A&U Magazine March 2022 by A&U: America's AIDS Magazine

art & understanding for 31 years

Artist Miguel Cardenas Advocate

Muwonge Gerald Nonfiction by

David I. Steinberg

Actor Jonathan Miles Advocate

Claire Gasamagera

Cea

Creates Connections Among Writing, Art, Community & HIV

MARCH 2022 | ISSUE 329

IMPORTANT FACTS FOR BIKTARVY®

This is only a brief summary of important information about BIKTARVY and does not replace talking to your healthcare provider about your condition and your treatment.

(bik-TAR-vee)

MOST IMPORTANT INFORMATION ABOUT BIKTARVY

POSSIBLE SIDE EFFECTS OF BIKTARVY

BIKTARVY may cause serious side effects, including:

BIKTARVY may cause serious side effects, including:  Those in the “Most Important Information About BIKTARVY” section.  Changes in your immune system. Your immune system may get stronger and begin to fight infections that may have been hidden in your body. Tell your healthcare provider if you have any new symptoms after you start taking BIKTARVY.  Kidney problems, including kidney failure. Your healthcare provider should do blood and urine tests to check your kidneys. If you develop new or worse kidney problems, they may tell you to stop taking BIKTARVY.  Too much lactic acid in your blood (lactic acidosis), which is a serious but rare medical emergency that can lead to death. Tell your healthcare provider right away if you get these symptoms: weakness or being more tired than usual, unusual muscle pain, being short of breath or fast breathing, stomach pain with nausea and vomiting, cold or blue hands and feet, feel dizzy or lightheaded, or a fast or abnormal heartbeat.  Severe liver problems, which in rare cases can lead to death. Tell your healthcare provider right away if you get these symptoms: skin or the white part of your eyes turns yellow, dark “tea-colored” urine, light-colored stools, loss of appetite for several days or longer, nausea, or stomach-area pain.  The most common side effects of BIKTARVY in clinical studies were diarrhea (6%), nausea (6%), and headache (5%).

 Worsening of hepatitis B (HBV) infection. Your

healthcare provider will test you for HBV. If you have both HIV-1 and HBV, your HBV may suddenly get worse if you stop taking BIKTARVY. Do not stop taking BIKTARVY without first talking to your healthcare provider, as they will need to check your health regularly for several months, and may give you HBV medicine.

ABOUT BIKTARVY BIKTARVY is a complete, 1-pill, once-a-day prescription medicine used to treat HIV-1 in adults and children who weigh at least 55 pounds. It can either be used in people who have never taken HIV-1 medicines before, or people who are replacing their current HIV-1 medicines and whose healthcare provider determines they meet certain requirements. BIKTARVY does not cure HIV-1 or AIDS. HIV-1 is the virus that causes AIDS. Do NOT take BIKTARVY if you also take a medicine that contains:  dofetilide  rifampin  any other medicines to treat HIV-1

BEFORE TAKING BIKTARVY Tell your healthcare provider if you:  Have or have had any kidney or liver problems,

including hepatitis infection.  Have any other health problems.  Are pregnant or plan to become pregnant. It is not known if BIKTARVY can harm your unborn baby. Tell your healthcare provider if you become pregnant while taking BIKTARVY.  Are breastfeeding (nursing) or plan to breastfeed. Do not breastfeed. HIV-1 can be passed to the baby in breast milk. Tell your healthcare provider about all the medicines you take:  Keep a list that includes all prescription and over-the-

counter medicines, antacids, laxatives, vitamins, and herbal supplements, and show it to your healthcare provider and pharmacist.

 BIKTARVY and other medicines may affect each other.

Ask your healthcare provider and pharmacist about medicines that interact with BIKTARVY, and ask if it is safe to take BIKTARVY with all your other medicines.

These are not all the possible side effects of BIKTARVY. Tell your healthcare provider right away if you have any new symptoms while taking BIKTARVY. 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. Your healthcare provider will need to do tests to monitor your health before and during treatment with BIKTARVY.

HOW TO TAKE BIKTARVY Take BIKTARVY 1 time each day with or without food.

GET MORE INFORMATION  This is only a brief summary of important information

about BIKTARVY. Talk to your healthcare provider or pharmacist to learn more.

 Go to BIKTARVY.com or call 1-800-GILEAD-5  If you need help paying for your medicine,

visit BIKTARVY.com for program information.

BIKTARVY, the BIKTARVY Logo, GILEAD, the GILEAD Logo, GSI, and KEEP ASPIRING are trademarks of Gilead Sciences, Inc., or its related companies. Version date: February 2021 © 2022 Gilead Sciences, Inc. All rights reserved. US-BVYC-0008 01/22

#1 PRESCRIBED

HIV TREATMENT * *Source: IQVIA NPA Weekly, 04/19/2019 through 05/28/2021.

DIMITRI LIVING WITH HIV SINCE 2018 REAL BIKTARVY PATIENT

KEEP ASPIRING.

Because HIV doesn’t change who you are. BIKTARVY® is a complete, 1-pill, once-a-day prescription medicine used to treat HIV-1 in certain adults. BIKTARVY does not cure HIV-1 or AIDS.

Ask your healthcare provider if BIKTARVY is right for you. ONE SMALL PILL, ONCE A DAY Pill shown not actual size (15 mm x 8 mm) | Featured patient compensated by Gilead.

Please see Important Facts about BIKTARVY, including important warnings, on the previous page and visit BIKTARVY.com.

Scan to see Dimitri’s story.

Contents

March

2022

RUBY'S RAP

Ruby raps with Actor Jonathan Miles

COVER STORY

A&U's Philip F. Clark Talks to Cea About the Intersection of Creativity & HIV

GALLERY

In His Art, Miguel Cardenas Delves into the Intricacies of Social Commentary

FEATURES

20 Nonfiction Anecdotes From The Epidemic by David I. Steinberg 36 A Champion for Youth Muwonge Gerald Helps to Raise HIV/AIDS Awareness & Provide Services to Young People in Kampala, Uganda 48 Poetry My Dear, HIV by Cea

DEPARTMENTS viewfinder 4 6 8

Frontdesk Digital Footprints NewsBreak

cover photo by Timothy J. Haines

lifeguide 40 41 44 47

Money Matters Lifeguide In Brief The Culture of AIDS Lifelines

Frontdesk From the Editor

March Sadness

AMERICA’S AIDS MAGAZINE issue 329 vol. 31 no. 3 March 2022 editorial offices: (518) 205-5024

arch is sadness for the Waggoner family. My recently deceased mother, my father who passed away in 2013, and my beloved sister Cindy all died in March. It’s a rough month for me, but it is also a time when I think about how unified our family was over the years. As adults, and because we treasured the bonds that made us stronger, we came to this unity of our own volition. I am thinking of how unity is created because, as I write, Russia has attacked Ukraine. Why? Putin claims he wants to reunify Russia. But unity forged by force is not unity, and my heart goes out to the people of Ukraine who are losing family members for no good reason. For no good reason——that’s part of why we fought back against AIDS apathy and government inaction. Our family members, lovers, friends, colleagues, and community members were dying in the eighties and nineties for no good reason. What the current and future generations might not ever understand is how many of these deaths were preventable——if only Reagan and his administration had acted more quickly to address the public health crisis at hand; if only individuals and communities did not revert to homophobia, racism, nationalism, sexism, classism, and so on, as a first response to AIDS; if only people relied on science.... If only we as a country, as global citizens, could have somehow convinced ourselves much, much earlier that disunity equals death. Ever since the early days, the AIDS community has voted for unity more than not. And by unity I don’t mean we never disagree or come into conflict with one another. By unity, I mean striving to identify problems together and finding solutions together. I mean practicing inclusion and repairing the ravages of exclusion, within our movement and without. Working on our unity——I have seen this first-hand when I have attended conferences these past three decades of the magazine’s existence. Conferences bring people together, whether it’s NMAC’s USCHA or CROI or the International AIDS Conference, people from all around the globe gather to fight for a cause to defeat HIV/AIDS. We all converse together——no one power is privileged but the power of the people together. It’s always a time to see old friends and to meet new ones. It’s always a time to remind ourselves we are better and stronger when we are together. No strangers to isolation, we value every chance to commune and collaborate. This month’s cover story subject, Cea (Constantine Jones), who was interviewed by A&U’s Poetry Editor Philip F. Clark and photographed by A&U’s Art Director Timothy J. Haines, is a champion of collaboration. When speaking of their website, they say: “When I first thought about how to design the site, I imagined it as a very conventional ‘digital CV’ of sorts, with links to all the things I’ve done. Once I started to catalog those

Editor in Chief & Publisher David Waggoner

projects, though, I realized that almost every single creative project of mine has been done in tandem / in community with others.” As the new liaison for the Visual AIDS Oral History Project, Cea tends to collaboration in a different way: “[The project] pairs HIV-positive artists across a wide range of demographics with each other, and these individuals are acting as both recorder and record. There is no third-party facilitation. These conversations are coming from within the various folds of this community, which I feel is very important. All of us have at least two things in common——we are living with HIV/AIDS and we make art. But there are so many other overlaps and differences beyond that common ground.” This issue also foregrounds both the differences and the common ground that make our community so vibrant——all for good reasons. David I. Steinberg contributes an incisive piece of nonfiction about loss and grief. Claire Gasamagera discusses how her YouTube channel reaches out to women living with HIV/ AIDS. And artist Miguel Cardenas uses collage to create his stunning works. Muwonge Gerald in Kampala, Uganda, explains what they are trying to do to address HIV/AIDS among vulnerable populations. What is happening in Ukraine is evidence of how topsy-turvy the world has become, but that doesn’t erase all the unity we have achieved in our lives. If anything, it reminds us that the world has become a much smaller place. I always enjoyed going with my grandmother to Disneyland and going on the It’s A Small World ride. Thanks to the genius of Walt Disney and his Magic Kingdom team of designers, painters and set manufacturers, we could take one short ride and the dream that all could be well with the world lived again. Let’s use our own creativity to strengthen our local and global ties and work toward a planet free of disease, deprivation, and hunger, as well as war, human trafficking, drug cartels, and other forms of violence. Don’t fight——unite!

Managing Editor: Chael Needle Senior Editors: Dann Dulin, Hank Trout Editor at Large: Chip Alfred Special Projects Editor: Lester Strong Arts Editor: Alina Oswald Fiction Editor: Raymond Luczak; Nonfiction Editor: Jay Vithalani; Drama Editor: Bruce Ward; Poetry Editor: Philip F. Clark; Copy Editor: Maureen Hunter Contributing Editors: Reed Massengill, Kelly McQuain, Lesléa Newman, Robert E. Penn, Nick Steele Contributing Writers: Ruby Comer, Alacias Enger, Claire Gasamagera, John Francis Leonard, Corey Saucier Art Director: Timothy J. Haines Contributing Photographers: Davidd Batalon, Tom Bianchi, Holly Clark, Stephen Churchill Downes, Greg Gorman, Francis Hills, Tom McGovern, Annie Tritt, Tommy Wu National Advertising Director: Harold Burdick, Jr. Sales & Marketing: David L. Bonitatibus Advertising Sales Office: (518) 205-5024 National Advertising Representative: Rivendell Media (212) 242-6863 Subscription Info: (518) 205-5024 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 • Patricia Nell Warren, 1936–2019 • Jeannie Wraight, 1968–2021 • Robert Schelepanow, 1946–2020 • Richard Garcia, 1951–2021 A&U (ISSN 1074-0872) is published by Art & Understanding, Inc., 4 Hall Street, Hoosick Falls, NY 12090, USA. For A&U advertising information please call 518-205-5024; for subscriptions and address changes please call 518-205-5024; for letters to the editor and unsolicited manuscripts write A&U Magazine, 4 Hall Street, Hoosick Falls, New York 12090; 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. ©2021 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, 4 Hall Street, Hoosick Falls, NY 12090 USA

Printed in USA • Visit our Web site at www.aumag.org DAVID WAGGONER

Digital Digital D ig igi git ita taal Footprints Fo Footprints ootpprint in nts ts mosttweeted

art & understanding for 31 years

Advocate Grace Detrevarah’s insights about living with HIV and experiencing incarceration found a wide audience online.

• Theodore (ted) Kerr • Tyler TerMeer • Jeffrey Long • John Francis Leonard Pays Tribute to Betty White • Melanie Anne Haskin Reese

grace

DETREVARAH

mostloved

Helps Create Opportunities for Individuals Impacted by Incarceration & Health Disparities and Advocates for Trans Liberation

The visual punch of AIDS posters in an exhibit curated by Theodore (ted) Kerr for the National Library of Medicine made an impact with our readers.

FEBRUARY 2022 | ISSUE 328

Photo by Stephen Churchill Downes

mostshared Melanie Reese’s story of long-term survival resonated with readers, who lauded her advocacy.

@AmericasAIDSMagazine

@au_magazine

@au_americas_aids_magazine • MARCH 2022

NewsBreak

california lgbtq+ groups urge end to gay/bi blood ban

s the United States faces its first-ever emergency blood shortage crisis, four LGBTQ+ organizations——APLA Health, Equality California (EQCA), Los Angeles LGBT Center, and San Francisco AIDS Foundation—— have joined California Insurance Commissioner Ricardo Lara in urging the U.S. Food and Drug Administration (FDA) to overturn its discriminatory policy maintained requiring men who have sex with men to abstain from sex for three months before donating blood. Recently, Commissioner Lara sent a letter to FDA’s Acting Commissioner Dr. Janet Woodcock and U.S. Department of Health and Human Services Secretary Xavier Becerra urging the complete end to the FDA’s discriminatory policy. “This is outdated, discriminatory guidance based in prejudice——not in public health——and it is contributing to our current national blood donation crisis. I respectfully urge you to permanently lift the entire deferral period in order for a male donor who has had sex with another man from donating blood,” Commissioner Lara wrote. The FDA first instituted its lifetime ban against gay and bi men in 1983 when little was known about the mechanisms of HIV transmission and the AIDS epidemic was concentrated primarily in the gay male community. In 2015 the FDA revised the ban to allow men who have sex with men to donate blood if they abstain from sex for a full year. In April 2020, the one-year deferral period was reduced to three months to meet the nation’s urgent need for

blood during the COVID-19 pandemic. The groups cite research by the Williams Institute at the UCLA School of Law indicating that lifting the ban would produce up to 615,300 additional pints of blood per year——enough blood to help save the lives of more than one million people——can potentially be contributed by gay and bi men. The UK, France, and Greece have all abolished their ban on blood donations by gay and bi men. Russell Roybal, Chief Advancement Officer of San Francisco AIDS Foundation, said in a prepared statement, “At the beginning of the COVID-19 pandemic, I was denied the ability to donate plasma because I am Queer. As a person who had contracted COVID-19 very early on, I knew donating

my plasma could have helped researchers just beginning to study vaccines and treatments yet was screened out of the process which required a twelve-month deferral for men who have sex with men. Even with the shortened three-month deferral, it still sends the message that our blood is dangerous and worthless, which only serves to promote stigma and shame.” “It’s long past time for the FDA to adopt a policy based on science, not stigma,” said EQCA Legislative Director Tami Martin. “We’re grateful to Commissioner Lara for his continued leadership in the fight to end this outdated, discriminatory ban once and for all.”

• MARCH 2022

hiv+ woman in remission after stem cell transplantation

n February 15, 2022, researchers at UCLA presented at CROI 2022 (the Conference on Retroviruses and Opportunistic Infections) the first case of a woman whose HIV is in remission after she received a new combination of specialized stem cell transplants for treatment of acute myeloid leukemia (AML). The patient, a mixed-race American woman who was diagnosed with acute HIV in 2013 and high-risk AML in 2017, received a transplant of cord blood cells having the HIV-protective CCR5-delta32/32 mutation and with adult stem cells from a related donor. She has been in remission of AML for four and a half years and has had no HIV rebound in the fourteen months since antiretroviral therapy was stopped. If her HIV remission continues and she is determined to be cured, she would be only the third person to achieve cure and the first HIV remission to have been successfully engrafted with umbilical cord blood cells with CCR5-delta32/32 homozygous combined with stem cells from an adult, haploidentical (“half-matched”) related donor. The two previous patients with HIV cure received adult donor cells, one from bone marrow and one from

in memorium: Luc Montagnier

photo by Jared Eng Studios

uc Montagnier, the French researcher who won the 2008 Nobel Prize in 2008 for his discovery of the HIV virus, died on February 8, 2022, at the American Hospital of Paris in Neuilly-sur-Seine. He was eighty-nine years old. Born in 1932 in Chabris, France, Montagnier studied medicine in Poitiers and Paris, becoming a virologist in the field of molecular biology. He joined the National Centre for Scientific Research (CNRS) in 1960 and became head of the Pasteur Institute’s virology department in 1972. “My involvement in AIDS began in 1982, when the information circulated that a transmissible agent——possibly a virus——could be at the origin of this new mysterious disease,” Montagnier said in his autobiography on the Nobel Prize website.

MARCH 2022 •

blood stem cells that had the protective mutation, but no umbilical cord blood cells. Researchers pointed out that although stem cell transplantation is not a therapy for HIV, its effects in patients living with HIV and undergoing therapy for blood or lymph cancers provide researchers with insights and potential targets in HIV treatment. “This study provides hope for the use of cord blood cells or a combination of cord blood cells and haploidentical (half-matched) grafts to achieve HIV-1 remission for individuals requiring transplantation

for other diseases. It also provides proof that HIV-1 viral ‘reservoirs’ can be cleared sufficiently to afford remission and possibly cure in the setting of resistant target cells,” said Bryson, the protocol chair for the International Maternal Pediatric Adolescent AIDS Clinical Trials Network (IMPAACT), the organization conducting the observational IMPAACT P1107 study. For more information about the IMPAACT study, log on to: https://bit.ly/3sLCTg5.

In 1983 Montagnier led the team that identified the human immunodeficiency virus (HIV), leading to his sharing the 2008 Nobel Prize in medicine with his colleague Françoise Barré-Sinoussi. However, American scientist Robert Gallo claimed that he had found the same virus at almost exactly the same time, sparking a disagreement between France and the United States over who should get the credit. The countries settled the dispute when it came time to patent an AIDS test in 1987: Montagnier was credited as the discoverer of the virus, Gallo as the creator of the first test. More recently, Montagnier had fallen into disrepute in the scientific community as he spread misinformation and conspiracy theories about the coronavirus. He claimed that the virus was manmade, not generated in nature; said the COVID-19 vaccines actually cause the disease; and delivered

a speech at a protest against vaccine certificates in Milan, Italy earlier this year. At the time of his death, Montagnier was emeritus professor at the Pasteur Institute and emeritus research director at the CNRS. He had received multiple awards, including France’s highest decoration, the Legion of Honor.

Without health justice, we cannot end the HIV epidemic. Show your support at sfaf.org/shop

AFC releases racial equity action plan

n February 7, 2022, National Black HIV/ AIDS Awareness Day, AIDS Foundation Chicago released its first Racial Equity Action Plan. The three-year plan aims “to heal past harms and achieve racial equity both within AFC and in AFC’s spheres of influence.” Chicago’s Black community comprises nearly sixty percent of new HIV/AIDS diagnoses in the city, although they make up only thirty percent of the city’s population. Similarly, over seventy percent of Chicago’s homeless population are Black. Both problems stem from systemic racism. Reflecting its commitment to meaningful involvement, AFC included staff of all levels, races, and genders in the development of the plan and accompanying resources. In addition, AFC’s progress will be tracked through a dashboard, open to the public, which will allow AFC to remain transparent and accountable for the duration of the plan and

identify opportunities to continue racial equity work beyond 2025. “This work is not new for us,” said Dr. Cynthia Tucker, Senior Vice President of Community Partnerships and Special Projects in the introductory letter. “Since AFC’s founding in 1985, we’ve continually innovated our programming and services to better serve Black and Latinx communities. The new plan will add benchmarks and transparency to the work, but it will not mark the end of our commitment to

racial equity. We must and will keep going for as long as it takes to achieve justice and equity for the communities we serve.” AFC has also made available several spokespeople who can discuss the new plan and its future impact on supporting the BIPOC community and helping Illinois eradicate new cases of HIV by 2030. The full plan, glossary, and racial equity assessment is available at https://bit. ly/35UEM28.

In-theater fundraising on Broadway and across the country, with actors circulating among the audience after a performance with little red buckets for donations, has been on hiatus since the COVID-19 pandemic shut down the industry almost two years ago. Although many shows returned to their stages last fall, Broadway Cares temporarily suspended its red bucket appeals as the theater community worked to resume its eight-shows-a-week

schedule. That fundraising void was filled by the consistent generosity of donors and supporters of Broadway Cares/Equity Fights AIDS, the philanthropic heart of Broadway. The food grants were fueled by Broadway Cares’ year-end giving campaign, which raised $ 2.2 million leading into 2022. For more information, please visit Broadway Cares online at broadwaycares.org.

BC/EFA Awards $2.5 million to food & meal programs

roadway Cares/Equity Fights AIDS has awarded a record $2,532,500 in grants to 127 food service and meal delivery programs in thirty-seven states, Puerto Rico and Washington, D.C., including twenty-two in New York City. This first step in Broadway Cares’ 2022 National Grants Program surpasses the amount given in 2021 and the pre-pandemic 2020 food grant rounds, both of which were also records. The $2.5 million awarded in this grant round joins the $5.7 million that has been awarded so far to The Actors Fund since October 1, 2021, the beginning of Broadway Cares’ fiscal year. Since March 2020, Broadway Cares has awarded $35 million in grants to The Actors Fund and 450 other social service organizations across the country. “Nutrition and access to healthy meals are the crux of wellness,” Broadway Cares Executive Director Tom Viola said in a prepared statement. “The effectiveness of vital medications is directly related to the food fueling our bodies. These organizations are making it possible for people to have a fighting chance at living a strong and healthy life, regardless of their circumstances.”

MARCH 2022 •

by Ruby Comer

Jonathan Miles

hat a countenance! Those peepers, those dimples, those lips, those chiseled lines. He even has a beauty mark. Frank Gehry couldn’t have designed a better artifact, and Ryan Gosling has nothing on this man! The camera simply loves this handsome baby face——and so do I. I feel like a high school girl with a heavy crush! Talk about eye candy. Well… the pretty mug belongs to Jonathan Miles. After watching him in his debut film, More Than Only, I know this actor has a fruitful career ahead. I soared with tears and with giggles throughout the delightful breath-of-fresh-air motion picture. Written and directed by Michelle Leigh, it’s about self-realization and finding love despite a bigoted family. Jonathan plays the lead, Justin, a confused college student who covers up his hurt and anxious feelings with a whacky, please-love-me personality. Think Matthew Broderick in Ferris Bueller’s Day Off. Justin soon meets a compassionate nurse, whom he falls hard for, and so begins a circuitous fun journey. My infatuation with Jonathan Miles leads me to Portland, Oregon, where More Than Only was filmed, and Jonathan resides. After the New Year, even though COVID-19 flying restrictions and requirements remain intact, changing nearly daily, I forge through it all as I want to find out more about a local ASO, Cascade AIDS Project (CAP). Come to find out, Jonathan is involved with Basic Rights Oregon (BRO), an LGBTQ+ Equality organization, which has strong connections with CAP. According to BRO Development Director, Margo Martin, “Both organizations

share missions of uplifting, empowering, and centering the lives of underrepresented populations in Oregon, including, but not limited to, those living with HIV/AIDS, LGBTQ, and BIPOC (Black, Indigenous, People of Color) folks. Our efforts are varied and our approaches are different, but we are united in our goals of making Oregon, and the country, a more equitable place for all. We work in tandem on shared state legislative goals, partner on community events, and serve on a statewide LGBTQSIA+ leadership roundtable.” Jonathan is proud • MARCH 2022

Ruby illustration by Davidd Batalon; photo courtesy J. Miles; film photos courtesy Darren Hartman

of his affiliation with such powerful, vibrant, and compassionate groups. Turning forty later this year, Jonathan was raised in and around Oregon, including costal regions and the storybook landscape of Mt. Hood. He has two sisters and two brothers. One sis took her life when Jonathan was ten; his other sis is more interested in drugs than being close to her brother, as Jonathan puts it. One brother is also not interested in family ties, and the other bro is an extreme right-winger. Jonathan leans totally in the opposite direction. Jonathan lost his parents in 2020, his dad to cancer and his mom to COVID-19. “Thank goodness for chosen family!” says Jonathan, referring to his partner and close friends. When Jonathan was a preteen, he saw the film Philadelphia. It made an indelible impact on him watching Tom Hanks and Denzel Washington portray their characters, up on the big screen, and speak about AIDS. It was a first for Jonathan. Indeed, the film was one of the first mainstream films about the pandemic. It was a “first” for many people back then. Mr. M. started off college by majoring in Civil Engineering then switched interests, and graduated from Portland State University with a bachelor’s in English, focusing on Journalism, with minors in Women’s Studies, Film Studies, and Middle East Studies. He’s also studied acting and clowning with various troupes and theaters. Jonathan identifies as queer and describes himself as pansexual-bisexual. He lost his V-card to a girl while a freshman in high school and then a couple of years later to a

MARCH 2022 •

On the set of More Than Only

boy. Through the years he’s dated many people, including guys living with HIV. He has been married to Jade (a cis female) for over ten years. They met fifteen years ago at a party through an ex-boyfriend of Jonathan’s. It was love at first sight! Jade is also pansexual-bisexual. Gee, yours truly wishes she were built this way——“attracted to folks on every part of the gender identity spectrum,” as Jonathan explains. This husband and wife team also are kid-oriented. They tutor their nieces and nephews one day a week. Early in their relationship, Jonathan and Jade ran a preschool and daycare out of their home for a few years. For a brief time they were short-term foster parents for teens who had been adjudicated and were attending a rehab program as an alternative to juvenile detention. Humanitarianism is an integral piece of Jonathan’s spirit and comes natural to him as his upbringing was rooted in helping others. Meeting Jonathan was even more than I anticipated. My hot girl pants were cooled off nearly immediately as I found Jonathan’s humbleness and humor surpassing his attractiveness. We meet at his cozy, rowhouse studio apartment, not far from Portland center. Perched on his comfy sofa, with one of his two cats, Chromeow and Cameow, curled up beside me, Jonathan offers me a cuppa joe. He’s

admits to being a “coffee addict” and enjoys drinking green and chamomile tea as well. I rapidly discover that Jonathan is simply… well, snappy, sassy, spunky, and sultry. In a capsule, he’s just a hunky hoot! Ruby Comer: [We both sip our coffee, Jonathan across from me in a small simple armchair.] I’ll be honest, Jonathan. [I timidly gulp.] I was smitten with you in More Than Only…[His face becomes a bit crimson as he shyly glances down, looking like a cuddly puppy dog]. I also enjoyed your stellar performance.[I take a quick breath.] Well, tell Ms. Ruby about your first HIV testing. Jonathan Miles: It was your classic college health center experience, a general STI screening during a blood drive on campus. Nursing students jabbing everybody with needles, taking blood, giving cookies, and saying “Your results will be back in a few weeks.” And, then I’m like, “Results?” And they’re all, “Yeh, we’re also screening for STIs.” And, I’m like, “Oh! Bonus!” After that, I started getting regular screenings. [He pauses then reveals] I was honestly just too arrogant at the time to think I was going to test positive for any STIs. You know, young, dumb and full of myself.

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I think we were all young, dumb, and full of ourselves. And my gosh, that’s quite an out-of-the-ordinary first time. Okay, glad you were healthy. How did you first hear about the epidemic? Gosh, as terrible as it sounds, the first time I heard the word was probably through some crude schoolyard joke. Most of what I knew about AIDS was from inaccurate rumors until we started sex-ed in middle school.[He stirs his java and recalls] I was in grade school when Magic Johnson announced his diagnosis, and I remember there being a lot of negative reactions from people around me. But, thank goodness for sex ed in schools, because I certainly wasn’t going to learn anything useful at home, or from friends my age. It sounds like you had a pretty decent education about HIV in school.… And as a result, I was fairly diligent about safe sex by the time I was sexually active. There was an emphasis on countering some of the worst myths about AIDS, such as transmissibility and so on, but on the flip side, I think the stigma around being queer was amplified by a lack of education around the virus. Although I had teachers who were teaching us that you can’t catch it by sitting on a toilet seat, they were also presenting HIV as a problem that mostly affected the gay community without providing the relevant socio-cultural context for those statistics. Ah, yes, that was unfortunate, but quite familiar in those dark times. You dated several men living with HIV. Were there any challenges? I don’t think of it as being a challenge so much. I mean, if anything I was safer with them because they were so diligent about safe sex when we were dating. [Jonathan sweeps through his bronzed wavy locks.] That makes sense. There were a couple times getting tested after dating someone who was positive that I felt nervous. I don’t know if I would call it “AIDS anxiety” or not. I was pretty good about safe sex by the time I was sexually active with boys, but I was more aware of the possibility that I could get it.

hand and had to beg one off a roommate in the middle of, you know, stuff. My friend was like, “You’re so dumb. They literally give condoms away at the bars. No excuses.” He was a smart boy! Just last year, Ruby, a dear friend of mine told me that they were uninvited to a social distanced gathering because of their HIV status. The hosts were feeling “extra-cautious” because of the COVID pandemic. I couldn’t believe it. I was like, “Fuck them!” (The Oregonian is pissed yet maintains his composure.) When you have sex with guys, Jonathan, when do you broach the topic of STIs? Immediately. I mean, as soon as sex comes up anyway. Goody-goody. You are a first-rate example. You need to come around to the schools with me when I do prevention outreach, Jonathan! [Just then, his Chiweenie dog, Nymeria, lumbers in the room and brushes up against Jonathan. He pets her.] Say, who’s your hero in the AIDS pandemic? Freddie Mercury! [He passionately yells.] I believe his death brought people together, which helped destigmatize the disease. [A big smile breaks across Jonathan’s fresh peaches-and-cream face.] Agreed. Loved Freddie. I am a massive Queen fan! [I take a beat.] I also believe he-man pinup boy Rock Hudson opened people’s prejudiced eyes as well. [Jonathan crosses his legs in a lively manner, reminding me of his character Justin, as his foot bobs up and down.] How have you kept sane during lockdowns, Jonathan? Have I? Maybe I have. [He offers with a quizzical look.] I started seeing a therapist through video chat. I wish I had found such a queer-positive, progressive, and empathetic therapist when I was younger but I feel incredibly fortunate to have found them now.

Holy jumpin’ catfish, that’s terrific. Do you have friends who are living with HIV? Yes I do.

Hooray for you! Not easy finding a therapist that meets your needs, or any professional, really, when it comes to that. Since COVID-19 hit, I’ve experienced a dramatic decrease in work as an actor so I make “to-do” lists just so I have something to cross off every day and feel productive.

How do you lend support? Have you learned anything through them about this disease? Well, I just try to be a good friend and be there for them when they need me. [He judders to a stop, his chocolate-hued eyeballs swelling large.]One friend who is positive has definitely lectured me about safe sex. I think an ex of an ex once let it slip that I didn’t have a condom on

[I interrupt quickly] …lists?! Oh my god, that’s my middle name, Jonathan. [He agrees by tilting his chin and extending arms upward!] On the flip side, I’ve been fortunate to have a few very meaningful projects to work on during 2020. We filmed a fan-funded sequel series to More Than Only. So far we’ve filmed six new episodes, with the latest

MARCH 2022 •

scheduled to be released on YouTube early this year. Oh glory hallelujah. I can’t wait to see them! Speaking of therapy, I have a very close relationship with depression and anxiety. How about you? This is a daily thing for me, Ruby [states Jonathan softly]. I’ve experienced chronic depression since I was about ten years old. I can’t say that I always cope with it in the best, most healthy ways. But, one thing that I’m learning to do every time I feel it creep in is to try and remember that I love myself. I then remember to be kind and compassionate with myself. That is healthy…and thanks for being upfront and honest. Well, over the years I’ve developed a ton of coping mechanisms including regular exercise, meditation, smoking pot, binge watching TV, and on and on. [I eagerly nod in agreement.] The main thing that helps me is to remove the negative self-judgment associated with “unhealthy” coping mechanisms. At the end of the day, depression is going to be with me for the rest of my life. I can beat myself up about it or I can be nice to myself and just keep moving forward the best way I know how. Wise choice. Sounds like you’ve evolved, and that’s a plus in my book. You indeed are a giving person. Where did that originate? My folks raised me that way. We would volunteer at homeless shelters, neighborhood activities, and church functions. I never vibed with the religious part of church but I really loved the community service aspect of it. We had summer programs for kids, the preschool I attended was in a donated part of the church building, and we “rented” out space for free to AA and NA groups in the evening. I remember making pancakes for a church fundraiser with my dad and asking him why the church always needed to raise money. He told me, “If a church isn’t hurting for money, it isn’t doing its job.” Ha, that’s one way to look at it, yep. Leave us with a lasting thought, Jonathan! [He sits back, briefly pondering.] Just that people should remember the lessons of ignoring a virus because they think it might not affect them. A lot of young people seem to think that COVID-19 isn’t going to affect them. [Jonathan takes a strained breath.] It just seems to me, Ruby, though I am no authority on this topic, there’s a parallel between the way straight folks viewed HIV back in the day and the way young, otherwise healthy, folks are talking about COVID-19 now…. 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.

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NONFICTION 20

Anecdotes From The Epidemic by David I. Steinberg

(I) Musicians

To the Memory of James Meade, and for Harry Kelley Another day, another temp job. At lunchtime I’m walking along Market Street and one of the street musicians who holds down a regular spot on the sidewalk is making awful sounds few would consider “music.” She plays ear-splitting harmonica off-key and now, thanks to generous contributions from passers-by (not me!), she’s bought an amplifier and microphone and is exceptionally loud! Isn’t there a law against this? Her abrasive harmonica playing socks me in the ear as I pass and it’s much worse amplified, so that the traffic roar on Market Street better soothes my work-jangled nerves. Her new amplifier also lets me hear her much longer after I walk on as she blows harsh and dissonant like any kid whose mother would shout, “Stop that before I kill you!” Today I wish this frumpy woman would disappear——immediately!——from outside The Sharper Image, a circular building at the corner of Market and Sansome Streets. The windows display their high-tech, high-priced devices, but the building reminds me of the first time I went in there with my friend, Harry, to meet James, Harry’s new boyfriend. “The opera singer.” For several months that was all I knew whenever Harry mentioned him. “There’s this opera singer that’s interested in me,” Harry might say as casually as if he was saying, “I bought a new pair of shoes yesterday.” Each mention of the opera singer was followed by “…but I’m not sure I want a relationship yet.” James had been pursuing Harry for a few months right after Harry broke up with his years-long lover, Richard. A tough breakup, and Harry was in no hurry to start dating. Harry and I worked downtown for years and one lunch hour, Harry said, “Remember that opera singer who’s after me? I like him and all, but it still feels too soon after Richard. I don’t know, what do you think?” I thought maybe he

should meet for coffee and cultivate things, if not for now then maybe later? Well, maybe, he wasn’t sure, but would think about that. Another lunch hour a month or so later and Harry and I were strolling around downtown. “Look,” he said, and held up his hand to show off a gold wedding band. “The Opera Singer gave it to me to say he’s serious and will wait till I’m ready. What do you think, should I be wearing this or not?” I hardly knew. In 1983 the idea of a man proposing with a wedding ring was confusing——didn’t that not apply to gay men? Gay marriage then was a fantasy I never expected in my lifetime and I didn’t know what to say, but James had definitely made a sweet, sincere gesture. Only after James died did I fully realize how perfect he and Harry were for each other: they both had a strong faith and found a place for at Trinity Episcopal Church where they married years before it was legal; they’d both grown up in alcoholic households and knew that impact on their lives; they both loved music (Harry plays piano and writes amazing, unknown songs——the Emily Dickinson of contemporary songwriters); they both cared little for the material, but cared enormously about each other, about love, faith, friends, the artistic life. James, as I learned, was not only an opera singer, but also a singer of lieder, classical songs, cabaret, Pocket Opera, and classic opera. When Harry first said to me, “There’s this opera singer…” James was in Europe singing at the Amsterdam Opera. Sounded exotic, not the kind of man you’d meet every day in a gay bar in the Castro. The first time I heard James sing, how strange it was to suddenly hear someone’s singing voice after knowing only his speaking voice. James’ singing voice was so transformed by music it sounded like it was bounced off a satellite and back to James’ vocal chords; but the sound was his own clear, strong tenor, a voice that loved Harry, that sang James’ love true and clear to his beloved. (Harry, where are those Monday Songs you composed, that

• MARCH 2022

James brought so stunningly to life during an AIDS benefit recital?) Another day, another lunch hour with Harry, sometime after James’ death. I told him I thought of James’ voice as I walked to meet him and passed that mad woman, still with amplifier and microphone. I said I felt assaulted by her dissonant noise and she somehow made me think of James’ melodious voice. “I hate that woman’s terrible, ugly wig! And when I passed her I thought, ‘If there’s a god, why didn’t god take her instead of James?’” Harry laughed. “Oh, but James loved her, she was his favorite street musician!”

(II) After James’ Death “My mother is a fish.” —William Faulkner James died Sunday, March 27, around 8:15 p.m. Thursday we have trout for dinner. Ruven hands me a plate with this headless thing on it. “There’s a dead fish on my plate,” I say. “Why are we eating a dead thing?” “I don’t know...because that’s what I got us for dinner tonight,” says Ruven. I poke it with my fork as if to make sure, remove some of the sage-sprinkled skin from the ribs, the pale fish-flesh exposed. James’ body in the morning light. All night long by candlelight we didn’t see. Daylight revealed the yellowed body, the change of James——friend, husband, lover, son, brother, singer——from person to corpse. The trout tastes like trout. “I’m sorry, the fish is fine, but I can’t eat it,” I say to Ruven. After Mikel died this happened too. I couldn’t eat meat for a week without instantly seeing his dead body as I bit in, recalling flesh tones of his corpse. “I hate to waste the fish,” I say (James’ half-opened eye, his jaw hanging loose.) “I can’t eat it either,” says Ruven who cooked it, but removes the trout from our plates. We settle for the vegetables: the bright green asparagus, the orange sweet potatoes. A little butter, a little salt.

(III) Grief Group (1996) A few weeks after Peter died the phone rang and for a change I answered. The longer the epidemic lasted, the less I picked up that conduit of bad news. A woman from the Visiting Nurses Association was calling—— how was I doing after my friend’s death? I was caught off guard. How was I doing? I actually didn’t know. I hadn’t thought about it. Well, could she ask what I had been doing since my friend died? I drew a blank as I tried to recall the past few weeks….Slowly clearing

MARCH 2022 •

out Peter’s room at Maitri Hospice, talking to his friends about a memorial service….Simple to do, but somehow too much to do. I was struggling to get out of bed every morning, go to work, do the daily——food shopping, laundry, dishes. But how was I doing she asked again? Me? In the weeks after Peter’s death, no one asked how I was doing, including me. Only Ruven asked, though he was full of his own loss, home again not long after his father’s ugly, difficult death in London. We were trying to make sense of documents and letters from his father’s papers, about Ruven’s father’s parents, murdered at Auschwitz in October 1944. How was I doing at the confluence of two separate streams of catastrophe? The nurse kindly suggested joining a grief group and said some people experiencing multiple losses found it helpful. In California there’s a support group for everything——addictions, job hunting, hangnails. A grief group? Sounded like a small band-aid for a severed aorta, but with nothing to lose and nothing in place to help myself, I decided to try it. The first meeting simply felt weird. I met the nurse who had called and the seven or eight men who came, all of us looking shell-shocked. When I was asked what I wanted I said, “To dump the bodies of my dead friends on the steps of the White House.” At a later meeting I said I wanted to be on disability for the rest of my life. The other men in the group were roughly my age, doing many of the same things I was——isolating at home, drinking too much, getting high on something (marijuana the least of it), not going out, not calling friends——if they had any left. To a man we were a silent, shattered bunch. The nurse suggested we bring photos of our lost friends for next week’s meeting, if we wanted to. A few men didn’t show. I opened my manila envelope and emptied out photographs of friends. A moment’s shock when I saw them all on the table. The photos’ bright colors bothered me——so vibrant. How could they all be dead? I thought of other friends whose photographs I didn’t have——not a single picture of missing-in-action, presumed-dead Ed Valenzuela. The longer I looked at my photos the more they looked like pale representations, vague afterimages fixed on photographic paper, my friends’ vitality truly vanished. How was I doing I was asked again? I was drowning in an epidemic of grief. I could see, because of the group, that I wasn’t alone, and yet felt alone in a city full of grieving, demoralized men. How were we doing? Could anyone pinpoint the moment we each went numb? There we were in a conference room, our photographs spread out under harsh neon light, the few of us who showed that week barely able to speak. By that time I had pretty much given up on therapy, but therapy and Ruven were what I had to stay afloat during my community’s decimation. No amount of talking through feelings was going to give me what I longed for——an immediate end to the epidemic. Grief group? How was I doing? Leave me alone. David I. Steinberg grew up in Niantic, Connecticut, and has lived in San Francisco the past forty-three years. “Anecdotes” is excerpted from his book-length manuscript, plague took us, currently in search of a publisher.

BOTH/

Jersey City Artist Miguel Cardenas Talks About HIV/AIDS & Blurring Lines Among Art, Design and Social Movements by Alina Oswald

ersey City is not only one of the most diverse cities in the country, but it also has a rich artist community. If you happen to take a stroll through some of the city’s art venues, it’s impossible not to notice the fascinating work of Jersey City native and resident, Miguel Cardenas. As it happens, art has always been a part of Cardenas’ family, and so has activism. His mother was an artist. “She used to paint a lot of fashion back in the seventies, got me through college,” Cardenas says when we chat on Zoom. “She still paints once in a while.” The activism comes from his father, who used to take him to anti-Castro rallies in Manhattan, during the seventies. His parents fled Cuba in the aftermath of the Cuban Revolution. “They’re very grateful to be in this country,” Cardenas says. “The idea of just freedoms is something that we’ve never taken for granted,” he adds, referring to his parents and siblings. “But I guess there was always a spark of activism in me,” he then ponders. “I’m a lot more liberal than the rest of my family, and the only one who’s been a little bit artistically inclined.” He came out “as a gay man” in 1981, during the summer of his high school graduation. About the same time, the New York Times published the first article about what would come to be known as HIV/AIDS. “You could just imagine what that was like——you’re eighteen, you’re out, and all of a sudden you hear about this horrible thing that’s happening, and [you tell yourself that] it’s not going to affect you….”

• MARCH 2022

a&ugallery

Opposite page: Don't Stand So Close to Me, 20202021, collage, assemblage on wood panel, 20 by 20 inches. Photo by Beth Achenbach Top: Rites of Spring, 2020-2021, collage, assemblage on wood panel, 16 by 16 inches. Photo by Beth Achenbach Left:Silence, circa 2020, collage, assemblage on wood panel, 12 by 12 inches. Photo by Beth Achenbach

MARCH 2022 •

Tangents, 2020-2021, collage, assemblage on wood panel, 12 by 48 inches. Photo by Beth Achenbach The Problem We All Still Live With, 2020-2021, collage, assemblage on wood panel. 20 by 24 inches. Photo by Beth Achenbach And the Band Played On, circa 2021, collage, assemblage on wood panel, 12 by 36 inches. Photo by Beth Achenbach

ardenas received a scholarship to Columbia, but then transferred to Pratt Institute to study architecture and loved it right away. So, he “bit the bullet” and gave up his scholarship, and finished his undergraduate studies at Pratt. Then he went back to Columbia where he got his master’s in Architectural Advanced Design and Theory in 1991. Living in Manhattan during the eighties, he’d notice that young men, in their twenties, were around one day, and then they would just disappear, as if “they’d just not be around anymore.” Then, during the first years of ACT UP, Cardenas started to listen more and become more socially conscious towards the reality of the AIDS crisis unfolding all around him. Then he met Paul Mendoza. “In a dance club, in Manhattan,” Cardenas mentions. “We went on a date, and then another, and another, and then we decided to move in together. We’ve been together…it’ll be twenty-seven years in July,” he says with a smile. Paul Mendoza grew up in the Castro District, in San Francisco, a couple of blocks away from Harvey Milk’s camera store, the giant rainbow flag always visible through his window. “I think he was born an activist, that one,” Cardenas comments on his husband. “He’s made me more of an activist than I’ve ever thought I would be.” While looking for a nice place to live in Manhattan, they ended up moving to Jersey City. One evening, Mendoza broached the idea of starting a Pride festival in the city. Cardenas, on the other hand, didn’t think that that was really necessary since there’s NYC Pride right across the river. But Mendoza insisted, and they ended up co-founding Jersey City Pride, in 2001. “The first year was a struggle, a lot of politics involved,” Cardenas recalls. “The only slot the city had available for us was in August.” (Hence, ever since, August has been JC Pride Month.) “Paul

spoke at a City Council meeting. He gave a pretty good speech that we had written together, but he delivered it because it was really his idea; he’s really the founder of JC Pride, and I was kind of the supportive partner, but we kind of did it together.” In Jersey City they also discovered the local artist community and met a lot of artists, and also activists. Shortly after that, they cofounded JCLGO— Jersey City Lesbian and Gay Outreach——a community-based grassroots neighborhood group, and, as part of JCLGO [2001–2010], Cardenas started the Vital Voices LGBTQ+ group art show, which he even curated a couple of times. At first, the group would meet in their apartment; and when it became too small, they started hosting the art show in various places around the

city. “The Vital Voices group art show became very popular,” Cardenas says. “We always had a really good spread of liquor and food, and then the art wasn’t bad either.” About the time he started Vital Voices, many people living with HIV were still unsure of what their future was going to hold. Even then, many of the LGBTQ+ nonprofits on both sides of the Hudson were still focusing almost solely on HIV/AIDS. “You think there’s COVID fatigue now, after [two years]? Try forty years,” he says, slightly shaking his head in a you-have-no-idea kind of way. “HIV consumed the way you thought about everything, because you didn’t know for how much longer you were going to be around.” But while it was important to talk about HIV • MARCH 2022

a&ugallery Nevertheless She Persisted, 20202021, collage, assemblage on wood panel, 24 by 24. Photo by Beth Achenbach and AIDS, those living with the virus could not allow the virus to define every aspect of their life, all the time. Hence, he created Vital Voices to offer a brief, yet welcoming escape into art and art making, and friends gathering. Vital Voices no longer exists, but it had a good run (2002–2011). It inspired a lot of local artists, including Cardenas, to make art. It was through this show that he became obsessed with creating the artwork that he makes today. Coming face to face with Miguel Cardenas’ artwork is a fascinating experience, as intriguing as it is enlightening. Influenced by the deconstructivism architectural movement he studied in grad school, his digital and hand-cut collages (or “assemblages” as he calls them) “attempt to blur the line between art and design by creating a narrative of associations. Architectonic spatial concepts are applied by overlaying juxtaposing appropriated iconic images and text taken from art history, social history as well as pop culture.” Thus, his work “attempts to inhabit the ambiguous, interstitial space or gray zone that exists in between binary oppositions——where, he says, things are not either/or but both/and. This juxtaposition of opposite ideas and beliefs defines the chemistry of a lot of his artwork, both past and present. His latest show, “Tangents,” was a solo show and Jersey City’s first in-person show after COVID to open last summer at the Village West Gallery, as part of Art House Productions Gallery. The artwork included in the show reflected the times in which we live——2021 marked twenty years of Jersey City Pride, forty years of the HIV and AIDS pandemic, as well as the Black Lives Matter movement, women’s rights movement, and much more. Among the art pieces included in the show, Invisible Man is based on the African male identity and its exploitation throughout the decades and into the present. Nevertheless She Persisted is inspired by a documentary on Farrah Fawcett that revealed the actress as the first woman to bring up equal pay in Hollywood, in the seventies. Hence, MARCH 2022 •

Cardenas’ Nevertheless She Persisted is inspired by women and their “expected sexuality,” he says. “You kind of see Farrah Fawcett and in between, throughout her portrait, you see pictures of accomplished women throughout history, from Queen Victoria to Hillary Clinton.” Silence and And the Band Played On speak to the ongoing HIV and AIDS crisis, and related, iconic activism, while incorporating visual elements inspired by the work of the Gran Fury and Silence = Death collectives, also by Keith Haring’s work, and other memorable images capturing the history of the pandemic. Cardenas’ solo show, “Tangents,” brought in hundreds of people, including his family. Knowing that he and the rest of his family oftentimes find themselves at the opposite ends of the political spectrum, Cardenas warned his family that they might not agree with some of his work. “But they were very proud of me, and that [so many] people came to see my work. So, I do think that there’s room for healing. “I also think that there’s always room for

activism,” Cardenas says, “because if there wasn’t, then we wouldn’t be talking about me calling Paul my husband. I didn’t think that that would happen in my lifetime, honestly.” He ponders on all the progress that has happened within his lifetime. “I was six years old when Stonewall happened, and I remember when Harvey Milk was shot, and then very quickly we’ve started seeing acceptance…I [teach] in an inner-city high school right now and I think that the next generation, they’re very accepting of other diversities, ethnicities, and races, and there is a much more awareness than there was when I was growing up in the seventies; so I think that there is hope, I really do.” Find out more about the work of Miguel Cardenas’ by connecting to: Instagram @miguelcardenasjc; Facebook @miguelcardenasartanddesign. Alina Oswald, Arts Editor of A&U, is a writer, photographer, and educator based in the New York City area. She’s also the new Arts Editor of Out IN Jersey Magazine. Contact her online at alinaoswald.com .

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poetry as diagnosis

Cea Talks with A&U’s

Philip F. CLark About Writing to Create Social Change, Artistic Collaboration & Community, and, with "My Dear, HIV," Their Correspondences with the Virus in Verse Photographed Exclusively for A&U by Timothy J. Haines MARCH 2022 •

Cea

is not stopping their stories and noise. Cea (Constantine Jones) has more of them to make, and they are doing it with power, connection, and force. HIV-positive poet, noted adjunct faculty member at City College, New York (CUNY)), and recently chosen Liaison for the Oral History Project at VisualAIDS, Cea is at a vanguard of new poets and writers who are using their experience and their art to make a difference and a change. Their practice is collaborative and rooted at the intersections of HIV/AIDS futurity, and archival cultural care-work/poetry as a catalyst for social instigation. Cea’s ongoing project, “My Dear, HIV”——a series of of poems as letters/diaries——confront the experience of their diagnosis both as a writer and as an advocate of the community [read one of Cea’s poems on page 48]. As documented in their website (see link at end of article) one can witness the hybrid forms of word, art, and music that Cea uses to create and address issues surrounding the complex, and affirming, experience of HIV as reflected in that very mesh of these arts. A member of the Artist+ Registry at Visual AIDS——the largest database of works by artists with HIV/AIDS——they are also a member of the collective, What Would An HIV Doula Do? They lead courses in poetry and hybrid writing modalities at City College and facilitate workshops outside of academia at The Operating System/Liminal Lab, Brooklyn Poets, and elsewhere. They have also worked in research capacities at The NYC LGBT Center Archives, where they

digitized the Petalouthas Society for Gay Greek-American Women’s archival material for public access. Author of the hybrid print-document IN STILL ROOMS (Operating System, 2020), Cea has also produced a collaborative chapbook with Portuguese visual artist Vicente Sampaio, BALEEN: A POEM IN TWELVE DAYS (Ursus Americanus, 2021). Cea’s work has been performed or exhibited at various venues across New York City & Tennessee. In believing that “no one person is one person alone,” an urgent life-affirmation among many that has been a grounding for them, Cea continues to pursue questions that call us to consider community, even within solitude. As a colleague poet and fellow teacher at City College, I have witnessed Cea’s work and ideas evolve and thrive; confront with honesty and colloquy their own HIV diagnosis as well as how their poetry is so much a part of that idea that no one person is alone. Cea’s work brings to the surface many kinds of histories——personal, social, cultural, and communal——yet it also reveals what is perhaps just below the surface: those emotions, actions, and events that are the core of these histories, an undercurrent of language that I would call “word fires.” To anyone who is HIV-positive, the word “diagnosis” has complex associations and reactions——terror, confusion, impatience——it is a word that is too often associated with an underlying “condition of dis-ease” that must be examined, and ultimately corrected. Yet diagnosis is more positively a form of ability to learn, to reveal, to examine, to attest. In this respect, poetry itself is a form of diagnosis. Poets provide the scalpel to language, and to society, to examine those very things below the surface that contribute to who and what we are, in the best or worst interactions. And with language, poetry becomes a form of cure and solace. • MARCH 2022

In my interview with Cea, we discussed how poetry both articulates what shapes us and shapes others and society, and how it has had, and continues to have, significance on their art and their life. From the importance of their Greek family history, cultural and spiritual iconography, and the impact of teaching about HIV/AIDS to their students through their art, to the conditions of what is needed for intergenerational discussion, oral histories, and how past and present are both propagated in any necessary diagnosis of culture and education. They understand that “Disclosure is a very personal and politically charged decision, but I think it’s important whenever those of us who are comfortable and able to lean into our experience living with this virus through our work do so. But I also think that people who aren’t living with HIV who find themselves in positions of influence should use that influence——speak on issues that feel taboo and slowly that taboo will dissipate…I don’t see why HIV/AIDS shouldn’t appear in some form across many disciplines and curricula.” If advocacy is the groundwork for education, it is also what sustains us in any aspect of understanding each other: that community that continues to grow us, to show us that we are not alone. That there are always stories and noise to make. Philip F. Clark: Considering your Greek Orthodox ancestry, what were some of the first inspirations/impetuses that led you to poetry and art? How much of a spiritual (not necessarily “religious”) context did that include, if any? Cea: I was raised in a culture that valued symbols and stories and communal ritual. For all my frustrations with the Greek Orthodox church, I still hold many aspects of it dearly——particularly the visual language of iconography. In a way, iconography isn’t so different from the blues, from folk or country music, which I was also raised among. What I mean by that is that the story is what’s important, not its authorship or credibility. The Saints and their miracles are distilled into visual representations that make them immediately recognizable, and whether you believe in them or not, the stories are there for you to carry however you like. Same with the blues and similar musical traditions——they’re just versions and versions of the same stories retold and recontextualized depending who is singing it and when and where and what their circumstances are. These two different storytelling languages——visual and sonic——have made deep and lasting impressions on me since childhood and have ab-solutely shaped my own relationship to poetry and storytelling. I expect they always will. What iconography in that context appealed to you most, and why? I have two perfect examples to answer this question. On my right arm is a tattoo of the Mother and Child, and on my left arm a representation of Saint Barbara. Both these women’s stories set them up in my mind as symbols of protection. My baptismal name is Panayiotis, the masculine form of Panagia, one of the many names we have for the Virgin Mary. My mother’s baptismal name is Maria. So in a way I see us both in that image. In Mytilene, the village in Greece where my mother’s mother was born, there is a cathedral to Saint Barbara where allegedly her finger is enshrined. It’s the church my grandmother would have gone to, and I went there myself the summer after my diagnosis. Saint Barbara is often depicted holding a sword or bolt of lightning, with a tower either behind her or as part of her crown. Again, a symbol of protection, fortitude, and retribution. Tattooed around my icon of the Mother and Child is a banner containing the phrase, “You must be certain of the Devil”——the name of a record by Greek-American performance artist Diamanda Galás [A&U, January/February 1993], whose work is heavily steeped in blues traditions of Greece and the American South, and who has long dedicated herself to advocating for systemically oppressed peoples, including folks living with and taken by HIV/AIDS, political refugees, incarcerated people, etc. I take the phrase to mean, “you should know the names of those who absolutely do not have your wellbeing in mind; you should recognize those who mean to do you harm.” So in a way that tattoo does what icons and the blues both do—it has become my own version of the story, my own rendition of protection and solidarity. Similarly, the Saint Barbara tattoo on my left arm rests atop a banner that reads “Holy is the name of my ruthless axe.” This phrase comes from another performance artist, LINGUA IGNOTA, whose work also draws on various Christian symbology and positions itself unwaveringly against all forms of abuse. The phrase is the title of MARCH 2022 •

the final track on her debut record——a song that invokes blessings upon various weapons used to bring vengeance upon the speaker’s abusers. Sung in an angelic style informed by sacred music and incorporating an audio sample of Aileen Wuornos testifying in her own defense of murdering an attacker, this phrase too comes already heavy with so many references and connections. How do any of these things continue to instill your poetry and art work, life ideas, goals? I have struggled with my bodily image for many years now, mostly from a point of gender frustration, but the tattoos have really changed that. When I look at myself in the mirror every day and see these adornments, these images that feel like they were always there only they’ve just now come to the surface, I not only feel more confident and beautiful but also I am reminded constantly of the lineages that matter to me. I think I’m just realizing I want to feel that kinship, that company, surrounding me when I write, when I clean my apartment, when I run my little errands. They come with me everywhere I go. The tattoos are really a sacred thing to me——a way to fit my own letters into an existing language of symbolism and to make the intention behind those symbols a visible part of me forever. But beyond my own person, I feel I am always looking for these threads in my work——who are my spiritual ancestors and kin and how can my work be in community with theirs? Which artists, activists, and people do I feel myself threaded through, like beads on an infinite string? Upon learning the diagnosis, how did it become an engine for life? What were the challenges, and the strengths of renewal? I felt, unsurprisingly, completely unmoored by my diagnosis. It

took a long time before I started to tell people, let alone start writing about it. That said, I felt I had suddenly gained an entirely new ancestry in HIV and I was desperate to connect with it. I had a lot of learning to catch up on. In East Tennessee, where I grew up, there was no comprehensive sex education, or discussions about responsible drug use and harm reduction. We were effectively told “don’t do it or else” and left with absolutely no resources to help us make informed decisions about our own and each other’s bodies. My resentment for that system and the shame it instills in folks looking for information is a significant motivating factor in my HIV/AIDS work in all capacities——as a poet, an educator, and advocate. Discuss the project “My Dear, HIV” and how it began, and how it relates to your poetry. What resources and what other poets and artists during this time, help/inspire your work? ”My Dear, HIV” is a translation and riff on the book HIV, Mon Amour, by American poet Tory Dent (1958–2005). The title poem is a multi-segment cycle where Dent addresses HIV/her body/her lover almost interchangeably in a way I’ve never seen done before. I’m realizing that correspondence and conversation are how I best process my own emotions, so to write my own “love letters to HIV” felt fitting and opened up one more avenue for me to engage with that ancestry I so desperately craved. Finding her work, and the work of other artists, poets, musicians and activists dealing with HIV/ AIDS directly was literally life-saving. I must say I do feel an especially sacred gratitude for Diamanda Galás——partly because we share certain cultural identifiers, yes, but also because her work both comforted me and identified the object of my fury at a moment when I needed those things. Her work gives me space to feel all my complex emotions——heartache, loss, rage, and yes, even joy——in the context of a much larger, global community whose lives have been irreversibly impacted by this virus across time and space. Considering that language is both communication and information, how do you feel HIV/AIDS needs additional assessments/iconographies/discussion with “new” language? This is a complex and important question; one that I think about a lot while engaging with archives. An archive is not a static thing——it is alive and ever-expanding and its ability to endure directly affects the scope of people it can reach. An archive is not just a record of what happened, but a document of happening. I worry about our culture’s relationship to “the past.” The past is never over. It is always happening again for the first time, getting bigger and bigger every day. We can learn from those who’ve come before us, build on what they have already set into motion, and find our own way to meet the past in the present. I have been so moved by the Visual AIDS Artist+ Registry and Archive, and am lucky to now work with so many artists whose work I’ve come to love. Nancer

Long Black Veil, December 2018, digital photograph. This work is from a collaboration with photographer Francesco Di Benedetto as part of an ongoing photo-poetry project called [Ruins.In.Progress.] which aims to interrogate my relationship to HIV/AIDS via the lens of construction sites, demolition zones, and other spaces in structural flux. It takes its title from the Diamanda Galás rendition of a blues song with the same name [Youtube link: https://bit.ly/3sTLsFy].

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LeMoins’ work, for example, is astounding——I particularly love her silkscreens of older women’s faces surrounded by text like “I’ve seen and done things you can’t imagine / ask me / talk to me / hear me / know me / it would be tragic if they were never heard” or “old women enjoy sex, too.” I’m also inspired the poetry of River Huston and the political installation and documentary video work of Jorge Bordello and Beto Perez. There is such a tangible richness to these works, and these artists and many more inspire me to push my own practice of manipulating text and visuals in different directions. What are your goals with the new website——what do they hope to engage in its development. There is also also a new project being completed. I am finally planning to launch my own “CLOUD HOUSE” imprint using The Operating System’s open-source infrastructure. I have always imagined people and stories to be less like houses in a neighborhood and more like rooms in one big house, so in that spirit I imagine that projects published via that imprint will be largely collaborative in nature or community driven in their intention. The phrase “stories & noise” is one I’ve carried with me for over a decade now. I’m drawn to dualities, and I think very sincerely that phrase sums up what I think it is that I’m making. When I first thought about how to design the site, I imagined it as a very conventional “digital CV” of sorts, with links to all the things I’ve done. Once I started to catalog those projects, though, I realized that almost every single creative project of mine has been done in tandem / in community with others. The “[Ruins.In.Progress.]” project, for example, pairs longer narrative poems with photographs of me taken by others. The “VOICEOVER–” poems are offered to my friends to record a recitation before that audio is then used by another collaborator, Justin LoBasso, to make a sound-art piece. I have a chapbook coming out this year with Ursus Americanus called “BALEEN: A Poem In Twelve Days,” which is one long multi-part poem punctuated with illustrations by dear friend and longtime collaborator Vicente MARCH 2022 •

Sampaio, a Portuguese visual artist. Even my first book, “In Still Rooms,” published via The Operating System, was a communal effort——a dear friend gave me the title, my mother and aunts told me so many stories about Greece and our family’s history that shaped the work, etc. So “stories & noise” I feel is more of a meeting place——a common ground where I can showcase the work and lift up the remarkable people who have contributed to its making. How did your educational experiences and teaching relationships help develop areas of poetry and community? I’ve been teaching at CCNY since 2016. I moved here from Tennessee thinking I was going to write short stories, but it was my small circle of friends and trusted mentors who kept saying to me “I think you’re a poet.” To me a poet is someone who is fundamentally dissatisfied with the given answers. I don’t mean for that to sound so gloomy——actually much of my work is very hopeful, almost aggressively so. I am furious about all the joy that we could be having. But what I mean is that, in order to be hopeful, to mobilize yourself and those around you to work for a world that is even a little bit more beautiful, you have to look around you and notice what’s wrong. All care is in the noticing. We can’t care for what we don’t notice. And we won’t love what we have failed to consider. How did your work and life as an HIV-positive poet find expression in your teaching? The longer I spent volunteering with organizations like Visual AIDS or collaborating with folks in the collective, What Would An HIV Doula Do?, the more I came to realize just how equalizing an issue HIV/AIDS really is. I mean it’s connected to everything——sexual health, yes, but also harm reduction, housing insecurity, racial inequity, socio-economic class division, the list goes on. So it’s inevitable and appropriate, I think, that I’ve started to incorporate much more HIV/AIDS history and current developments into my syllabi depending on the course. It’s something I’m proud for my students to know about me, that I’m living with this virus. I think it’s important for students to see their instructors as whole human beings with their own struggles and successes. We need to be able to relate to each other as people, first and foremost, before any kind of learning can happen. It’s a sign of respect, not faking it in front of my students, that I feel very strongly about. In working with your students, what do you feel is needed now in terms of intergenerational discussions of HIV/AIDS within current education? What specific discussions would you like to see? I think about this question every single day. Actually a crucial component of the new Visual AIDS Oral History Project is to facilitate these intergenerational exchanges. So much has changed in the landscape of HIV/AIDS even in the last twenty years– in terms of medication and treatment, criminalization, stigma, and general public understanding. But those changes have not only affected young or newly diagnosed folks like myself——they also have affected long-term survivors and their loved ones. I am extraordinarily grateful, because of the work I do, to have befriended so many people——activists, artists, healthcare workers, social servants etc.——who have been living with this virus for longer than I have been alive. We can learn so much from each other, that’s the gift. I would especially love to see more intergenerational connections made across other demographic lines——across ethnic, geographic, economic and linguistic borders. There is this really sad idea about HIV/AIDS in the dominant culture right now that still considers the virus to have been an event——something that occurred in this country back in the eighties and nineties—rather than an ongoing pandemic that touches every corner of the world uniquely. I believe that the more we can widen our scope in how we think about HIV/AIDS, the more compassionate and better equipped to provide comprehensive care to people we will become. A&U is distributed free to many colleges and universities; do they feel it is used and read as a part of curriculum to develop further education about this subject? Is the poetry and other literature of AIDS/HIV included to a degree that is effective in undergraduate and community colleges? We didn’t have this kind of literature in Tennessee, let alone freely available or widely circulated. It’s a gift——one I wish I had when I was younger. I do think that’s

one reason I’ve kept teaching——to give my students a little more of what I wish I had access to when I was in their position. As the new liaison for the Oral History Project, what do you see, or hope to develop in this new position? How might art and poetry together access a part of this? Oral history is one of the oldest forms of record-keeping we have as a species. And what makes it exciting to me is that, like poetry or music or art, it is a communal act of memory and cultural transmission. It is how a culture can come to understand itself——and not from the outside looking in. The Visual AIDS Oral History Project pairs HIV-positive artists across a wide range of demographics with each other, and these individuals are acting as both recorder and record. There is no third-party facilitation. These conversations are coming from within the various folds of this community, which I feel is very important. All of us have at least two things in common——we are living with HIV/AIDS and we make art. But there are so many other overlaps and • MARCH 2022

differences beyond that common ground. Some art-ists in the Visual AIDS Archive and Artist+ Registry work in many mediums, across disciplines, and are all informed by their unique circumstances. Some artists, for example, work with text——either as protest signs, flyers, comics, hybrid illustration and text work, etc. My own work has started to move in this direction by finding DIY/low-cost ways to get poetry out from between the pages of a book and into the world via different avenues. Postcards, notes left in public, text posted on clothing or shared digitally with an invitation to respond——these are just a few methods I’ve been inspired by fellow Artist Members to experiment with. More than anything I’d like to stay together. I want my work to be an ongoing invitation, because no one person is one person alone. We are all much more connected than we think, and we are capable of so much more together than we ever could be on our own. I want to leave behind a poetry of fierce optimism, of stubborn joy. Because there is no house my poems can build or fire they can douse or glacier they can restore. But the poetry could be the reason to spur the action. Better yet, the MARCH 2022 •

invitation to take stock of three things: what is here? / what is missing? / what could be here instead? Visit Cea’s website: www.storiesandnoise.com. Philip F. Clark, A&U’s Poetry Editor, is the author of The Carnival of Affection (Sibling Rivalry Press, 2017). He is an Adjunct Assistant Professor at City College, New York, (MFA in Creative Writing in 2016). His work has been published in Tiferet Journal, The Marsh Hawk Press, Lambda Literary, Vox Populi, and The HIV HERE AND NOW Project among others. He recently read as part of the Phosphorescence Poetry Reading Series, hosted by the Emily Dickinson Museum. His essay, “Sustain Wonder,” appears in the forthcoming Marsh Hawk Press anthology On Becoming A Poet. He conducts poetry workshops for the Hudson Valley Writers Center.

A Champion for Youth

Muwonge Gerald Discusses the Struggles and Successes of the Foaster Foundation for Healthcare Uganda’s Efforts to Help Youth Affected by HIV/AIDS by Chael Needle

Photographed Exclusively for A&U by Afram King

n a Valentine’s Day video message posted on the Facebook page of the Kampala-based NGO they founded, the Foaster Foundation for Healthcare Uganda (FFFH-UG), Muwonge Gerald had this to say to other advocates: “In the days of me growing up, I didn’t know what love is. But today I want to extend my sincere gratitude and love to my fellow community leaders, mainly the minority leaders, the LGBTQ community: You really deserve love. Because the work we are doing, the work you are doing is not easy. It is work that has trauma, insecurity, and all kinds of human rights abuse that we go through doing this work. But I really see that you guys we are doing a great work. So Happy Valentine’s to all the human rights defenders in Uganda. Happy Valentine’s to my community, the LGBTQ community in Uganda.” In closing, he waves with a smile and a cheery hello, as if to say, I see you, before blowing a kiss. Gerald, who serves as the foundation’s executive director, is on a mission to help empower young people living with HIV/AIDS in Kampala and its outskirts. Since its launch in 2019, the Foaster Foundation for Healthcare Uganda, where he is also a team leader, advocates for equity in providing medical care for youth living with HIV/AIDS and to create sustainable and socially transformative programs for LGBTQ+ and women. The nonprofit is youth-led and, taking its cue from national and global health priorities and goals, focuses on sexual reproductive health and rights, HIV/AIDS, TB, and human rights for everyone regardless of gender, religious affiliation, cultural affiliation, and sexual orientation. FFFH-UG also actively promotes the “meaningful involvement and collective organizing of AGYW [adolescent girls and young women] living with HIV to strengthen a unified, vibrant, national, and sustainable youth led movement in Uganda.”

Muwonge Gerald raises awareness about PrEP with LGBTQ community members at Kasaganti Health Center III, as part Foaster Foundation for Healthcare Uganda's services.

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What prompted this twenty-seven year old queer Ugandan living with HIV/AIDS to become an advocate? Both reasons are close to home. A family member had been paying Muwonge’s school fees when they were younger, but, after he died of AIDS-related causes and Muwonge had to leave school, they felt an inner turmoil. “[It] made me to straighten up and become a better person,” they say about becoming an advocate, first and foremost making sure “those who aren’t sick keep safe and those who are sick adhere to their medication.” Their advocay was also prompted by their own seroconversion, which they relate touchingly in their bio: “2016 was the year [they] tested positive fell to rock bottom only to rise and float, not as a dead body but a swimmer braving the waves of self-unworthiness, stigma, poverty and so much. Therefore [they] made it a priority to be at the forefront to curb the scorch of HIV/AIDS within the youth of his community.” For others, they strive to be an example of “positive living”——”a true testimony of everything they advocate for.” Gerald knows that examples of positive living are much needed. According to UNAIDS, the number of adults and children living with HIV in Uganda is 1,400,000. In terms of the HIV testing and treatment cascade: about 91% of people living with HIV know their status; about 90% of people living with HIV are taking antiretrovirals; and about 82% of people living with HIV have achieved viral suppression. According to a Demographic and Health Surveys report (2016), quoted by UNAIDS, 45% of young people ages fifteen to twenty-four knew about HIV prevention. Along with Gerald, the five all-volunteer staff members help implement the nonprofit’s holistic and wide-ranging programs to address the needs of people living with HIV/AIDS or at risk for acquiring HIV. One of its programs provides support services to people living with HIV/AIDS and other STIs, including education about living well with HIV, drug adherence, MARCH 2022 •

safer sex and their general wellbeing in the community. Another program teaches people living with HIV/ AIDS about nutrition and diets that will help them. FFFH-UG also provides some food to its clients, when available. In addition, the foundation helps clients living with HIV/AIDS by promoting social-economic empowerment. In order to generate their own income, youth are provided practical vocational training in activities like carpentry, hairdressing, cake baking, tailoring, catering, and animal husbandry. Income leads to writing up business plans and setting up small businesses and planning for the future——that’s the idea behind helping youth become self-reliant. Other programs include psychosocial support, partnership building and advocacy, legal support, and sexual reproductive rights services. Although people living with HIV/AIDS in the U.S. may have greater access to this kind of support, people living with HIV/AIDS and what Gerald calls “vulnerable groups” like LGBTQ+ youth and young women often face perhaps steeper hurdles to health and wellbeing. Although LGBTQ rights activists successfully blocked the implementation of Uganda’s

now-annulled 2013 Anti-Homosexuality Bill, which in earlier versions allowed at one time allowed the death penalty for anyone convicted of engaging in homosexuality, a new bill that contains a clause that criminalizes same-sex sexual activity with the possibility of a ten-year jail sentence almost passed into law. While positive changes in attitudes toward people who are LGBTQ+ have occurred, homophobia is still pervasive and sex between men and between women remains criminalized. Facts about intimate partner violence and reproductive health reveal how women are in need of support services, as well. According to UN Women: “In 2018, 26.1% of women aged 15-49 years reported that they had been subject to physical and/or sexual violence by a current or former intimate partner in the previous 12 months.” In addition, “women of reproductive age (1549 years) often face barriers with respect to their sexual and reproductive health and rights: in 2018, 55.1% of women had their need for family planning satisfied with modern methods.” When it comes to people living with HIV/AIDS, says Gerald, stigma and the perpetuation of negative stereotypes about this group persist as “big challenges.” Notes Gerald, people living with HIV/AIDS are regular targets of gossip and also shunned from workplaces and family homes because of others’ fears of acquiring HIV. People living with HIV/AIDS in this way become “aliens of their country,” states Gerald, who contrasts Uganda with the U.S., where they perceive people living with HIV/AIDS as ostensibly more empowered thanks to the country’s liberal aspects.

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Asked about other obstacles some of the affected people face, they say, “The long distances to move to areas where they can access drugs. For example during the lockdown it was hard for our members to [travel] from places like Makindye, Entebbe Road, Nansana, among others, to Mulago and Namuwongo [on the other side of Kampala], where the most at-risk clinics and [HIV] medical centers are. So many of these got infections and, because of the fact that they couldn’t [travel] far, [compounded by] high transport fares, they failed to reach Mulago and resorted to keeping the STDs [untreated].” Notes Gerald, healthcare workers also create treatment-access obstacles for clients, particularly those who are transgender, through inexperience, stigma, and discrimination. Asked about the foundation’s greatest successes so far, Gerald responds: “We managed to train peers through evidence-based approaches...on the correct and consistent use of a condom for those who aren’t sick and adherence for those who are sick.” The foundation relied on evidence from established research but also gathered quantitative and qualitative data through one-on-one interviews. Additionally, “[w] A legal awareness session, with a focus on LGBTQ rights, in e managed to mobilize resources to reach partnership with Human Rights Awareness and Promotion out to our fellow members who don’t have Forum (HRAPF) support and those affected by the virus. For example, [during] the first lockdown, we managed to help some members in the shelters with food and HIV medication.” The third success Gerald notes is how the foundation managed to follow up on cases ed to SRHR [sexual reproductive health and rights].” of fellow members who had been beaten and imprisoned based In the meantime, Muwonge Gerald will continue to work to on false accusations by homophobes in the community. Geral resupport youth impacted by HIV/AIDS as that exemplum they so minds: “Uganda is still a homophobic country driven by cultural pointedly described in a written social media post: and religious norms and values.” “But one thing I know for sure is that my coming out public The foundation needs more funding, and Gerald and the will encourage people living with HIV, who r still fighting team have concrete ideas about how the nonprofit might expand stigma,rejection and denial. My coming out public will help if it had more income. others queer people (LGBT) who think living with HIV limits you “First and foremost our goal here [is that] we want to have from having a healthy life.My coming out public will teach the drop-in centers where our members can easily get treatment world that HIV is not a death sentence and people will act human ,” says Gerald, who adds that the centers would provide much to people living with HIV. I believe that my coming out public needed information and other HIV services. “So with the funding will take away the beast in someone’s heart who has decided to [I] am looking at having different drop-in centers in the entire spread the virus to others knowingly so we can end HIV in our socountry working to support the LGBTIAQ members who in most ciety. I know HIV can end with us,only if we decide to be human n cases can’t move further but can be availed with the medication help n support people living with HIV . closer. And also we are looking at building safe havens for those #UequalsU who have lost hope to be rehabilitated from there.” #itendswithme Part of the key to bridging gaps in awareness and access to #beachampionforaidshiv.” health is the use of social media. Follow photographer Afram King on Instagram @Aframking. Notes Gerald: “[The] Internet and social media are so important given the fact the generation is changing and now For more information, find the foundation on Facebook @foasterfounall the youths and others are following the trend. So, with such dationug and Twitter @foasterfoundati. To contact the foundation, platforms, it’s where we post all the important information, e-mail them at: foasterfoundation@gmail.com. messages for young people to reach out and also follow. Many young people now have brand ambassadors for platforms and Chael Needle interviewed advocate Jeffrey Long for the February issue. this creates visibility for so many things including but not limit-

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MONEY MATTERS by Alacias Enger

lifeguide

FACING FINANCIAL ANXIETY

Practical Steps to Maximizing Your Income

alik is a twenty-six-year-old resident of Harlem. He works part-time in jewelry sales and resells clothing and sneakers for additional income. He lives with his sister to minimize his expenses while he focuses his attention on building his business as an independent fashion designer. While his business in fashion design is gaining traction, it is not yet profitable, and what little money is generated from sales is being put right back into the business to help facilitate its growth. Between reselling clothing and his job in jewelry sales, Malik brings home about $2,000 per month, more than half of which he pays to his sister to cover monthly expenses. His employer doesn’t provide him with an insurance benefit, so he receives coverage through the state, utilizing New York’s ADAP for his medical needs. Within the last several months, Malik has had several small emergencies, some of which were medical. With a relatively tight budget and no real savings, he leaned on his credit cards to cover the related costs. This has resulted in Malik incurring approximately $6,000 in credit card debt spread over four separate cards. The resulting payments are eating into his already tight budget and causing him ever increasing financial anxiety.

Malik is not alone when it comes to financial anxiety. In 2020, researchers from the Global Financial Literacy Excellence Center at the George Washington University and FINRA Investor Education Foundation, compiled and analyzed data from multiple recent studies. Findings suggest that 60% of Americans were experiencing financial anxiety, a number which has likely increased due to COVID-related hardships. These experts have cited insufficient income, high debt load, lack of assets, inadequate money management skills and financial knowledge as being heavily contributing factors. Much like Malik, having too many monthly bills, and significant medical expenses were listed among the study participants’ primary concerns. In order to reduce financial anxiety and improve his overall financial health, there are a number of steps Malik can take. The first steps might include reducing credit card debt and a plan to avoid adding future debt. Malik recently filed his tax return and is expected a refund of approximately $2,200. He might consider setting aside $1,000 to protect himself against future financial emergencies, while using the remainder to pay off his smallest two credit cards using the debt snowball method. The debt snowball method is a simple way to gain traction in eliminating debt. This meth-

od involves organizing debts according to balance from smallest to largest and attacking them in that order. After each debt is paid off, the dollar amount that had been used to make that monthly payment gets applied to the next debt in the lineup. So, Malik’s four credit cards, organized by balance, are approximately $500, $700, $900, and $4,000. If he eliminates the two smallest ones using his tax return, he frees up two entire monthly payments which can serve to help him eliminate the next debt on his list. It might also be wise for Malik to reconsider his payroll tax withholdings. The fact that he is getting a refund at all means that more of his paycheck is being withheld for taxes than what is necessary. He is essentially giving an interest-free loan to the government by allowing them to hold onto his money all year long. Those funds might be put to better use by Malik himself. He could use the additional funds to help him continue building his business, eliminate credit card debt, build savings, or overall pad his already tight budget. When Malik first started his jewelry sales job, he claimed “zero allowances” because he didn’t want to have to pay in at the end of the year. By claiming “zero,” Malik had the maximum amount withheld from his paycheck for tax purposes. He can simply request another W-4 form from his company’s HR department and fill it out again. If he claims, “one allowance,” he is basically claiming an allowance for himself, and result will be that less will be withheld for taxes, subsequently making his paychecks higher. As his business continues to grow, and become profitable, he may want to revisit this form in the future to request that additional funds be withheld in order to help offset taxes resulting from that profit. While Malik is reaching for the stars, aggressively pursuing his dream career in fashion design, financial anxiety doesn’t need to be a part of the picture. Adjusting his payroll withholdings and eliminating debt will help free up funds that will help him to reach his goals. Alacias Enger is a performing artist, writer, and educator. She lives with her partner in New York City, and is the founder of blogs “Sense with Cents” and “Travel Cents.” If you are living with HIV/AIDS and would like to stay on top of your personal finances, emailquestions to au.moneymatters@gmail.com for possible inclusion in Money Matters. Follow her on Twitter @ sense_w_cents. • MARCH 2022

LIFEGU I D E

in brief

Copay Accumulator Policies Discriminate Against Patients with Chronic Illness

n February 1, 2022, The AIDS Institute released a new report showing that copay accumulator adjustment policies (CAAPs) are widespread across the individual insurance marketplace. A CAAP prevents patients with chronic illness from including copay assistance in the patient’s annual deductible and out-of-pocket costs. Under this system, financial assistance that is intended to help patients pay for their specialty medications is instead benefitting the insurance company. This research reaffirms that without federal regulation or state legislation, insurers will continue to apply these policies. Stephanie Hengst, Manager of Policy and Research at The AIDS Institute, said in a prepared statement, “People across the US are struggling to pay for basic necessities as a result of the on-going pandemic, and these policies that unfairly target already-vulnerable patients add a layer of financial stress. These policies will undoubtedly force many chronically ill patients to ration or forego their treatments.” To read the full report, please log on to: https://bit.ly/3gswdhd.

MARCH 2022 •

Highly Virulent HIV-1 Variant

ccording to a February 3, 2022 article in Science magazine, researchers in The Netherlands have discovered a highly virulent variant of subtype-B HIV-1. Researchers examined 109 individuals who had contracted this variant and found that they experienced a 3.5-fold to 5.5-fold increase in viral load, and their CD4 cell declined twice as fast, as some 6600 individuals with other strains of HIV-1. By the time they were diagnosed, these individuals were vulnerable to developing AIDS within two to three years. Without treatment, these individuals would advance from HIV to AIDS, on average, nine months after diagnosis for individuals in their thirties with this variant; for people forty or more years of age, the decline to AIDS happens even faster. The increased virulence is an inherent property of the virus rather than a particular property of the individuals in this transmission cluster. Individuals who contracted this variant of HIV-1 responded to treatment the same as patients with other strains. CD4 rates improved at the same rate and mortality decreased at the same rate as patients with other strains. Eighty-two percent of these individuals were men who have sex with men. The treatments were much more successful when started immediately upon diagnosis. Early treatment prevents CD4 cell decline from leading to later morbidity and mortality; thus clinical, epidemiological, and evolutionary considerations are aligned. The discovery of a highly virulent and transmissible viral variant therefore emphasizes the importance of access to frequent testing for at-risk individuals and of adherence to recommendations for immediate treatment initiation for every person living with HIV. Read the full article here: https://bit.ly/3J8mIzY.

YOU TUBE YOUTUBE The Importance of the Slow Lane Claire Gasamagera Uses Social Media Video to Bring HIV Advice to Women

s an activist, Claire Gasamagera is always searching for new ways to share her insights about women and HIV, U=U, and her experiences of living with HIV since birth. She writes, attends workshops and conferences (in-person and virtual), and now has increasingly populated her YouTube channel with advice on issues facing women living with HIV/AIDS. On Gasamagera’s channel, you will find tips about HIV treatment, how to achieve viral suppression, addressing bullying, online dating, and more. Her warm personality comes through as she makes her points with depth and always a little humor. Subscribers won’t be disappointed! A&U recently had the chance to correspond with Claire Gasamagera. Chael Needle: Why did you decide to bring your message to YouTube? Claire Gasamagera: I decided to bring my message on YouTube because YouTube is a library in today’s digital world. Whenever I need a recipe for a pie, I know I can find a couple recipes and decide which one to use. I want women living with HIV to find different types of recipes of living with HIV. Living with HIV and being a woman come with a whole set of chal-

lenges and in our daily lives we are always looking for solutions/recipes to solve our problems. In my time, growing up with HIV, there were limited lived experiences of ordinary women living with HIV who look like me. In my YouTube channel, as one of the oldest people born with HIV, I use my personal experience and acquired wisdom to provide younger women living with HIV with solutions to their daily challenges. In today’s times, younger women are rarely looking for solutions by going to libraries, as they use the Internet. Unlike other social media platforms, content posted on YouTube is evergreen and women in different seasons of life can benefit from my experience and wisdom for many years to come. Also, I echo Phill Wilson, the founder of Black AIDS Institute, who said, “As black people we spent many years requesting a spot at the table; yet the most important thing is creating the table.” While the women living with HIV are advocating for fast-lane issues for women living with HIV rights, there are unsolved issues of women living with HIV I classify as slow-lane issues. Those issues include women’s... desire to have children and the complicated journey to motherhood. For instance, a big percentage of women living with HIV are women of childbearing age. All we hear is women’s rights to “abortion” yet we do not hear much about “babies, dating, pregnancy experiences, breastfeeding, advocacy for childcare benefits, maternity leave.” It is surprising that a substantial number of our HIV Inc. [institutions and organizations] do not have childcare or family policies. That’s leaving some women in need of a second look at slow-lane issues related to women. It wasn’t until I raised the issue of childcare at USCHA conference that we realized that women living with HIV who are activist do not belong in the “kitchen” …This idea of being punished to stay in the kitchen because I have babies is my worst fear! [In a column titled “Back in the Kitchen,” Gasamagera wrote about this issue for A&U in March 2017.] The journey to motherhood from dating to baby and beyond is filled with a whole set of slow-lane challenges that are often overlooked yet impact women living with HIV daily lives. I want my YouTube channel to answer those simple specific questions that women who desire to have babies ask themselves. • MARCH 2022

What do you want listeners to learn from your show? I want listeners to learn that women living with HIV are out there living their lives despite HIV-related stigma and discrimination. In our HIV community, we focus on big issues such HIV-related stigma, discrimination, and criminalization. As individuals we cannot end these issues [immediately], which leave people living with HIV sometimes feeling defeated. In my show, I want to show that, as people living with HIV, we still have power to significantly change our lives for the better. The foundation for a better life for us people living with HIV begins with starting and staying on HIV treatment. Then we take care of our body by committing to health and wellness, our minds by committing to emotional stability and mental healthcare, and our soul by committing to meaningful connections with people we love and the higher power we believe in to stay grounded. You mention U=U on several shows. Why is this message so important to you? For me the life-changing miracle starts with treatment: HIV treatment prevents me from getting opportunistic diseases; I grew up thinking they are part of my daily life. I am healthy: no chronic mouth sores, shingles or respiratory diseases; I look good, with meat on my bones, and have a round, curved body (very important for an African woman to feel sexy.) On top of that, the U=U message for me brings a light at the end of the long tunnel of living with HIV. The idea that I cannot pass HIV to sexual partners is liberating. The idea that we can have children free from HIV is mind-blowing. Thus, on my channel I preach the good news of U=U, encourage my viewers to stay on HIV treatment until they reach and maintain a viral suppression, and convert them into U=U disciples and join me to spread the good news of U=U around the world. Besides informing my viewers about the wonders of starting and staying on HIV treatment and U=U, I share struggles related to staying on top of HIV treatment.

MARCH 2022 •

For example I have been on HIV treatment for over twenty years: I share my struggles at different seasons of my life and how I have overcome them. Anything else you wanted to cover? Our different experiences living with HIV make our history…and our history determines our legacy. Our differences make us stronger, not weaker. I have been getting social media attacks from men in our community who do not like my show even though my channel focuses on women. I would like men living with HIV to show grace when women, especially black immigrant women living with HIV like me, are sharing their experiences. It takes some gut to navigate a new culture and language to convey a message. In fact, HIV and AIDS have affected the entire world; nobody has ownership of the story of what it means to live with HIV. Our stories matter; thus men living with HIV who have had a platform for a long time should never try to silence women living with HIV. In my experience I had white men reach out to me to express their disdain of my YouTube channel…some bullied me and called me names …one white man said I should die…. I bring this up because many other black women speaking English with an accent are bullied by supremacist ideas in our HIV community and they retreat because they do not have a thick skin like mine. English is my seventh language. I make an extra effort to communicate my message …please do not bully me… if you do not like the message, there are millions of Youtubers you can follow. In my mother tongue we say that “the sky is so huge even birds never collide.” To watch and/or subscribe to Claire Gasamagera’s channel on YouTube, visit: https://bit. ly/36n0ZGk. Follow Chael Needle on Twitter @ChaelNeedle.

Amida Care is here for you, as always. When you’re ready, our Medicaid health insurance gives you access to: $0 monthly premium and low/no cost copays A large network of doctors, hospitals, pharmacies, dentists, and more

Treatment and preventive care for a safe, healthy sex life, including PrEP and ARVs Health advocates to help you every step of the way Help with housing referrals, job training, and other support programs

HEALTH. ADVOCACY. CARE.

www.AmidaCareNY.org

STANDING STRONG with you and for you. Contact us for confidential answers: 1-855-GO-AMIDA (1-855-462-6432), TTY 711 Amida Care complies with Federal civil rights laws. Amida Care does not exclude people or treat them differently because of race, color, national origin, age, disability, or sex. ATENCIÓN: si habla español, tiene a su disposición servicios gratuitos de asistencia lingüística. Llame al 1-800-556-0689, TTY 711. 注意：如果您使用繁體中文，您可以免費獲得語言援助服務。請致電 1-800-556-0689, TTY 711. Stock photo with model.

A Calendar of Events

lifelines

Ever have questions about your HIV health to which you cannot find answers? Or you find answers but they are not in-depth enought? ACRIA Centers @ GMHC is offering a vital resource for people living with HIV/AIDS that will help—a new slate of health-focused webinars. Throughout March, the Take Charge of Your Health: A Workshop for People with HIV online series will cover HIV treatment updates (March 3), HIV drug resistance/lab results (March 17), and self-advocacy/aging with HIV (March 31). Each webinar is two hours-long and March webinars are from 2 p.m.–4 p.m. EST. The in-depth webinars are presented in easy-to-understand language that will give you key takeaways and help you stay on top of your health. The webinars are free but participants must register ahead of time. Follow these links: Take Charge of Your Health: HIV Treatment Update (March 3): https://www.eventbrite.com/e/215964986087; Take Charge of Your Health: HIV Drug Resistance / Understanding Lab Results (March 17): https://www.eventbrite. com/e/215966941937; Take Charge of Your Health: Self Advocacy, Aging with HIV (March 31): https://www.eventbrite. com/e/215967634007. For more information, log on to: https://bit.ly/3s0zpqV.

MARCH 2022 •

My Dear, HIV

POETRY

11.23.21

I’m at the bar again now, waiting on my tenders. Having a Gay Beer at Julius’, you know the spot. Cutie beside me asked me what was I writing & when I told him he said he had to go. I just laughed. Most people when I tell them I’m writing love letters to you they give me that oh yr crazy look. More I write these though the more I realize it’s all just stuff about my life I wanna tell you cause if you know then at least someone else in the world will know & I won’t be all alone in my experiencing. I quit that old gig. Starting another one soon. None of this is what I really wanna say to you but then again I guess in a way it is——an abundance of inconsequential daytime living to report even though yr there for all of it. It’s not that I need you to know it’s that I want to tell you. Does that make sense. I mean I wish there were harmless little unknown things between us. Not this steelwool hedge for miles I am always gnawing. I want to fill you in but I’m too full to the split w/ you already there’s hardly any room in me for me anymore. Do you remember David. Peter. Marlon. How about Tory. Do you remember Magic. Do you remember every body those still here & those still not. I want you not to ever forget any their names even the ones I don’t know & will never know on account of time doing its revelating. I ran into Morgan earlier & those few minutes made me happier than any thought of you, even though you were kindof the matchmaker I mean yr the thread my whole life is beaded through. “We need a holiday” Madge is singing but there’s no such thing as a day without you for me, is there. —Cea (Constantine Jones) Cea (Constantine Jones) is an interdisciplinary Greek-American thingmaker raised in Tennessee & housed in Brooklyn. Their visual and text art is housed in the Artist+ Registry at Visual AIDS, where they also work as the Oral History Project Liaison. They write/perform/collaborate with the collective, What Would An HIV Doula Do? and also facilitate workshops at The City College of New York, Brooklyn Poets, Liminal Lab, Housing Works and elsewhere. They are the author of the hybrid print-document, IN STILL ROOMS (Operating System 2020) and a collaborative chapbook with Portuguese visual artist Vicente Sampaio, BALEEN: A Poem In 12 Days (Ursus Americanus 2022). Their work has been performed or exhibited at various venues across NYC and Tennessee.

• MARCH 2022

Brian had his HIV under control with medication. But smoking with HIV caused him to have serious health problems, including a stroke, a blood clot in his lungs and surgery on an artery in his neck. Smoking makes living with HIV much worse. You can quit.

CALL 1-800-QUIT-NOW.

#CDCTips

HIV alone didn’t cause the clogged artery in my neck. Smoking with HIV did. Brian, age 45, California

HOW DOES HIV TREATMENT WORK AS HIV PREVENTION Starting and sticking with HIV treatment every day helps lower the amount of HIV in your body. It can get so low it can’t be measured by a test. That’s undetectable. Less HIV in your body means it causes less damage. And according to current research, getting to and staying undetectable prevents the spread of HIV through sex. It’s called Treatment as Prevention. Or TasP for short. There’s no cure for HIV, but if you stick with treatment you can protect yourself and the people you care about.

Talk to a healthcare provider and watch It’s Called Treatment as Prevention at YouTube.com/HelpStopTheVirus