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?” 

Tonya at the Art Festival

July 4, 2012

I wore my HIV- shirt to the art festival knowing that I would be walking amongst hundreds of people.  I was interested in seeing the reaction to a middle aged Caucasian woman wearing their HIV status on a shirt.  The festival was extremely crowded with most attendees in their own world socializing with friends or bumping through the crowd.  As I walked into the booths, I could sense the artists reading my shirt but no comments.   Then I walked into the booth of an energetic and very social female artist.  She came up to me and introduced herself.  She commented that she couldn't but notice my shirt.  She said, "we have come along way; twenty years ago, a person wouldn't have been able to wear a shirt with HIV on it". 

"Good for you". 

As the festival crowds thinned, people were looking at me and reading my shirt without expression or concern.  Was the artist correct, society is accepting of HIV or was it only because my shirt indicated my status is negative?   I wanted to wear my shirt in another setting to see if people would ask more questions or respond to my shirt.

As a clinician at Planned Parenthood of Heartland in the metro, HIV testing is routine with all  our patients  seen for annuals and sexually transmitted infection screening.  There  is no testing based on lifestyle, risk factors, age, sexual orientation.  Testing is opt out.  So I  decided to wear my HIV negative shirt for entire clinic.   Not a single question from the staff as to why I was wearing the shirt  even though I didn't have my usual lab coat on.  Not a single question or response from patients.  The only comment I received was the fact that I was wearing scrub pants. We have come a long way, wearing HIV - was very accepted both in the clinical and public arenas.  

BUT what if it had said HIV +???

Missie at the Mall

June 29, 2012

I had to go to the mall tonight to use a coupon that was going to expire.  I decided that I would wear my “HIV+” shirt to the mall.  I know it is not a whole day, and I feel a little bit of infidelity to the campaign.  Those who are HIV+ do not get to take their “t-shirt” off and do not get to choose where and when to be +.

I was surprised at the reaction I received.  First I went to the store I had to coupon for.  I asked for help finding what I wanted and was greeted warmly.  We had a pleasant conversation.  I asked to try some clothes on and was promptly put in a dressing room.  I had chosen to try on two dresses and was unable to completely zip them.  As I came out of the dressing room unzipped, the same salesperson offered to zip the dress for me! Not at all the reaction I expected.  At another store, I was treated curtly, by just one salesperson. She quickly walked away as she said she didn’t have what I had asked for.

I am depressed that so far the strongest reaction I have seen has come from my own home.  I plan to wear it to work tomorrow, so stay tuned for more.

Missie's First Encounter

June 27, 2012

I registered to participate in the HIV T-shirt Campaign today.  I went to The Project to drop off my registration and to pick up my shirt.  I am apprehensive as I know there are three possibilities: “HIV+”, “HIV-“, and “I don’t know my status.”  I almost feel like I am going to find out results of a test.  

Jim takes my registration and tells me that Rhea will be out to see me in a minute.  I am nervous.  However, I am not at all surprised when Rhea hands me a shirt that says “HIV+”.  I walked out to the truck to inform my friend, Kurt, that I was positive.  I immediately being to think about where I can, and should, wear this shirt.  I really want to wear it on Wednesday, June 27, 2012, which is National HIV Testing Day, but I know that my husband is playing a baseball game later that night.

I got home and had to explain the shirt to my husband.  He immediately said “You are not going to wear that around any of our friends, right?”  He was worried about the “shock value” of the shirt, the fact that it might start an uncomfortable conversation, or worse yet, that people would believe it.  

I am immediately ashamed by his reaction, and I haven’t even gotten to wear the shirt yet.  Is this what I have to look forward to?  If so, I completely understand why positives choose not to disclose their status.  Here was someone I love, who loves me, who knows that I am negative, and still has a strong reaction related to what his friends will think about him.  I decided that I don’t want “friends” like that.  

I can’t wait to see what reaction wearing the shirt will bring, but at the same time, I am very afraid.