVJ *+8 CPF HBV and stop taking DESCOVY, your HBV may suddenly IGV YQTUG &Q PQV UVQR VCMKPI &'5%18; YKVJQWV Æ‚ TUV talking to your healthcare provider, as they will need to monitor your health.
•
•
•
•
All your health problems. Be sure to tell your healthcare RTQXKFGT KH [QW JCXG QT JCXG JCF CP[ MKFPG[ DQPG QT NKXGT RTQDNGOU KPENWFKPI JGRCVKVKU XKTWU KPHGEVKQP All the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal UWRRNGOGPVU 1VJGT OGFKEKPGU OC[ CHHGEV JQY &'5%18; YQTMU -GGR C NKUV QH CNN [QWT OGFKEKPGU CPF show it to your healthcare provider and pharmacist. Ask [QWT JGCNVJECTG RTQXKFGT KH KV KU UCHG VQ VCMG &'5%18; YKVJ CNN QH [QWT QVJGT OGFKEKPGU If you are pregnant or plan to become pregnant. It is PQV MPQYP KH &'5%18; ECP JCTO [QWT WPDQTP DCD[ 6GNN [QWT JGCNVJECTG RTQXKFGT KH [QW DGEQOG RTGIPCPV while taking DESCOVY. If you are breastfeeding PWTUKPI QT RNCP VQ DTGCUVHGGF &Q PQV DTGCUVHGGF *+8 ECP DG RCUUGF VQ VJG DCD[ KP breast milk.
You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/ medwatch, or call 1-800-FDA-1088. Please see Important Facts about DESCOVY, including important warnings, on the following page.
Ask your healthcare provider if an HIV-1 treatment that contains DESCOVY® is right for you.
IMPORTANT FACTS (des-KOH-vee)
This is only a brief summary of important information about DESCOVY® and does not replace talking to your healthcare provider about your condition and your treatment.
MOST IMPORTANT INFORMATION ABOUT DESCOVY
POSSIBLE SIDE EFFECTS OF DESCOVY
DESCOVY may cause serious side effects, including:
DESCOVY can cause serious side effects, including:
Buildup of lactic acid in your blood (lactic acidosis), which is a serious medical emergency that can lead to death. Call your healthcare provider right away if you have any of these symptoms: feeling very weak or tired, unusual muscle pain, trouble breathing, stomach pain with nausea or vomiting, feeling cold (especially in your arms and legs), feeling dizzy or lightheaded, and/or a fast or irregular heartbeat.
Those in the “Most Important Information About DESCOVY” section. Changes in body fat. Changes in your immune system. New or worse kidney problems, including kidney failure. Bone problems.
Severe liver problems, which in some cases can lead to death. Call your healthcare provider right away if you have any of these symptoms: your skin or the white part of your eyes turns yellow (jaundice); dark “tea-colored” urine; loss of appetite; light-colored bowel movements (stools); nausea; and/or pain, aching, or tenderness on the right side of your stomach area.
;OLZL HYL UV[ HSS [OL WVZZPISL ZPKL LɈ LJ[Z VM +,:*6=@ Tell your healthcare provider right away if you have any new symptoms while taking DESCOVY.
Worsening of hepatitis B (HBV) infection. DESCOVY is not approved to treat HBV. If you have both HIV-1 and HBV, your HBV may suddenly get worse if you stop taking +,:*6=@ +V UV[ Z[VW [HRPUN +,:*6=@ ^P[OV\[ Ä YZ[ talking to your healthcare provider, as they will need to check your health regularly for several months.
You may be more likely to get lactic acidosis or severe liver problems if you are female, very overweight, or have been taking DESCOVY or a similar medicine for a long time.
ABOUT DESCOVY DESCOVY is a prescription medicine that is used together with other HIV-1 medicines to treat HIV-1 in people 12 years of age and older. DESCOVY is not for use to help reduce the risk of getting HIV-1 infection. DESCOVY does not cure HIV-1 or AIDS. Ask your healthcare provider about how to prevent passing HIV-1 to others.
The most common side effect of DESCOVY is nausea.
Your healthcare provider will need to do tests to monitor your health before and during treatment with DESCOVY.
BEFORE TAKING DESCOVY Tell your healthcare provider if you: Have or had any kidney, bone, or liver problems, including hepatitis infection. Have any other medical condition. Are pregnant or plan to become pregnant. Are breastfeeding (nursing) or plan to breastfeed. Do not breastfeed if you have HIV-1 because of the risk of passing HIV-1 to your baby.
Tell your healthcare provider about all the medicines you take: Keep a list that includes all prescription and over-thecounter medicines, vitamins, and herbal supplements, and show it to your healthcare provider and pharmacist. Ask your healthcare provider or pharmacist about medicines that should not be taken with DESCOVY.
GET MORE INFORMATION HOW TO TAKE DESCOVY DESCOVY is a one pill, once a day HIV-1 medicine that is taken with other HIV-1 medicines. Take DESCOVY with or without food.
This is only a brief summary of important information about DESCOVY. Talk to your healthcare provider or pharmacist to learn more. Go to DESCOVY.com or call 1-800-GILEAD-5 If you need help paying for your medicine, visit DESCOVY.com for program information.
DESCOVY, the DESCOVY Logo, GILEAD, the GILEAD Logo, and LOVE WHAT’S INSIDE are trademarks of Gilead Sciences, Inc., or its related companies. All other marks referenced herein are the property of their respective owners. © 2016 Gilead Sciences, Inc. All rights reserved. GILC0265 10/16
viewfinder
I’m Coming Out
after the battles quieted, there was still the smoke
illustration by Timothy J. Haines
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’ve fought many a personal battle in the past fourteen or so years. I was diagnosed positive for HIV in 2003; that was tough. Just as tough was a soon to follow diagnosis as Bipolar I. There were dangerous and reckless episodes of mania (uncontrollable elevated mood), deep wells of depression, three suicide attempts, and subsequent hospitalizations. I’m medicated and well treated now, but it’s not perfect. I still struggle some days. I also had a long history of partying with excessive recreational drug use. Once I put that behind me there was a new demon, the many addictive drugs prescribed by psychiatrists and my heavy dependence and abuse. I put that behind me as well but again, I still struggle. To top off this rather gothic medical history, four years ago, I suffered a major bursting of a brain aneurysm that my highly experienced neurosurgeon says brought me closer to death than he’d ever seen. Don’t feel sorry for me though, I’ve come out the other side, stronger and tougher. These things have cost me much, a successful career in business, relationships, and a great deal of income. What I have done, slowly but surely, is build a new life for myself. There’s a new career in writing, which I love and hope to take further. I have a new relationship, new friendships. I’m a very lucky man. But, as if that all weren’t enough, I’ve chosen a dangerous path. This one could end up negating all the hard fought battles I’ve won. I would have liked to have kept it a secret, but I couldn’t hide it completely to begin with. In writing this month’s column, I hope to sound its death knell. This past summer I’ve been struggling with a dangerous habit, smoking. Sometimes a lot, sometimes a little, stopping completely for brief periods, but picking it up again. They say that we’re only as sick as our secrets, so I’m putting this out there. I’m not proud of it, I’m literally mortified as I type this. But, I haven’t come this far, and been through so much to be down for the count now. I will win this battle as well. It started slowly and insidiously, borrowing a cigarette here and there. I don’t know why I did it. I hardly enjoyed it—I
JANUARY 2017 • A&U
was too ashamed. I did smoke for a brief period in my mid-twenties but gave it up more because of vanity than anything else. It was the late nineties and, suddenly, it just wasn’t socially acceptable any longer. I admit, that’s still a big motivation for me, embarrassment, but there are more important factors at play now. First, my health, I’m living with HIV after all. Overall, tobacco use is the leading cause of preventable deaths in the United States. I think we all know the dangers. When you combine HIV with smoking, you’re adding gasoline to a fire. When a person who is positive smokes, they are many more times more likely to suffer from smoking-related, deadly diseases such as chronic obstructive pulmonary disease, or COPD, heart disease, and stroke (oh, remember that aneurysm?), as well as lung cancer, head and neck cancer, and cervical and anal cancer. HIV-positive individuals are already at higher risk for anal and other cancers. Then there are the HIV-related diseases such as thrush, hairy leukoplakia (white mouth sores), bacterial pneumonia, and Pneumocystis pneumonia, just to name a few. The risks are greatly increased. Overall, smokers with HIV lose more years of life to cigarettes than the disease itself, even when their HIV is under control and undetectable through medication. It’s the perfect storm. What’s really troubling? The rate of smoking is two to three times higher for individuals with HIV. That’s a startling statistic, one I was shocked to learn when
researching for this piece. But I can do it. We can do it. What I won’t do is be motivated by a sense of shame. As a younger man, I let shame and a sense of inferiority motivate me far too often. I strove for the perfect body, the great career, the perfect boyfriend, all because I never thought I was good enough. Not anymore. I’m going to let common sense drive me this time as well as a healthy desire to keep living and survive. I knew and witnessed too many people whom I loved go far too soon. They didn’t have the luxury of choosing to live. It just wasn’t an option in the earlier days of the plague. I’ve overcome a lot so far, and I’m not going to give up now. Individuals with HIV are under more stress, making it harder to quit, but we can do this. Here are some resources: • The CDC has a helpline: 1800-QUITNOW • www.quit.com • www.BeTobaccoFree.com • www.smokefree.gov Or, simply Google ‘HIV smoking’ for more information and help. Better yet, have a conversation with your healthcare provider or social worker. John Francis Leonard is an advocate and writer, as well as a voracious reader of literature, which helps to feed his love of the English language. He has been living with HIV for thirteen years and he is currently at work on his first novel, Fools Rush In. Follow him on Twitter @JohnFrancisleo2.
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viewfinder
The Stone Refused
I
was recently watching a video that I was tagged in by a good friend, which showed his grandparents discussing the movement with none other than James Baldwin, or Jimmy as his folks referred to him. It was a glimpse into the past, of what it looked like to break bread while discussing the oppression, racism, and disdain for a country we were never meant to fit in. I was taken aback and almost brought to tears watching as I heard one of the people in the room state “the only reason we elect niggers into office, is to be the antagonist on our behalf.” These words shook me to the core, not because I disagreed, but because I fully understand the sentiment and at times questioned what my and others’ place in the room was meant to be as black HIV activists in a highly politicized pharmaceutical-driven world of HIV prevention and treatment. When I think about the past, I think about how many lives were lost that didn’t have to be. I think about all the “what ifs” that should’ve been addressed before the epidemic became the epidemic that destroyed so many communities. That past however is what created what many of us are able to enjoy today. Many of us who are currently living with HIV or working in the field know that we are truly our ancestors’ “wildest dreams.” We went from a nation that was afraid to utter the letters H-I-V to one where many of us can live out and openly with our status as productive members of society. This does not mean that everything is okay, though. When I look at the epidemic and how it still adversely affects people who are living in the south in comparison to those that are living in the north, that is a problem. When I see the archaic criminalization laws that come along with being sexually active HIV-positive individuals and how they adversely affect black and brown people in comparison to our white counterparts, I know there is still more building needed to be done. The problem is that many think we should be grateful for what we have, in comparison to what the ancestors of HIV had, those who long wished for the simple liberties of just being alive. For me I understand this notion, but also realize that it isn’t enough
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to just be happy taking a pill a day and seeing a doctor every three months. I know that it is about the totality of the lived experience and that anything that makes that experience less than that of an HIV-negative person is worth fighting for. For that reason, some of us become the stones that the builders often refuse at the beginning. They look at us and see the direct correlation to our past ancestors of the ACT UP movement, those same people who were willing to storm the gates of the White House and toss the ashes of their loved ones on the pristine grass as a reminder of what inactivity looks like when people are dying. November 9th of 2016 became that day for many of us. For me, it was the first time that I realized that as hard as I and others had fought, if we didn’t pull on the legacy of our past to continue this fight forward we could easily be set back thirty years in this movement. A President-elect with no strategy for HIV is a recipe for disaster if we become content with “how far we have come.” When I look at the past, reading and listening to the words of Marlon Riggs, Essex Hemphill, and so many others, I know the greatness from which I come and why it’s important to not take everything given as “equality” that happens to lack the “equity” we deserve as black people effected and affected by the epidemic. As a black member of the lgbtq community I have faced many challenges based on my intersectionality, on not necessarily
fitting into the society standards of accepted assimilation. These intersections that once made me different and ashamed I now embrace, knowing that I come from a past built on the counternarrative and that it is now my job to do the same as those before me and use my words as ammunition toward change. I sometimes think about who will say that they are building on the past, and it is me they are considering as the shoulders on which they stand. Whether I did enough work to make sure that the future generation had it a little bit better than I may have had. For that, I continue to build upon the past not just in admiration for the work they did, but in continuation of a fight that I hope one day ends with me. As the story goes, the stone refused becomes the cornerstone and I am truly happy if that be my ending. George M. Johnson is an HIV advocate who works for Us Helping Us, People into Living. Inc., located in Washington, D.C. He has written for Pride.com, Musedmagonline.com, Blavity. com, Rolereboot.org, and Ebony.com. Follow him on Twitter @IamGMJohnson. A&U • JANUARY 2017
illustration by Timothy J. Haines
why i build upon aids activism’s past
Bringing hearts together since 1998
P zMatch.c m
RISK of DIFFERENCE The
Artist Kelly L. Taylor Creates Unexpected Communities by Chael Needle
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Top: The Brief Madness of Bliss, 2014, oil on canvas, 30 by 24 inches Right: Conversations with Lilly, 2014, oil on canvas, 36 by 24 inches
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e expect artists to take risks in their work, but society forgets (or is unwilling) to protect their lives from risk. The recent, tragic Ghost Ship warehouse fire in Oakland, California, that took thirty-six lives at an electronic music party in the makeshift living space reminded me of the early days of the AIDS pandemic, when people in urban areas who had banded together to create community were suddenly torn apart. Many died; some soldiered on, expecting to die. In the midst of decimation, community was strengthened, ultimately, eventually. It seemed, then as now, that people had found a space where they could understand difference as an asset rather than a liability. Instead of the safe route of assimilation and maintaining the status quo, they took the risk of highlighting difference, despite the threats to livelihoods and lives. Artist Kelly L. Taylor knows well the risk of difference, and the pressures to sidestep it. “There seems to be a simple solution: just get a ‘real’ job and forget all that ‘artist nonsense’! I’ve tried, a lot of artists try, to conform to society’s expectations and be a good little worker and a ‘productive member of society.’ Then we find ourselves slowly going crazy within the confines of a cubicle, wondering why we are so ‘bad’ and can’t fit in,” says the Greensboro, North Carolina-based artist. “It’s because we’re wired differently. We have different priorities and values. If artists could quit being artists, we’d do it in a minute. We don’t choose who we are. We’re made this way, born with a certain predisposition towards a different life. Sound familiar?!” she asks, referring to the kinship among the LGBTQ community and artists. “It makes me wonder why some careers are rewarded with money and prestige (like doctors, lawyers, etc.), while others are shunned and shamed.” Taylor’s response is a proactive, self-empowered approach. “I figured the only solution is that we take care of each other. And instead of wasting all the effort trying to convince the world that art is important and artists are worthy of respect and compensation for their work, we need to look at our fellow artists, or outcasts (anyone who doesn’t quit fit in), and just come together and take care of each other. That’s why we end up living in old warehouses and in commune-type situations, so we can pitch in a take care of each other inexpensively. The art community A&U • JANUARY 2017
A&U Gallery
Miss Kitty and the Not-So-Cheerful Cherub, 2013, oil on canvas, 40 by 16 inches
The Father Prepares His Dead Son for Burial, 1991, gelatin silver print with hand-applied text, 4 1/2 by 7 inches (image); 11 by 14 inches (paper) ©Duane Michals. Courtesy of DC Moore Gallery, New York.
and the LGBTQ community overlap, the lines are blurred, we’re all the same. That’s why I’ve always been drawn to the creative community, where nobody minds how you want to look, what you want to do with your body and who you want to share it with.” Taylor tended to her creative spark from an early age.“Remember in the eighties when we worked so hard to defy the labels and just be ourselves and do what we wanted to do outside of the expectations of society and family?” But the 1980s, especially for a teenager, were threaded with fear. “At one time it was the threat of nuclear war that would keep us awake at night worrying. That fear was replaced by the fear of AIDS. After high school the distant fear became real when I watched a dear friend of mine waste away and die, struggling with AIDS. The realization that I slept with someone who slept with someone who slept with someone who contracted HIV made it all very real and very scary.” The fears need not stop us from living, creating, or fighting back, Taylor believes. “I’m a proponent of safe sex, women’s rights, LGBTQ rights, and am outspoken about these issues when I come across someone who needs to be educated about them, who needs a nudge to open their minds. Although I haven’t participated in any Walks or awareness activities recently, I feel that will be a necessary part of asserting our presence and exercising our rights in the next four years—during the upcoming nightmare-come-true Trump administration.” She continues: “I donate to Planned Parenthood. I voted for Hillary. I’m ready to stockpile the Plan B pill and give it away like candy [in the face of defunding]. And condoms should be free, not kept locked up behind the counter in drugstores. It just blows my mind the way some people spend so much energy trying to control other people and what they do with their bodies!” Taylor, who holds a BFA from Guilford College, where she dual majored in Art (with a painting focus) and English, has been widely exhibited and is currently represented by Delurk Gallery in Winston-Salem. Early inspirations were Keith Haring and Basquiat: They “made us believe anyone could be an artist, even me,” she says. “Now I admire the work of Vermeer, Van Gogh, Hans Hofmann, Walter Tandy Murch, Remedios Varo. Sometimes I try to paint like Tom Waits sings—full of texture and shadows, sad and happy at the same time.” Her series of still lifes are a case in point, “full of texture and shadows, sad and happy at the same time.” A cherub gambols amid toys. A stuffed animal bunny poses with a skull. Her paintings seem to understand ephemera as treasure. There are no people represented, except indirectly, and so there are people everywhere. These are strange, unexpected communities, where the softness of life coexists with the hard and mechanical, where loss is palpable, but so is survival, and where difference becomes a risk worth taking. Chael Needle: What attracts you to still lifes? Kelly L. Taylor: I used to be a strictly abstract expressionist painter, letting my emotions direct my work and deliberately avoiding the creation of representational images. My fiancé, Jeff [Taylor, also an artist], and I used to scout estate sales,
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A&U • JANUARY 2017
A&U Gallery yard sales, and antique shops for random, weird, interesting vintage and antique things. We would collect and display all of the things we fell in love with in our apartment and our studios. After Jeff’s death, I cherished everything he left behind. I moved into his studio and painted, surrounded by his things. The items around me influenced the expressions in my abstract work. Then during a painting course I was taking at college, we were required to do a still life painting. I chose some of Jeff’s things and set up my still life in honor of him. And I fell in love with examining and reproducing objects; I got lost in painting the details. I found I could express myself and tell stories through still life painting. It helped things feel okay again. It helped me say things I had trouble speaking about. I started to examine the significance of objects, what they hold, like energy, or something, from the person who once owned and loved them. I thought of how we construct a person from the things they leave behind. That reminds me a lot of the AIDS Quilt. It helped a lot of people not only honor their loved ones with objects they left behind, but also say things they had trouble speaking about. Yes, like the AIDS Quilt, which is fantastic in the way it brings people together to commemorate loved ones and to record the names that will no longer be spoken by some because of a senseless stigma, or because our culture does not support the idea of grieving. But I don’t usually incorporate the text of the name in my pantings. Although I believe that saying the name of your deceased love one is important, I leave the narrative of my paintings slightly ambiguous; I think death is a universal thing so most people can identify with my work, even if they don’t want to. I notice that your paintings incorporate skulls alongside more everyday objects. Do you feel our culture tends to want us to do the opposite—separate the living and the dead? And if so, what’s your take on that? Our culture definitely wants us to separate the living and the dead. It seems impolite to talk about death. It scares people, makes them uncomfortable. And instead of trying to understand it, and accept it more, most people pretend it doesn’t exist, like it’s not the inevitable. And the way people insist that death is the absolute worse thing that can happen to a person is interesting to me. Yes, saying goodbye to someone you love dearly is the hardest JANUARY 2017 • A&U
thing in the world, but the actual death is an end to suffering, so, in that respect, it’s a positive thing. To some people the idea of death is a comfort. Like the AIDS Quilt maybe I should be more deliberate, more flamboyant, about the name in my work: Jeff. The name, the person, who is most present in my work. Jeff struggled with addiction and depression. He also had hepatitis. He could have just as easily contracted HIV. And as I understand it, the suicide rate among people with AIDS was pretty high at one point. There are connections here.
satisfied with the composition. Then I play with the light on the objects to create the shadows. I like to add to the narrative with the shadows, suggesting things through the shapes and darkness and color of the shadows and through the areas I choose to highlight. What’s next for you? I just finished a kind-of collaborative project—a series of self-portraits that include my tattoos done by a tattoo artist friend who owns a tattoo shop/gallery. I’m displaying this series there during
I’m sorry for your loss. However, I do like the ambiguity, and the surprising juxtapositions in your still lifes as well. Could you describe your process in composing a piece like Miss Kitty? Do you scout for objects and then try different combinations? I’m always scouting for objects at yard sales, antique stores, and estate sales. I especially like estate sales because the items still have a lot of the recently deceased owner’s energy in them, or so it seems. Walking through an estate sale house, you can really get a sense of who the Lucky Doll, 2016, oil on canvas, 24 by 20 inches person was (is) and connect with them through the December. I’m also showing work in things they left behind. various places around the Triad area of So I bring home the objects that North Carolina. I’m drawn to. I usually live with them, I recently received a grant from Artsand look at them, for a while before I’m Greensboro and I’m using the grant to compelled to paint them. Sometimes I get further my study of traditional oil painting a spontaneous picture in my mind of two materials and methods. I’m experimenting objects fitting together and I paint them with various mediums and varnishes in that way and wonder what it could mean. When I want to tell a specific story, I order to make the colors richer and the choose objects from the things I’ve collectfinishes more consistent in my paintings. ed to symbolize parts of the story. Sometimes I combine photographic references For more information about the work of Kelly L. with real objects to create a painting. Taylor, log on to: www.paintingpoppy.com. I set up the objects, play with different combinations, configurations until I’m Chael Needle is Managing Editor of A&U.
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Daniel in the HIV Educator Daniel Garza Shares His Struggles & Triumphs in His Quest to Stay On-Message and On Top of His Health by John Francis Leonard
photographed exclusively for A&U by Sean Black
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any of us have struggled in life. Certainly, many of our readers have faced the realities of living with HIV/ AIDS, as well as the host of ancillary conditions and problems that come after one’s diagnosis. What’s really remarkable is how many of us survive the news when we first receive it as well as the additional challenges that are sure to come our way. What’s even more inspiring is how many of us go on to triumph, to take these obstacles and turn them into accomplishment. Daniel Garza is one of those people. He’s survived many struggles that would fell the best of us and gone on to make a difference in the world. With strength, determination, and a lot of guts he has triumphed, all the while keeping his positive attitude and generosity of spirit intact. I keep thinking that “taking lemons and making lemonade” is such a tired old trope, but, in thinking about his personal story, it is just so appropriate. At the age of three, Daniel and his family left their home in Mexico and emigrated to Dallas, Texas. His was a typical Mexican Catholic upbringing in many ways. He was the youngest child, the only son, with two elder sisters. Being the only son in a Mexican family, there is pressure. Being gay isn’t always welcome news in a culture that puts such emphasis on traditional masculinity. It took years for his parents to adjust. His parents were either disappointed with him, or blamed themselves. Daniel was always different from the other kids. “I liked Tonka Trucks and Barbie dolls,” he recalls wryly. “I pretended that my Barbie dolls were truck drivers.”
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He began to realize he was gay around the age of five. The other kids sensed that difference. From an early age he stood out. “I wasn’t into sports but I was pretty smart. Just pretty lonely, I learned to be alone at an early age, bullied quite a bit, sexually abused by my bully.” As a young boy, he learned to defend himself with his words and his logic. By the sixth grade, he’d had enough. He asked to move and finish junior high and high school while living with one of his older sisters who had returned to Monterrey, Mexico, the city of his birth. Things got easier there. The other kids attributed his being different to having lived in the States. “He is just eccentric,” they’d say. It let him relax a bit. By the time he came out during his last semester of high school, he was well liked and his many friends rallied around him. It was a happy time for Daniel, but all was not perfect. At the age of fifteen, he began a long battle with alcohol. It would stay with him, through good times and bad for
about twenty-one years. Back in Dallas at the age of eighteen, he encountered the man who would change his life forever. Getting off the bus and walking the few blocks to a cousin’s home he would see a man. As it’s been with gay men since the dawn of time, there A&U • JANUARY 2017
Lion’s Den
was a pull, an attraction. The man eventually introduced himself and invited Daniel in. Their physical relationship began and continued, happily for both, but there was something different about the older man. “I remember one time we got naked,” recalls Daniel now without irony or rancor, JANUARY 2017 • A&U
“…the blotches, and not knowing what they were. Not wanting to say anything, we continued to have sex.” The affair continued; he’d call before getting on the bus so that he’d be expected. Then one day, someone else answered the phone. Nonplussed, Daniel hung up. Walking by the man’s
house on a subsequent day, he summoned up the courage to knock. The man who answered the door informed Daniel that his friend had died the week before. It was the very last years of the eighties, the initial decade in which AIDS flourished, but Daniel was naive to what was happening
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around him. Seeking closure, Daniel has assigned becoming positive to this time, person, and place. That way, he doesn’t need to constantly worry the facts of how or why. He’s gained closure. This is a place in his story where Daniel’s remarkable strength and self-awareness shine through. Looking back, he’s not angry at this man. His only anger now is from regret at not having been able to know him better. “It’s more about me than him,” Daniel tells me now. “I don’t want to carry that around. It happened because of him. But if hadn’t been for me being positive, a lot of great things that have happened in my life wouldn’t have happened.” It’s no coincidence that at this same time, the other disease with which he struggled, addiction, reared its ugly head again. At this time, something new, drugs, entered the picture. He partied hard and often, the “happiest miserable person in the room.” On the surface he was the life of every party, but it was hiding deep feelings of pain and insecurity. He went from relationship to relationship, long-term commitments eluded him. He used drugs and alcohol to mask the pain of his failed relationships as well as to just fit in. When he was about to turn thirty, the other shoe dropped. Chronically under-
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weight and sickly, he initially blamed his hard-partying lifestyle. A caring boss and friend in the restaurant at which he worked sat him down and essentially fired him. He would take him back, but only after he sought help. Daniel wound up in hospital with 108 T cells and weighing 110 pounds. The news he had avoided for years was now there in black and white. He had the frighteningly real diagnosis of AIDS. “Oddly enough, as a kid, I never saw me going past thirty years old. I always thought I would die at thirty.” In one way, it was a call to action, launching his long career as an activist and educator. In another way, it gave him the excuse to continue to use. His parents and family, who had just begun to come around to his being gay, were ill-prepared for an AIDS diagnosis. Daniel found himself lacking the adequate knowledge and tools to allay their fears. He got involved with HIV advocacy and outreach, learning as he went along. He ended up volunteering at an agency where he himself had gone to learn about his disease. He stayed in Houston for twelve years. He worked for Southern Texas organizations such as The Valley AIDS Council, The Thomas Street Clinic in Houston, The Houston Ryan White Planning Council, and Child Pro-
tective Services of Houston. He was now an activist, an HIV Outreach Ambassador, he was an educator for youth and families. Ironically, he went back to college and studied to be a drug and alcohol counselor while still using himself. Eventually, he sobered up and in 2009 moved to Laguna Beach, California, where he still resides and is busier than ever making a difference. He wears many hats and works for many prominent Southern California organizations. Daniel is an AIDS counselor and educator, and he tests and certifies other HIV/AIDS counselors and educators. He is an Outreach Ambassador and public speaker for the University of California, Irvine, and Shanti Orange County. For AIDS Services Foundation in Irvine, California, he provides volunteer testing as well as counseling. A particular accomplishment for him personally is his tenure as Chair of the Laguna Beach HIV Advisory Committee, an organization that advises his City Counsel on HIV and AIDS related policies and services. With grit and passion, he is busy fighting in the trenches of HIV/AIDS activism everyday. He shares his story with students, from junior high all the way to those doing graduate work in medicine, on their way to becoming the next generation of physiA&U • JANUARY 2017
cians. They are not sugar-coated, the stories he shares. He dispels the current myth many have about managing living with HIV, that one simply pops some pills and everything is better. “I let them know all the complications that come with it, all the side effects. All the extra surprises you get every year.” He is a witness and advocate for the those of us who’ve been living with HIV long-term. His story has changed over the years. Daniel says, “The way that I teach is different [now]. I have to come from, I hate to say a fear tactic, but there is a little bit of fear I put into kids.” In 2015 he received a diagnosis that changed his life yet again. Seeking treatment initially for a hernia and chronic constipation, a mass was found during an anal check. His colo-rectal doctor confirmed the worst. It was anal cancer, HIV-related anal cancer. He was diagnosed on Cinco De Mayo at forty-four years of age and soon began months of chemotherapy and radiation. I first encountered Daniel at the conclusion of his treatment. He interviewed me for his popular podcast Put It Together, where we talked about my writing and work with this magazine. I would never have guessed he was anything but the picture of health. He was positive, funny, and upbeat. Meanwhile, his body was debilitated by treatment. He was underweight, had lost his hair and much of his energy. The cancer and treatment caused a lot of damage. There were a lot of unpleasant accidents and smells; he was dependent on adult diapers. A fistula, which is a hole in his inner rectum to the outside of his body, developed. The Monday before Labor Day, an artery in his rectum burst. He was at the home of his partner, Christian, and when he went to take a shower, his diaper was full of blood. “The EMTs told Christian that five more minutes and I would have died.” Luckily, Christian’s home was a few blocks from the hospital, “Any further, and I wouldn’t have made it.” Arriving at the ER, his hemoglobin was so low, the nurses were shocked that he had made it alive. “I saw a light,” Daniel recalls now, “there were a lot of very spiritual moments that day.” That April, he had colostomy surgery and was fitted with a bag because the wounds just weren’t healing. In yet another show of spirit, he calls his bag Tommy. He points it out when he JANUARY 2017 • A&U
speaks now by tapping against it under his shirt. He has a video journal on YouTube, one of many he does, called “A Bag Named Tommy.” He’s not in remission yet, but he’s on his way. His journey and struggles have taught him a lot. “I’ve learned that my mind is a lot stronger than I give it credit for, my body is a lot stronger than I give it credit for,” he says with much spirit. Many times he’s made the choice to be out
having fun or doing the work that he loves despite being tired and in pain. It’s that, or stay at home tired and in pain. “I try to teach that to the younger kids,” he says “Let your mind push you! Live!” John Francis Leonard is an advocate and writer, as well as a voracious reader of literature, which helps to feed his love of the English language. He has been living with HIV for thirteen years and he is currently at work on his first novel, Fools Rush In. Follow him on Twitter @JohnFrancisleo2.
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DESPERATELY SEEKING
ROBERT New York City artist and activist Rob Ordonez talks about coming to America, HIV, art & activism Texts & Photos by Alina Oswald
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hroughout the centuries, immigrants (most of them, I believe) have considered America a beacon of hope. Some have reached her shores in search for a better life for themselves and their families; others, to prove themselves to themselves and their families. Most immigrants look for new beginnings in the New World they hope to call “home”—most immigrants, but not all. Rob Ordonez came to the States in 1998, at the age of twenty-five. He was not seeking a new beginning, but rather spending the last years of his life in a country he’d known, until that point, only from afar, through movies and books. If the name Ordonez [pronounced Ordóñez] sounds familiar, it’s because many might have seen his artwork at the Lesbian, Gay, Bisexual and Transgender (LGBT) Center, GMHC, the Leslie-Lohman Museum of Gay and Lesbian Art in Manhattan and other venues; or maybe they’ve seen Rob, himself, as captured by many artists, including photographer Lester Blum [A&U, August 2016]. Rob Ordonez is a street and fashion photographer, actor, model, and also HIV activist living and creating in New York City. But his story
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doesn’t start in New York City, but rather south of the U.S. border, in Mexico. Ordonez was born in Mexico City. His family calls him Roberto, but here, in the States, he goes by Robert or Rob. He comes from a very large family (nine children), and also from a very conservative family. “My dad and all my brothers were very macho,” Ordonez remembers his childhood and teen years, as we chat in my studio. He remembers his father was very controlling and demanding. “They didn’t know that I was gay,” he adds. “I had girlfriends to pretend that I was straight. You had to have girlfriends, and boys on the side. The girls were very religious. And we’d say, ‘we have to save ourselves for marriage.’” And Ordonez would use that as an excuse not to take relationships to a next, more intimate, step. Ordonez attended an all-boys Catholic school. Classmates “would call me ‘faggot,’” he says. “I guess they suspected it [that I was gay].” Ordonez pauses for a brief moment, as if pondering on what or if he was going to say more. “I used to be bullied in school,” he adds, “but I wouldn’t tell my parents. I would fight back. And when the whole classroom was bullying me, I would just cry and take it.”
As time went by, the bullying did not stop at school, neither did the pressure he was living under at home. “I was a very depressed teenager,” Ordonez says. “I was in the closet because I was gay.” The depression drove him to the edge. He even considered suicide. “In Mexico we are allowed to carry guns,” Ordonez explains. “We all have guns. And so, I thought maybe I’m just going to shoot myself. Thank God I didn’t do it!” In 1996, Ordonez was dating a flight attendant. The condom broke. They went to get tested for HIV. The flight attendant tested positive. On December 20, 1996, Ordonez received an HIV-positive diagnosis, too. He still recalls how it felt receiving the news. “I had a panic attack in the clinic. I kept asking ‘Are you sure? Is it not a false positive?’” It turned out that it was not a false positive. “I was so scared. I remember I sat in my car and looked at myself in the rearview mirror. And I felt that the light in my eyes just [went out], as if a part of me just died.” While the HAART treatments were made available during the mid-nineties, in 1996, AZT was still the main medication available to many of those living with HIV. It was “really bad for you, and it was expensive, too,” Ordonez says, speaking of AZT. “So, I didn’t want to take [AZT]. I tried natural medications [instead].” A friend had told him about a doctor who was using holistic, natural ways to treat HIV. Ordonez soon discovered that these HIV treatments involved electric shock, having the patient take “natural pills” every several hours or spend about twenty minutes smelling a mixture of water with a drop of the patient’s own blood, and everything in between. “They were very interesting treatments and his office was packed,” Ordonez says. “I even tried Reiki. And I [remember I] would go to sleep during the sessions because [I’d heard that] the human body is healing when you sleep.” But despite all treatments, deep inside, Ordonez could feel that he was losing his battle with the virus. He felt like he was dying. And, at that time, he had no choice but to face his battle alone, because he couldn’t tell anyone about what he refers to as his “dark secret.” And so, he found himself locked inside a reinforced closet— he couldn’t let people know that he was gay, and after sero-converting, that he was HIV-positive. In 1998, doctors gave him only five years left to live, and so Ordonez decided to run away from home and do what he’d
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never done before—travel the world. “I took my mom for dinner [just before I left]. And I knew that that was a goodbye dinner. I didn’t tell anybody [that I was planning to leave the country],” he recalls. “I just disappeared.” (His three best friends drove him to the airport. After his disappearance, his brothers ended up having a long chat with one of these three friends, who in the end had no choice but telling them the truth.)
Ordonez knew that he was going to miss his family, but he packed three suitcases and $9,000 (the limit that you could bring in to the States at the time, as a nonresident), and went to San Francisco. During his ten-day stay in the City by the Bay, he got his first tattoo and dyed his hair black. But after a few days, he found himself running into the same people. And so he traveled to Chicago where he stayed for yet another couple of weeks. He loved it, A&U • JANUARY 2017
but his heart was set on New York City. “I love Madonna,” Ordonez says with a smile. “And I saw this movie, Desperately Seeking Susan, and I said [to myself ], I have to go to New York, desperately seeking, hmm, Robert.” In New York City, he started doing “drugs, sex, and rock-n-roll”— dancing, and drinking, tattoos and piercing, as signatures of his rebellion. “Tattoos are beautiful. They make you unique and decorate your body,” Ordonez explains, showing me the ink on his arm. “I was doing all these things,” he adds. “I went to Roxy and Splash [bars in New York City]. I was there all the time, hooking up with guys. And you know what? Unfortunately nobody would ask [about my HIV status].” One night, at Roxy, Ordonez met someone who made him reconsider his options in life. “I told him I was HIV,” Ordonez says, “and he told me, ‘You know what, you should take care of yourself.’” When Ordonez mentioned that he was against taking AZT, the other guy pressed on, encouraging him to go to GMHC and “see what happens.” The encounter turned out to be an eye-opening experience for Ordonez. “That guy scared me [in a good way],” the artist says, nowadays. “He was like an angel.” Ordonez did end up at GMHC, and not a moment too soon. He got his blood work done. The results were worrisome—his HIV diagnosis was about to turn into an AIDS diagnosis unless he started treatment right away. So Ordonez decided to go on medications, but starting on a regimen turned out to be easier said than done. That’s because he had allergic reactions to most of the anti-HIV JANUARY 2017 • A&U
medications. Some meds would cause him to break out in rashes from head to toe; others, to throw up “like crazy” or get dizzy. “I had to stop [taking] medications,” he says. “I went to hell and back trying to find the right meds.” So, finally, in 1999–2000, doctors put him on Trizivir, a three-in-one medication that seemed to work. Ordonez also went to support groups several times a week, but found them rather depressing. And yet, while attending these support groups he got to meet nice people, and also made friends. That was important, especially for someone who was relatively a newcomer to the city. Looking back, all these experiences have helped shape Rob Ordonez into the person he is today—an artist and activist whose name resonates in artsy and fashion-centric circles in New York City. Looking back, he’s enjoyed his “amazing journey” and the chance to follow his dreams. “Maybe the best thing that has ever happened to me was HIV,” he says. “Because before [my HIV-positive diagnosis], I wanted to die. Afterwards, I wanted to live. [My seroconversion] was like an eye-opener.” Rob Ordonez might have become a New York City artist and activist, but he has always been, always will be, a part of the Latino community. And, hence, he has a unique perspective of how to talk to members of his community about the machismo culture maybe forever associated with this community, and also about how that culture might relate to HIV and AIDS. “I think most Latinos, young people in general, are afraid to get tested for HIV,” Ordonez says. And when they test positive for HIV, “they keep it a secret until they get sick, because they [fear that their families would kick them out].” The artist also believes that the machismo culture helps promote the fear of coming out and that, in turn, increases one’s chances of getting involved in behaviors that might end up leading to an HIV-positive diagnosis.
“That’s what happened to me until I was twenty-five,” Ordonez says, referring to how the macho culture affected him. Nowadays, Rob Ordonez looks back and almost smiles, thinking of those early days. Nowadays, he is undetectable, and thriving as an artist. He’s also a Visual AIDS artist who does his part fighting the epidemic by telling his story or creating HIV-inspired art, in hopes of educating others about the virus.
Maybe, at one point in time, Rob Ordonez was desperately seeking himself, desperately seeking to come out and be himself. During the process he rediscovered hope, the will to live, the freedom to be himself, and also to create art. He also discovered the power of love. This past September, Rob Ordonez started a new chapter in his life—he married the love of his life. And his large family came to celebrate the union. And on December 20, 2016, two decades after his HIV diagnosis, he opened a bottle of champagne and celebrated life. After all, “El tiempo Es el major regalo de Dios” or, as the Spanish saying goes, “Time is God’s best gift!” Visit Rob Ordonez online at http://robertordonez. yolasite.com/ or on Visual AIDS, at https://www. visualaids.org/artists/detail/rob-ordonez. Alina Oswald is Arts Editor of A&U.
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N O L F TE UGH TO
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ecoming a fan favorite, EKAJ is continuing its little-engine-thatcould cruise up the independent film circuit-mountain. EKAJ (Jake in reverse, presumably named for the actor Jake Mestre portraying the gender-fluid teenage lead) is a raw, colorful, and all-too-realistic glimpse into the hazy lives of two drifters. Ekaj and Mecca, his hustler sidekick (played by actor Badd Idea), forge a friendly bond on the streets that ultimately comes a little too late. The film chronicles the aimlessness of these two wanderlusts seeking respite and finding patches of trouble while Mecca struggles with AIDS. The film is poignant in its ability to tell their stories without judgment punctuated with interstices of artistic creativity, like an homage to twentieth-century figurative painter Egon Schiele, known for addressing sexuality in a brash manner and beauty in all of its flaws. The melancholy and sad trajectory of the film is palpable and necessary, yet its creators imbue the journey with a faint and sincere sweetness. “The film EKAJ is meant to be an opportunity for kids from the other side of the tracks to work in a creative project,” shares director Catalina (Cati) Gonzalez, an acclaimed fashion
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photographer whose talents radiate from the screen in rich, painterly colors and dreamy vignettes. She goes by the name “De La Gata Real” as the cinematographer of the film and is joined by partner and film editor Michael (Mike) Gonzalez, who lost his mother to AIDS as a child resulting in a number of years on the streets himself. Interspersed with hazy self-reflective moments, the art piece is furtive ground for pondering the dilemmas of this and future generations of youth, particularly those who identify as LGBT, with a subtle critique on our present-day, ill-equipped health, welfare and educational systems, a situation compounded by a tremendous lack of guidance by parents, teachers and other responsible adults. According to data published on the True Colors Fund website, “In America, up to 1.6 million youth experience
homelessness each year. The statistics for lesbian, gay, bisexual, and transgender (LGBT) homeless youth are even more shocking, as this group represents up to 40% of all young people experiencing homelessness. Considering that LGBT youth represent an estimated 7% of the total youth population, these numbers are disproportionately high. While even a single young person without a home is one too many, the disparity of LGBT youth experiencing homelessness is unfathomable. Once they are out of their homes, LGBT youth are even more vulnerable. They are at a greater risk for victimization, unsafe sexual practices, and mental health issues than non-LGBT young people experiencing homelessness.” EKAJ has been chosen recently as Official Selections of the Santo Domingo Out Fest 2016, Long Island’s Macabre Faire Film Festival 2017, and LesGaiCineMad 2016 Film Festival in Madrid, Spain, and was honored as “Best Film” at the 2016 NY Downtown Urban A&U • JANUARY 2017
photos by C. Gonzalez
With EKAJ, independent filmmakers Catalina and Michael Gonzalez build family while bringing dramatic light to AIDS, addiction & other impediments facing today’s LGBT youth through their own real-life experiences by Sean Black
Arts Festival and “Best Film”, “Best Director” and “Best Actor” at 2016 Philadelphia Independent Film Festival 2016, “Best First-Film” at 2016 QCinema Fort Worth LGBT Film Festival, “Best Film” at 2016 Pembroke Taparelli Art & Film Festival, and nominated for “Best Feature Film” at the Blow-Up Arthouse Film Festival. A&U had the honor and pleasure of corresponding with Cati and Mike, the creative duo behind this film:
family or social surroundings reject you at an early age, it will bring depression, anxiety, even aggression, depending on who you are. Youth are craving love these days because there is none. It’s hard for kids to find it even inside their own families; everyone is [out] for themselves and kids have grown as tough as Teflon in order to survive. Many kids rely on the LGBT community to lean on when they first come out, and that is not always as warm and welcoming as they hoped;
surviving. Once on drugs they become an easy target since you are more likely to say ‘yes,’ to things you would never say ‘yes’ to sober. And AIDS is not forgiving. Most kids don’t think it’s going to happen to them and look at the ones that have HIV or AIDS as different or lesser beings but it can happen to them overnight. People with HIV and AIDS were those innocent kids yesterday and that’s what nobody sees. And you explored this in your film....
Ekaj, played by Jake Mestre, and Mecca, played by Badd Idea in a scene from the film EKAJ
Sean Black: Congratulations on the film and its mounting success. It addresses several major social woes impacting LGBT youth like homelessness and addiction. How do you hope to quell this problem and make an impact? Cati Gonzalez, Michael Gonzalez: That’s the big question; problems resolve themselves better when you know the root [causes]....Feeling lonely, unloved, might be the root. It sounds simple but [it] is not. Everybody in this world begins as a kid, a beautiful kid first, innocent with hope and lots of love to give. If your JANUARY 2017 • A&U
many times [it’s] heartbreaking. I blame depression, alcohol, [illegal] drugs, and prescription drugs because of their availability and social acceptability. They have grown to have them as part of their everyday lives. Rich kids suffer from depression too; it’s not just a problem for poor kids, although it is much harder for the poor kid to survive depression/addiction without a support system to get back on his/her feet—that is why many end up homeless..... These are the kids that I believe could be great artists but have a hard time
In our movie Mecca is that kid; overnight his hopes and dreams were gone and ten years later he is just existing, drowning his pain to cope with his broken heart. I see a lot of HIV people who are angry, bitter, and on drugs or alcohol because they feel betrayed by the disease simply because they might have gone out of their way and been very careful not to get [HIV] and then one moment unguarded and there they are. They feel an enormous injustice has taken place in their life and I can’t blame them for feeling that way. There are no instant solutions; healing
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takes time but with a little love a wounded person can fight addiction and begin to love again. The problem is once you are an addict you feel hopeless; you stay stuck in the original problem and you blame everybody, your family, your friends, and until you come out of it you can’t heal. I have seen so many friends go through this; it’s painful to think about it. Michael, you lost your mother to AIDS. I am sorry. How have you dealt with this loss? Do you feel that inner-city, urban youth experience more first-hand brushes with the effects of HIV/AIDS? Michael Gonzalez: Thank you, Sean. Yes. The urban youth have more exposure to HIV/AIDS, most definitely. My mom passed away when I was just six years-old so I don’t think that I was able to fully understand the situation at the time but as I grew older curiosity kept biting at me naturally. I was always told that she died from a pneumonia infection so that’s what I believed. It wasn’t until I was fourteen years old that my aunt pulled me aside on the street one day and told me that she had died from full-blown AIDS. She tried to
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explain to me that they [the doctors] back then in 1982 didn’t know what it was. I do remember seeing her quarantined in a hospital room the day she died so that made sense. After learning the truth about my mom’s disease, it was like the world took a whole turn on me. I couldn’t comprehend what I was just told, or maybe I just didn’t want to accept that she had died from this horrible disease for that matter. All types of thoughts invaded my mind like, ‘What? Do I have AIDS? How did she get it?’ I just couldn’t think straight. I went and got high on drugs immediately, anything to just make my mind drift away as far as possible. I even contemplated suicide several times. I lived with a great aunt after my mom died and she threw me out onto the streets at thirteen and I found myself homeless. It was very hard for me to focus on anything from that point on in my life. I had to drop out of school, staying at friends’ houses here and there but mostly sleeping on city park benches for many, many nights basically trying to survive on the streets of New York City. It really took a huge toll on
me. At eighteen Cati took me into her home and it took me years to become comfortable and trust people again. I started getting work here and there, learning carpentry. Meanwhile, Cati always encouraged me to learn photography but it would be video and editing/ sound that really got me hooked. She always says I’m more organized than her. One thing is for sure though—everything that I suffered growing up made me a stronger person and defines who I am today. Congratulations—wow! Why did you, Cati, ultimately decide to weave this thread into EKAJ? Cati Gonzalez: I was writing a film with Midnight Cowboy in mind, but with Nuyorican [New York Puerto Rican] drifters, broke and discarded by life. Once I met Jake [who plays EKAJ] I thought he could be in the film; I already had met another young man that was related to Mike, that was also really beautiful in a rougher way, and I decided that the story would apply to them even better since I had not seen hot Puerto Rican hood gay boys featured in a lot of films. A&U • JANUARY 2017
I wrote the older character with AIDS in the film because I had quite a few friends that died of AIDS in the early nineties. I had just started to work as a fashion photographer and everybody I knew was gay. My agent Dennis, who lived in Horatio Street—I used to stay on his couch when I came from Philly to do shoots and he would always say that he was lucky; all his friends were dead but he was lucky because he wouldn’t share a needle. And my friend Rommel Wilson, the most beautiful stylist, died of AIDS. Back then it was a shock, because once they found out they had it they would die fast. I also found out five years ago that an old friend of mine was HIV-positive; it’s heartbreaking, I tried to see him but he’d always cancel. I think it’s because he doesn’t want me to see him changed
by the disease. I knew him when he was young and on top of his game and I think it is hard for him. From the beginning of writing EKAJ, I wanted AIDS to be silent in the film, as if it’s so common you don’t make a big deal or talk about it everyday; it’s just there. From the film’s opening of Ekaj (Jake) giving himself a razor cut in a dank bathroom to the sequence of him relishing in his gender-fluid beauty and physicality while bathed in the light of golden hour, the cinematography really showcases Cati’s experience as leading photographer in the fashion industry. Is the exquisite beauty a replacement for dream-like escape? Cati Gonzalez: It was just the raw beauty of Jake and NYC together, and wanting to show the truth that was my drive visually. All my photography work is pretty much the same. I just follow my emotions; it never changes as you can see here: www.catiandmikegonzalezfilms.com. As an adjunct instructor at a local state college, I teach critical thinking and visual literacy in an introductory history of photography course. I feel that the ultimate educational power of your film resides within the film’s creative team—the ‘familyesque’ success story in creating this film. This is why I am very interested in bringing awareness to your film through A&U. What is the response that you are getting from young at-risk viewers?
Cati Gonzalez, Michael Gonzalez: Actually the best response is from young at-risk viewers, the kids that are living it for real. You don’t know how many times I’ve heard: “This is the story of my life.” We played the film at a youth LGBT homeless shelter in NYC called Sylvia’s Place and they were glued. They liked that the film didn’t have a preachy tone. Some I could tell were looking to criticize it, since they are homeless themselves but they didn’t. I could see they were surprised that it felt real, they liked it and stayed for the entire film. How can creativity and the arts help us transcend and grow beyond our circumstances to new and brighter possibilities? Cati Gonzalez, Michael Gonzalez: I think art is the best medicine. Art is the escape and the pride that no one can take away from you. When you take a picture and you love it, who can tell you it is a bad picture? When you paint your jacket or a canvas and you love it who can say it is not beautiful? And that is just the beginning once you are hooked on any art form and you love doing it, writing, music, it’s all relevant. Once you love it, it’s much easier to pursue to a higher level. In my opinion every kid that has suffered greatly can be a great artist, they just have to love it, that’s all. You have to work at it and you can get better and better but it begins with love.
For more information about EKAJ, log on to the website: ekajthemovie.com. Sean Black is Senior Editor of A&U. JANUARY 2017 • A&U
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photo by C. Gonzalez
What message or moment about EKAJ do you want to linger or stick in viewer minds? Cati Gonzalez, Michael Gonzalez: The love between Mecca and Ekaj, the love between two lonely discarded souls that have to lean on each other in order to survive.
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
text and photos by Sean Black 44
A&U • DECEMBER 2016
W
“The Movement saved my life.”
ith 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.”
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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 After posing for portraits at Parker Guest House, Cleve chanced upon someone purchasing his memoir at his neighborhood bookstore, Dog-Eared Books. A&U • JANUARY 2017
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,
“Burlesque: Strip, Strip, Hooray!” tour. Photo by Jennifer Mitchell
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 JANUARY 2017 • A&U
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. Cleve Jones and writer Hank Trout dodge the rain, traversing the rainbow crosswalk at 18th and “Barney’s a very intelligent man, Castro Streets in San Francisco. quite possibly one of the brightest people ever to serve in Congress, pened because the AIDS crisis—when so we were responding to the crisis, and we but he doesn’t come from the movement,” many of our families and friends and others saw the devotion of our partners. Most peoCleve said. “And I think part of his responsaw us sick and dying—changed so many ple fought back against the epidemic. They sibility was to protect the Democratic party hearts and minds. “There’s that, yes, but it’s joined ACT UP or the Shanti Project or from the Left, and that’s the role that he so much more than that,” Cleve explained. they delivered meals—or they just stayed played. But he did it with an unnecessar“Before AIDS, the notion of a ‘gay home and cared for their partners of twenily mean-spirited vocabulary that really community’ was just that, a mere notion. ty years until they died. So, after we went annoyed me. Like, telling the kids not to We were still part of the subculture, still through that individually and collectively, march [on Washington, D.C.] because all criminalized. So when AIDS happened, it after we emptied all those bedpans and they were going to impress was the lawn. forced a lot of us out of the closet, it forced spent all those nights pacing in the I.C.U. “But I’ve never had much use for the families to deal with us, it forced congrega- hallways and saw all the suffering and all national organizations, and I think a lot of tions to deal with us. And yes, it changed the courage, we were like, What do you what we have achieved has happened in some hearts and minds. mean, this isn’t a marriage? Fuck you! This is spite of them.” “The other thing that happened that exactly what a marriage looks like—and we A lot of what we have achieved in the was crucial to the marriage equality fight want our rights! last thirty-five years, Cleve has written, hapwas, we looked at ourselves and the way that “Also, the reality was that that ‘little
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A&U • JANUARY 2017
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 JANUARY 2017 • A&U
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 DogEared Books (www.dogearedbooks.com) for their help with the photo shoot. Hank Trout writes the For the Long Run column for A&U.
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Hiding Place
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his year, amfAR marked World AIDS Day with the 2016 HIV Cure Summit in San Francisco, California. The summit provided an overview of our current understandings in HIV cure research and provided us with a rundown of the goals and ongoing research of the amfAR HIV Cure Institute. The Cure Institute was formed in November of 2015 with the goal of exploring some fundamental questions that may lead to the discovery of a functional and/or an eradication cure of HIV. They intend to develop the “scientific basis of a cure for HIV by the end of 2020.” The Cure Institute made its home on the campus of the University of California San Francisco (UCSF) with a $20 million a year commitment by amfAR for five years—a total of $100 million dollars. So, what exactly does the “scientific basis of a cure” entail? Currently, the main barrier to “curing HIV” is believed to be HIV viral reservoirs. The Cure Institute is dedicated to understanding and eradicating the HIV reservoir. This will be done through numerous projects to enhance immune response, to reverse latency (activate the resting cells harboring HIV and to kill off these cells) and to control the reservoirs after clearance. Working in teams and with industry partners (including Gilead, UC Berkley, and the Gladstone Institute), researchers at the Institute are centering on four main projects, the acronym for which is CURE: Chart the location of reservoirs Understand how reservoirs are established and persist Record size of reservoirs Eliminate reservoirs Research will focus on finding where the reservoirs are, how big they are, what latent cells HIV resides in, how to identify these cells, how to activate and then eliminate them, and then how to prevent more reservoirs from being established. Research at the Institute has thus far found some interesting results. One main issue is finding out exactly where the reservoirs are. The viral reservoir is not located in one singular place, but found in
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cells throughout the body including the gut, lymph nodes, and tissues. They are also found in several different cells, but primarily in CD4 cells. Dr. Peter Hunt, Associate Professor of Medicine at the HIV/AIDS Division, UCSF, gave an interesting talk on the progress that has been made so far at the Institute. He discussed charting reservoirs in tissue. Dr. Hunt explained that most of our CD4 cells reside in the lymph nodes, spleen, and the lining of the gut, with only one to two percent of our total CD4s circulating in the blood at any given time. Most are in the gut, spleen, and lymph nodes. There are ten times more cells infected with HIV in the gut than in the blood. Some of the HIV-infected cells that are not found in blood behave very differently than peripheral cells and may respond differently to interventions to activate or kill them, so identifying and understanding them is very important. T follicular cells (Tfcs) reside in the lymph node and are a major reservoir for HIV. They live in B Cell follicles. B Cells are responsible for making antibodies, and Tfcs help them. Tfcs are the main target of HIV in the lymph node and produce most of the replicating virus in the lymph in a person not on ARVs. In these follicles, Tfcs are protected from cells that would normally attempt to kill HIV-infected cells, like cytotoxic CD8 and natural killer cells. This may also make them hard to kill with immune-based therapies, one strategy for reducing the viral reservoir. Tissue Memory Resident Cells (TMRs) are another reservoir cell that may be difficult to kill as they are able to hide from the immune system. They’re located in the gut and tissue but not the blood, so they cannot be seen through normal blood draws.
By measuring the amount of HIV in Tfcs and TMRs through gut and lymph node biopsies, researchers at the Cure Institute will explore several questions that could lead to a better understanding of how to rid the body of these latently infected cells. They will try to determine if the amount of HIV in these cells can predict how long it will take for viral rebound during a treatment interruption. They will also evaluate different shock-and-kill therapies on these cells. Another team at the Institute is focused on ways to identify which cells harbor HIV. Currently only a few markers have been identified (Exhaustion markers: PD-1, LAG-3, TIGIT) and these are not fully reliable. These researchers are looking for signatures which could be used to identify cells with latent HIV through total body imaging. As the research at the amfAR-sponsored Cure Center at USCF continues, our knowledge of HIV reservoirs grows, getting us closer and closer to first a functional and then hopefully, an eradication cure of HIV. Jeannie Wraight is the former editor-in-chief and co-founder of HIV and HCV Haven (www. hivhaven.com) and a blogger and writer for TheBody.com. She is a member of the Board of Directors of Health People, a community-based organization in the South Bronx and an advisor to TRW (Teach me to Read and Write), a community-based organization in Kampala, Uganda. She lives with her husband in New York City. A&U • JANUARY 2017
illustration by Timothy J. Haines
one focus of the amfAR 2016 cure summit targeted hiv reservoirs
lifeguide
Explore the Power of Your Mind guided imagery may be an asset to your wellness toolbox
illustration by Timothy J. Haines
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elcome to 2017. First and foremost, I wish each of you a happy, healthy and prosperous New Year. May the coming days be rich in wellness. Without question, one of the most common conversations at this time of year centers around resolutions. Many of us see January the first as an opportunity to refocus and reach new heights. Everyone wants to know what big plans you have and what big changes you plan to make in the New Year. Everyone is discussing the goals that they wish to achieve and the accomplishments that they wish to make in the next 365 days. I am a firm believer that any random day, of any week, of any month of the year is stellar time to make positive changes in your life, but, it’s a tradition to focus more heartily on those goals using the coming of a new year as a marker. The question is, how do we reach those goals and accomplish the various things we set out to do. Personally, I have always been a fan of different forms of imagery and visualization. I try to take the “power of positive thinking” to a higher level in its practice. It may sound simplistic, but there are many therapeutic practices rooted in thought and visualization. My own visualization practices and processes are quite detailed. As an example, I often focus on the living space I would one day like to have. In my imagination, I have laid out the floor plan, every hallway and each room, I have chosen the paint colors and the décor. I’ve imagined the view from windows, the closet space and many other minute details. I’ve sat quietly at my desk with colored pencils and drawn the rooms. You may wonder what the point of all that is. Deeper thought and actively imagining, or “picturing” what you want to achieve can lead to action. At the risk of sounding cliché, you can say seeing is believing. Will I one day live in that very specific home that I envision for myself? Probably not, unless I build it myself from the ground up, but the imagery keeps me focused, looking forward to future plans, and working towards a goal. Now, my example is just one form of a visualization
JANUARY 2017 • A&U
technique relating to a very specific goal; there are other visualization practices, such as guided imagery, which are used for a plethora of positive goals, including positive health benefits. Guided imagery is a process of specific, directed thoughts and suggestions. There are a variety of guided imagery techniques that are used. They can range from simple visualization and guided suggestions to story-telling, fantasy exploration, and using artistic outlets such as drawing or painting, to name a few, that help the unconscious mind interplay and communicate with the conscious mind. Guided imagery is not a new practice. In fact, it began in the early 1970s when professionals began to develop and research imagery approaches for individuals living with chronic pain, cancer, heart disease, and even immune dysfunction. You can use a guided imagery instructor, specialist, or therapist who specializes in guided imagery, or there are tapes, videos, scripts, and the like to help you through the process, depending on what your goals are. Guided imagery works upon the basis that your body and mind are connected and that the production of strong images and visions in the mind affects the physical body and/or creates action. Some people consider guided imagery a holistic practice, very much a part of the complementary and alternative medicine genre. Others say it is more rooted in science and use the practice in more conventional, medical settings. Guided imagery is used in many situations— medical, psychological, and emotional. It is used to lower blood pressure and help manage signs and symptoms of stress and illness. Others use it to help reach personal goals such as weight loss, halting unhealthy habits, or to help manage pain. Some use the practice for other
somewhat more practical purposes such as in preparation for an athletic undertaking or speaking in public. It is most effective when the person teaching it has training in guided imagery techniques. Currently, there are no known risks associated with it. Whether it is used for the relief of stress and anxiety, to address physical and psychological symptoms, guided imagery may have positive affects for people living with HIV/AIDS. In fact, some believe that guided imagery may even positively affect the immune system. There have been studies, though on a smaller scale, revealing evidence that guided imagery could produce changes in immune activity on the cellular level. One particular piece in a neuroscience journal described how guided imagery elevated immune system functioning, and how cell-specific imagery affects corresponding white blood counts, neutrophils, and lymphocytes. I have found that guided imagery is an interesting, creative, and self-empowering addition to a wellness routine. As for you and guided imagery—think on it! After a lengthy career in the arts and LGBT activism, Robert Zukowski pursued his goal of a career in complementary and alternative healthcare. He is a New York State licensed Massage Therapist, a Certified Medical Massage Therapist and is certified by the National Certification Board for Therapeutic Massage and Bodywork. In addition to his hands-on work, he is a writer and lecturer in the field of therapeutic massage therapy.
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lifeguide
Gateway to Justice by
Chip Alfred a new coalition takes up the task of
reforming missouri’s draconian hiv criminalization law
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manner by exposing another person to HIV without the knowledge and consent of that person.” The means of exposure can include biting and spitting, widely recognized as no-risk behaviors. If “the victim contracts HIV from the contact,” the charge is bumped up to a class A felony, with a maximum penalty of thirty years in prison. To determine actual transmission, judges have relied on witness testimony and circumstantial evidence (neither of which provides conclusive proof), rather than require phylogenetic testing, which can confirm if an accuser and a defendant share similar strains of HIV. The use of condoms is specifically excluded as a defense to a violation of this statute or another statute concerning sex workers. This law essentially turns a class B misdemeanor prostitution charge (thirty days to six months behind bars and a $500 fine) to a class B felony (five to fifteen years in prison) if the sex worker is aware of their HIV-positive status. “When people wrote the laws originally [1988], they were afraid of an epidemic and trying to do the best they could to help the public welfare,” Quinn remarks. “If people are concerned about public health and safety, locking people up is not the best way to achieve this.” Michael Johnson, a young African-American Missouri college student, is one of those individuals currently behind bars. After a
controversial racially-charged 2015 case, Johnson is serving a 30.5-year sentence for “recklessly transmitting HIV” to one man and exposing or attempting to expose four other men to HIV. The jury initially recommended a penalty of 60.5 years, which was then reduced by the judge. Still, Johnson’s punishment is similar to a conviction for second degree murder. “HIV stigma runs deep here,” Quinn says, hoping to address this with a public awareness campaign that kicks off on World AIDS Day 2016 at an annual community breakfast at the University of Missouri in Kansas City. After that, reps from MHJC will reach out to state legislators for support and seek out prospective sponsors for new legislation. Quinn says he’s encouraged by the coalition’s growth and the dedication of its members. “This really is a grassroots collation of people from across the state volunteering their time. They really care about people living with HIV and about the public health of all Missourians. We know we can write better laws that reflect the knowledge that we have today.” For more information, visit https://www.facebook.com/MOHIVJustice. A&U welcomes your HIV criminalization story ideas or suggestions. Please contact Chip Alfred, Editor at Large, at chip.alfred@gmail.com. A&U • JANUARY 2017
illustration by Timothy J. Haines
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t’s a state with a relatively low prevalence of HIV, but a high number of convictions for HIV non-disclosure and some of the nation’s harshest punishments. The outdated statutes in Missouri are rooted in fear and stigma rather than reflecting current science and known risk factors. Known as the “Show Me” state, Missouri and its legal system have shown little mercy for defendants in HIV criminal prosecutions. Now, the MO HIV Justice Coalition (MHJC) plans to modernize the language in existing HIV-specific statutes, and develop new legislation that takes into account all of the following: intent, actual risk, and mitigating factors such as condom use. With seed money provided by the Missouri Foundation for Health, the coalition was formed in partnership with Empower Missouri, a non-partisan, nonprofit statewide organization that works on addressing social justice issues affecting the citizens of Missouri. Ashley Quinn, Empower Missouri’s Coordinator of Organizational Outreach, primarily focuses on facilitating the development and activities of MJHC. “Empower Missouri is about trying to make government work for people on the ground,” he explains. As for the state of HIV criminalization in the state, “This is one of those things where the laws in the state of Missouri are hindering the way people can do HIV services.” Because of the stiff penalties for HIV non-disclosure, Quinn asserts, people are reluctant to get tested. “We have to eliminate barriers and increase access to testing, which is key in stopping the spread of HIV.” MHJC, established in March 2016, includes advocates, people living with HIV, and representatives from ASOs and CBOs from across the state. For now, the group conducts bi-weekly conference calls to discuss strategy, how to build the coalition, and to plan upcoming events. Quinn tells A&U MHJC’s first efforts will include educating the public through community forums. “We need to make sure people are aware of the laws and understand how wrong and harmful they are.” The main statute relating to HIV prosecutions in Missouri makes it a B felony (up to fifteen years behind bars) to “act in a reckless
E R U CULT S THE
AID OF
BOOKS At Danceteria and Other Stories by Philip Dean Walker Squares & Rebels
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ometimes a writer can do something unique with the English language. Not so esoteric as to render it unrecognizable, but create something singular and still readable. Philip Dean Walker, in his first book, At Danceteria and Other Stories, does just that. He uses language in a fresh and novel way to tell stories that are rarified, yet compelling. He brings back to life the world of high style and culture of the eighties in cities like New York, London, and San Francisco. But its high style meets the low brow in places like a New York S&M club and drag night in a London gay club. The high style is peopled by players such as Halston, Jackie Kennedy, and Princess Diana. It was a time when celebrity meant accomplishment in something like the arts, as with Keith Haring, who makes an appearance. It was long before the advent of today’s reality television—being famous still meant something. It was also a time when all that was fashionable was being decimated by the ravages of AIDS. We see Rock Hudson in the legendary D.C. nightclub, Tracks, witnessing a frail young man on the dance floor with his IV pole as a partner. Hudson himself has started to noticeably drop weight to those around him, such as his friend Nancy Reagan, who he is visiting at the White House. Princess Diana is worried about her dear friend Freddie Mercury: “She didn’t ask him directly, but she’d definitely seen that before. The men she’d visited in hospital, their hands like dried corpses.” There’s a common JULY 2016 2017 • A&U JANUARY • A&U
theme here though. It was the early years and so often these characters, later taken by the disease, are still in denial. They’re too young, too successful, too handsome to be taken. They still feel immortal. All the stories are incredible, but the most compelling is “The Boy Who Lived Next to the Boy Next Door.” In its earliest days in cities like New York, where it is set, this new disease seemed at times to only take the most exceptional-looking men of the era. Walker takes this idea and runs with it. Filling the vacuum created by HGF (hot gay flu), as it was initially called, are all the average-looking guys. Suddenly, they are the most desired and sought after whereas once they lived only on the margins. Walker has truly captured the spirit of the early eighties here. He’s brought to life what was a glittering and magical time but also captured its pathos. It’s a view that can only be held or even appreciated in retrospect. —John Francis Leonard
and make a name for himself. Nick knows this reporter through several previous sexual liaisons and is not a fan. He becomes embroiled in a story that the man was writing about. It involves a prominent local gay business owner who is the S&M master of a bevy of attractive young sex slaves. Nothing is simple or what it seems however, and his investigation leads him in unexpected and dangerous directions. Nick’s private life, as would be any gay man’s in a city like Chicago in that year, has been deeply affected by the AIDS crisis. He’s lost close friends and more than one former lover to the disease. The pandemic is not the central theme of the book, but it is always there, affecting the sexual mores of the time and exacting its price on a beleaguered community. Thornton handles the subject adroitly and with great depth and sensitivity. Condoms
Boystown 8: The Lies That Bind by Marshall Thornton Kenmore Books
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’ll admit, when my Arts Editor passed on this novel, part of a series, for me to consider reviewing, I was hesitant. A gay detective story sounded to me like the mass-produced gay lit that one finds in the “gay” section of one’s local Barnes & Noble. But, I told myself, these kinds of books must be popular for a reason and I’ve actually been eager to find one that approaches the HIV/AIDS crisis and adds to the conversation. The old adage “you should never judge a book by its cover” proved very true. Not only does Boystown 8 deal with the early days of AIDS beautifully, but it is also a skillfully written and entertaining read. No mean feat for any author. It’s 1984 in the city of Chicago. As he’s investigating the case of a local mobster for the law firm he works for, private eye Nick Nowack lands right in the middle of another murder investigation. There is a brutal shooting of the “ trick” of a local investigative reporter looking to land a story
as a means of prevention are just coming to the fore at this moment. Some, like our protagonist, insist on their use. Many are still hesitant. This novel is wonderful entertainment, it is a great detective story. Thornton easily avoids the cliches of many books of this genre and takes the book to a higher level. I greatly look forward to future books in the series and am interested in how Thornton will deal with the pandemic as the eighties play out. —J.F.L. John Francis Leonard writes the Bright Lights, Small City column for A&U.
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A Calendar of Events
he HIV League is determined to make the future brighter and more secure for students living with HIV. It recently launched—and is currently accepting applications for—The HIV League Scholarship. Two 2017-2018 scholarships, each in the amount of $7,000, will be awarded to full-time students living with HIV enrolled at a college or university. (See the website for full eligibility criteria.) It’s up to the students whether or not they want to make their name public upon winning the scholarship. Deadline: January 31, 2017. The newly formed nonprofit organization, whose mission it is to “empower the HIV Community through scholarship, wellness, and education,” has been busy all year long raising awareness about and funds for the scholarship—at the Cycle Jam in Charlotte, at AIDS Walk New York, at a SoulCycle Charity Ride. But The HIV League has also been nurturing community across serostatuses by offering videos and blogs where people share their stories and strategies about living well with HIV in an empowered way, becoming an HIV-negative ally, long-term survival, destigmatizing HIV, and other issues.
Ruby’s Rap
continued from page 16
Awww, Jimmy [I soothe him by patting his arm]. I am seriously a mess in relationships. I’m in therapy right now to work on that. What scares you about a relationship? Everything. I think part of the issue was that I spent a lot of time obsessing about my career because, although I’m ambitious, the real underlying force was that I hated being by myself. Its like RuPaul says, “If you can’t love yourself, how the hell you gonna love somebody else.” No truer words have been said. Say, do you take PrEP? Several months ago, I discussed it with my doctor; however, right now, I do not take it because I’m not currently sexually active—and me not being sexually active is a whole other conversation, Ruby! [He lets out a lion of a roar!] I will get on it once I become sexually active again. I know you’ve donated to friends who rode in the AIDS Life/Cycle and your series Go Go Boy Interrupted also donated several thousand to the Los Angeles LGBT Center. What motivates you to give? I am motivated to give back because I felt so grateful I got to do my show! It was so fun and people came out from the community to support us—from letting us shoot at various bars to donating mon-
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If you would like to donate to The HIV League Scholarship, log on to: http://bit.ly/2hoUB45. To submit a scholarship application or learn more about The HIV League, visit: www.hivleague.org.
ey and clothes. I feel very lucky.
shrill gasp of laughter.]
I learned you did a Kickstarter campaign for your series…. That night when we hit our goal I went for a walk and tears of joy were just rolling down my cheeks. I was so happy—and I’m very happy to give back.
Anything unusual happen during that time? I had a fistfight because someone threw a drink on me. I just acted out in violence, which is obviously totally inappropriate. It’s funny because I had instant karma. I broke my own arm punching the guys face. Yikes!
As a perk on the campaign, didn’t you offer up yourself as a date? [He nods.] Honey, I was going on dates left and right! All the people were so nice and per our agreement I did have sex with them. Just kidding. Can you print that?
Yikes is right. Oh…poor…you. Is there going to be season three of Go Go Boy Interrupted? Oh man, I wish! I had so much fun doing the show and I love those characters. Right now we’re trying to sell it as a television show. That’s where the focus is now. Stay tuned!
You are a wild man, Mr. Fowlie. I like that. So what celebrity turns you on? Steve Buscemi. Look at those eyes, Ruby! Not particularly my type, but okay. I go more for James Bond, rather Daniel Craig. [I flutter my fake eyelashes toward Jimmy.] I want to hear about your go go days! What is the one thing that stands out in your mind about it? Well, I don’t drink anymore, but when I did, I would go to these clubs absolutely wrecked! One time I actually threw up because I was so drunk right before I went on stage. I know, so gross! I stumbled into the dressing room like, “Anybody got gum?!” [He lets out a
Break a leg, kid! Put a spin on the current epidemic, Jimmy. With the integration of PrEP, it looks like we are moving into a place where we are better protected from the virus….But... we need to keep our regular checkups and continue to get tested. There! Rally around Fowlie at The Groundlings Theater where he performs frequently and also follow him on Twitter or Instagram, where he posts upcoming appearances: @jimmyfowlie. Ruby Comer is an independent journalist from the Midwest who is happy to call Hollywood her home away from home. Reach her by e-mail at MsRubyComer@aol.com. A&U • JANUARY 2017
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Survival Guide
[a portrait by sean black]
“Shame is toxic. As a thirtytwo-year survivor, I am continually peeling the onion of shame and stigma. The layers fall off slowly, but surely—and the rewards are boundless. What helps is the support and comfort of others: people who ‘get it,’ who don’t judge me, and who remind me that I, too, deserve happiness. Humor is also vital. And remembering to take time to play and laugh. And cats. Whatever your methods, realize that you are a unique and worthy individual.”
Bruce Ward Bruce Ward is a NYC-based writer, actor, and educator. He has been writing about the AIDS epidemic since its inception, beginning with his play, Paint By Numbers, produced in 1983. His play, Lazarus Syndrome, and solo play, Decade: Life in the ’80s, have been produced throughout the U.S. Bruce worked as an AIDS educator throughout the earliest years of the epidemic, and he was the first Director of the CDC National AIDS Hotline from 1986–1988. He was honored by POZ magazine as one of 2015’s POZ 100. He has recently completed a memoir that chronicles the pre-cocktail years.
Sean Black is a Senior Editor of A&U.
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TREATMENT LOWERS THE AMOUNT OF HIV IN YOUR BODY. AND HELPS LOWER THE CHANCE OF PASSING HIV ON.
There is no cure for HIV, but treatment can help protect your health and the people you care about. Talk to a healthcare provider and visit HelpStopTheVirus.com © 2016 Gilead Sciences, Inc. All rights reserved. UNBC3046 04/16
How does HIV affect my future? It doesn’t. Let’s Grow Old Together See what life with HIV looks like from diagnosis through grandkids with a little help from Walgreens. Explore Calvin’s HIV journey at Walgreens.com/LetsGrowOldTogether. ©2017 Walgreen Co. All rights reserved.
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