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A Long December, Part One

December 28, 2015

On Dec. 1, 2015, I was tired-happy. Things were really looking up -- after two years of work, I was finally able to release my web series, Unsure/Positive. Additionally, I had spent the previous four weeks planning an event at the teen center of my (fairly) new workplace, which I'll call Kids' Hangout, Inc. Both were in honor of World AIDS Day.

Add to that my upcoming, most-expenses-paid trip to Los Angeles as an honoree of the Hollywood Caucus Foundation, and I was feeling more self-actualized than I ever have.

Some recent background before I continue -- in 2014, I was the key speaker at nearly a dozen Boston public schools to pilot an HIV awareness program. It was immensely rewarding. A cooperation between Tufts Medical Center, and the Health Communications program at Emerson college. This pilot program was so effective, that many of the schools we visited last year requested we return this academic year. Everyone involved could see the tremendous impact it had on urban youth, the majority of whom knew nothing -- zero, zilch, nada about HIV, AIDS, or even the basics of STI's.

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So my plan was to bring this same programming to the Kids' Hangout, Inc. event I was planning for WAD, which promised to deliver on two things I was looking forward to:

  • firstly, the teens who spend time in the club would receive a first-class, up-to-date education about HIV, with a dual focus on prevention strategies, and reducing stigma about the retrovirus, and those who come to find themselves infected with it.
  • Secondly, I was going to share a personal truth with the teens at my club, in a controlled environment, and with the support of my colleagues.

In the three months I'd been there, I found the teens were the most difficult to engage with, and despite my best efforts, I still couldn't get many (if any) of them to make eye contact with me as I repeatedly walked through their area every day.

It was those kids with which this documentary might strike a chord; especially if followed by the revelation that one of the new staff members is living with HIV. The program had built-in time to discuss that fact, to examine it, and to ask questions -- many questions, any and all questions, including "dumb" ones -- in a completely safe environment. It was important to me for them to realize that people living with HIV are neither saints nor are they villains -- indeed they are just people, people of all stripes, including the goofy, bald, white, queer video guy.

I had this crazy gut instinct that was saying "come out to them," saying "tell them the truth, and when you do, the ones with empathy will re-evaluate how they relate to you." Crazy specific for a gut instinct, right?

Imagine my surprise when at 3pm, a senior supervisors called me into a small office, along with my direct supervisor, and the program director of the teen center. The senior supervisor explained to me that a VP -- let's call him Mr. Panic -- had some concerns with the event I planned, and, furthermore, that we were to cancel the event.

That's right. Joe Panic wasn't asking us to cancel -- he was telling us that we would cancel the World AIDS Day event. Three hours before it was to happen. I was floored.

Why would they do this?

I took a deep breath. Then, I did my best to explain to the senior supervisor that cancelling an event for World AIDS Day was not only a bad idea, but a disrespectful one. I pointed out that the teens in our club are, statistically, part of the group who is, hands down the most at risk* for acquiring new HIV infections in the Boston area -- a statistic I was only aware of because of my time spent with all those Tufts medical students who were part of the pilot program.

I argued that the program was proven effective and that considering that all of the teens in attendance had signed waivers from their parents -- signed waivers that basically covers the club's ass in the event that all the kids die. It's a form that's also handed out if there's a trip anywhere outside the club -- and my executive director had asked that we require teens to sign waivers for the event -- even though I made it clear that in none of the prior screening/discussions, had anyone ever been in any kind of physical or even psychological distress as a result of watching a short film, talking with some folks who happened to be living with HIV, and asking any questions they wanted while filling out a questionnaire that Tufts uses to measure effectiveness of the program.

It was a mouthful, for sure. I looked around the room. Everyone was flush; no one had words. Finally, I pulled out the last stop. Or at least, it felt like the last stop at the time. I asked if we could call Mr. Panic, and appeal his decision, which seemed to be based on a knee-jerk phobic reaction. Senior supervisor gave me a look that said, "If you need to hear it from him?" I nodded, and she made the call.

When Mr. Panic picked up, he was deceivingly calm. After the formalities, Mr. Panic launched into an administratively pitch-perfect excuse for why he was calling off the event. His logic was impenetrable, or so it seemed.

He explained that were we to go forward with the event, members and their parents might be confused about HIV somehow. And if that were to happen, it would then follow that possibly they might call a club staff member and ask a question about it. And see, the problem was, we haven't trained staff members at the The Kids' Hangout, Inc. about HIV awareness. So really it was all about fairness. It would be super unfair to those hypothetical members and parents, making those hypothetical phone calls, and catching untrained staff members in the middle of the work day, who would then, I assume, be liable to spontaneously combust.

Nobody said anything while Mr. Panic spoke. When he finished, I asked him to reconsider.

I pointed out that the fear-based reaction he had described was actually exactly what the program in question is designed to combat. I told him that I had experience as key speaker of the program, and that the event couldn't be in better hands because other teen center staff had volunteered to attend, along with my friend Sarah, who created this program and is continually adjusting it to better suit the needs of the teenagers who it's designed to serve. I told him that the teens in the center were at high risk, and cancelling the event would remove from their reach a valuable educational experience that might well help them to avoid infection. Mr. Panic agreed with me like a seasoned diplomat, and politely reiterated that the event was cancelled.

He then went on to ask me who I had disclosed my status to at work. My supervisor? My social worker?! My operations manager?!?! (I'm still investigating whether this was legal -- but it's likely a moot point, partly because I was already "out" to many of my co-workers, so Mr. Panic's questions fall into a gray area.)

I dutifully answered "yes" to most of the names -- but by that point, I was already withdrawing. I wasn't thinking about the ethics of the situation. It felt so personal. I didn't realize until later that the final moments of that call brought on an anxiety attack. I had been sitting with all of the people that I had been trying to impress for the last 3 or so months. And not one of them spoke up on my behalf.

So I cancelled the event. I told the program directors of the other teen centers nearby to cancel their vans. I called Sarah and two other poz area activists to make other plans. At around 6pm, a delivery guy brought a huge quantity of pizza to the teen center.

I was already at home, licking my wounds.

It wasn't immediately clear to me that I had been discriminated against. I called my father, who has been involved with cultural diversity initiatives at local private schools for years. I called my sister, for a shoulder to cry on. I told my husband when he got home what had happened, and it started to become clear -- Mr. Panic's actions were discriminatory.

He managed not only to single out HIV/AIDS as a taboo subject at the club, but he also managed to pull the rug out from underneath an employee who he clearly knew to be HIV-positive, three hours before a planned event, with no prior warning or consultation.

He was stigmatizing HIV, but he was laying it on real thick about my HIV; I realized that, after that conversation, I had been implicitly told not to disclose my status to any club members.

Now don't misunderstand me. I don't get my kicks from running up to random groups of teenagers and screaming my status at them. I may be living my truth, but I've also worked with youth for nearly ten years in various capacities and I grew up on the campus of a fucking private school. I know my etiquette.

Two days later, I was sitting in my executive director's office, trying to work things out. I began by asking for support, because I was being discriminated against.

It smacked of a meeting I had with the ED of my club about six weeks prior, when I had mentioned that the homophobic slurs used by teens right outside my office all day, every day were beginning to wear thin. That was six weeks ago. There had been no further updates on that subject since.

So as I asked my executive director and my senior supervisor to have my back, I wasn't 100% surprised when their eyes glazed over somewhat, as they began to recite the script that had no doubt been given to them by the Main Office downtown. I demanded that we reschedule the event. That we put a timeline on Mr. Panic's "staff training" idea. I spoke passionately and I tried not to let my nerves get the best of me. I was advocating for the kids. If we want the kids to treat others with dignity and respect no matter their background, we have to model that, teach it.

I was met with vague responses that settled into a general "no, now go do your job," sort of message. There's a valid point in the whole "do your job" part of it, so I did my job. For two days.

I took a personal day on Friday, because my work environment suddenly felt hostile. I was not free to be myself here, I was not trusted; I had no agency, no means of recourse. Soon enough I grew cognizant that my mind was swimming with disappointment, fear and even grief for how World AIDS Day might have been this year. I was in exactly the wrong state of mind to fly to Los Angeles and meet the movers and shakers of the entertainment industry.

I got back to work at The Kids' Hangout, Inc. on Thursday and Friday of this past week, and as I write this, I'm barely registering that it is, in fact, the weekend.

This coming week, I will keep pushing people to view my web series. I will keep pushing the executive staff at my workplace to face up to HIV awareness, and take responsibility for educating its membership. I will file a workplace discrimination claim at the Massachusetts Commission Against Discrimination -- a first for me! It will be interesting to see how all of this pans out; the only thing I'm sure of at this point is that yes, I will continue to live my truth.

I'm not going back into the HIV closet. I'm not quitting a job that combines my love for filmmaking and youth development. Of course, something has got to give.

I'll let you know how it goes.

* Source: CDC. Estimated HIV incidence among adults and adolescents in the United States, 2007-2010. HIV Surveillance Supplemental Report 2012;17(4). Subpopulations representing 2% or less are not reflected in this chart. Abbreviations: MSM, men who have sex with men; IDU, injection drug user.

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Christian Kiley

Christian Kiley

Christian Daniel Kiley is a filmmaker, HIV awareness educator, husband, uncle, brother and reluctant millennial who was diagnosed with HIV in 2007. At the time of his diagnosis, he refrained from disclosing his status to anyone -- friends, family, let alone the Internet. After five years of isolation, he decided to disclose to his family, friends and then the Internet. Since then, he has earned his MFA in Media Art from Emerson College in Boston, Mass. He is the creator of the Web series, Unsure/Positive, which released its first season via Vimeo on Demand in December 2015. An actor, writer, director, teacher and sci-fi nerd, he also speaks to Boston-area youth about HIV awareness with an emphasis on prevention and destigmatization. Although his dry wit is sometimes mistaken for indifference, his heart has taken up permanent residence on his sleeve. Your questions, opinions, letters and suggestions are welcome at unsurepositive@
gmail.com
. Follow Christian on Twitter, like his photos on Instagram and check him out on Facebook. Be sure to watch his Web series, Unsure/Positive and visit his series website, unsurepositive.com.


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