The Queer Body
Queerness is a unique identity because there is no necessary visible clues to tell the world who is queer and who is not. There are markers however, that can be indicators for queers to tell each other out of a crowd. When looking at someone I cannot easily discern if they identify as a lesbian, bisexual, gay man, transgender person or gender fluid person (among other identities). However some indicators lead me to perceive those who are not cisgender and/ or straight. Therefore my perception of them is queer, whether or not they identify that way. This enables me, or someone else, to connect with other queers and create communities. To someone who thinks they are the only queer around, visible markers can be comforting.
Like queerness, there is no specific visible guidelines of someone who has severe asthma. Because asthma is an internal disease that affects the lungs, a person with asthma may look able-bodied visibly, but actually have a severe disease. There are many other diseases and conditions that are also not physically visible but for this paper I will be focusing on asthma. Adrienne Rich, in “Notes on a political location” discussing theory from a real life vantage point. This keeps authors from abstracting and making claims without acknowledging intersecting oppressions and privileges. Rich writes, "Theory--the seeing of patterns, showing the forest as well as the trees--theory can be a dew that rises from the earth and collects in the raincloud and returns to earth, over and over. But if it doesn't smell of the earth, it isn't good for the earth". In order for this post to delve into queer theory and crip theory while being helpful to readers and myself, I’m going to theorizing from the basis of my experience as a white, 21 year old, cisgender queer woman, who is working class and living with chronic severe asthma.
Asthma- you’ve probably heard of it and know it affects the lungs. Many friends and acquaintances have said to me, “Oh yeah, I know what that is. I had asthma as a kid”. Another frequent response is “I have exercise induced asthma. If I run for a while I start to wheeze”. These experiences are legitimate, but are very different from the experience of living with chronic severe asthma. Sometimes when I hear these responses that are meant to reassure me that I’m not alone, I end up feeling more isolated. For me, every day revolves around how functioning my lungs are. When people attempt to identify with me that way, it feels as though they don’t understand how bad asthma can be.
I also feel a little bit…let down when someone tells me they have a mild form of asthma. Not that I want anyone to have a severe disease, but I do end up hoping someone will have it to the same degree that I do. Asthma is lonely. I don’t know anyone who has chronic and severe asthma like I do, and while friends are supportive, it isn’t the same as having someone who understands and has gone through it. Sometimes I think that I’m the only one. Like queerness, I can be in a room full of asthmatics and not know that we have anything in common at all. And like queerness, asthmatics are of all races, genders, sexualities, religions, ages, abilities etc. Although unlike queerness, I’ve never seen a community identity based around dealing with asthma, nor are there any markers to indicate someone has asthma (unless I see them use an inhaler. But since its awkward and kind of shameful, I use mine in private so no one can see and feel bad for me. I assume other asthmatics do the same). Hiding it from the world in order to avoid pity and ends up hiding it from others who might also share the same disability.
Before I go further into theory, I think it’s important to write a little bit about what it’s like to live with chronic and severe asthma. Most likely anyone who reads this does not have chronic and severe asthma, and is probably confused 1. By the sci-fi like photo posted at the top (a self-portrait of mine) and 2. Why it matters.
I never considered myself to have a disability until a few months ago. I thought, well I don’t look disabled, I’m not treated as if I’m disabled so I must not be disabled. But then what do I call it? My life as an asthmatic is like this:
· Use an inhaler twice a day, every day, forever.
· When it’s difficult to breathe and an inhaler won’t help, use a machine (nebulizer) that turns liquid medicine into vapor that goes easily into the lungs and helps the inflammation go down, so air can pass through. (What the opening photo shows me doing).
· A nebulizer treatment usually lasts about 20 minutes, and afterword the medicine makes me shaky and unstable. Every movement for about an hour after is shaky and twitchy, which I cannot control or stop. Sometimes it lasts for a lot longer than an hour. I also get fatigued and sometimes can’t get the energy to lift my arms or walk around.
· Changes in air temperature can cause the sudden inability to breathe (asthma attack). When its muggy outside, or very cold, the lungs tighten and decrease or stop air flow.
· Allergens such as pollen or dust can also cause an asthma attack.
· Physical exertion such as walking up a flight of stairs can cause an asthma attack.
· Wearing a bra with underwire or sometimes even any bra at all can cause an asthma attack for me (they cause my lungs to feel physically restricted).
· Breathing in the perfume or cologne someone is wearing can cause an asthma attack.
· Fragrances from hand sanitizer, candles, incense and lotions can cause an asthma attack.
· Cigarette and marijuana smoke also cause asthma attacks.
The effects it has had on my life include:
· Missing a lot of school during k-12 and all 4 years of undergrad.
· Often unable to participate in gym class or run the mile (k-12).
· Be ready to go out the door to a college class and the air temperature causes an asthma attack. Have to turn around. Nebulize for 20 mins, wait an hour or two and then go (undergrad experience).
· Be on the subway in the morning and the people wearing perfume cause me to have an asthma attack. Have to turn around, go home and miss class, work or an appointment.
· Take elevators, even when it is one flight of stairs (and face micro-aggressions of people who deem me lazy because I look able bodied).
· Have an asthma attack if someone walking in front of me starts to smoke a cigarette, so I have to either walk quickly so I can get in front of them, or cross the street altogether.
· Hold my breathe while I hug my mom and sisters, who smoke cigarettes. Inhaling the smoke that’s in their clothes can make my lungs tighten and force me to get out an inhaler or my nebulizer. (Me holding my breath or pulling away makes my mom sad, but there is nothing I can do about it).
· Leave when friends I’m with start smoking, or move away from them and have to keep moving when the wind changes direction.
· Miss school events, outings, club events, seminars or conferences.
· Be unable to exert the physical energy needed to take public transit home to visit my family in Connecticut.
This paper is not an effort to make anyone feel pity for asthmatics, or feel guilty for wearing cologne or perfume, or implore architects to build more elevators. This paper is to get you, the reader, to start thinking about compulsory able-bodiedness. Our society functions around the premise that everyone should be able to physically function in the same way and at full capacity all the time. That’s why subways have stairs and not ramps or escalators, why there are not public bathrooms available everywhere, why there are still six floor walk-ups for rent, why there is not brail on all signs. But even further than the physical, there is the pervasive cultural obligation to work for 8 hours at a time, either at a desk sitting or behind a counter standing. Either way, this isn’t healthy or realistic even for those who are not disabled. Society in the United States expects humans to push our bodies to the limit in order to make the most money. And money for who? Business owners? Brokers on Wall Street? Why are we expected to push our bodies to the limit and yet often make minimum wage or small salaries?
Crip theory uses queer modes of thinking to challenge what is normal. If compulsory heterosexuality is the norm (the idea that everyone is and must be straight unless proven otherwise) but yet unrealistic, so too is compulsory able-bodiedness (the idea that everyone must be able-bodied and work at full capacity). As a queer (sometimes I identify as a lesbian but I don’t anyone should be obligated to label their gender and sexuality, so the amorphous term queer is generally what I use) my identity is just one example of how compulsory heterosexuality fails. If it succeeded, everyone would be straight. As a person living with chronic severe asthma, my existence is just small example of how compulsory able-bodiedness fails. If it succeeded, everyone’s body would function in the same way and in the same full capacity. Crip theory, as explained by Robert McRuer, tries to show how disability is not just a problem for people whose bodies function in ways outside of the expected norm (those with physical or mental difficulties) but it’s a problem for our whole society.
Let’s begin with the issue of perfume and cologne. My body reacts badly when chemical fragrances come into my lungs. Living in New York City and taking the subway everyday can be particularly scary if my lungs are hurting and then people are wearing perfume or cologne around me. I have to get up and move if someone sits next to me wearing it. Although I know that it isn’t the responsibility of total strangers to think about how their perfume affects other people, I still get angry sometimes. When I think about it, I get angry because we live in a society where people think they need to wear chemicals to attract mates. This is where crip theory comes in.
Instead of only focusing on my experience as a person with a disability, I’m going to focus on the culture that makes living with this disability difficult. Not only that, but how this culture influences decisions everyone makes. Perfume is just one example. American culture teaches us that if we own certain things then we will attract a partner who will make our lives happier and more fulfilled. If we own nice smelling shampoo, soap and conditioner then people will want to be around us since we smell nice and look clean. If we put on chemically made fragrances like cologne or perfume, or those found in lotion, we are more likely to attract a romantic partner. We see these messages everyday with Axe commercials, Chanel commercials, Dove commercials, Olay commercials, Pantene commercials etc. The idea of cleanliness is so closely tied with products that are more focused on using fake fragrances to get a mate than actual soap to clean your body and hair.
The assumption that you need all of these products also means that if you believe it, then you believe your body is in a constant state of not being good enough. We’re told that we’re smelly, greasy, dirty or shabby if we don’t have these products. Most of the time, these are exaggerations used by marketers to make us feel like we are incomplete without these products. So we work work work at full capacity so we can spend spend spend on things we’re told we need in order to find love and be loved. These chemical fragrances enhance what you’re told is not good enough about you (the natural smell of your body) and also work to harm people whose lungs don’t function to the same high level as most people and whose lungs are not made to inhale chemicals. Its in this framework that not only are we looking at the specific issue I face, but looking at where it comes from and who it benefits. I say it comes from marketers and benefits the people who own the multi-million dollar companies. Because they get their multti-millions from consumers like you and me. The everyday person is not really benefitting that much from all of these products, chances are that you will be loved weather or not you were wearing Chanel perfume or Bulgari cologne at the time you met the person. Cripping society can show us all how the power of capitalism influences everyone to buy products that we think we need, but actually serve the puspose of making someone else rich, and giving someone else an asthma attack. I don’t think we should all throw away our beauty products and toiletries (In fact, I like “pampering” myself and buying them- as long as there’s no fake fragrance or only a little) but I do think we should be thinking about why we buy the things we do, and who these products affect, whether it’s the mogul making the money, the working class people who manufacture the products or the asthmatics who move away from you on the train so they can keep breathing.
We can also look at cigarettes and weed through this lens too. Advertisers show us that cigarettes are cool, and however media savvy we think we are, that message still gets through to us. (Sometimes I even imagine saying something witty or scathing and taking a drag of a cigarette to make my point seem all the more cool.) Living in New York, smoking is also a part of the nightlife. People use the excuse of bumming a cigarette or a light in order to start conversations when they feel awkward. Or if someone at a bar seems interesting or good looking, asking them outside for a cigarette is a way to get some along time. Being a 21 year old in New York City, I see this all the time and wish that there was something else that could be used in the same way. What if we could ask someone outside for some gum, or bum a piece of gum off of someone to start a conversation. But if it were like that, then there would be so much less money to be made! I’m not saying everyone should quit (although it would make my life easier and I would feel more “in” with the crowd in New York). I just think that we could use crip theory to think about why people smoke cigarettes, where they get the idea from, who makes money off of it, and who is harmed by it.
Now that I’ve discussed my experiences and some context, I want to write about how our culture thinks of people with disabilities. McRuer’s book “Crip Theory” and the chapter “Coming out crip” discusses issues of those with physical disabilities who organize and take action, and belong to communities with other’s with disabilities. But what about those who don’t have visible disabilities? What about someone like me, whose life revolves around accommodating a disease, but who “passes” as able-bodied and gets treated as an able-bodied person?
McRuer writes about how if someone is not disabled, but they claim to be then they aren’t acknowledging the privileges they get as a non-disabled person. This issue gets mucked up when someone is not visibly disabled, and so has able-bodied privileges. Some examples of able-bodied privileges include not being stared at or pitied as someone whose body can’t function as well as “normal” people. Another is the ability to use stairs to access buildings that have no ramps, or the ability to step up on the sidewalk when there is a curb, or being able to see the cross-walk sign light up and then cross the street safely. There are many privileges that people who are able-bodied, or perceived to be able-bodied, receive.
People who are not disabled, but still want to claim crip theory, would be denying their own privileges that they have regardless of whether or not they accept the privileges. McRuer writes that, “the compulsions of compulsory able-bodiedness and the benefits that accrue to nondisabled people within that system are bigger than any individual’s seemingly voluntary refusal of them” (page 36 in the book Crip Theory). So if someone is able-bodied, they get privilege, regardless of whether or not they want it. But what about people who are actually disabled but still receive some able-bodied privileges? Are we allowed to come out crip?
For me to say I want to come out as disabled, and crip my asthma, would mean that I’m not ashamed of my lungs (however much of an inconvenience it can be). It would mean that I accept that I’m different but also appreciate that this body is unique and it is human. And it would mean knowing that at some point we’re all going to face a moment where our bodies can’t and won’t perform 100%. Because my body has never performed at 100%, I have never expected it to. So at some point, when those whose bodies that work “normally” age and don’t function as well, I won’t be one of the people who are surprised at the change. Crip theory helps us see how unrealistic it is to expect everyone’s bodies to work at their highest function. I wonder if anyone is truly able-bodied with no impediments (physical or mental). I doubt that the majority of people in the United States are truly able-bodied, even if they hold the illusion that they are, like I did for so long.
Instead of viewing those with disabilities as people to be pitied, crip theory allows us to try to understand that society expects everyone to function at their highest capacity in order for money to be made. But if it weren’t all about work and money and profits, then would there even be the expectation that everyone’s bodies work in the same way? Perhaps not. Maybe there wouldn’t even be two categories of “disabled” and “able-bodied”. Where queer theory lets us imagine spaces where there aren’t categories of “straight” and “gay” or “man” and “woman”, crip theory helps us imagine breaking down the categories that judge us based on how our bodies function.
“Orientations involve different ways of registering the proximity of objects and others”
-Queer Phenomenology, 2006
“To move one’s sexual orientation from straight to lesbian, for example, requires reinhabiting one’s body, given that one’s body no longer extends the space or even the skin of the social.”
-Queer Phenomenology, 2006
My father is an identical twin. His brother lives less than five minutes from where I grew up. When my parents found out they were going to have twins my mother was devastated. She wondered how she would ever take care of two babies. My father was naturally thrilled. A twin himself, I’m sure he was excited that his own children would get to experience twinship. My father and his brother are very close. When my sister and I were young they would take off with us, we’d go get ice cream, watch planes land at the airport, anything. My father couldn’t take us to get shots, so our uncle would go with our mother. I grew up seeing the relationship that my father and uncle had and that definitely paved the way for my sister and me. My father’s own experience shaped the way he raised my sister and I. From Kindergarten to sixth grade my sister and I were in the same class. This is not the norm and my parents had to fight to keep us together. It was never strange that we were always together. We shared the same friends, the same car, worked at the same place. We did everything together because that was how we were raised and there were not many opportunities to be individuals. We were stronger as two; we always had to protect the other. It wasn’t until coming to college that I realized that this was strange. I guess my “orientation” changed in the way that there was no one around to encourage me or make sure that I had the space to be together all the time, instead there were many critical opinions of the way we behaved. People had been critical in high school too, but at that point we were still in the safe environment that our parents had created for us. In the same way that the poor queer the idea that America is a wealthy country, I think twins queer the idea of individuality. In America we have this capitalistic, individualistic idea of what makes a person normal or successful. I didn’t realize this until I came to college and started reading theories and having discussions. I know that everyone brings their own experiences to every reading, or discussion, classroom, and mine was that I felt, and still feel, that the theories don’t apply to my life. They’re directed at someone who was raised as an individual. I was not raised as an individual. I have never hung out with my parents just me. I am terrified at the prospect that one day that could happen. In my hometown I am known in relation to my sister, we are two halves of a whole being.
Queerness can be defined as a lot of things for me. The definition I’ve been using most recently is anything that it non-normative. This encompasses LGBT people but is not limited to them. In phenomenology there is an emphasis on queer space. I feel like because my father is a twin he created a “queer” space for my sister and me to exist in. But also as phenomenology dictates, the space is always shifting and moving. After a certain age it is no longer appropriate to be so “co-dependent” on each other. One book even described twins as being “emotionally crippled” and stated that they don’t feel the need to develop a full range of personality traits because if they have half and their twin has the other half then they can function fine in society. Society romanticizes twins and loves when they’re dressed alike, when they say things together, when they look the same and act the same, when they love each other. One twin book even talks about the disappointment that some parents of twins feel when they have their babies and they don’t interact with each other once out of the womb. I will say that my sister and I did not disappoint. It’s all cute when the twins are children. But after a certain age, maybe as young as 5 or 6 when kids start to go to school, they are expected to separate and become individuals. So would it be queer to consciously choose to live your life dependent on another person? Plenty of famous sets of twins have done. Tegan and Sara, Mary-Kate and Ashley Olsen, Randy and Jason Sklar, Lisa and Jessica Origliasso of The Veronicas, Daisy and Violet Hilton, and literally hundreds of other pairs. These sets of twins have created the space in the phenomenological sense that has enough room for both of them as adults who function and live happy, healthy normal lives. Are all of these people queer? Certainly their choices of profession can be seen as queer. Musicians and actresses and comedians and entertainers. None of these people took a “traditional” career path. But regardless, they are all dependent in some respect on their twin. They may not live together, or even live near each other, but they are still in close contact and collaboration with them. These people are by no means independent, as no one truly is. How do they get away with it, do they escape criticism because they are “individuals”? If they are individuals does that mean that they adhere enough to societal norms to be socially appropriate? The fear with twins is that they won’t fully develop. From personal experience I would say that not everyone develops at the same time or the same rate. I think starting to develop my personality at 19 may have given me a late start, but I don’t think that all hope is lost for me. I think that there is a balance between having your own personality and your own life and still maintaining the intimacy of a twinship. In an interview with Randy and Jason Sklar they say that they live in a gray area. Everything is not as black and white as “I want to spend every waking minute with you” and “I hate your guts”. I do not want to spend my every waking moment with my sister, but I also want to celebrate my twinship. And in my life I work hard to be able to crate the space where that is possible for me.
A complicated aspect of phenomenology, twins and individuality is the idea that everyone is walking down a path that has already been created for them, which in and of itself gives us more a collective identity rather than an individual identity. In terms of queerness in the LGBT sense, I broke the path that my parents had trudged down and their parents before them and so on. After years of “straightening up” I decided to break from the path my parents were walking on and come out as a lesbian. Very soon after this my sister followed me down this detour. Is it because our collective queerness together broke heteronormativities back? Probably not. It was one of those things where she was like, “well if she’s a lesbian, then I must be a lesbian too”. And apparently that worked for her. This makes me think about how we are all “trained” to participate in heterosexuality and that you “do” homosexuality. I believe in nature via nurture in terms of genetics and also how one ends up coming out as LGBT. For me, I think that no matter how much I was socialized to like boys and want a family someday my intimate relationship with my sister socialized me to be close to women and girls. I connect with women far easier than I connect with men. I was always raised in a way that didn’t discourage female closeness. I always shared a bed with my friends and my sister. There were not many boundaries in my home, the space was always open. There have been studies done on twins to determine if homosexuality is genetic or not. While there is no conclusive evidence in terms of the genetics there are some interesting results. With identical twin boys if one twin is gay there is a 52% chance that the other one will be gay. With identical twin girls if one of the twins is gay then there is a 48% chance that the other one will be gay. Is it nature? Nurture? Or somewhere in between?
“Others who have come out crip have done so in response to systematic able-bodied subordination and oppression. Stigmatized in and by a culture that will not or cannot accommodate their presence”
-Crip Theory, 2006
“Able-bodied privileges do not magically disappear simply because they are individually refused”
-Crip Theory, 2006
It is perhaps bold of me to come out crip because I am a twin. After all I am not physically disabled, I don’t have any cognitive impairment, and I am not so neuro-diverse that I need to reformat the way I interact with the world. But I do think that in a world that was made for individuals, being a twin can definitely feel disabling or at least limiting at times. I think that cripping individuality is when two people, or maybe more, purposely choose to live as one. The world we live in is built for individuals, it is not built for collectives. I think that by cripping individuality happens when you are capable of living your life as an individual but you choose instead to live your life dependent or as one with another person. Genesis P-Orridge and Lady Jaye Breyer P-Orridge, collectively known as Breyer P-Orridge is a good example of this. Lady Jaye and Genesis took the name Breyer P-Orridge as part of their Pandrogyne project in which the goal was to become one person. Breyer P-Orridge wanted to merge their identities together to create one identity that would be the “re-union” and “re-solution” of male and female to become the perfect hermaphroditic being. Lady Jaye and Genesis were giving up their individuality in favor of living a collective life that they completely shared. The body modification and the idea of living as two people in one life are queering and also cripping society. By trying to achieve sameness and the blending of both male and female they go against everything out individualistic, capitalist society teaches. They are queering society by choosing to give up the privilege of being viewed as normative. And they are cripping society for similar reasons. They were two able-bodied people who decided they were soul mates and wanted to re-unite. They gave up their able-bodied privilege of being cis-gender and easily read in the world. The first time I learned about them I thought what they were trying to achieve was shockingly similar to what twins were born experiencing. I can’t speak for all sets of twins, but I do know that I have grown up feeling like I was born with my soul mate. And I feel like the world is constantly trying to separate my sister and me to make sure we grow up into strong, solitary, “healthy”, and “normal” beings, whatever that means. Lady Jaye died in 2007, but Genesis still uses the pronoun we when talking. I do this all the time. I will be talking to someone and they will be like “oh what did you do this weekend?” and I will say something like “we…” If I’m lucky this person knows I’m a twin or they assume I was with people. If I am not so lucky they probably think I am losing my mind. I have never been an individual. It has taken me a long time to be conscious of my pronouns and aware that when I am alone I need remember to use “I” and “me” instead of “us” and “we”. It even makes me uncomfortable to claim any singular ownership over my parents. They are not just my parents; we even share our relationship with them.
Another aspect of crip theory that could be applied to twinness is the idea of non-verbal communication. Twin research shows that twins generally have lower IQ’s because they have lower verbal skills. Often times twins don’t need to learn how to communicate with others until they are older. This leads to a lot of non-verbal communication and perhaps in some cases underdeveloped speech. In my own case my sister and I often engage in non-verbal communication. This can entail anything from a look to a nudge to a combination of both. We took a volleyball class together our freshman year of college and our instructor hated putting us on opposite teams because he felt like we were “talking shit” to each other through the net. We never said a word but apparently he was much attuned to our looks because he was more or less correct. Another aspect of this is that I have what I am going to call an undiagnosed speech impediment. I not only have a killer Upstate New York accent but it somehow mated with a Boston accent and produced the way I talk. Now mixed with whatever I have picked up from living in the city for three year who knows what I sound like. Anyways, I drop my “r’s” from time to time. My father does this as well. Which doesn’t make it a proven twin thing, but to me it proves something. Anyway, the point of me talking about this is that having trouble communicating verbally can create some problems. I know that when I was a child, aside from a few people, I was never picked on for the way I spoke. But upon coming to college it was pointed out to me on several occasions that my accent was very abnormal. This kept me from talking in many class my first few years of college. I was very self-conscious about the way I said certain words or that I would not be able to clearly articulate what I wanted to say. Anyone can develop a speech problem, but in the case of myself as I twin I think that it was my sister and the way I communicated with her that impacted my speech now.
“The function of the mirror stage thus turns out, in my view, to be a particular case of the function of imagos, which is to establish a relationship between an organism and its reality”
-The Mirror Stage as Formative of the IFunction, 1949
I have read Lacan’s theory of the mirror stage before and each time I do I have the same question. What about twins? I suppose more specifically identical twins. In terms of Lacan’s theory twins are instantly queered. The whole idea of the theory is that from looking in a mirror, the child will be able to differentiate itself from its mother, and will therefore learn the idea of the self and the other. I think twins queer this because even if the child separates from their mother, they are still intimately connected with their twin. They learn to define the self in conjunction with another human. This essentially queers the word self which implies individuality. This is interesting to me because in my own life I feel very independent from my parents. I don’t think it was ever a problem for me to separate from my mother, granted I don’t remember, but I do think that rather than needing to separate from my parents, I need to learn how to differentiate myself from my sister. Sometimes if she wears an article of my clothing and I look at her I get confused and the first thing I think is “why am I standing over there?” And it takes me a minute to realize that I am not over there, it is in fact my sister. We always get into fights over who said what in a certain situation because we can’t remember. One thing that is morbid and also terrifying about not being able to comprehend this separation is that when a twin dies, the other twin is literally seeing themselves dead. It can really force the living twin to confront their mortality. I am not sure if I will ever be able to define myself as a complete individual, but I do think that it is possible to find a balance somewhere in the gray area that is satisfying to me and my identity as a twin.
“Men don’t normally get urinary tract infections,” the urologist informed me as I sat on the metal examining table, a hospital “gown” (how could you really call these things “gowns”?) draped over me and my feet dangling. I was feeling very exposed. I had been running a fever for several days, and it hurt to pee. But, it was the last week of finals, and I had to get through them; I couldn’t afford to miss a final. So, I had been chugging cranberry juice and eating Tylenol. I was, after all, a nursing student – painful urination plus fever equals urinary tract infection and cranberry juice acidifies the bladder, making it inhospitable to bacteria. I don’t remember where I had picked up this bit of homeopathy; I wasn’t a particularly attentive nursing student. I did, however, have lots of girl friends in nursing school who got lots of urinary tract infections – “honeymoon cystitis” they called it – from sex. They were a more likely source of my information.
But, as the urologist informed me, men don’t normally get urinary tract infections. Our urethras are just too long for the bugs to crawl up ‘em! So, the etiology of this infection needed to be found. I had dropped a urine sample off the day before, and, now that I was done with that last final, I was back at Student Health. The nurse practitioner had informed me that I did, indeed, have a UTI and would need to see the urologist “since men don’t normally get urinary tract infections.”
The urologist came as something of a surprise – not that I was seeing one, but that it was a woman. I was used to working with women – I was, after all, a nursing student, one of less than ten men in a class of over 200 – but I wasn’t used to getting naked in front of them. I was, after all, gay. She was young, probably just out of her residency in urology, with a head full of big, black, frizzy hair. At the moment her back was to me, and I was staring at the back of all that frizzy hair as she fiddled with some sort of equipment.
“So, as I said, men don’t normally get urinary tract infections.” I know! I know, already! “You don’t . . . um . . . stick anything up . . . there, do you?” Hey – I’m gay, but I’m not quite that kinky! This last question came as she turned to face me, holding the equipment that she had been fiddling with – a metal wire with a loop on the end of it – which she proceeded to, very unceremoniously, stick up “there”! She grabbed me under my “gown,” straightened me out, and shoved the damned thing up there, brusquely explaining that “we need a sample from further up your urethra”!
I gasped in answer to her previous question, “Can’t you see how much I enjoy this?!” and passed out. I came to, slumped on the urologist, while she, now very agitated, tried to move my dead weight off of her and into a fully prone position on the table.
“We are going to have to admit you to the infirmary. You seem to be very dehydrated.” THAT is NOT the reason that I passed out! “You need to get IV fluids, and we need to figure out how you got this.”
With that, she was gone, and I was whisked upstairs on a stretcher to the infirmary, where I spent the next two nights.
Those nights – and days – were filled with anxious speculation. It was 1983. AIDS had just been christened with that ominous title – Acquired Immune Deficiency Syndrome – having previously been known as GRID – Gay Related Immune Deficiency – and before that simply the “gay cancer.” There was no test – the cause had not been identified and wouldn’t be identified until the following year. A diagnosis was made based on the occurrence of “opportunistic infections” – unusual infections that occurred because the patient’s immune system was compromised. Infections with their own ominous-sounding names: Kaposi’s sarcoma, Pneumocystis carinii pneumonia, cytomegalovirus. No wonder they, like AIDS itself, were all better known by their abbreviations: KS, PCP, and CMV. Was a UTI in a man an opportunistic infection?
After an anxious night of IV rehydration, I was seen the next morning by a battalion of infectious disease doctors circling my bed. “We don’t think that a UTI is a basis for a diagnosis of AIDS. And, you seem to be improving quickly, which would not happen if you had AIDS.” Whew! “There is a test we can do to see if your immune system is compromised. Are you interested?”
I supposed so. What else could I do? I was already familiar with the disease. The previous year I had done a paper that mentioned the disease in passing, before it had a name. I had come across an article about the “gay illness” striking gay men in New York City while researching a paper for a class called Health of Populations. I had chosen gay men as my population to study. After all, I had my own experiences as a gay man to draw upon. I, myself, had been called by the county health department after being reported as a “contact” from someone with syphilis. I had dutifully reported to the Student Health Center, to the knowledgeable and sympathetic physician I was told to call – a physician who worked with gay men. While it turned out that I did not have syphilis, I did now have a knowledgeable and sympathetic physician who knew that I was gay and would attend to the unique health needs of a gay man – a sore throat would require swabbing for gonorrhea, not simply looking for strep or some other run-of-the-mill cause. It only seemed fitting that I should honor this relationship by looking at the specific health needs of gay men for my HOPs research paper. And, there they were in the literature, the panoply of gay-related needs, all of them venereal in nature. I was even pleasantly surprised to find out how much research had been done on my own health needs – journal articles and studies, all about gay men and our needs. I noted, perhaps with a tinge of superiority, that there was little research done on the health needs of lesbians. Most articles assumed that they had no special needs. While looking through the latest updates and abstracts for health journals, I had found a reference to a recent New York Times article, “Rare Cancer Seen in 41 Homosexuals,” from 1981. I noted it in my paper, in a short paragraph without much concern, concluded the paper, and handed it in.
And I had already seen the results of opportunistic infections in men – some of them friends – who had had no idea that they were immune compromised. Hoagie Gaskins, the first man I had slept with at Carolina in my freshman year of 1979, was already dead. I had used my nursing student’s uniform to get through the gauntlet of blood, body fluid, and respiratory precautions into his room and see him when I found out that he was in the hospital. I found him in a coma that he would never come out of. So, I supposed it was the best course of action – find out if my immune system is compromised. “Go ahead and do it,” I told the infectious disease docs.
More blood was drawn and sent to the lab to see what my T cell count was. T cells are white blood cells that play a central role in immunity. The infectious disease guys informed me that they would be below normal in an immune-compromised patient with AIDS. Another anxious night was spent in the infirmary, awaiting the results of the T cell count.
The next day, the lady urologist informed me, “Your T cells are normal.” I was no longer of any particular interest to the infectious disease team. I was put back into the hands of urology to determine the cause of my UTI – none was ever found, but AIDS was not the cause. A bullet dodged. For now.
One major lesson I have learned over the four years of my college career, is that any past meaning of a concept or idea will be flipped and turned on its head. In other words it will have a completely different meaning than I once thought and/or expected it ever could be. Whenever I took Professor Stephanie Hsu, I learned quickly that this would be my experience in every class of hers. After taking two classes with her, I felt by my final semester I had finally conquered the Hsu concepts but a double dose of Hsu quickly changed my expectations once again. Prior to taking Queer Theory, I had always thought that queer was an umbrella term to describe the LGBT community or was a term an individual used if they did not want to put a certain sexual orientation label on one self. I also was aware that queer was once a very derogatory term for the LGBT community and still can be depending on the context. In more recent years the term has been taken back by the community as an identity marker. In Queer Theory, however, our class learned that to be queer or to queer, is to go against the normal or be the opposite of what normal is expected to be. To the LGBT community who has used this term for other purposes, such a definition can throw you off but thinking further it made complete sense. In a heteronormative society where we are all expected to be heterosexual upon birth and throughout our lives, to be anything but is queer. Therefore anyone who identifies under any of the many LGBT categories is seen as queer.
While this is a blog post assigned for Queer Theory class, I felt that my other class I had taken with Hsu this semester was oddly or should I say queerly similar. Hsu’s literature of diversity class which focused on Disability Studies also turned the idea of what it means to be disabled around to a whole new meaning. Typically when disabilities or disabled individuals are being studied it is within a medical context, with the disability being the focus and very rarely the individual. Instead of focusing on the medical, our class focused on what it means to be disabled, disability in a variety of cultural mediums, and disabled pride. Queer theory was also similar in this aspect in that we learned what it truly means to be queer and looked at examples of such in a variety of cultural mediums. A part of separating disability from the medical model is to not view an individual’s disability as something that needs to be cured or fixed. The disability is not the problem, instead it is the impairments that may result due to society’s lack of access to those with a disabled body. Those with a disability are automatically queer because their body differs from what is the expected normal body or mind, aka the normate.
While the two classes were very similar in non-normative status, there were also some polar opposites. These polar opposites did not occur in the lesson plan but in the responses of the students. In Queer Theory when class introductions were made, a majority of the students’ reasoning for taking the class was because they identified as one of the letters under LGBTQ. For many this was a coming out under a certain sexual orientation to fellow classmates often without known repercussions. In Disability studies, however, the students’ reasoning for taking the class was more varied. For some students it was because they had family members or family friends with a disability, while for others it was for a literature or AOK1 credit. A number of students in the latter category were unaware that the class had a focus in disability studies. Only one individual in the class came out as crip, in other words, announced to the class that he had a disability. It was almost completely opposite of how the Queer Theory introductions went. Pretty much everyone in queer theory revealed the sexuality and out of those who did, no one admitted to being a straight ally. It was not until later in the semester that an individual felt comfortable enough to come out as a straight alley. From the conversations of the majority in the class, Queer Theory did not feel like it was a class for allies or straight students. It was not that allies were not accepted, but the climate made it feel like that their opinions on such matters were not as important. Or to put it in terms more bluntly, the climate from others made it feel like straight allies had no place to speak about such matters. The LGBT voice was seen as the only voice that should be allowed to speak on queer topics. This also serves as an example of the majority versus minority dynamic. For a minority individual such as a member of the LGBT community, they are used to being seen as the minority in a predominately heterosexual society. When the dynamics are reversed, however, the member of the majority suddenly feels uncomfortable when they themselves are in the minority position. Such a case may have occurred with a straight student in a class where the majority of students are of the LGBT community.
In Disability Studies, the climate had an exact opposite feeling. Aside from one student who had come out as crip and had a visible disability, it was unclear who else may have had crip status. Again as the semester progressed, more students began to feel more comfortable talking about their crip status. Of the students who did open up, the crip status most identified with was some form of mental or behavioral condition. The majority of students in class, however, were allies for those with disabilities or were in the process of becoming allies. It was the exact opposite scenario of Queer Theory, however this was not a surprise to me. Stepping outside these two classrooms, you notice the same situation occurring at conferences and events for these two minority groups. At conferences and events designed to focus on the issues and rights of the LGBT community, usually most of the attendees are self-identified members of the community. The same scenario typically holds true for other minority group events whether it is racial, ethnic, or religious, except for the disabled community. Typically events and conferences surrounding the issues of the disabled community are run and attended by doctors, professors, family members, and other so called experts on the disability in question. Rarely are the voices of individuals with disabilities heard at these conferences and cures are the focus, not rights and acceptance. I am sure there will be the critics, who say that disability is hardly comparable to any of the other minority identity groups, but for those critics out there I think it is time to bring in the “Like Crip” argument. Like the “like race” argument, I will be using the “Like Crip” argument to compare the rights movement of the LGBT individuals to that of the disabled community. I know there is a lot of controversy surrounding the use of such an argument; however I feel that sometimes such a comparison needs to be brought to the table to the further the movement of another group. The tactics one group has used can be a model for another group to use them as well in order to gain rights and acceptance. Also when society at large sees how two minority groups are comparable, they are more willing to accept their movement and listen to what they have to say.
To start off this argument/comparison I am about to make, I want to ask the reader to imagine the above scenario I have observed with the disabled community and imagine this is the queer community’s experience instead. Imagine a class on queer studies, where the students took the class unintentionally or just for credit. Or the students in the class were either afraid to come out queer because of public perception and different treatment. Or even if they weren’t queer, spoke as if no queer member was in the class or distanced themselves from even the possibility of being involved in such a community. Imagine a queer class where a majority of the students were straight or allies, and only one individual came out as queer. The feeling is unsettling but not too long ago, this scenario was quite true for the queer community, and for many communities across the country, this is still the case. Just like disability, queer was a category (and still can be) that individuals did not want to associate themselves or identify with. Not that far into the past the LGBT community was viewed through the medical lens versus the cultural and social lens it is typically viewed through today. In fact, someone who identified as LGBT back in the day would have been labeled as disabled. Once a category in the Diagnostic Statics Manual, homosexuality and bisexuality was seen as a mental illness. Even still today, trans-gender identity is still in the DSM, so it could be considered a disability as well. The same conferences and events I mentioned previously regarding the disability community were instead focused on homosexuality as a medical condition. Doctors, professors, family members, and other so-called experts on homosexuality came together to discuss cures and recovery from “perverse” sexual behavior and thoughts. These two identities are not discrete illnesses but rather are, “fluid and ever-changing claimed by those whom it did not originally define.”[i]
One could even say that the LGBT community has its own impairments and that the members deserve legal access to equal benefits in society. I don’t mean impairment in the sense that there is anything wrong about their orientation or identity, I mean impairment in the sense that because society has deemed the LGBT individuals different from the normate, they have limited their access to certain rights. Because society still holds the outdated view that heterosexuality is the normate sexual orientation, individuals who have same sex partners are limited in access to marriage, healthcare, and even public safety. Trans-gender individuals whose identity is still considered a disability are limited access to gendered spaces and situations because their genitalia do not match the normate view of their mental sex. And for this group of individuals it is only through disability status and admitting they have a mental impairment that they are allowed access to hormone therapy or reconstruction surgery.
It is this treatment of the LGBT community in the past and present that led me to start questioning why disabled bodies should be viewed any differently from any other minority group. Just as our society began to accept that there are different types of sexual orientation, behavior and genders, I wonder why our society cannot start to accept that there are different types of bodies and minds. Why is it that when a body or mind works differently than the so-called normate that we must label it as broken or in need of repair. Or maybe like the queer community the disabled community needs to not only accept their bodies and minds but embrace them as well. And like the LGBT community, the disabled community is automatically queer as well because their bodies and minds differ from what the expected norm of a human body or mind is supposed to look like.
Another way I ask the reader to view the disabled body differently is by thinking of bodies in space. While I strongly embrace the idea of going against the normate, I really don’t think there is such thing as a normate. I honestly don’t anyone is normal or is a normate. As bodies occupying a space, each of us as individuals perceives the world differently. Individuals with disabilities are perfect examples of how bodies view and occupy space differently. Think of the blind person who cannot see the objects in their space or even the distance between them but perceives their world through the use of other senses such as touch and sound. Or think of the deaf individual who cannot hear sounds but rather has a language out of visual images and physical vibrations. Or even think of the autistic individual who cannot perceive body language or thoughts of the other, but because of their detail-oriented perceptions can make profound discoveries in their own space. There is no normate because all of our bodies and minds work and process differently. And because all of our perceptions of space and objects are different, there is no one true known reality.
I have already come out of the closet as a bisexual woman, but at this time I feel that I should finally come out as crip. I do not consider myself to be disabled; however, I do consider myself neurodiverse. I mean neurodiverse in the sense that the way I perceive the world cognitively is different than how the normate expects it to be seen. There has been a more specific label placed on me titled Non-Verbal Learning Disorder but the label hardly reveals the whole individual I truly am. What it means to me is that my own body perceives the world differently. For example I do not have peripheral vision so my body does not perceive the space that is outside regular peripherally sight of my eyes. I also have trouble with my body in regards to spatial awareness of objects. I have difficulty determining how far objects are from one another including in relation to my body. For these two reasons I often bump into the other objects and people occupying a shared space. Sometimes I even have trouble perceiving how my own body appears in to others in their space. I still have trouble perceiving my own facial expressions, body movements, and how they appear to the other. And even outside of cognitive perceptions, my body sometimes still has trouble manipulating the objects in my space due to poor motor skills and lack of upper body strength. And these two impairments explain my lack of athletic ability and dislike of sports.
For years these impairments have made me self-conscious of body in space because I was obsessed of the idea of being the normate. For the longest time, even in regards to my sexual orientation I was obsessed with the idea of the normate. Because of pressure from my society, I felt that I had to pick to either be a lesbian or be straight. I constantly wondered whether I was a true bisexual because I felt attraction stronger to one sex over the other. I also wondered because I felt different types of attraction to each sex. It is through this class and idea of bodies in space that I began to question on whether I was really that different from others. I may have different perceptions, thinking patterns, and physical skills but don’t we all? These “impairments” are simply how my body occupies and perceives the space it is in. And if I may be different in the end, why does it matter? I simply have a queer mind. As I have begun to accept my bisexuality more over the years, I have also begun to slowly accept my neurodiverse characteristics as well. As I write now I have moved from acceptance to embracement of all the components that make up my identity. Even if there is a normate why would I want to be one when I am much happier being the individual I am. And even if there is a normate why should I let these socially constructed labels they have place on me define who I am. Just because I have a “disability” does not mean I am asexual and have no desire for sexual relationships nor does it mean that I am incapable of having sexual relations. And even if they do not view me as asexual, I refuse to let society blindly (excuse the ableist term) put the label of heterosexual on me. I am not the wide-eye naïve girl who falls for the pretty boys; I have attractions for both sexes and many different genders which I will not deny. And just because I am bisexual does not mean I am a lesbian or straight girl in hiding. My body in my space knows these feelings are real. I add in this last rant about disability and sexuality because I think it is so often overlooked that there are members of the LGBT community who have disabilities and vice versa. I will fight against the notion that one can only identify with one identity, especially if they have multiple minority identities. And I hope that in my double coming out, I can encourage to do the same as well.
In moving forward to the future, I hope that our society shift from their strict mentality that there is a normate. As we slowly and steadily begin to accept and embrace the LGBT community, I hope that our society can do the same for members of the disabled community. We must recognize that the impairments are not the disabled individual’s to solve and recover from, we must provide access to the limits society forces them to face. I must echo once again that I hope that society can stop the belief that there is a normal body and mind and a normal performance of body and mind. Perhaps through access and change of thinking, these so called impairments will not be viewed as impairments but as differences instead. I hope and ask for greater society to do the same for the LGBT community. Society must also remove the limitations and hurdles it has made LGBT individuals go through in order to receive access to the rights that we all deserve. Just as there is no normal body or mind, there is also no such thing as a normal gender or sexual orientation. As those of us who have been deemed not worthy of the normate category, let us embrace all the identities that make us the unique individuals who we are. If we do not embrace our identities, society never will.
The way your arms are skinny makes me nervous
I hate the word skinny, it sounds so vulgar and itchy
Your skinny arms make me feel cold
And I wonder how the winter air must affect your skinny arms
Maybe I should say thin,
Your thin arms make me afraid of myself.
I hate the word thin too,
Both words make me want to cry…
Your thin, skinny arms make me want to hurt myself
Make me want to break something…
I feel like you’re so breakable
Your thinny arms make me jealous, just a little bit
Well, maybe more than that –
My arms look at your thinny ones, give me the finger and mutter a silent “fuck you.”
I want to touch your thinny arms and watch them respond,
For some reason I feel arms like yours must themselves be sentient beings
Your skith arms must have a mind of their own.
They must be wise and benevolent like Gandhi,
He had skith arms,
Your arms like his, grown from the same curry powder and Hinduislamibuddhist rain,
Never tainted or enriched by Saharan dust or the black song of the Bantu
Like my arms,
Makes me long for singularity and oneness,
Not the thick confusion of mixed.
Your thin arms wrapped around her thin arms,
Wrapped around smiles,
Wrapped around memories
Wrapped around yourself in the dark
Here I don’t envy your thin arms because thin arms can never hold you the way
Thick ones can
Even if the only ones holding you are your own.
Your thin arms are beautiful,
And fragile and thin,
Surreptitiously they snake their way up your sleeves and join the rest of you
I want there to be more of you so that when I hug you
I am not afraid that you’ll snap into
Your skinny arms make me nostalgic
And ponderous and timid and awkward,
Next to your arms, my arms are leviathans
Redwoods beside olive branches,
Deep sea pipelines beside dainty straws,
Beside your thin arms mine sometimes don’t know how to be,
But if they could say anything,
It would be take a load off
Your thin arms must be weary…
Give me your troubles,
My thick arms will carry them a while.
The hospital was surrounded by news media, besieged by sound trucks with their antennae pointed to the black sky. I had hoped to sneak in, returning to work after a three-week absence, anonymous and unnoticed. Now, I had to thread my way through the outer ring of trucks and past the reporters, tethered to them within the safety of the circle.
Of course, they ignored me. I was just another hospital employee coming to work on the graveyard shift. If they had bothered to look, they might have wondered what had happened to me – something didn’t look right about me. That is, at least, how I felt. I had lost almost 30 pounds in those three weeks, and my face was still raw. My uniform – scrub shirt and white pants – hung off of me.
I entered through the emergency room, leaving behind the army of reporters and their trucks; leaving their bright lights for the fluorescents of the hospital. I was thankful that no one I knew seemed to be on duty in the ER; thankful that I recognized no one in the staff room where I dutifully punched my time card, left, and took the steps to the fifth floor. My floor, the cardiology unit. This is where the recognition would come.
As I came through the double doors, another nurse turned to look, anxious for her shift to end and hand over her patients to the night shift. She didn’t really care what the night shift nurses looked like, as long as they were ready to take responsibility for her seven or eight patients. And, so, she nodded a greeting to me, paying no attention to my appearance.
The next nurse to see me – another “male” nurse (I always chuckled at that appellation – male nurse – as if it described the type of nursing, not the nurse, like cardiology nurse or pediatric nurse or OR nurse. “Oh yes, I’m a male nurse; I only work on males.”) – did, however, gasp when he saw me. Like me – like any gay man in Atlanta in 1984 – he would be keenly aware of THE LOOK. Emaciated and scarred. THE AIDS LOOK.
I had first been introduced to THE AIDS LOOK while still in nursing school at the University of North Carolina, although the term, AIDS, had not yet been coined. While researching a paper for a class called the Health of Populations (HOPs), I had come across an article about the “gay illness” striking gay men in New York City. I had chosen gay men as my population to study. I was, after all, one of seven men in a nursing program with over 300 students. I felt it would be “safe” to choose a population I actually cared about; a population I knew a little about from my own experience. I had my own experiences as a gay man to draw upon. I, myself, had been called by the county health department after being reported as a “contact” from someone with syphilis. I had dutifully reported to the Student Health Center, to the knowledgeable and sympathetic physician; a physician who worked with gay men. While it turned out that I did not have syphilis, I did now have a knowledgeable and sympathetic physician who knew that I was gay and would attend to the unique health needs of a gay man – a sore throat would require swabbing for gonorrhea, not simply looking for strep or some other run-of-the-mill cause. It only seemed fitting that I should honor this relationship by looking at the specific health needs of gay men for my HOPs research paper. And, there they were, the panoply of gay-related needs, all of them venereal in nature. I was even pleasantly surprised to find out how much research had been done on my own health needs – journal articles and studies, all about gay men and their needs. I noted, perhaps with a tinge of superiority, that there was little research done on the health needs of lesbians. Most articles assumed that they had no special needs! While looking through the latest updates and abstracts for health journals, I found a reference to a recent New York Times article, “Rare Cancer Seen in 41 Homosexuals.” The year was 1981. I noted it in my paper, in a short paragraph without much concern, concluded the paper, and handed it in.
I didn’t realize how close I would come to this new gay disease. None of us did. By the time I graduated in 1984 with my nursing degree from Carolina, several of my friends – and boyfriends – would be sick or dead of the disease. The first man I had slept with at Carolina, Hoagie Gaskins, would get sick, be hospitalized, and die while I was rotating through the wards at North Carolina Memorial Hospital. I would visit him while he was in the hospital, although he would not recognize me.
“Hi,” I tried to sound casual with the evening shift male nurse. “I had the chicken pox. It’s always worse for an adult. At least, that’s what they told me, and I believe them! What’s with all the cameras outside? I’m not exactly ready for my close-up.”
“Daddy King died this evening,” the other nurse responded, happy not to have to ask the questions.
Ah yes, Daddy King. Marin Luther King Junior’s father. Martin Luther King Senior. He had come to the cardiology unit during the week before I had gotten sick. I wanted to like him, to feel like I was working with a little bit of American history, but . . . he had been an unpleasant patient, demanding. Nothing we, the nurses, did was right, and he had hired private duty nurses for the night shift. I hadn’t liked him. And, I felt a little guilty about it. Now, at the end, he had died, summoning news reporters to witness my sickly return to work. I still didn’t like him.
I moved on through the hallways of the unit, passing evening nurses ready to end their shift and night nurses, like me, about to begin. These nurses knew me. They knew what I looked like – used to look like – and each one registered her surprise followed by a quick attempt to recover. Yes, I looked bad – a dermatologist whose services I would seek out in the coming weeks told me that there was nothing they could do for the severe scaring of my face for at least year, possibly two.
Like my fellow nurses, I, too, was scared. In the next week I would seek out the advice of Atlanta’s preeminent AIDS physician of the time.
“Do I have AIDS?” I asked the doctor.
“I can’t tell you for certain right now. Did you have the chicken pox as a child?” he probed. It turned out that a reactivation of a childhood illnesses was, at the time, an indication of the disease. There was no AIDS test in 1984 – it wouldn’t come on the scene until 1985. This required doctors to make their diagnosis of AIDS based on “indications” of the disease – an impaired immune system in an otherwise healthy person was the primary indication. A reactivation of a childhood disease would indicate such an impaired immune system – and my mother couldn’t recall with certainty whether I had had chicken pox as a child or not.
“We can test your T Cells and see if they’re abnormal,” he offered.
I would decline at the time. I had already decided that I had AIDS and that there was nothing to be done for me. I had made the decision to get away before I got sick, but I had not yet made that decision on my first night back at work, although that first night was instrumental in my decision-making.
As we all got used to me and what I looked like, I began my shift. I listened to the report taped by the evening shift and began rounds on my patients – all cardiology patients until later in the shift. The Emergency Room called in the middle of the shift with an admission – an AIDS patient with cardiology complications. I volunteered to take him. He was brought upstairs by a team of orderlies in biohazard suits. He was placed on “strict isolation” – we all had to don biohazard suits and masks to enter his room, discarding them in a biohazard container at the door to his room. All reusable materials used in his care – sheets, towels, washcloths, blood pressure cuffs – had to remain in the room or be placed into bright red bags marked “BIOHAZARD” and be sterilized before being put back into use. All disposable materials – dressings, gloves, masks – had to be placed into bags also marked “BIOHAZARD” to be disposed of separately from all other trash on the unit.
He looked like hell – worse than me – emaciated with open weeping sores, Kaposi Sarcoma, and severe pneumonia, Pnuemocystis carnii pneumonia. I don’t recall what his cardiology complications were, but that he would have some cardiology problems was no surprise.
Is this what is going to happen to me? I worried. At some point during that night shift I decided that I had to leave – I either already had AIDS and would die a very ugly death, or, somehow, I didn’t have it, and I needed to get out of town – out of the country – to avoid that fate.
My plan took shape over the next several weeks, as I continued to work the night shift – watching our AIDS patient die that very ugly death that I feared – and made my rounds to the dermatologist and infectious disease – AIDS – doctor. I would join the Peace Corps. The Peace Corps would send me overseas. If I didn’t have a healthy immune system, I would die quickly. If I had a healthy immune system, I would be safely out of harm’s way for two years – long enough for my face to heal enough to be sanded down by the dermatologist.