THIS IS THE ENGLISH TRANSLATION: Find the original article in Dutch in Hello Gorgeous HERE.
Jack Mackenroth (46) is nationally known in the US for taking part in the popular reality show Project Runway in 2007. In it he was very open about his HIV status. Since then he speaks openly about reducing HIV stigma . Hello Gorgeous spoke with him recently.
HG: How would you describe yourself? Where are you from? Where do you live now? What do you do for a living? Are you single?
JM: I’m sort of a Jack-of-All-Trades–I don’t know if you have that expression in Amsterdam but it means I do a lot of different things. Long ago I was a professional model. I was an artist and a fashion designer for 17 years–and I still make art for my own enjoyment. I’m a competitive swimmer. I have also been HIV positive for 25 years, since I was 20 years old. I now work exclusively in HIV advocacy and activism, primarily in public relations, media and communications. On a more personal level I am wacky, sometimes sarcastic, seemingly extroverted but actually very much a loner and an introvert until you get to know me well. I am generally happy but I have my struggles just like everyone else. I am originally from Seattle, Washington and now I live in New York. However as of May 1st I will be taking on a new roll as the Senior Communications Officer for The Global Forum on MSM & HIV (MSMGF.org) and I will be primarily based out of Oakland, California for the first year.
And I am currently single.
Can you tell us a bit about how important your body is to you? When did you realize that you had such an impressive appearance? And does it take a lot of effort to maintain it?
Oh–I have trouble with this question. It’s difficult to answer without sounding like a narcissistic fool. Let’s see. I started bodybuilding about 20 years ago as a response to my HIV diagnosis. I wanted to feel strong and healthy and empowered. As I mentioned above I was a model at one period in my life and maintaining my appearance was part of my job. I used to be VERY obsessive about my workout regimen but I have softened in my mid-life years. I still swim several times a week and I go to the gym most days to lift weights and that is pretty much just for maintenance. I don’t want to change my body anymore or gain muscle mass. I am just trying to stay fit and healthy and burning calories allows me to slack on my diet. I have very little will power when it comes to eating junk food.
I realized I was attractive to other people after I came out in college. Before that I didn’t even really consider my physical appearance because I was so tortured in high school for being effeminate and all I wanted was to be invisible. Once I started going to gay bars, guys started to hit on me for the first time. I honestly couldn’t believe it because I was so insecure. I took me several years to feel even remotely physically attractive. Now I don’t worry about it too much. I’m comfortable in my skin–even as it gets increasingly wrinkly.
Obviously, like me, and quite a few of our readers you have HIV. I read for over 25 years already (me 24). Can you tell us a bit about that time? How it was for you to discover to have HIV in a time with bad prognoses considering surviving. What was your reaction at the time? And how did the availability of antiretroviral therapy change you and your outlook on life?
Well I was diagnosed in 1991 but I know exactly when I seroconverted in 1989. I assumed I would be dead in 3-5 years as there were not really any treatments other than AZT and everyone was dying all around me. I think I lived in this weird bubble of denial and fear of the unknown. I was essentially numb. This manifested itself as a sort of “fuck it” attitude. I didn’t plan much for the future. I would go through phases of taking great care of my body and health and then doing the exact opposite for months, going out to clubs and drinking and doing drugs excessively. What did I have to lose? This pattern continued for a while until my late 20s when my health had been very stable for a number of years and I was responding very well to the drugs that were available. I know I am EXTREMELY lucky. Only about 15-20 percent of people diagnosed before 1989 are alive today. After I got on medication I was never sick again with an HIV related illness.
As I understand correctly you became known in the US competing on a popular reality show about designing clothes, Project Runway in 2007. And right away you came out of the closet as a gay man with HIV. Was that scary? Did people encourage you to do so? Or was it just a very logical process? And what did it mean for you personally to become a public persona in that way?
I was 38 at the time of my appearance on Project Runway. I had been positive for 18 years and I was totally comfortable talking about it openly. I have no shame around my HIV status. Everyone in my life knew I was HIV positive, and the producers of the show asked if I would talk about it on camera. It was during season four at the height of popularity for Project Runway in the United States. It was a huge hit show here. I knew putting a face to HIV in such a big way would be important for a lot of people and could help combat the stigma and prejudice. After I disclosed it became a massive media moment virtually overnight.
The experience of coming out on such a grand scale was life changing. I was happy to put a new face to the disease. At the same time I felt a lot of pride about being open but it was accompanied by a lot of pressure to be a role model. I was inundated with emails and messages on social media and press requests. It was hard to keep up with and I did feel an obligation to respond to EVERYONE. Many people living with HIV feel isolated and desperate and filled with shame. If I can help with that in some small way then I’m happy to do it. Now it’s an honor.
Since then you are actively involved with several initiatives around HIV in the US. How did that come about? Were you always an activist? And when did you realize that you wanted to influence thoughts surrounding HIV, like stigma?
Soon after I got over the uncertainly of my own mortality I started volunteering and giving back to the HIV/AIDS community. I used to deliver meals to people who could not leave their homes on my work lunch hour. But after my TV exposure the activism and visibility exploded. Unfortunately there are very few public figures who speak openly about their positive HIV status so I became a bit of and HIV poster boy. Almost overnight I was on the cover of magazines and then became a spokesperson for a campaign called Living Positive By Design campaign, which was a national HIV education campaign. I did that for four years touring the country, speaking extensively. After that I created several successful anti-stigma social media campaigns. The first one was HIV Equal. The tagline was, “Everybody has an HIV status. We are all HIV Equal.” Meaning that regardless of our HIV status we are all equally valuable. Because of my big presence on social media, the campaign blew up in a matter of months.
This past World AIDS Day I launched the HIV Shower Selfie Challenge with the hashtag #weareALLclean which went viral and garnered over 26 million social media impressions in less than 2 weeks. It was translated into over 10 languages and apparently it was prime time news in Australia. It took on a life of it’s own rather quickly. I think social media will play an integral part in the future of HIV activism and education. I continue to combat stigma because I know that shame and blame prevents discussions, testing and treatment. There should not be a judgement associated with a disease. It’s not productive.
What advice would you give to people who would want to start a campaign themselves? What according to your experience is essential for a successful HIV campaign?
Make it fun and easy. We are living in an era of shameless self promotion on social media so cater to that. Tap into something that people already like to do or offer something that people desire. I recently raised $53,000 USD for Housing Works’ Braking AIDS Ride by offering to post selfies with donors names written on my body for anyone who donated over $250 dollars. I raised that amount in 8 weeks. Be inventive, be creative but keep it simple. Look at other campaigns that have been successful and think about how you can adopt their strategy–like the ALS Ice Bucket Challenge. People want to be altruistic but they also love some acknowledgement or payoff.
Is the stigma around HIV something you personally encountered? If yes, in what way? What would be your advice to our readers when encountering stigma?
Yes of course I am not immune to stigma. Although it rarely bothers me anymore. That is a result of total transparent honesty about my status. If I have no shame then other people’s judgments have no power. When I do encounter stigma or general ignorance I try to use it as an opportunity to educate. Often times it can ignite a great dialogue. I am proud to say that I have personally convinced many young people to go on PrEP. Other times people are adamant in their ignorance and nothing I can say will change that. I just wish them the best and hope they don’t learn the hard way that they are misinformed. Just recently I had a lively discussion with someone who still clung to the idea that the HIV virus was not the actual cause of AIDS. I just had to let that one go.
On Facebook I saw that you were driving somewhere to talk about HIV. Is that something you do a lot? What makes it worth for you to be a spokesperson on this subject? What did you personally learn from talking at events and in the media about HIV?
Yes–I still travel around the country speaking about my experience living with HIV. Most often I address college students. It’s a great reminder that, for the most part, the general public outside of the major cities and the gay community often knows very little about HIV. They are always shocked to find out that I have been living with HIV for 25 years. It’s a great way to educate through visibility. We still have a lot of work to do if we are going to end the AIDS epidemic and stop HIV transmissions. It’s alarming to me that the main stream media has not picked up on the development of PrEP–the HIV prevention pill. That should be global front page news. Essentially we could stop HIV transmission right now if everyone got tested and got on the appropriate treatment depending on their test results. It’s frustrating that that is not the case, but I continue to be hopeful and optimistic.