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?”
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