Despite considerable progress made in some parts of the world regarding HIV awareness and treatment, the epidemic continues to impact tens of millions of people globally. In the US alone, over 10,000 people die of AIDS complications each year. To a great extent, it is a prevalent lack of education and lingering stigmas around HIV that perpetuate the virus’ spread.
Jack Mackenroth, an American model, fashion designer, adult film actor, and reality TV star has been one of the most vocal HIV activists in the US, opening up about his status on national television and raising awareness of the issue long before HIV was discussed in mainstream spheres. Screen Shot spoke to Mackenroth about his journey as an HIV activist and mentor, and how social media and the adult film industry impact his activism.
1. How did your personal experience lead you to become publicly vocal about HIV issues?
I was diagnosed [as HIV positive] in 1990, but I actually seroconverted in 1989. I was 20. Back then everyone was dying very quickly, so I just assumed I’d be dead in a few years. I’ve always been a realist and I don’t really keep secrets, so I told my close friends that same day. The event that really gave me a public platform was disclosing my positive status on Project Runway. I was on season 4 and it was the height of the show’s popularity. I made a very conscious decision to speak about it on the show, and I basically became the US HIV poster boy overnight. I was on tons of TV programs and magazine covers. It was big news because it was 2008 and people had pretty much stopped talking about AIDS.
2. What were some of the early forms of HIV activism you initiated or took part in?
I had always volunteered since my diagnosis. I delivered meals to people who were homebound. I did AIDS fundraisers and events like that. It just really exploded after appearing on national, and then international, television. I also think that just being vocal and visible is a very powerful form of activism.
3. How do the internet and social media impact your activism?
That’s a great question. I was immersed in the HIV media culture, and used to do a ton of media and share it on my platforms. But it was exhausting and I wasn’t getting paid for my time. I do think it was, and is, really important to publicly show someone who is HIV+ for 30 years and still doing really well. Apparently, if you Google ‘HIV’ my name comes up fairly quickly, so I still get a ton of outreach, mainly from newly diagnosed guys from around the world. Often they are freaking out because they think they’re the only ones.
4. In what ways do you support HIV positive people who reach out to you?
I take my role as an HIV mentor quite seriously. You have to understand—I was only 19 when I seroconverted and there was really no help for me. I’m sure I have some form of PTSD from it all. I had a partner die in 1996. Many friends died quickly. It was hideous. So if someone I don’t know seems to need help—I feel an obligation. I have FaceTimed with people I don’t know to just talk. For some, I am the first person they have ever told. I think it’s a relief to just let go of the secret and ask questions without fear of judgement. I try to calm their fears and make sure they get access to meds immediately. I used to keep letters and emails from people. I know I’ve stopped at least a dozen people from committing suicide.
5. Do you find a difference in attitude among HIV positive men depending on the region or country they’re from?
Unfortunately very much so. I don’t always know what policies are in place or what HIV laws could affect the individual. So I’m sensitive to that. Did you know that not disclosing your positive HIV status before sexual behaviour is still a felony in about 30 states in the US? If convicted, you are out on the sex offenders list forever. The only effect that law creates is that people don’t get tested. Because you can’t lie if you don’t know. So people still die of AIDS in this county—about 10,000 people a year—when it’s totally manageable. And that’s after we know that if you are HIV+ and undetectable that you cannot transmit HIV. So, I try to discern what resources they have in their country and go from there.
6. Tell us a bit about your career as an adult film star. What platforms do you use, and how does it tie to your HIV activism?
Earlier this year I announced I’d be stepping away from HIV activism because I was fatigued and I just needed a break. I started in the adult industry on Only Fans and Just For Fans to make money while I go back to school, and because my social media followers kept begging me to. I have zero judgements around sex and nudity, so I figured what the hell. Unexpectedly, that became another avenue for visibility. Uneducated people didn’t understand I could have sex without condoms with no risk of transmitting HIV. So it spawned a lot of conversations. I am planning a project with all our HIV+ performers later this year and that will also do a lot to educate. One of the most common comments I get from newly diagnosed [people] is that they are scared to have sex or they don’t feel sexy. That’s silly. I know it’s a shock at first, but HIV+ guys are often the safest as we get our blood-work done most frequently.
7. What do you believe the role of the adult film industry should be in HIV activism?
Honestly, I think they should take a much larger role. But the stigma is still very real. Many of the studios are owned by “straight” parent companies and they just don’t get it. The testing laws are antiquated. Many people look up to adult performers and if they were open about their status it could make a huge impact.
8. What stigmas and misconceptions about HIV still linger, and why do you think that is?
The ignorance I encounter on a daily basis is shocking and saddening. We’ve made a lot of progress, but we have also regressed in some ways. People don’t understand what undetectable means. They don’t trust PrEP. They assume that you’re a whore and that you deserved it.
9. Where do you think needs to be the focus of HIV activism now, and what do you envision for yourself in the future as an HIV activist?
I really think the message of early testing and early medicating needs to be common knowledge. We need global universal healthcare. We all know Big Pharma and the healthcare system are corrupt, and are profiting off of sick people. It’s disgusting. They should be ashamed. I will continue to speak openly and guide those who need my help. Visibility is essential. If every HIV positive person came out today, I think the world would be shocked. We are everywhere. It’s much more comfortable to keep it to yourself, but you may be stopping one person from killing themselves by speaking your truth. Be brave.
This year’s Bi Visibility Day sparked a wave of discussions, testimonials, and a handful of arguments on social media revolving around the too-often-marginalised group standing for ‘B’ in LGBTQ: bisexuals.
Screen Shot spoke to Robyn Ochs, one of the pioneers of bi activism, in order to get her viewpoint on both the struggles and achievements of bisexual individuals, and find out what she envisions for the community in the years to come.
For several decades, Ochs has been on the frontlines of LGBTQ activism through her work as a writer, teacher, and speaker. From serving on the board of MassEquality, a grassroots organisation advocating for the legal rights of LGBTQ+ people in Massachusetts, to publishing books and running programs and workshops across the U.S., Ochs has been continuously promoting LGBTQ protections and rights. One of the reasons she stands out as a queer activist, however, is her long and relentless fight for the recognition, visibility, and equality of people identifying as members of the bi+ community.
“On Bi Visibility Day I wore a very obviously bi t-shirt all day long,” said Ochs, “in airports, and everywhere I went. I did it because I find it very easy to wear an LGBTQ t-shirt all day every day, but harder to wear a bi t-shirt, because I know I’ll bump up against a lot of stereotypes when I do that.”
Ochs is widely known for her monumental quote, which has been embraced by many as the most precise and inclusive definition of bisexuality: “I call myself bisexual because I acknowledge that I have in myself the potential to be attracted—romantically and/or sexually—to people of more than one gender, not necessarily at the same time, not necessarily in the same way, and not necessarily to the same degree.”
The bisexual identity label strikes many, both within the queer community and outside of it, as an enigma. Often, people doubt bisexuality even exists, while others stigmatise bi individuals as greedy, untrustworthy and dishonest. “Within the LGBTQ+ community, the most frustrating stereotypes for me are that we are not true ‘citizens’, that we are not fully committed to the LGBTQ+ movement, that we don’t experience oppression… that it’s easy to be bisexual,” said Ochs. “What I reference in this is the data—that identifying as bi comes with its own mountain of stereotypes, which are not exactly the same as the stereotypes that gay men and lesbians have to deal with.”
In her work, Ochs attempts to debunk the many stigmas surrounding bisexuals, and shine a spotlight on their unique struggles for self-determination and recognition. She does so, for instance, in her two published anthologies, Recognize: The Voices of Bisexual Men and Getting Bi: Voices of Bisexuals Around the World, in which she presents essays, fiction, poetry, and other writings penned by bi+ individuals and offers glimpses into the complex and rich world of this community. Through her writings, speeches, and programs, Ochs also offers tools and resources for people struggling to embrace their bisexuality, advice for parents and allies who wish to support their loved ones, as well as addresses some of the most pressing hurdles and disparities the bi+ community faces, one of which is access to healthcare services.
“Bisexual people face a lot of health disparities, similar to and in some cases even higher than lesbians and gay men,” says Ochs. The data emerging in recent years confirms Ochs’ claims, and portrays a rather grim picture regarding both the mental and physical health of members of the bi+ community.
In a recent survey, the Human Rights Campaign (HRC) states that, “Compared to other groups in the LGBTQ community, bisexuals face striking rates of poor health outcomes ranging from cancer and obesity to sexually transmitted infections to mental health problems.” HRC data further indicates that bisexual individuals are significantly more prone to depression, suicidality, and anxiety, and that only “13 percent of bi+ youth received information about safer sex that is relevant to their identity”. “We need to educate healthcare providers,” Ochs stated, “It’s a topic that needs a lot of attention because healthcare providers are not, generally, educated about LGBTQ issues through their curriculum, and bisexuality is rarely, if ever, covered.” Ochs’ current program addresses precisely this problem. Throughout October, she will be travelling across the U.S. discussing bisexual health at medical schools and hospitals’ conferences.
Health disparities among LGBTQ+ individuals will be extensively covered in Bodies and Barriers, an anthology that will come out in January 2020 and will include a chapter written by Ochs on bisexuality. “I wrote a chapter about some of the very specific negative and positive experiences that bi+ people had had with healthcare providers, with the hope that if you are a healthcare provider it will help you be more culturally sensitive and aware of what some of the fears and challenges that people who identify as bi+ face.” “I believe that that’s one of the areas we need to address moving forward, we need to reduce the disparities,” she added, “It needs to not be so hard to identify as bi. We need to make it a more comfortable identity for people to hold.”
Yet despite the significant disparities and pervasive stereotypes faced by bisexuals, the community has nonetheless been making notable strides as far as being visible, Ochs claims. “We’re starting to show up in popular culture. More and more actors and artists are coming out as bi or bi+ or pan or queer. If you asked me to list a hundred people who have come out as bi or bi+ in popular culture or the media I could probably get pretty close these days, off the top of my head, without notes. If you had asked me that question 20 years ago I would be counting on one hand. And that’s a huge change,” said Ochs. “They’re doing a huge service in the interest of complexity. They’re holding out their identities and they’re doing so publically, proudly, and without apology, and there’s power in that.”
Another indication of increasing bi visibility lies in the rising percentage of young people identifying as bi. Ochs pointed out that a Centers for Disease Control (CDC) survey of high school students in the U.S. from 2015 found that 2 percent of the respondents identified as lesbian or gay, 6 percent as bisexual, and 3.2 percent as ‘unsure’. The same type of survey from 2017, however, reported that, nationwide, 2.4 percent of respondents identified as gay or lesbian, 8 percent identified as bisexual, and 3.6 percent were unsure of their sexual identity. “And so that’s another place bisexuality is showing up, it’s showing up in the actual identities of young people—starting with millennials, and moving down to youth,” said Ochs. “The percentage of people identifying outside of straight is going up pretty consistently every year, and the number of people identifying as bisexual is going up most of all.” That kind of data is very powerful,” Ochs said, adding that she would like such information to become more well-known, “If you’re in tenth grade and you’re coming out as bi and you see that data, you say ‘eight percent, huh? Okay, I’m not alone’. That’s validating.”
Ochs believes that the best way to make bisexuality a more comfortable label to embody in the long run is to keep spreading our stories, both among family and friends, as well as in the media. “We need a lot more cultural production,” she said, “We need to create novels and stories and plays and anthologies and YouTube videos and films and theatres because I believe that understanding comes largely through story-telling. So we need to figure out as many ways as possible to get bisexuality represented in a good way. To create narratives, create visibility.”
Bi+ individuals have a long way ahead when it comes to achieving true equality and recognition, and overcoming the challenges associated with living life outside the binaries. Yet we must remind ourselves that the cause of our hardship is also what makes us unique and powerful. It helps to have the guidance of leaders like Ochs, but it is ultimately up to each of us to take up the torch and illuminate our surroundings, often simply through our unfiltered presence. Ochs’ message to us is clear: “Get out there.”