The annual Christmas Stocking Auction at the Round-Up Saloon on Sunday, Dec. 14 raised $19,000 for Legacy Counseling Center’s Legacy Founders Cottage. Founders Cottage provides hospice and rehabilitative care for people living with HIV.
How HIV stigma is damaging our community today… and at least one way it could serve a higher purpose
By Lawrence Ferber
Editor’s Note: Some of the names and some details in this article have been changed.
Stigma: a mark of disgrace associated with a particular circumstance, quality, or person.
Hearing the words “I’m HIV-positive” made Bryan freeze.
A 23-year-old graphic designer, Bryan had met a guy at a Manhattan gay club, a svelte 25-year-old tourist named Zach, with whom he danced, drank and laughed. Around 1 a.m., just before heading to Zach’s hotel for more private activities together, the tourist disclosed his positive HIV status.
His viral load was undetectable, successfully suppressed with a drug regimen to the point that there was low to no risk for transmission. He was clear of other STDs, and he had packed an ample supply of condoms.
Still, Bryan declined to go back with him, offering up a politely worded excuse rather than saying what he really thought: “I don’t sleep with HIV-positive guys.”
But Zach had heard those words, or variations on them, more than a few times since he had diagnosed a couple of years before. And he could see thetruth clearly in Bryan’s green eyes.
He felt like shit — judged and tainted. But while Zach wouldn’t lie and tell someone he was negative, he understood why so many others in his shoes did.
Bryan ended up hooking up later that same night at another bar with an architect-in-training from Chicago named Alex, who said he was negative.
Here’s the twist: When he turned Zach down that night, Bryan was actually already HIV-positive, even though he didn’t find out until about six months later. That’s when he went in and got tested for the first time in three years, having put off being tested because he was afraid of what he might find out, thanks to a bareback encounter with a man he met on Grindr, a man who deleted his Grindr profile the next day, disappearing as if in a puff of smoke.
Matthew Rodriguez with the comprehensive HIV/AIDS resource website The Body, noted: “Stigma is really damaging on both ends. For negative people, stigma can sometimes stop them from getting tested. If they feel they did anything that put them at risk, they may not want to get tested because the result may be devastating.
“I think it also stops people from interacting with those living with HIV as full people,” he continued. “People just look at you as a status, as a virus. It can also stop people from going to the doctor or seeking treatment, because that’s admitting they have the virus.”
At best, HIV stigma can lead to emotional sting, lost connections and deep blows to self-esteem. At worst, it can cause life and career-threatening discrimination and behavior that is dangerous and destructive to oneself and to others.
A recent study by Houston’s LIVE Consortium on the topic of HIV stigma within the gay/bisexual male community was published in the International Journal of Sexual Health. It concluded that, “Because it is realistic to expect that in a climate in which HIV has become increasingly invisible and closeted and in which infections are on the rise [due to stigma], gay and bisexual men will be increasingly affected and infected by HIV.”
Numerous organizations and campaigns are addressing HIV stigma, from those created exclusively for that purpose, including the two-year-old The Stigma Project and HIV Equal, to online resources like The Body, Avert.org, and HIV Plus, to hookup apps like MISTER.
The latter, in collaboration with Michigan’s Mr. Friendly HIV nonprofit, allows members to declare a commitment to “Live Stigma-Free” and date individuals of any HIV status on their profiles.
Despite these, stigma is only getting worse within the LGBT community, a fact LIVE’s disheartening study backs up.
Olympic gold medal diver Greg Louganis, who is himself HIV-positive, said: “I find often that stigma is self-imposed, out of undeserved and unwarranted shame and guilt.”
Louganis has HIV-positive since the 1980s, and his life is chronicled in the new documentary, Back On Board, currently making the rounds at festivals.
“The biggest problem is it inhibits open communication,” Louganis said, “and we still in this society have a difficult problem talking about sex.”
Longtime AIDS activist Peter Staley, a subject of David France’s Oscar-nominated documentary How To Survive A Plague, describes stigma as, literally, a “viral divide between those who perceive themselves to be negative and those who are positive. There are a lot of negatives to living with HIV the rest of your life — having to keep your health insurance in order, meds, side effects — but the big one now is the stigma.”
He continues, “I think a large number of negative men, especially if younger, try to avoid HIV just by avoiding people with HIV. They think they’re protected by a kind of moral code where a positive guy would disclose. On the flipside, the positive guys are so threatened by that stigma that they keep their status a secret, and that perpetuates the false assumption by many negative guys there isn’t a lot of HIV in their world.
“They think it isn’t something playing out in their generation that much, even though it is.”
New Yorker Steven Colon, a 21-year-old videogame design student diagnosed with HIV this past summer, now knows this sobering reality firsthand. Prior to his seroconversion — because he preferred barebacking with some partners, Colon opted for frequent HIV testing to keep tabs on his status — Colon only had sex with partners who identified as HIV-negative. He says he didn’t choose to have sex only with HIV-negative men; it was just that none of his partners ever told him they were positive.
After finding out he was HIV-positive, Colon contacted his sexual partners, but none of them have come forward to say they were actually positive or that they have tested positive since.
“It’s a little upsetting I don’t know who it is,” he admits.
Colon, who promotes a monthly superhero/spandex/lycra-themed party at NYC’s Pieces bar (called Skintight USA), found some immediate support amongst a couple of friends who, coincidentally, also tested positive at about the same time.
Staley feels that a major failing with most anti-stigma campaigns is that they “preach to the choir” and so fail to reach their target audiences — such as those gay millennials whose new infection rates are, as illustrated by Colon’s social cluster, rising.
On the ACT UP NY Alumni Facebook page last month, member Rebecca Reinhardt reported some flabbergasting, ill-informed comments and opinions she overheard at a West Hollywood happy hour for Ivy League 20-somethings.
These pearls of overheard misinformation included: “Condoms are useless, since they always break and you have only a 2 percent chance of getting HIV from unprotected sex anyway,” and PrEP “is a waste of money since it’s just for sex addicts anyway. “
Staley interjects, “I’m not wagging my finger at these guys. This generation of young gay men is no worse than mine. They’re just living in different times. When I was 20, I also perceived risk very differently, and was very dismissive of things that happened earlier in history and that I didn’t think applied to me.”
One exception when it comes to prevalence of stigma and misinformation seems to be San Francisco, where many early PrEP adopters live. Even those who argue that PrEP encourages reckless behavior that can cause upticks in other STD infections — like Hepatitis C — are at least having open communication.
“San Francisco is the shining example of where, if you put stigma on a locality ranking scale, you’ll find the least stigma of anywhere in the country,” Staley says. “They also have a very low HIV infection rate because guys there talk and think about HIV, and [use] a much more reasoned risk analysis.
“There will be a negative guy sleeping with positive guys, but asking about their viral load and making certain decisions determined by that,” Staley says. “That sophistication is lost on many young gay men outside San Francisco and New York City. I want to figure out the best way to reach them, and its likely going to come from [within] their generation, not mine.”
Activist Jack Mackenroth, who was open about his HIV-positive status while a contestant on Project Runway, agrees that it’s difficult to get people who don’t think — who don’t want to think — that HIV directly affects them engaged. He feels that once PrEP use grows more widespread, medical treatments advance and positive people become more visible, HIV stigma will dissipate.
Yet with stigma winning the battle today, is it possible to take this destructive force, reprogram it and somehow wield it for constructive, prevention-forward purposes? To replace fear and loathing with understanding and empathy, and to ultimately humanize HIV-positive individuals?
Perhaps — and in a handful of sizes.
“It would be useful to set someone down and say, ‘Imagine you are positive,’” Mackenroth muses. “You want to know what it feels like, wear a t-shirt saying you are positive all day long. You will know what that that’s like.”
That’s exactly what Kevin Maloney’s Rise Up To HIV is doing with its “No Shame About Being HIV+” T-shirts. Members of New York University’s First Year Queers & Allies leadership program wear these to experience reactions from those who would perceive their shirt as a status announcement.
It’s a start, and an experiment that more schools and colleges should look into.
“I’ve worn it and gotten mixed responses,” says Rodriguez. “Honestly, anyone can get HIV. The whole problem with stigma is [it perpetuates that] someone had to do something wrong to get HIV.
“But we know from science that with gay men, two-thirds of infections happen within the context of relationships,” Rodriguez continues. “I applaud people who don’t let status stand in the way of having a sexual relationship. It’s usually not the positive and on treatment guys one should be second-guessing. It should be the ones who don’t know. The only ones who know their status for sure are positive.”
Remembering Ryan White and the millions of gay men who died during the darkest days of our AIDS crisis
By C.L. Frederick
It’s easy for the LGBTQ community to forget the past, since we are always looking forward and breaking down the societal barriers that have held us back for eons. I for one have been guilty of forgetting our past struggles for the sake of moving our community forward socially and, in all honesty, because I never believed our history applied to my life.
Then I was diagnosed with HIV. That was certainly was expectedly a life changing experience, but it also changed the way I looked at the gay community. Stories from our past became my saving grace.
I found myself being re-introduced to the era of the death sentence and I realized that I owed a debt of gratitude to those who came before me during the early days when medicine and treatments were not advanced enough to save lives, those who died during the time when HIV/AIDS was looked at as the “gay disease,” when hate and ignorance were mixed into one’s fight to live.
I was just a boy when AIDS began to enter the public consciousness, and I acutely remember hearing news reports and adults in my life discussing this “gay epidemic.” I just wanted to know why so many people were dying and why people on the news and the grown-ups I respected lacked sympathy for them.
I picked up on the vitriol being spewed at gay men with HIV/AIDS and it was jarring for me. News reports on TV seemed to shame these men and I was confused as to why that was. Then a few years later I heard about a boy named Ryan White who acquired HIV/AIDS through a blood transfusion.
He was a boy close to my age and I found myself paying attention to his story. He seemed so strong and was so well spoken. Here was a boy fighting for his life, growing gravely ill from his disease and treatments, a boy who encountered a great deal of hate and ostracism from all over the country because he wanted to simply go to school and be a part of his community.
Such hostility aimed a boy who did nothing to deserve the social prejudice added to his fight to live!
I could identify with Ryan and I continued to follow every bit of information concerning his journey as a youth with AIDS. This was not an interest that I could share with my family or friends, but my soul was rooting for him.
Ryan did not survive his fight against HIV/AIDS and when I learned of his death I was quietly heartbroken. Ryan’s life was quite possible the first human interest story to have an impact on my own humanity.
The years following Ryan White’s death saw HIV/AIDS treatments advance and prolong lives. I began to come into my own as a gay man and started to forget about those who had died. People with HIV/AIDS were living longer and issues like LGBTQ equality and gay marriage were on the cusp of national and worldwide attention.
I would think of Ryan’s life from time to time, but I failed to realize how globally impactful his story was and should continue to be.
After learning I was HIV-positive, I found myself searching for stories to relate to, stories to comfort me in my time of need.
One night I watched the HBO movie The Normal Heart, and I was reminded of the struggles gay men with HIV/AIDS dealt with at the onset. I don’t cry much, but watching the movie was an emotional rollercoaster for me. I have never been moved to that extent or cried so much because of a film.
To be reminded of those who came before me was a painful and humbling moment. The cards were stacked against them during that time: medications that would put a body through hell, men fighting to live only to be beaten down by society and ignorance in the process, and the fact that most knew they were dealing with a death sentence.
I am able to live a fairly normal life as a positive man today because of their voices, their fight and their bravery to live in the face of so many painful obstacles constantly working against them. Living with HIV/AIDS today still has its challenges. It is still a mountain of obstacles to overcome to remain healthy and get access to medications and treatment.
But the fact is that I only deal with a fraction of the challenges that those who came before me encountered. We have lost millions of voices that could have told us billions of stories. And I can’t help but think how different life would be today if we never had to lose any of those men.
What plays would have been written? What art created? Would one have become our first gay president? Was one my soul mate?
I get to live today, but I fully realize that all who have died of AIDS deserved to live just as much as I do. I will never again forget the legacy of Ryan White and the men who came before me.
The Transgender Law Center will use the funds to form a national advisory board of eight to ten trans people living with HIV, with a strong focus on trans women of color. The advisory board will assist in a systems gap assessment, identify best and promising practices in community response to HIV and issue recommendations.
“With the support of the advisory board, Transgender Law Center will engage the community meaningfully in the examination of how systemic barriers and social conditions (such as discrimination, transphobia, criminalization and violence) drive the HIV epidemic and negatively impact health outcomes.” said Cecilia Chung, Senior Strategist of Transgender Law Center. “This will also give us an opportunity to support and strengthen the leadership of some of the most vulnerable members in the transgender community.”
Resource Center officials announced Wednesday, Oct. 8, that their agency has received a $22,500 award from the Design Industries Foundation Fighting AIDS/Dallas (DIFFA/Dallas) for the center’s nutrition programs. The money was awarded at an event held Sept. 12 at Roche Bobois.
Resource Center offers nutritional services through its food pantry as well through its hot lunch program.
The pantry, which began in 1985 out of a cardboard box at the intersection of Cedar Springs and Throckmorton, is presently located 5450 Denton Drive Cutoff and serves around 1900 clients every month.
The center began a hot lunch programs for its clients in the early 1990s. It is one of two agencies in Dallas County providing hot meals in a nonresidential setting to those living with HIV/AIDS, making the critical link between nutrition and treatment adherence. More than 100 clients a day eat lunch at the center Monday through Friday.
DIFFA is the oldest and one of the largest funders of HIV/AIDS service and education programs in the United States. Founded in 1984, DIFFA has mobilized the immense resources of the design communities to provide over $38 million to hundreds of AIDS organizations nationwide.
With events including the House of DIFFA each spring, DIFFA/Dallas has granted nearly $7 million to organizations across North Texas, including Resource Center. March 2015 will mark the 25th anniversary of the House of DIFFA.
Ron J. Anderson, M.D., president and CEO of Parkland Health and Hospital System for 29 years, died Thursday, Sept. 11 of cancer. He was 68 years old. As of Friday morning, services were pending.
Anderson took over as head of Parkland in 1982, when he was 35 years old and when the AIDS epidemic was in its early days. Anderson was head of the county hospital when, in the late 80s, the Dallas Gay and Lesbian Alliance (then called Dallas Gay Alliance) and Ron Woodruff of Dallas Buyers Club fame, filed — and won — the lawsuit that forced Parkland to treat people with HIV.
Anderson was named president and CEO after serving two years as medical director of the hospital’s emergency room and outpatient clinic and head of the University of Texas Southwestern Medical Center’s Division of Internal Medicine. He retired from Parkland in 2011, after spending his last years with the hospital leading the bond campaign that brought in public financing for the new $1.3 billion facility due to open next year.
In the mid-1980s, Anderson grabbed national attention when he spoke out against the practice — called patient dumping — of transferring medically unstable patients from private hospitals to public hospitals based on the patient’s ability or inability to pay, leading to passage of state laws regarding indigent care in Texas and later federal legislation banning patient dumping.
According to a press release from Parkland announcing his death, Anderson was known as an advocate of universal health care and for leading development of Parkland’s Community Oriented Primary Care health centers. He came to national attention again in the mid-1990s as a spokesperson in the movement for better confidentiality regarding the patient/physician relationship.
Anderson once said, in a speech to a UT Southwestern graduating class, “It is not enough just to try ‘to do good’ and try ‘to avoid evil,’ although these are the ethical keystones of the physician/patient relationship. We cannot be paternalistic toward patients and must accept their cultural, religious, ethnic and social differences. We must respect our patients’ autonomy and desire for wholeness, which should stimulate us to address the social justice issues affecting our patients’ lives.”
Greg Nevins, a Lambda Legal counsel and Workplace Fairness Project strategist based in the agency’s Atlanta office. said that workplace issues continue to be a major concern among those who call Lambda Legal’s Legal Help Desk. The new Know Your Rights Workplace site “will help people advocate for themselves as well as assist them if issues arise,” Nivens said.
He said the hub will soon be mobile-friendly and translated into Spanish. It includes legal and advocacy guidance on a wide array of issues, including what to do if you experience discrimination, what laws protect you, HIV discrimination in the workplace, what to do if you are fired, gender identity discrimination. job searches, immigrant rights, good company policies, how unions can help and same-sex spousal and partner benefits.
Dallas activist C.d. Kirven told Dallas Voice today, via email, that efforts to get Tulsa police to investigate the death of gay man Benny Longoria are moving forward.
A friend found Longoria, 40, dead in his apartment on June 20. But the man’s family said police did not contact them until a month later, that police had Longoria’s body cremated without notifying them and that police have refused to return his possessions, including his cell phone.
A representative of the company that manages the apartment complex where Longoria lived said that the apartment and most of his possessions were covered in blood when his naked body was found. Police have refused to investigate the case as a suspicious death.
Today, Kirven said the case is being investigated as possible HIV/AIDS-related discrimination, and that she has helped the Longoria family filed a complaint with the U.S. Justice Department alleging a violation of the Americans with Disabilities Act. Kirven also said she is helping the family file a complaint with the Internal Affairs division of the Tulsa Police Department.
Tulsa Police Sgt. Dave Walker reportedly told the family that Benny Longoria’s doctor verified that he died of a combination of ethanol abuse and HIV/AIDS. But Kirven said that when she contacted the office of Longoria’s physician, Dr. Frances Haas, she was told that Dr. Haas had not confirmed any cause of death and had not signed a death certificate.
Kirvin said today that she has obtained a copy of Longoria’s death certificate, which has not been signed by any doctor. She said Dr. Haas is mailing Benny Longoria’s medical records to his family and “wants nothing to do with Benny’s death.”
She also said that Capt. Alexander has said that because the doctor has not signed the death certificate, by law Longoria’s death has to be investigated as a suspicious death.
A memorial in celebration of Benny Longoria will be held Saturday at 5 p.m. at Compadres Mexican Grill, 7104 S. Sheriden Rd., in Tulsa. For information contact C.d. Kirven at 972-533-1593.
Kirven said that several TV stations have said they will be covering the memorial service and vigil, and that she was faxing a copy of the death certificate to KRMG radio in Oklahoma City, which is planning coverage of the case. She has also talked to a reporter with Vice.com.
Tulsa-based reporter Richard Fricker called Dallas Voice today in an effort to contact Kirven, and said that he knows of similar cases that have happened in Tulsa.
Dallas Voice will, of course, continue to follow this story as it unfolds, and will have a representative at the memorial service in Tulsa on Saturday.
Matthew Louis Reese, 31, was given 95 years in prison this week, in part because he gave HIV to a minor.
The Dallas man pleaded guilty to three charges — aggravated sexual assault of a child with a deadly weapon, aggravated sexual assault with serious bodily injury and sexual assault of a child. The deadly weapon is HIV.
The victim was a 15 year-old girl at the time. She is now 17.
The two met on a chat line and spoke for months before first having sex. Reese never told the girl he had HIV and did not use a condom.
Missing from any reports is why the girl’s parents bore no responsibility for monitoring who their 15-year-old daughter was dating.
Apparently Reese was not in treatment for his HIV and had a viral load count high enough to pass along the disease. He must serve half of his sentence before he is eligible for parole.