In 1986 hysteria over "the AIDS crisis," another public health issue centered around easily marginalized and often "undesirable" (read: gay and/or users of illicit intravenous drugs) populations, was mounting. First identified in 1981 and initially called "GRID," for Gay-Related Immune Disorder, by 1986 it was becoming clear that this scourge was spreading and that no matter how firmly heads were implanted in sand, the problem was not going to stay neatly confined to sections of New York, Miami, and San Francisco where "those people" were clustered, nor would it be limited to those who have sex with others of the same gender and those who use illicit intravenous drugs. While the problem was rampant in those marginalized populations, it had been easy enough to dismiss elsewhere, whether with sympathy, condemnation, prayer, or indifference, until "those people" and "their problem" ceased being cordoned off from everyone else, or at least so those uncomfortable with homosexuality and illicit drug use preferred to believe. Ethics and morality aside, it was a public health problem with implications for everyone.
Like most, in the early 1980s I had seen occasional mention of this thing called "AIDS" in newspapers and had heard a thirty second blurb or two on the radio or television, but the topic didn't have more than passing academic interest for me until 1984, when I met "Gary."
Between jobs and anticipating a possible move out of state, I was working as an "agency nurse," with day-to-day gigs in hospitals that were short-staffed. The advantage was that I could work as much or as little as I chose, and could choose from among the hospitals with which my employing agency was contracted. The disadvantage was that the hospital could cancel me with little notice and there might or might not be another assignment available, and that many of the contracted hospitals were short-staffed because, with good reason, no one wanted to work there. Indeed, there were one or two places to which I declined ever to return after working one solitary day. Another came very close. Indeed, it perhaps was the Cabrini-Green of hospitals, and, thinking of it that way, it now makes perfect sense that once my initial horror had worn off I became a regular on the unit widely acknowledged as the worst of the worst.
It was a 34 bed medical unit, and the place where the terribly ill and usually unresponsive nursing home residents were sent when they required hospital care. They had pneumonia and urinary tract infections that had become systemic, gaping bedsores that also were infected, and usually some other superimposed acute problem as well, such as a heart attack or stroke. They were fed through tubes, urinated through tubes, and sometimes pooped through openings on their abdomens. They drooled, choked, coughed, and spit. Some had tracheostomies; many required suctioning so as not to drown in their own secretions. They were incontinent and unable to move. Limbs were bent and "frozen" in place. The patients babbled or cried out. They smelled. They were but shells of their younger, healthy selves.
And for these 34 patients there were two - count them: t-w-o - nurses. 17 patients for each of us. The "Head Nurse," complete in white uniform and cap, sat at the desk, nursed the doctors and the charts, and ran herd on the nurses' aides who did the bathing, cleaning, feeding, and general grunt work that didn't require a professional license. And we two RNs ran up and down the long halls of that tired, outdated building, pushing medications into our charges, often after grinding them up and mixing them with some soft food that could be swallowed or with liquid that could be instilled in a feeding tube. We hung intravenous infusions and countless "piggybacks," smaller bags of intravenous medications that were on strict schedules and often so many in number that it was nearly impossible to schedule them all for one 24 hour period. We administered tube feedings, dressed those ghastly wounds, unclogged catheters and changed them when they came out or couldn't be rendered patent again, suctioned gallons of secretions from mouths and windpipes, and did it all with antiquated systems and equipment. Many days I watched the clock, mentally calculating how much money would be in my check if I walked away that minute, and how much longer I needed to stay in order to complete the assignment I had accepted.
But I fell into a rhythm and found comraderie with that Head Nurse and the various others who on different days managed the 17 patients who weren't mine, and this together with the fact that the hospital was walking distance from my home and the knowledge that I wouldn't be doing "temp work" forever, kept me going back.
There were some crazy rules in that place, and nothing is more fun than circumventing crazy rules. One was that employees must leave all personal belongings in lockers in the basement. Another was that there could be no food or drink on the units except what was provided for patients, and staff were not to touch that. As a temp, though, I didn't have a basement locker and so needed to stash my coat and other outerwear somewhere else. I also entered the hospital via the front door instead of the employee entrance, in order to check in at the Nursing Office and receive my assignment for the day. It took little time to figure out that a thermos of contraband coffee could be secreted under the coat over my arm and that a smiling, chipper demeanor was sufficient to distract the Nursing Supervisor's gaze from my burden. Later in the morning the Head Nurse on the unit would serve as lookout, watching for crotchety doctors or the Nursing Supervisor while I poured that blessed hot java for all three of us. It was the best joe I ever had, and the circumstances made it doubly delicious!
So in this time warp of a setting, with the sickest and most hopeless patients, minimal staff and fewer resources, you can imagine that "Gary" being admitted was a breath of fresh air. A tall, good-looking, thirty-something fellow, Gary was alert and communicative, he walked about, and he had a sense of humor and a generally pleasant air about him. There was a dismal, sparsely furnished lounge at the end of the hall with an antiquated video game, and I used to tease Gary about making me hunt him down in order to give him his medicine, as he almost always was in that lounge whiling away time playing that game. Gary had stomach troubles, and with 16 other patients who had extensive needs I didn't have time to delve into the details of his, or any, case, but I doled out medications and saw him off for various diagnostic tests. He'd improve and be discharged, but before long return.
One day the Head Nurse stopped me as I passed, speaking in a low tone: "That Gary says he has that AIDS. Do you think he really does?"
"I have no idea," I responded, but the seed had been planted.
Gary indeed did have AIDS, which in 1984 was a death sentence. It was years before I connected the dots and realized he had been admitted to that unit because neither his disease nor his sexual orientation would be a problem for any of the other patients, who for the most part weren't alert enough to know or care who was around them. I have wondered if some of the "nicer" and better hospitals refused to admit him at all, masking fear and stigmatization with language about not being prepared to treat that diagnosis.
Gary declined over time and eventually died, not long after the day he had a sudden, dramatic grand mal seizure. I remember a staff member screaming as I ran down the hall to find Gary thrashing uncontrollably in bed with IV lines pulled out and blood everywhere. I jumped in to protect my patient from injuring himself, and emerged well decorated with blood and other body fluids, because this is what nurses do. In 1984 there were no "standard" or "universal" precautions, and gloves, gowns, and other protection were optional unless patients were placed in specific kinds of isolation that required particular garb. It's a rare nurse who hasn't "worn" pee, poop, blood, vomitus, spittle, and every kind of drainage you can imagine. In 2016 we have more protection, but since the days of Florence Nightingale we've jumped in to do what needed to be done, in all kinds of circumstances.
Gary, who pretty much was the only patient who could talk to me in those days, had piqued my curiosity and I set out to learn about AIDS. I frequented university libraries and read everything I could find. While much was not known in those days, much else was, and I learned.
Persons with AIDS often are susceptible to a particular kind of pneumonia that does not affect those with healthy immune systems. In the mid 1980s there was one intravenous antibiotic that was used most of the time to treat that pneumonia, and shortly after I moved from doing temp work in the hospital to teaching and making home visits part-time there was a need for nurses to administer this infusion to patients at home. Every single nurse working at that home health agency resigned rather than be compelled to visit AIDS patients, except me. So I ran a lot of IV antibiotics into a lot of people with AIDS for many months.
"Doug" was a math teacher at a Catholic high school, and, fortunately, lived just a few blocks from me. No doubt terrified of his AIDS diagnosis and the assorted opportunistic infections that invariably accompanied it at the time, Doug perhaps was even more fearful of that diagnosis being discovered by his employer, in which case he would be fired for being gay. We arranged for me to visit him around five o'clock every afternoon for a two hour infusion. He finished work and left the school around 3:30, and this schedule gave him 90 minutes to run errands and do other essential tasks. I then would arrive and insert an IV line, being careful to find a vein high enough on his arm that the intravenous catheter wouldn't show when Doug reached up to write on the blackboard at school the next day. We visited as the infusion began, but soon it would make him sick and shortly after that he would fall asleep. When the infusion was completed I disconnected the line and flushed the catheter without waking Doug, and slipped out of his apartment, locking the door behind me. By the next morning he felt well enough to go to work, and we repeated the cycle every day. I have moved four times since those days, but eventually ended up in Doug's old neighborhood once again. To this day I don't walk by the building where he lived without looking up at what once were his windows and wishing we had known then what we know today.
HIV isn't a death sentence any more. Many people who have tested HIV-positive now lead perfectly normal lives with no detectable viral load. They are not ostracized on the most undesirable hospital units, and are far less likely to be fired from their jobs because of their sexual orientation. I would have wanted my children to have a teacher like Doug, and it still hurts my heart to remember the days of carefully placing that IV catheter where it would stay hidden while Doug taught.
In 1986 I accepted a position as Nursing Service Chief at the research hospital of the National Institutes of Health in Bethesda, Maryland, and the inpatient units and outpatient clinics of the National Institute of Allergy and Infectious Diseases were among those on my service. There researchers were working tirelessly to understand, treat, and prevent HIV/AIDS. The very latest science from around the world was at my fingertips; all I had to do was ask. Not long after my arrival at NIH I was asked to address the annual conference of the American Organization of Nurse Executives, speaking about HIV/AIDS and its implications for nursing administration and practice. The floodgates opened after that meeting, and as soon as I returned to Bethesda requests for more presentations began pouring in. I traveled across the country speaking to professional and managerial organizations, interdisciplinary clinical audiences, and even a small town in West Virginia where not only healthcare personnel but also clergy, business leaders, politicians, and regular folks turned out because even there people were coming to realize that this was a public health issue that affected everyone. Periodically I would call the chief of the lab doing HIV/AIDS research for NIAID and ask what was new, what was the latest thinking about this issue, and what might people anticipate in the future. Without fail he dropped what he was doing and went to my office to update me so the information I took to our colleagues and to the public across the country would be as current and accurate as possible. It was a heady but humbling time that had begun with Gary, the only patient who could talk to me in that hospital from hell, saw me through countless others in the hospital and at home, and then landed me in the national spotlight with the best science of the NIH behind me.
"Standard" or "universal" precautions were formulated during those days, and I incorporated them into my presentations. From that point on, I told audiences, we would treat all blood and body fluids as though they were infected, and not only with HIV, but also with hepatitis and potentially many other pathogens. HIV actually is a rather fragile little virus, I told them, while something like hepatitis is much more virulent, widespread, and risky to those around a patient. We had recognized that it was important to take precautions across the board. And today we do.
But shortly after I addressed the American College of Healthcare Administrators the owner of a nursing home who had been in the audience called me, astounded and incredulous. Did I really mean, he wondered, that he would be expected to provide gloves for all of his nurses' aides? Did I not understand that the residents of his facility were incontinent, and the aides had their hands in urine, feces, and other bodily substances all the time? Supplying gloves for that would be very expensive, he protested.
I massaged my chin a bit after it hit my desk and refrained from posing the obviously rhetorical question: "You mean you already don't supply gloves for workers who must handle feces and urine?!" It was "a teachable moment," and I sympathized with the caller's budget woes as I explained what would be necessary and why. In the early 1990s home healthcare agencies also rationed gloves, and if nurses ran out before the next allotment was due they either did without or purchased gloves themselves. Costs must be contained, we were told.
That doesn't happen any more. With apologies for a photo awkwardly cropped to omit the hospital's name, this is an example of the sort of thing that today is seen outside the door of every patient's room. Home health clinicians are required to carry the full array of "personal protective equipment," and nary an eyebrow is raised when they need more gloves, gowns, masks, or other supplies restocked.
No doubt this is more expensive than the days when nursing assistants provided personal care bare-handed and when gloves were rationed to professionals. But we came to understand that it was necessary, important, and in the long run, worth the money. An ounce of prevention is cheaper than a pound of cure, to adapt an old adage.
So now here we are in 2016 and the question of bathroom usage has arisen. And it has arisen widely, not just in the few hotspots that have made headlines. Indeed, a front page story in last week's Sunday New York Times noted that the Department of Education has received hundreds of requests for guidance about the "bathroom issue" from schools all over the country. What is to be done about transgender persons and public bathrooms in all sorts of settings?
Indeed, it feels rather like 1986 all over again. We have a marginalized population that perhaps many people would prefer just would go away, or at least stay out of sight, or be very inconspicuous . . . rather like the gay people and illicit IV drug users of thirty years ago. If only AIDS had stayed in those rather easy-to-ignore parts of New York, Miami, and San Francisco then maybe "those people" could have been helped with "their problem" without affecting or inconveniencing the rest of us. But AIDS didn't stay there; HIV was spreading across the country well before most people knew it, including those who run healthcare organizations. And transgender persons are among us everywhere as well, always have been, and always have used bathrooms, whether those who are uncomfortable with these facts like it or not. Of course it's fundamentally wrong to isolate, exclude, and segregate groups of people anyway; we know that "separate but equal" wasn't, Native Americans confined to reservations did not have the same opportunities and resources as others, and the internment of Japanese Americans during World War II remains a national embarrassment, to cite just a few examples that tarnish our history.
Our transgender brothers and sisters are among us, and they're going to use bathrooms.
Sexual assault, however, is a public health problem. It affects all ages and both genders, all socioeconomic and ethnic groups, all gender orientations and identities, and urban, suburban, and rural populations. Transgender persons perhaps are the very least likely to be perpetrators, but their need to use bathrooms like the rest of us has cast new light on the problem of sexual vulnerability. If we truly are worried about perpetrators disguising themselves as the other gender and entering public spaces to commit crimes, then perhaps we need to reconsider the configuration of public spaces. Are open locker rooms and dressing rooms truly advisable and safe if we are to take seriously sexual assault as a public health issue and if we identify nudity as a risk factor? Instead of providing private changing rooms for transgender persons, should these be provided for everyone? Oh my goodness, that would be expensive! Just as providing complete personal protective equipment in easily accessible locations for all healthcare personnel was expensive. Except that once public spaces were reconfigured there would be no ongoing expense, whereas gloves, gowns, and the rest are disposable and must be replaced after each use. But still we provide those disposables, and with good reason. To what extent is the current "kerfluffle" truly about bathrooms and transgender people, and to what extent is it about not-quite-wanting to acknowledge the very substantial public health problem that is sexual assault and the possible costs of solving it?
I don't know; this is not my area of expertise. But I feel confident that with transgender people having used bathrooms as long as bathrooms have existed, this is not the real issue underlying the disquiet of today. As a people we still can be nudgey about things sexual in 2016, particularly things sexually "different." Is this wanting "those people" who make others uncomfortable simply by being who they are, wanting them to go away if possible and at least be invisible or inconspicuous if not, is it a red herring, drawing attention away from the indisputable fact that everywhere, every day, people of all sorts are assaulted in the most intimate of ways and harmed for life as a result, and that we as a people have a responsibility to address this public health problem just as we did polio and child labor? Must our grandmothers, spouses, sons, best friends, business partners, or we ourselves be attacked before we allow that the elephant in the room is not named "transgender," but rather "assault"? To what extent are we willing to place others at risk in order to avoid the expense of protecting them? I'm not sure, but when I consider this issue I see much that looks to me like
1986 All Over Again.
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