Renowned Designer Tom Hennes Isn’t Defined by HIV

Originally split between designing for the theater and being a photographer, Tom Hennes found a true calling in his firm Thinc Design, a highly respected agency that creates exhibitions and attractions across a diverse portfolio. Hennes has used his skills and intuitive judgment to build some of the world’s most high profile projects—like the Sustainability Pavilion at the upcoming Expo 2020 in Dubai, the 9/11 Memorial & Museum, the Steinhart Aquarium at the California Academy of Sciences, and much more.

Last fall, Hennes wrapped the second phase of a spectacular reimagining of the Empire State Building’s Observatory. Immersive exhibits merge the building’s unique history with its evolving role in popular culture. There’s even a section where visitors can plunge themselves into an epic scene with King Kong himself.

Diving deep into history is a driving force behind Hennes’s creative process, and truth be told, not much has changed since he began as a young student in Berlin where he spent six months walking the streets and taking pictures of people to “formulate a portrait of individuals there that are just searching for an essence.”

Hennes speaks during The Empire State Building Four-Year Renovation Of The Observatory Experience Reveal in New York City.

Like many starving artists, his move to New York City happened on a whim when a friend of a friend was directing a series of new plays at a festival and asked if Hennes would come design the sets. It was the beginning of an incredible career, but the moment also represented the height of a bubbling queer scene that would ultimately crash as the dawn of the AIDS crisis edged closer. It was during this time that Hennes met his late partner of 13 years, Kevin Hassler, a classical musician and agent at Columbia Artists Management. The bond between the young intellectuals was unbreakable.

“He was diagnosed first,” Hennes shares. “We lived in the late ’70s and early ’80s in New York and [AIDS] started to happen and our friends started to get sick. Kevin told me one day he didn’t feel right and he was going to get tested. I said to him, ‘Why get tested? There’s nothing we can do about it. Why start dying before we have to?’”

Still, Hassler went forward and discovered his T cells hovered near 200. Hennes tested soon after and learned he too was HIV-positive, though his T cells were still in the 800s.

“I was relatively on solid ground and he was relatively on shaky ground,” Hennes recalls. Living with HIV was never a solitary experience for the couple. Not only did they have each other, but they had the broader queer community.

“I was part of a group of people who had a very uncertain future,” he remembers of those days. 

Pictured: Hennes (right) and his late partner Kevin Hassler. 

By the time Hassler died in 1993, he was considered a long-term survivor. (Although Hennes admits that Hassler always disliked that phrase, saying, “He felt like he hadn’t ‘survived’ yet.”)

During these years, HIV stigma was rampant and ignorance was perpetuated by a lack of accurate information on the virus. As a result, employers and business owners often fired workers when they learned they were HIV-positive.

Yet in that same environment, Hennes says he gained a powerful lesson about the human spirit from one of music’s most prominent figures.

When Hassler decided to quit his job in the early ’90s, Ronald Wilford, who was head of Columbia Artists Management and considered the most powerful man in classical music at the time, instead granted Hassler a disability policy and put him on medical leave so he could keep his salary.

“They were acknowledging Kevin’s value,” Hennes says. “That was forming in my whole view that there are people who behave with immense humanity.”

In the years before Hassler’s death, he and Hennes were active in organizing Music For Life at Carnegie Hall, a series of concerts for Gay Men’s Health Crisis. The event raised about a million dollars a year, and the musicians happily donated their services—a testament to the level of commitment in ending the epidemic.

“At the time I felt less bad about his dying because I figured I’d be following him soon enough, so my survival wasn’t such a bad thing, but I failed to get sick,” Hennes recounts. Eventually, his viral load reached undetectable levels — and his future really began to reveal itself in an entirely new way.

“The day I got word that I was undetectable, I was stunned,” the designer says. “That was probably the biggest shock of all. It was certainly a moment of joy because by then I decided I wanted to live and have as full a life as I could. I wanted to make as much of my life as I could. It was the first time in 15 years that I actually believed it was possible.”

Hennes has taken these lessons and examinations of the human spirit into a newfound activism. For the last five years he’s participated in the Braking AIDS Ride, a three-day 300-mile bike ride from Cooperstown, N.Y., to Manhattan that has raised over $2 million for Housing Works, an organization that houses and provides services to thousands of New Yorkers living with or at risk of HIV.

This year, Hennes raised $55,000 for the organization. Since reuniting with the activist community in a big way, he acknowledges the years of internalized stigma that have been pushed to the wayside.

“I feel [it’s] a privilege to talk about [HIV history],” he says of the transformative revelation behind Braking AIDS. “The dirty little secret is that, for a while, I shunned activism. After Kevin died, I couldn’t bring myself to do much of anything. I donated money. I was an armchair activist. I just couldn’t mobilize myself. I got in Braking AIDS for the cycling, not for the cause. I thought, I love Housing Works, great. And the first time I did it, it reawakened something in a way that was stunning for me and joyous.”

He continues, “The fact that my HIV-positive status, that part of my identity can be a positive and not a negative, it can be something that is an example for people that my vitality and aliveness can be useful to people who are doubting their own vitality and their own aliveness, it was just fantastic. It was weirdly something that didn’t even occur to me. It was just a part of my identity I put to the side. It’s not that I denied it, most of my clients knew about it. All my colleagues know about it. It’s not like I hid it, it’s just that I wasn’t making use of it. Now I feel like I can make use of it in a way that is very affirming and very positive—forgive the pun.”

Hennes (front) has done the three-day Braking AIDS Ride for the last five years. 

Nowadays, Hennes inspires people living with HIV to reawaken their own self-worth not only through his work, but also in the manner in which he leads his life.

“Lead with our own humanity,” he advises. “We are in a world that is accurately characterized by madness. Madness is about disassociation. It’s about shunting off. It’s about denial of truth, the denial of reality, the denial of others’ humanity. I don’t know if there is any recipe for success here…. Human beings are wired to select facts and create structures of meaning that are driven primarily by our sense of who we are, which is emotionally driven, and our emotional context for the world around us. We’re not going to get there by citing facts and figures. We need to have those to back things up and to give to the receptive but creating the receptivity for the positions we believe in has to come from the fundamentals of being a human being, valuing each other.”

“Start living today,” he continues. “Find someone to connect to in this community, to reengage with others. With respect to my HIV status, I’d been living in isolation, and reconnecting to others who are positive or whom that is a point of connection, not just an incidental piece of knowledge, has actually engaged in positive work.”

“Hatred and homophobia and transphobia, list the phobias, are the root cause of the epidemic. The virus hasn’t been at the root cause for 15 to 20 years. [These points] contribute to the marginalization of people who are not in the perceived mainstream. That marginalization becomes material and real, and lethal, among vulnerable groups of people—people who are HIV-positive, LGBTQ youth whose families threw them out or because they’re using drugs or abusing alcohol or because they have issues with mental illness.”

“You have to look at those things and say that’s not who I am,” he concludes. “It’s true neither [being gay or HIV-positive] define who I am, but they’re deeply part of who I am and in my own experience, the more of the fullness of who I am I can acknowledge and make use of, the more alive person I can become. And I think that’s true of everybody.”