Jordan: The Teacher Learns His Lesson

I own exactly two t-shirts that don’t say “HIV” on them.  Having worked at the AIDS Project of Central Iowa for 13 years, I gathered quite the collection.  In addition to the annual AIDS Walk/Run shirts and Be the Cure staff tees, I have a number of freebies from conferences and a few that I purchased from Nightsweats and T-Cells, a t-shirt company owned and operated by people living with HIV.  So wearing a shirt that said “HIV” on it today wouldn’t have been much of a shift for me if it wasn’t for two short lines that crossed in the center:

+

It was this positive sign that made today’s choice of attire a new experience for me.  It’s a symbol I have written, drawn, typed, spoken, and even shared with others as I delivered their HIV test results, forever changing their lives.  And despite the dozens of people throughout the years who have branded me through their stigma-sheathed perception of gays, especially gays who work in the field of HIV, I have never intentionally projected the idea that I am, or might be, HIV+.

I spent at least 10 hours out of the house in public view of others.  Mostly I forgot I was wearing the t-shirt and I had to keep reminding myself to pay attention to the reactions of others.  In fact, the entire day can be characterized by a lack of response from others.

The only response I can confidently report is my own.  My reaction actually has less to do with wearing the shirt and more to do with assigning my students to participate in the anti-stigma campaign.  I was ten times more anxious to introduce the assignment to the class than I was to participate in it myself.  I worried that it might be pushing students too far out of their comfort zones.  I wondered, if the class complained to college officials, would I find support?  How hard would I have to work for that support?  And could I even lose my job? 

Ultimately I decided to encourage, rather than require, members of the class to participate in the HIV anti-stigma campaign.  At the same time, I built in an alternative activity for students to choose.  I still ask myself if I would have been willing to allow for an alternative if the issue to be addressed was stigma associated with breast cancer or depression.  At the same time, I question how effective the assignment would have been for individuals who had been forced to participate?

After hearing stories from my students about their experiences and insights, I am very pleased with the impact of this assignment.  And among the students who selected a different topic, they reported equally meaningful experiences.  I like that they had the choice whether or not to participate and I’m proud, if not somewhat surprised (my internal stigma showing again), that almost all of them chose to do so.  If I had required students to participate, I would not have had my own assumptions challenged about whether people would be willing to step so far outside of their comfort zones in order to take a stand against HIV-related stigma.  So I am happy to report: lesson learned.

Destiny Challenges Norms

I decided to break the norm by wearing the HIV+ tee-shirt that was giving to our class after meeting with Rhea VanBrocklin. I was very nervous putting the shirt on. I did not know what people were going to think about me. I questioned myself if I was doing the right thing by wearing the shirt.  I decided to wear it on Friday. 

On my way to work, I stopped at the gas station. The clerk that was checking me out kept looking at the tee-shirt. When I went to pay for my things, I handed him the money. When he handed me back the change he did everything he could not to touch my hand. I was immediately offended as his eyes followed me out the door and even to my car. 

As I got to work, I walked in and my boss was somewhat uneasy about the idea. I assured him that it was going to be ok. We saw 12 patients in the 4 hours we worked on Friday. One of them, a male, about the age of 42 asked me if I was ok. I told him that I was fine and he asked about my shirt. I told him that I was wearing the shirt to try to prevent stigma when it comes to HIV. I asked him what he would do if someone disclosed that they were HIV+ to him. He said, “As a Christian I would like to think that I would not act any differently because the only thing I’m supposed to do in this life is love, but honestly I don’t know because I have never been put in a situation like that before.” 

I educated him on how hard it was to transmit HIV by talking to someone, or even touching someone like the ass at the gas station. Another patient came in and I could tell that my attire thrilled her. She was a patient that I have known for a while and did not realize that she had worked for the AIDS project of central Iowa. She thanked me and told me, “It really makes a difference to our HIV+ population when caring people like yourself step outside of their comfort zones to confront stigma and change attitudes. I have an even deeper respect for Dr. Meyer for being a part of it by letting you wear the shirt to work in his practice! So cool.” 

I did not realize what a difference I was making. How sad it is that these people are not treated like NORMAL people. I would really like to make a difference in someone lives. This assignment has opened my eyes. Thanks for the opportunity. 

Jacque's Question

December 1, 2012

What if I had HIV?

I did this assignment having curiosity about the reactions I would get. I wanted to see if people would say something. I wanted to know if they would ask questions or want to know more. Would I get nasty looks or would people make comments behind my back? I thought that I would get different reactions based on the people I saw and their ages. I was looking forward to doing this assignment.

When I was wearing my t- shirt I was trying to act normal. I wore it to school first.  I didn’t get any looks out of the norm.   I had a few people ask if I was wearing my t- shirt for sociology. I said yes that I was. I had a few not even notice until others said something. At school it was like I was just wearing a t-shirt. I felt comfortable and like I was anybody else. I was curious if any of my classmates would ask questions or say something. Most of them thought it was cool and no big deal. A few asked how was it going and were people saying anything.

            

I had family in town from California so I also wore it out to dinner with them. Most of them said nothing. Two of my cousins asked why I was wearing the t- shirt. One asked did I have HIV. I told her the truth and why I was wearing it. She thought maybe I was doing it to bring awareness to people. I told her I was doing it to see how people would react and would they ask questions. My cousin said that she thought it was a good idea and I should wear the t- shirt gain. My husband had a lot of concern about what people would say. He was nervous that I would get a bad reaction and be upset. We have an age gap and I think that the generation my husband grew up in has different ideas about HIV than mine. My husband however; didn’t notice until I asked him later in the night what he thought.

It was easy to wear my t-shirt and not say anything unless I was asked. I would wear the t-shirt again. I think if I present myself the way I did this time I would get positive reactions like I did. Some wanted to know and others didn’t seem to care.

I had a good experience no one said any bad comments. I just put the shirt in the morning and took it off that night. I was able to take it off and someone with HIV can’t. I don’t know what it would be like to be in their shoes. I think they have more courage than I do. I had fear about someone saying something. How would I react, what would I say? I knew I would tell the truth but that’s because I don’t have it. What if I did? Would I still tell someone the truth? That’s a question I can’t answer, because I don’t know.

Kim's Eye-Opening Experience

July 31, 2012

I began my day wearing my “I don’t know my HIV status” T-shirt with a full day of shopping ahead of me, including trips to the hardware store and the mall. I was a little nervous going into my day unsure of the reactions I would receive. After all, I was putting some of the most private information a person has on display, and it made me uneasy to think of how it would be perceived. However I was in for a much different experience than I had worked up in my head.

I went to the hardware store first, and surprisingly no one seemed to pay attention to what I was wearing. I approached a store employee to help locate a certain product; he looked at my shirt, but then politely directed me to the product with no mention of the shirt I was wearing. I perused the store for a while just browsing. I could see people reading my shirt but no one said a word. I couldn’t stop the thoughts swirling in my head ranging from “why is no one saying anything to me?” to “is it because they think I may have HIV?”, and “maybe they really aren’t paying any attention to what my shirt says.” I had hoped for some reaction, so confused and discouraged, I paid for my items and left the store.

Next stop: the mall. When I arrived I discovered it was a busy day with plenty of people roaming around. I went into a store and browsed for a while when a saleslady approached me and asked if she could help me. I turned to her and asked if they had a certain size and when I did, she read my shirt and semi froze for a moment (finally, a reaction!) I was hoping she would ask me about my shirt, but instead she told me that she would look in the back and left. She returned with the correct size, yet this time she was much less friendly and excused herself quickly. I continued shopping for a while and when I went to check out, I made sure she was the one to assist me. While she was ringing up my purchases, I explained why I was wearing the shirt, and told her a little bit about the campaign. She looked very relieved and told me that she didn’t know how to react because she couldn’t understand why someone would just wear a shirt like that. 

On the ride home, I caught myself thinking about what it might be like to live with HIV and how difficult it must be to tell people that information and have someone reject you because of it. I learned a lot from this experience. I learned that we, as people, don’t pay attention to each other. I also learned how real the fear must be of being rejected due to your HIV status. This was a wonderful eye opening experience for me and I am happy that I was able to be a part of this learning experience. 

Courtney's Second Time Around

July 27, 2012

I have to admit, I’m not a virgin to this experiment.  At last year’s United States Conference on AIDS, I purchased a red shirt that reads “HIV Positive” across the chest from The Illinois Alliance for Sound AIDS Policy (IL ASAP) as part of their anti-stigma campaign.  I’ve worn this shirt with no agenda in a variety of settings, although a few are more noteworthy. 

 I frequent a local plasma donation center about two times per week.  For 2 hours of my time, I get to help someone and receive enough money a month to pay for my car payment.  Certainly I would get some kind of look or comment at a place that needs HIV negative blood for their services.  The woman pricking my finger to test various levels in my blood?  The tech inserting the plasmapharesis needle into my vein?  Quick looks from fellow donators?  The only mention of the word HIV was on the screening questionnaire that I answer each time I donate asking me a multitude of questions regarding my sexual past and history of contact with HIV. 

My favorite reactions are from family and friends.  After anyone knows the nature of my job, it seems to become much easier to talk about HIV, something I dare to say isn’t the topic at most dinner tables.  I was fishing one evening with my boyfriend’s family when his uncle, a fire chief and EMT, saw my bright red HIV+ shirt and began a deep conversation about transmission.  He disclosed intimate details of his past, indicating events that would have put him at a high risk in addition to general questions on the accuracy of information that he received with his medical training.  If I hadn’t been wearing my HIV+ shirt, would this conversation ever have taken place?    

Would it be any different, I thought, if I was wearing a shirt that said HIV negative.   As far as breaching the land of uncomfortable with a sensitive situation, I would think that it would be easier to ask someone about their HIV negative status than their HIV + status. 

Unfortunately, a lot of the time the most excitement my day sees is getting groceries or some other menial task.  Time for something special and out of the ordinary!  …I went to the mall with my significant other.  I had my makeup done, tried on some clothes, had some nice ladies help me try on jewelry.  No mention of my shirt.  Even though the shirt didn’t spur the reaction I had hoped, and almost longed for, I believe that visibility is monumental in reducing stigma. 

Upon leaving the mall that day, I watched as the ladies at the makeup counter made silent gestures behind the back of a young girl dressed in blue with matching blue hair.  Their antics brought me back to the halls of high school where the mean girls tease and make fun of anyone who isn’t like them. 

How many people are courageous enough to ask a stranger about HIV?   I wondered then if as soon as I left, if anyone had anything to say about me.  

Ejay's Unexpected Expectations

July 30, 2012

I have been an HIV advocate for several years, so while I pondered participating in this anti-stigma campaign, I didn’t think I would struggle or be surprised by reactions. I was skeptical about receiving a true reaction from strangers, because wearing a T-shirt isn’t anything like living with HIV. Therefore, after I received my HIV+ T-shirt and was trying to figure out the location I would wear it. I began to notice some internal conflict – Can I ethically do this? Is this truly honoring my loved ones who are living with HIV or is this just another exercise for HIV- folks to sympathize for those living with HIV? 

I came to the conclusion that, yes, this is just an exercise afforded to those who are living HIV- and can take off the label of HIV+ any time. At the same time, this exercise is about education and outreach to those who don’t think about HIV being in their community or potentially affecting themselves or their loved ones. I felt torn between feeling humble enough to be afforded to participate in this campaign without significant risk to my personal and professional life, and knowing we Iowans need to confront this epidemic in our back yards while loving and respecting those living with this chronic health condition.

After this internal struggle, I decided to wear my shirt to the Montgomery County Fair in Red Oak, Iowa.  I have friends in this rural town, but I do not live there. I wondered if people would engage with me and ask why I was wearing this T-shirt, or if I would be denied services, be verbally assaulted.  I couldn’t help but imagine this may be what people living with HIV think or feel on a daily basis.  How exhausting.

After several hours at the fair the only observable difference was the wandering eyes of strangers. I made up two categories of stares: The first stare was “I’m going to look at you but don’t look at me.” This is the short glance, where once you make eye contact with the person they quickly look down at the ground or wherever else they could prevent their eyes from making contact with mine. Clearly, I was given the message to not approach these folks – ouch!

The second stare category was “I’m going look at you but I don’t care if you look at me (initially).” This is the blatant stare with eye contact. I found this to be most interesting because it was often a quizzical look rather than a stern or disgusted look. What were they trying to figure out? I was going to ask this of one individual, however, after I started to approach this person I quickly received the “I’m going to look at you but don’t look back at me” stare. This made me feel bad, so I terminated my education mission.

Afterwards, I noticed that in that moment I felt shame for attempting to discuss HIV. What a conundrum: Although I am so-called “afforded this opportunity” to do some great education, the perceived stigma held me back. 

I realize now, as someone who is HIV-,  that I can never imagine what it must be like to disclose an HIV+ status to family, friends or a life partner.  

Patresa: A New Mom's Perspective

What is it like to be you?

I wore my HIV+ t-shirt while out-and-about with my 8-month-old son, Fisher. I liked the idea of wearing an HIV+ shirt while out with my son--would my obvious role as a mother attract unique reactions? How does the world-at-large treat mothers who are HIV-positive? The shirt, Fisher, and I, went to the chiropractor, Panera, and the grocery store. For me, the real study was where I didn’t go, why, and what happened in my head.

1.  I don’t have time to be HIV+.

I’m a mother now. My son nurses every 3 hours. He eats solids in between (and by eat, I mean he smears food in his hair.). He requires a 1-2 hour nap around 10 a.m. and another one around 2:00 p.m. And, we travel with baggage. Nine times out of ten, I leave the house forgetting something.

The assignment was to wear the shirt for an entire day. Between nursing, smearing food in his hair, and taking a 1.5-hour nap, we didn’t get out of the house until 1:30; and by that time, I was running late for my chiropractor appointment. I intended to take a photo everywhere I went, but frazzled, I forgot my camera. “No matter, I’ll just take cell phone pictures,” I thought. But I forgot that, too. I also forgot Fisher’s diaper bag.

I intended to stop at a kid-stuff consignment shop, but the hours until Fisher’s next feeding were ticking down, and we needed groceries. Because I’d forgotten his diaper bag, I didn’t have my “boob tent,” which meant nursing him in public was out (I’m not that bold.). Also, I just plain didn’t feel well. I’ve been going to the chiropractor because my back and neck are out-of-whack, thanks to the new demands on my mom-body.

I felt bad that I would not be fulfilling an entire day in the shirt, but I didn’t have time to do more. Skipping the consignment shop and driving to the grocery store, I realized this reaction was meaningful. I wondered what it would be like to be an HIV-positive mother. What would it be like to juggle caring for a baby, making it to my appointments, and remembering my medications...all while managing the sickening side effects of those medications? I decided this would be extraordinarily difficult.

2.  I don’t look like HIV.

My first stop was the chiropractor. She didn’t seem to notice what I was wearing, so when she asked what my plans for the rest of the day were, I told her about the Anti-Stigma Campaign and pointed out my shirt. She said, “Oh, I noticed the shirt. I guess because I know you, I didn’t think anything of it. I didn’t think the shirt was saying, ‘Hey, I have HIV.’” A little later she added, “You know, I think that even if I didn’t know you, and I just saw you out, I wouldn’t think the shirt meant that you had HIV.”

I thought about this conversation afterward at Panera where a nice woman called me “Honey,” and held the door for Fisher and I. And I thought about this conversation again at Dahl’s Grocery where another woman stopped to help me with a malfunctioning child safety strap on the grocery cart. Would these women have been so friendly and kind if they thought I had HIV? Am I making assumptions about their assumptions?

I would guess that according to most people’s perceptions, I don’t look like HIV. I’m a 38-year-old, white, middle-class woman, who wears flowered headbands while grocery shopping with her blonde-haired, blue-eyed baby boy. When my chiropractor said that she would not have interpreted the shirt to be my HIV-status, I wasn’t surprised. I didn’t really expect anyone would. In that regard, what did surprise me was the realization that I felt a sense of immunity.

On my way home, I drove past a very dark-skinned woman wearing African dress. I wondered what would happen if she wore the HIV+ t-shirt. Would her experiences be different? How about an effeminate man? What if he wore the shirt? What does this say about our perceptions of HIV? What does this say about our perceptions of risk? And is this okay?

3.  I don’t want to talk about it.

When contemplating where I would wear the shirt, the only place I made a conscious decision to not wear it was the gym. But not for the reason you might think. It wasn’t that I was worried about reactions and felt shame; it was that I didn’t want to talk about it.

I have friends at the gym (I used to work there.); but other than a general “Howdy,” I don’t really like to talk much while I’m working out. I see it as my time to zone out and focus on a simple, physical, right-here-right-now existence. I didn’t wear the shirt, because I didn’t want to have to explain it. I just wanted to be a woman sweating on a treadmill. The end.

In examining this reasoning, I wondered what it would be like to constantly have to explain myself--to disclose my status to a partner, to a doctor, to my family, to a friend--and depending on their reactions, I may be expected to further explain how I contracted it, what it is, what it is not, how I was managing, what next, etc... I imagined after a while being kind of tired of the conversation. I imagined feeling like, “Hey, I am 1,000 things other than someone with HIV. Could we talk about one of those other 1,000 things?” I imagined wanting to just be a woman going on a date, a mother taking her son to the park, a daughter bringing salad to the potluck, a patient going to the dentist... instead of a woman with HIV, a mother with HIV, a daughter with HIV, a patient with HIV...

4. We don’t pay attention to one another.

At Panera, the man behind the counter was a real grump. He didn’t look at me enough to notice what I was wearing. To him, I was a disembodied voice interrupting what appeared to be the worst day of his entire life. This interaction (I guess you could call it that.) led me to another realization: Generally speaking, I don’t think we pay much attention to one another.

My initial question about this project was: Will anyone even notice? Sure, the shirt is big and bright red. But I feel like most people are too engrossed in their own existence to  really take note of others. And for the most part, I don’t think anyone noticed what I was wearing or registered it as significant. This brings me to what I got most out of my hours wearing the HIV+ shirt: Empathy.

My guess is that stigma pervades when empathy fails. My other guess is that empathy prevails when you pay attention to the humanity of others and find connections with your own. I think a really good question to ask others, all the time, is “What is it like to be you?”