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Audrey L~ibovich Danit! Andrztjtk • Tina Aspiala"' • Brookt Conti• jackit Coopmnan• Monica Fong • jackit Goldbtrg • john Gorham • I<Arm jacobson "'• Dan Murphy • Rostmary Hutzkr • Bm Lumpkin • Sothy Tia • Elana aUk "'tkcttd to staffFtbruary 5, 1995 Mtmbtn and Dirtcton: Edward B. Bennett III Constance Clement • Peter B. Cooper • Andy Coun • Brooks Kelly • Patricia Pierce • Kathy Reich • Fred Strebeigh • Thomas Strong Jose Manud Tesoro

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TheNewJournal Volume 27, Number 4

The magazine about Yale and New Haven

8 9 13 r6

February 10, 1995

John Boswell: The lion's Last Roar by jay Porter.

Where They Don't Call It AIDS by Karen jacobson. Families find relief at Yale-New Haven's Pediatric AIDS Ward.

At Home with AIDS by Ted Gesing. New Haven's homeless HIV-positive population finds refuge in transitional housing.

Positively Negative by Melissa Moskof. Alvin Novick's good news changes his view of the uninfected.

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When Doctors Can't Cure by David Gerber. The virus still eludes researchers, but team medicine has pushed treatment even further.

Writing the Virus by Suzanne Kim. Humanities scholars search for the meaning in metaphor. /

29 32 T

Managing AIDS, Managing Difference by Katherine Bell. New Haven agencies adapt to the changing face of an epidemic.

Playing the Numbers Game? by Ann Sledge. Is projecting HIV infection statistics onto Yale a plausible guess at our AIDS population.

A 4 5 6

35 36

Letters about this Issue Points of Departure Between the Ymes: Of Laura Ashley and Latex by Robin Kemper Afterthought: Our AIDS Inheritance by Carra Hood

Cover design by Ted Gesing, Kate Schuler, and Gabriel Snyder.

T1w Nnv }qtmutl;. publish«! fi~ times during the academic year by The New Journal a< Yale. Inc., P.O. Box 3<432 Yale Scation, New Haftn, CT 06520. Office addtess: 252 Parle Street. Phone: (203) 432· 1957. All cone<na copyrigh< 1994 by The New Joumalac Yale, Inc. All Righu Reserved. Reproduction eithec in whole or in pan withouc wrinen permission of publilher and editor in chief is prorubiced.

Wbik crus magazint is publish«! by Yalt Colleg• scudenu, Yale Univenity is no< responsiblt for iu concmu. Ten thousand copies of each issue are dis<ribuced free to membtn of Yale and New Ha..,n community. Subscriptions are availible to ch.- ouuidt tht area. Rates: One year, $ 18. Two yean, $30. T1w Nt111 } ftlnu/ is princed by Turley Publications, Palmer, MA; bookkeeping and billing services are editor and commenu on Yalt and New Havm issues. Write co Jay Porter, Editorials. 3<432 Yale Scation, New provided by Colman Bookkeeping of New Ha~n. Tfw Nnv jqr.nu/ encourages lenen to Haven, Cf 06520. Alllenen for publication must indude address and signacuce. We reserve tht righ< to «<it all ktren f'or publication.

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To the Editor: The Farmington Canal Rail to Trail Association (FCRTA) is extremely concerned about the negativity of the article "Trailing Behind" (TN], December 2, 1994). The article not only had a critical and misleading tone but. was filled with factual mistakes as well.

Some of the incorrect information in this article includes: 1. The title itself. This starts the article in a very negative way. "Trailing Behind" insinuates that the project is somehow bogged down. In fact, the Farmington Canal Trail is closer to completion than any greenway project in Connecticut. The Cheshire portion is completed, Hamden's northern section is under construction, 25 miles of the trail are currently being designed in norther Connecticut, and New Haven has purchased the land and set aside money for development.

2. "A glance at the list of board members on FCRTA ... shows that seven reside in New Haven. The others come from exclusive suburbs." The seven board members who reside in New Haven represent one-third of the Board. We serve as advocates for the Trail in the three communities of New Haven, Hamden and Cheshire. The FCRTA board reflects this as one-third of our board members live in New Haven.

3. "Since FCRTA has been the main lobbying and fundraising force, it will be its board's money and ideas that will shape the trail." The FCRTA has been a major advocate of this project but has never held the purse strings. Building a rail-trail costs millions of dollars. This project has received the majority of funding from the Federal Department of Transportation with lesser amounts from the State of Connecticut, and even smaller amounts from local municipalities.

4. "FCRTA's brochure clearly spells out its utopian vision ... this vision seems unrealistic and niive." If so, then the 7,000 miles of rail-trail already existing across the nation, many traveling through equally diverse and more urban communities, suffer from the same niivete.

5. Quote from Nancy Alderman that the

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"Forestry School students' work was not really helpful-except as a good case study."

This statement was made in response to a particular question about the management plan and not on their work as a whole.

6. "Balmori's idea for the park transcends the somewhat limited vision of the FCRTA ... "The FCRTA commissioned Diana Balmori to prepare the plan for the New Haven section of the trail. Her plan is therefore not at variance with any FCRTA plan but is the FCRTA plan.

7.. "City officials have begun work on a grant ¡proposal co obtain federal funding for the construction of the trail, but the FCRTA paved the way from the city to act and has no intention of relinquishing control of the project." It has always been the role of the FCRTA to champion this linear park but the local municipalities are.in total control.

8. "Others concerned with impFoving general living conditions suggested using the land for purposes other than a parkbuilding houses . .. or stores." Because an ¡ AT&T cable lies under the property, no buildings can be constructed on the trail.

Also, federal money for the Farmington Canal trail has come through the Department of Transportation Enhancement Fund.

This money has been set aside for projects such as these and in no way takes money away from or prevents the city from obtaining other sources of funding for urban development projects. In fact, the project may increase the chances of obtaining other development money.

From the beginning, the FCRTA has had dialogues with the neighborhoods in New Haven and Hamden through which this trail travels. The Association has always had an open-door policy to anyone and any idea that has been presented.

-Nancy Bostwick, Executive Director The Farmington Canal Rail to Trail Association Board of Directors THE EDITOR REPLIES: Although wt appreciate

the conctrns of the Farmington Rail to Trail Association board, we stand by the facts and opinions expressed in Kau Schuler s article.

That the project fag; well behind is undeniable;

Ms. Schuler's other observations and criticism stem from issues raised by numer(}US professionals and concerned citizem. In running the piece, we intended to increase discussion ofa project little-known to tht Yale community. ~ hope that the FCRTA and ali parties involved appreciate our goals: raising awareness and fostering comtructive criticism.

To the Editor: I am writing to correct some information in Brooke Conti's article, "Yalies Who Stay" (TN], October 14). There is, in fact, a comprehensive database of Yalies who stay and thrive in the New Haven area. Each September, the Yale Club of New Haven writes to the 8,000 or so area alumni and invites them to join. Typically, about 1,000 join each year.

Th.e Yale Club provides a range of opportunities for alumni and friends of Yale to meet, enjoy each other's. company, and reconnect to Yale. For example, we sponsor a monthly luncheon meeting with a speaker.

Our first speaker this year was Mayor John DeStefano.

Our events raise scholarship funds as well as provide a community for those interested in Yale. This year, we are supporting 62 local area students at Yale, including ten graduate students. We are also provide funding for FOCUS, a community service program for incoming Yale sophomores, and provide summer stipends for students involved in other community service projects. There are many opportunities for friendship and fun for those who are interested.

The Yale Club of New Haven welcomes anyone with an interest in Yale as a member.

-Melanie A. Ginter DC '78, '81 M.S. President of the Yale Club of New Haven

The New Journal welcomes letters to the

Editor. we reserve the right to edit for length.Pkase send mail to Box 3432, Yak Station, New Haven, CT 06520. Or call our office at 432-1957.

THE NEw JouRNAL

T H I S Commons was dedicated in 1926 to the memory ofYale's dead in the Great War. Nathan Hale stands watch over Old Campus, bound at ankle and wrist. The Revolution and the Civil War occasioned the consecration of countless plaques and statues around campus. All of these men-and they are all men-serve as one more source for Old Yale pride, and rightly so.

But we must find the courage to imagine a day after AIDS, a day when alumni like Larry Kramer and Paul Monette will be honored as generals in the war America was least prepared to fight, least willing to support, and slowest to win. Numbers carved in marble will chart the spread of AIDS in this country and in the world. A place will be set aside for fallen Yale professors as well as for the Yale researchers whose contributions helped to defeat the virus. But the vaster sea of chiseled names will attest to the heavy toll of Yale men and women who studied, worked, loved, and finally died in the shadow of AIDS. Imagine such a monument. Imagine the end to AIDS that must occur before any memorial can be built. Indulge in the satisfying, if inappropriate, war metaphor for at least a moment. For if we can't take a moment to put aside the present-full of suffering and fear of the disease-and think of a future without AIDS, how can we continue to live with it? In the midst of research, care, activism, education, and writing about AIDS, we need the possibility of eventual relie( This kind of visualization doesn't require forgetting those who suffer from AIDS; quite theopposite, it means thinking about the need to remember them forever.

This image has been in my mind over the months of planning this year's special issue. It began with the certain knowledge that Yale has AIDS: not as an abstract idea, but as a horrible physical presence in the bodies of students, professo_rs, and alumni. The 11 stories that fill this issue strive to approach AIDS not from a lofty ivory-tower remove, but from an involved and personal perspective. Through the process of shaping this issue, I arrived at a place of hope that allows me to imagine attending the dedication of a memorial like the one I just described. Or at least to imagine a place for my name on such a memorial if one day it belongs there.

Yale publications, including this one, have long pointed out the face of AIDS in the New Haven community. Although this has played an important role in Yale's contribution to the fight against the disease, by 1995 such coverage seems a little too comfortably distant. We believe in the importance of looking at AIDS issues in New Haven, but from the earliest discussions about the issue we stressed the need to focus on Yale. On campuses across the country, there are openly HIV-positive students and faculty. Would an HIV-positive Yale student come forward to be interviewed, even anonymously, to prove to the rest of the university that AIDS does happen here? We quickly scrapped the idea as exploitative, but retained a commitment to control the urge to locate AIDS elsewhere, anywhere but here.

Like wars, epidemics can end, although bitterly and after years of loss. Researchers are closing in on the virus itself, doctors are learning how better to treat its complications, and scholars in the humanities are examining its ramifications in literature and culture. But even as we dream of monuments and talk of the end of the war against AIDS, we must face the fact that whether or not we know their faces, our friends and mentors here will be among those lost to the disease in the mean time.

This issue is dedicated to the hope of an end, a day when the names and histories of all AIDS veterans will be restored, mourned, remembered, and celebrated with the rest ofYale's war dead.

(CONTINUED FROM COVER)

-]GP FEBRUARY 10, 1995

E Verbally, the slogans chime like the best ad copy. Bubble letters blurt orders in The question concerns every aspiring a voice dripping with suggestion. propagandist: how to clothe the "Consider this a come on," sits poised distasteful, the frightening-or worse, the condom. "Put one over above an orange didactic-with a whimsy and a novelty on your partner tonight," floats over a that will lull the masses into submission? purple one. Punny slogans get extra Solution: a quirky double entendre. points: "Wrap with a friend. Shake, Presidential and evangelical hopefuls Rattle, and (Un)Roll." Likewise, "You're would do well to heed the current . me on. , putung proliferation of AIDS pamphleteering.

Underground safer-sex tracts like The material focuses on a simpler message Positively Aware, put out by the Test than the co mplexity of the ep idemic Positive Aware Network, aim to be a might suggest. Its producers have chosen mainstream, entertaining "HIV 101." wisely to take the rhetoric to its lowest They certainly titillate with alternative level; after aJI, they must appeal to types ways to have fun without exchanging who regularly spend their weeknights with bodily fluids.

Some slide just this side of Beavis and Butthead. The simple kinky: blindfolding, body painting, message-use a condom, or else-h_ardly computer sex, dirty dancing, ice cubes, ranks as enter taanang, let alone S&M. Others offer more creative compelling. Cleverly, the campaign suggestions, such as: "Mummificationcommands with a leering morbiditygift wrap your partner, saving the best black humor transformed from art form to last," or "Shrimping-sucking parts for persuasive device. Take notice, future toes."

While these may succeed by dint of mind manipulators: sex and violence their novelty alone, novice students of always get 'em. seduction might avoid less clever Visually, the AIDS ads are hardly suggestions like "Sniffing-from perfumes original. The usual icon consists of a to jock straps, smells can be erotic." Take wrapped condom at a jaunty angle. The notes, children. color schemes ooze comfort, omnipresent The true craft of anti-AIDS pastels evoking nurseries and child-like advertising lies in its most basic, most na¡ivete. Uglier realities disappear with the bantered slogan : "Practice Safer Sex." suggestion of harmonious innocence. The Simple, to the point, it nonetheless lesson: superficial gloss still works combines the best of evocative imagery wonders. and discrete coercion. The clever rhetoric performs what countless hours of phys-ed and piano teachers have yet to accomplish: it transforms discipline from a chore to an indulgence.

If all else fajls, appeal to hedonism: practice moves ->--:: from an exercise of will to , ;: ~ .\ ¡ ' ' ~an excuse for pleasure. ) I. t-:â&#x20AC;˘~\. ~ ..

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Dr. Altice: the Man, the Van, and the Greater Scheme I have this impression of Yale Medical School's Dr. Rick Altice out sweeping the streets of a stricken city like a benevolent force of nature. I was almost relieved when he canceled the interview I had scheduled.

"This man is an AIDS doctor," I'd thought to myself as I hurriedly left the office. "ln the great scheme of things his path should not be crossed by one as mundane as . mme.

But evidently, Dr. Altice is aware of no such scheme. He invited me back, so I'm sitting in his office staring at a blood blister at the end of my thumb, like a bright red emergency button. I keep pushing it and waiting for something to happen. Three days ago a UHS nurse pressed a smoking Q-tip to the end of my thumb and we'd listened in mutual glee as my wart sizzled and popped like grease in the pan. I press the button one more time, and Dr. Altice steps halfway in the door.

Rick Altice is as compact a man as ever there was. He seems to be of a greater density than the rest of us. His legs and arms are in perfect proportion with his torso. His features are meticulously arranged. Even his hair line bas receded evenly. This is a man, it occurs to me, to whom something as absurd as a wart would not happen.

We shake hands in the doorway, and

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2100 Dixwell Avenue, for the next five minutes I'm desperately trying to keep stride with a man at least six inches shorter than me. "The van is parked across the street," he shouts over his shoulder, referring to the "Commun ity Health Van" in which we plan to spend the afternoon.

The van is one of the many projects initiated by Dr. Altice in his quest to improve medical services for New Haven's most disadvantaged-people whom in Dr. Altice's words, "the system is not equipped nor willing to take care of." Actually a moderately sized RV with a door t h at sticks, the "van" follows New Haven's needle exchange van around the city two days a week. It parks near the "shooting galleries" and offers any takers free medical care, HIV testing and counseling, and social work services. They do a roaring business in condoms. The drive r, a volunteer named Drew Cacuzza, points out that you can tell someone is going to ask for condoms when they approach with a sheepish smile.

Embarrassment is not the only emotion elicited by the van's presence. Two or three times in a given day the medical staff will test someone for HIV. For people without the luxury of regular doctor's appointments, a chance visit to the van may mean grisly qiscoveries-discoveries which, in my idea of the scheme of things, have no place on the sun-splashed streets, where people sometimes laugh out loud.

Rick Altice, thank God, has the courage to ignore my scheme. An AfricanAmerican woman has entered the van. Her fingers are covered with lusterless rings.

Asked if she's been in prison, she says, "Yes, about 20 times." She's also been in the hospital six times with pneumonia. Dr. Altice ushers her into the back of the van where there's a miniature doctor's office.

"Would you like an apple?" he asks. "Yes," she says. ''I'm starved."

-Bm Lumpkin

fEBRUARY

10, 1995

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Boswell: The Lion's Last Roar Many obituaries have been written fo.r John Boswell since his death at age 47 last Christmas Eve, and many eulogies read. I don't intend to write another; I did not know Professor Boswell well enough to catalogue his life's achievements or enumerate his many virtues. But as a gay man and as a Yale student, I have been doubly aware of Boswell's achievements.

No scholar has done more than Boswell to cast light on the status of gay people throughout the sweep of Western history. With the publication of Christianity, Social Tolerance, and Homosexuality in 1980, he almost single-handedly convinced the academy that lesbian and gay studies could, should, and indeed must be pursued by serious historians. In last year's Same-Sec Unions in Premodern Europe be took an audacious argument and crafted a stunning scholarly work that goes to the heart of not only historical questions but current debates about gay rights as well. Its success reminds scholars that their work can have a powerful impact on the lives of everyday people far from the academy.

Indeed, only a handful of Yale professors during my time here have received as much widespread public interest for a scholarly work-after all, not even Harold Bloom's mass-market The Mstern Canon made it into Doonesbury . And that comparison is vital: at a time when talk of "Western civilization" can seem like a code word for "reactionary retrenchment," Boswell's life and work are a crucial reminder for Yale and the wider world that progressive multicultural scholarship can and does rise even from studies of European antiquity. While virtually everyone knows about Boswell's work on homosexuals, fewer realize that his early work and much of his teaching at Yale focused on relations between Christians, Muslims, and Jews in the Middle Ages. And although his scholarly outlook was rooted in an essentialist philosophy (that sexuality reflects not a cultural construction but a trans-historical biological fact) he revealed the ways that various medieval societies could allow diverse people to transcend differences and make room for each other. In this way, as members of a society wracked by mutual intolerance, we all have a huge stake in Boswell's work.

All of my understanding of the importance of Boswell the scholar is centered around my awe of his truly incredible personality. I had the chance to interview him for two stories I wrote for this magazine last school year. But it felt more like a relaxed tutorial than an interview. The subjects of instruction ranged widely, casually. Someho, he seemed a bit more than human, an unimaginably wise, warm, and witty angel. It's one thing to meet a genius, but quite another to be genuinely welcomed and put at ease by one of the great minds of one's time.

So the interview fell away and a wonderful chat ensued, filling perhaps only 20 minutes of his busy November day but making an indelible mark on my memory. He had provided the only intelligent voice in a bizarre Harper$ Magazine symposium on university rules prohibiting student-professor sex, so I opened with those questions.

He began with a highly-reasoned moral explanation of why such relationships were "a bad idea, not terrible, not like molesting your own children or something, but not well-advised," and continued by relating stories about the times students bad hit on him. (Who could blame them? Even though he was obviously ill at the time of

8

our interview, he still possessed the handsome charm of the young scholar-rebel who smiles up from the back of his books.)

He fleshed out the details of the story, mentioned in Harper's, of the gorgeous jock who wandered into his office hours to chat one cool fall day clad only in tiny running shorts. "It was obvious that he wanted to provoke me," said Boswell judiciously, sighing. "And he didn't." He went on to tell of a female student who had made a habit of coming in for extra help. "She would come in and I would sit on one side of the desk and she would always say, 'Why don't I come around there and show you?' And she'd Lean on me," he exclaimed, throwing up his hands. "Did this person not have a clue?

I'm probably the most well-known gay man at Yale. I mean, how hard is it to figure out-that won't work."

Of course I knew Boswell as a gay icon here-and elsewhereand wanted his thoughts on the "one in four, maybe more" controversy. He explained that his time at William and Mary and at Harvard had convinced him that Yale was no more gay than many other schools, just more open of late about homosexuality. But many gay alumni he met felt differently; he talked about some friends of his, Manhattan attorneys who graduated from Yale in the. !970s, who insist that Old Blue is really quite pink. "Of course they think it's a gay school," he laughed, "because they had a great time."

My list of questions exhausted, I thanked him profusely, smiled, shook his hand, and left. I never saw John Boswell again, but I wept at his February 3 memdrial service as friends and colleagues from all over the world gathered to pay their respects. It was my first memorial service for someone who died with AIDS, but I will always remember it as the second time I had the privilege to sit in John Boswell's presence.

He was there during the reading of scriptures from his Christian faith and from the Islamic and Judaic texts he spent his life studying. He was there as his teachers and students praised his contributions to the study of history and of gay and lesbian people's place in it. He was there as loved ones praised his courage, his warmth, his friendship, and his devotion to teaching as an essential part of scholarship. He was there as a mournful trumpet played "When You Wish Upon a Star" in homage to the love of all things Disney that inspired his yearly pilgrimage to Orlando. And he was there almost palpably as his sister struggled to read ftom C.S. Lewis' Chronicles of Narnia, the children's books whose Christian allegorical tales her brother read to her when they were young. She told us that Boswell, near the close of his life, used Narnia to comfort her, to explain how God could allow the presence of evil.

Referring to Asian, the Christ-figure of Narnia, he said, "Remember-He's no tame lion."

And John Boswell was there as we filed out of Battell, knowing that it was right co¡ mourn his untimely death but perhaps more right to celebrate his abiding contributions. Many who were there hope in some way to contribute to the scholarly mission he helped found; all would do well to live up to the standards of courage and humanity he set. But even more in death than in life, John Boswell seems to me a little more than human: he was no tame lion, either.

-]ayPomr Tm: NEW JouRNAL

Families fi nd relief at Yale- New Haven Pediatri c AIDS W ard

Where They Don't Call It AIDS

T

he children sit in the waiting area with their families. A system in another avenue they would have to give a history again. social worker grabs two Auorescent~colored dinosaurs that Sometimes it's very scary for them. As supportive as staff may be, it's squeal when squeezed to calm siblings chasing each other really frightening when their child has to be admitted [to the hospital] around the clinic. Children build castles of blocks. The for the very first time-even if they know it's going to be an walls are covered with bright posters. T he waiting area is like any admission, the child is going to do well, and then go home. It helps if other pediatrician's office. someone you have known for a few years comes up and goes through The Pediatric Specialty Clinic at Yale~New Haven Hospital, for that experience with you." children born to HIV~positive mothers, looks the same as any other The clinic focuses on whole families because the disease is readily pedi~tric specialty clinic; however, no one refers to its true purpose. transmitted from mother to child. The clinic supplies and supervises No one speaks about AIDS or HIY. Other clinics in the hospital are services ranging from medical care for the infected child to emotional run simultaneously, so families with AI DS~ i nfected members and psychological support for healthy siblings and other family intermingle with those less likely to have an understanding of the members who are coping with terminal illness, caregiving, and death. disease. In the back conference The clinic also matches patients This disease is even more difficult in with services addressing education, room, members of the staff, consisting of two nurse prevention , ps ycho~soc ial and pediatrics because the mindset is practitioners, a coordinator, two spiritual issues, and bereavement. pediatric social workers, a program While every child's story is that normally children don't die. director, a clinical trials different, AIDS does hit the The goal [here] is not to cure t he coordinator, a nutritionist, and disenfranchised population in large attending level physicians, arrive numbers, making already difficult child or family but to improve their and begin to organize. The names lives worse. As Dr. Alan Meyers of the children planned to attend and Dr. Michael Weirzman wrote quality of life and alleviate pain." in P~diatric HIV Diuau, "The the clinic and information about them are written on a white dry~ clustering of cases to date among erase board. The atmosphere is tense, especially after a heavy work the poorest and most disenfranchised inner city populations who are week of emergencies and nine children scheduled for one afternoon. frequently cared for at public facilities, the degree of stigma and Of those nine, six are known to be HIV~positive and three are still too public prejudice and misunderstanding, the likelihood that the young for their statuS to be determined. Even before the first patient mother and possibly other family members are or soon will be ill, and arrives, the phone begins to ring. Rides to the clinic are arranged for the complicated medical, psychological, social, and educational needs those without cars, and food coupons are selected for hospital food of these children and their families aggravate the health service distribution. Each time a social worker, nurse, or doctor enters the problems characteristic of children with other chronic health conference room after seeing a patient, several people ask, "Are you conditions."

Joyce Simpson, the pediatric AIDS program coordinator, o.k.?" In spite of the stress, people continue to tell jokes and laugh to organized the clinic at Yale~New Haven in 1987. At the time, the keep themselves moving. to preserve the fragile calm. clinic served only 30 children. " 1989~ 1990 was our hardest year," said The child's family or caretaker brings the child into the clinic.

Simpson. "We would get ten new cases a month and three or four of Nurses then weigh each child and place him or her in a room for them would be positive. About 45 percent of the children with HIV physical and neurological exams. Each nurse and nurse practitioner symptoms had been referred from other places. Back then we didn't sees the same patients each week to provide a sense of continuity. "It even have a secretary. We were so overworked. We would be really hard for the families," said Ann would have clinic all afrernoon, get done at six on a Murphy, one of the clinic's social workers, "if every Friday afrernoon, and find twenty calls on our time they had to enter the medical institutional

FEBRUARY 10,

1995

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10

answering machine that still had to be return ed. " At that time, Simpson was working with a number of volunteer doctors.

Slowly, members joined the team to create the comprehensive care unit currently available.

Because of the low rate of transmission from mother to child among Yale-New Haven patients, the discovery of a newly infected child is devastating; each child belongs to a family that the team already knows. Before telling one family ·of a child's HIV-positive status, the team talked about how the parents had decided to get back together again, were getting a new apartment, and were hoping that with this child they could begin enjoying life again.

Dr. Warren Andiman, director of the Yale-New HavenHospital Pediatric Aids Program, first saw viruses that were later identified as AIDS duri ng his time as director of the hospital's clinical virology lab at Yale-New Haven Hospital. He began seeing pediatric AIDS in the mid-1980s. In 1983, he saw his first perinatally infected child. Perinatal transmission is believed to occur in utero; during delivery through _the exposure to infected maternal blood and vaginal secretions; o r by postpartum ingestion of infected breast milk. Between 1983 and 1986, about two dozen children were diagnosed at Yale-New Haven. In late 1985, Dr. Andiman took a sabbatical leave to work in an adult AIDS program, where the focus was to make progress in understanding the disease. At that point, many people were still scared to go near the infected because so few facts had been established. "We had never seen anything like it before," he said . "The clinical manifestations were dramatic, scary, and strange."

AIDS ranks among the ten leading causes of death in children. All infants born to HIV- positive women originally test positive in conventional screenings because they still carry their mother's antibodies.

These maternal antibodies do not disappear for 15 to 18 months. A more laborious and expensive test that co-cultures the infant's lymphocytes with donor cells can determine a child's HN status much earlier.

The time period from infection to development symptoms appears to be shorter in children than adults. If the child lives beyond the first year, he usually lives from five to 14 years, including a number of years without symptoms. In June 1991, perinatal transmission was believed responsible for 82 percent of pediatric AIDS cases. Some of the clinical features associated with early HIV infection in children include failure to thrive, diarrhea, fever, oral problems, frequent infections, a nd developmental delay.

Pneumocystis carinii pneumonia (PCP), an opportunistic infection, is the most common AIDS-related illness in children. According to Pedilltric HIV lnftction and AIDS, about 50 percent of the children are affected by PCP. As recently as 1989, the mortality rate for children with PCP was 85 perce nt co.mpared to about 20 percent in adults. One of the biggest advances in care has been the development of vigilant anti-PCP drugs in the last few years. Now, most infected children survive the infection.

AIDS also targets the neurological systems of those it strikes. In children, the disease affects basic development. One of the clinic's nurse practitioners, Sustena Romano, said, "What you see is a slowing down of the kid. You see a peak in their development and then they start to slip back. They lose their hand-eye coordination; they get slower. They· hit a certain grade and just can't get past it."

As of December 28, 1994, 427 children had been born to HIV-positive mothers at Yale-New Haven . Fifty-six have died.

Thirteen children died last year, making 1994 the worst year for the clinic since AZT has been administered to children. AZT is the most commonly used drug, although other anti-retroviral drugs, including ddl, ddC, and d4T, are increasingly used as well.

AIDS has raised the et.hical questjon of drug trials involving infected populations.

Since the lifespans of these AIDS-infected children are so short, there has been a movement to provide the newest medications to the children as soon as possible to prolong their lives. For d4T, the latest drug, children's doses were ~mputed as soon as Phase I studies, whkh check for extreme side effects, were done on adults.

THE NEW jOURNAL

A decrease in cases of mother-to-child transmission indicates advances in this area.

In 1990, the overall rate of transmission was about 25 percent. In 1993 it dropped to 20 percen~, and at Yale-New Haven, the rate was between 18 and 19 percent. A study published in the October 1994 Nnu England journal of Mdicin~ indicated that transmission may be lowered to eight percent from an average of 24 percent by administering AZT to the mother during pregnancy and labor, and to the infant during its first six weeks.

Many ethical issues surrounding AIDS become more complex with the involvement of children. The question of disclosure, telling someone that an individual is HIVpositive, has become more complicated with pediatric AIDS because of discrimination.

"Have they disclosed?" "Will they disclose?"

"To whom will they disclose?" These questions echo constandy in an HIV-positive individual's life. One day in the clinic, a Chicano woman brought her infant for a physical. Her teenage daughter accompanied them. After the nurse entered the room, she quickly realized that the mother did not speak English. When the daughter offered to translate, the nurse discreetly turned towards the mother, who vigorously shook her head no. Even without verbal communication the nurse understood that the daughter did not know her mother and baby sibling's HIVpositive status. Another Spanish speaker was asked to translate while the teenager waited outside, visibly upset and terrified by the possibilities of what could be wrong.

The issue of disclosure comes up frcquendy with older HIV-positive children.

Although these children understand that there is something wrong with them from their hospitalization, medication, physical symptoms, and frequent clinic attendance, they usually do not know that they are HIVpositive. Most families fear that a child might disclose his or her HIV status to people who would then ostracize the child.

Throughout the 1980s, stories emerged in the media of children being barred from schools or communities. One school went to the extreme of insisting a child attend class only in a bubble.

Even today, the clinical care team must reeducate a school in the New Haven area about the disease whenever a HIV positive child enters because of the rumors and fears that still circulate. Now, the law protects children from such discrimination. "When I first came here I thought not telling the kids about their HIV status was absolutely ludicrous "and I still believe that the kids have the right to know they have a serious and life threatenlhg illness," said Romano. "But it's not necessary that they know they have HIY." Doc~rs recommend that HIV-positive children attend school whenever they are healthy enough, which means that most of the children start education as early as three years old in a nursery school or in Head Start, a fede ral program that provides preschool for economically deprived children and is specifically mandated to enroll children with HIV infection. When children enter school, their parents must fill out a form stating if their children are on any medication. "Of course we don't lie on school forms," said Romano. "But we can't write AZT. We find someone, often with the help of the Health Department, who can hold the real form that says that the child is HIV-positive. The school then receives a dummy form which does not specify the

''Mt on the lnsitk"

medication the child is on and gives a phone number to call if there are any problems.

Although this might seem like a giveaway for HIV, there are cancer patients who follow a similar format."

All of this leads to an aura of secrecy around the HIV-positive children and their families. "These families struggle under the stress of this [disease] for years and no one knows," said Murphy. "Many families have found that when they have disclosed to their extended family the response is very positive, but we cannot promise people that that will be the reaction. These women have close relationships with extended family, and they depend on that family for support, both practical and emotional. The thought of losing that is terrifying for them. So there are times when our team is the only people that know." The team of nurses, social workers, and doctors make themselves available to the family for suppott early on. "The disclosing of HIV really is a process, not an acute event.

At some later date the child will need to find out that he or she is dying. By approaching the question of disclosure early on, the team hopes to give the parents the time to grapple with their own issues so that they can support their child when the child needs them."

Children have their own needs and time

"Me on the OutsUk"

Drawings by a tm year old whose mother and stepfather art H/V positive.

Fuau.uv 10, 1995

II

schedules as well. Murphy explains, "We never presume to tell families what to do. We meet as many times as they [the parents] need. We might chink of every question, every possible response the child might have.

They just want to process that and they need support around them. We problem-solve with the family about what the right setting would be--the hospital or their home?"

At a certain age, all the children begin to dream of the future. "The majority of the kids have future plans," said Murphy. "They talk about, 'When I get older I want a car or I want to do chis.' A child sees that their body is deteriorating, they can't do what they used to do, they're caking more medicine, or they are taking less because there is less to offer them. That is when most parents are ready to calk to their kids. Sometimes we talk along the lines of'Here's what's not o.k. with your body,' but still never say 'HIV.' "We've actually sat down at times and everybody's been ready. One time it quickly became clear that the kid was not ready to hear what she had. She expressed, ¡~ am not ready to know what it is, but I want to know how I am.' And we were able to tell this little girl that she's doing great."

"I think it would be really hard for a kid who was dying not to put their life in order," said Romano. "They need to do whatever they want to do in their lifetime, just like an adult. IGds really have things they want to do, that they want to give away, clean up their papers.''

T

he Yale-New Haven clinic is one of many inner-city care centers that provides services for children with AIDS. In a similar clinic at the Children's Hospital of Michigan in Detroit, issues of welfare and the strains of inner city life arise to add complexity to the already burdened lives of these families. In the summer of 1993, D, a nine-year-old boy, emaciated and suffering from later-stage infections, was admitted co the hospital. The bed of white sheets and blankets dwarfed him even though he stood nearly five feet tall.

Ahhough his mother was HIV-positive, D was the only of her four children to have contracted the disease. His mother was a

12

talkative, friendly woman. D seemed happiest when his mother was present.

Unfortunately, getting his mother to the hospital was not easy. The hospital had arranged a ride for his mother so she had been able co visit him more often when he was hospitalized. But his mother was a drug user, and the boy had been placed in foster care when he was younger, along with the rest of his siblings. When the boy received a Nintendo game system from the Make a Wish Foundation, a non-profit organization that raises money to fulfill the last wishes of terminally ill children, his mother sold it on the streets for drug money. However, when he missed her visit one day because he had been asleep, he cried the rest of the day for her. His mother had gone into drug treatment many times and presently had custody of D. When he was getting ready to leave the hospital, there were questions of whether she was stable enough to assure administration of his medication.

Clinics must also deal with the psychological and emotional problems of the parents. Providers must accept and learn the cultural norms of their patients. "You must put your values away, put your expectations about what life should be all about in kids and families, and look at what these people have and what they really need," said Romano. "Do they have a house? Do they have food to eat? Then comes how to g~t them health care. It's a challenge because you really have to put your own value system aside."

The psychological stress and emotional burden on the whole family presents other concerns of the team. A nine-year-old girl with HIV was living with her biological father's ex-girlfriend while he was in jail. The woman said that the little girl had thrown up five times the previous day and had refused to eat. The team believed that the girl was suffering from bulimia not because of a body image problem, but from purely psychological stresS and loss. "[Psychological therapy] is the least supported of all the needs of HIV-positive families even though it's one of the greatest needs because there is such great loss, depression, and sadness, for the parents, for

the kids, for everybody. There is little to no financial support for it and there's not a whole lot of people who are interested in doing it," said Romano. "It's very devastating for the survivors. Entire groups of people and families are being wiped out." The effects of the disease on the family are often described as "an emotional holocaust."

Since there is still no cure for AIDS, the main focus of caretakers remains to provide as high a quality of life as possible for HIVpositive children, including shelter, warm clothing, food, and rides to the hospital.

Care providers find chat the first few years working in the field can be extremely stressful. "You hear unbearable stories that are unfortunately real stories," said Dr. Andiman. "You wish you could do everything and you can't do a lot. This disease is even more difficult in pediatrics, because the mindsec is chat normally children don't die. Generally, the doctors can make the kid better. The goal [here] is not to cu're the child or family but to improve their quality oflife and alleviate pain."

"The majority of the concerns that the parents express about their kids are no different from any other parent," said Murphy. "All the fears and the learnings and the hopes and the joys of having childrenour families have all of those. I had to believe, though, that there had to be something qualitatively different or uniquely srressful about this.

"These parents are struggling with possibly one or more children that have the same illness," added Murphy. "I think that if anything made me think, 'Yes, I want to do this,' the thing that really struck me about it was the unique kinds of supportive needs and struggles and the incredibly unique strengths that these families display because primarily what the majority of our families do is really work to live with this disease."

And as long as the AIDS epidemic continues, people like Murphy, Andiman, Simpson, and Romano will work to help li1J them.

Karm jacobson, a sophomor( in jonathan Edwards Co/kg(, is on th( stajfo.{fNJ.

Tm NEW JoURNAL

At Home with AIDS New Haven's homeless HI V-positive popu lation find s refuge in transitional housing through the Co nnect icut AIDS Res idence Program . cott gets into an argument with Jack at the house meeting.

Scott is mad at Jack for playing the TV too loud. "Well, I admit that I shouldn't have been doing that," Jack quickly responds. He isn't looking for trouble.

Part of the problem is that sound travels easily through the floors of the house. It's a well~built structure, but it's been abused, and it may have lost some of its original solidity. The house was renovated just a year ago, when the Connecticut AIDS Residence Program (CARP) decided to make it the site of its transitional housing program. .

Though everything was refurbished, the retained a bit of its past as a student apartment building. A rack of buzzers is mounted outside the front door: four different room bells, each with those old label strips that change with each new tenant. Scratched and faded apartment letters remain on the doors to each living room.

Scott and Jack sit in the 'A' room, a 20~foot square with a kitchen alcove and two rooms branching off of it. About half a dozen other residents and one of the house managers are at the meeting. Jack responds to Scott's concern. "I'm really sorry to have gotten you upset."

But Scott isn't satisfied with such a straightforward apology. He presses the issue, and Jack begins to feel a bit awkward. He apologizes again, and admits that he was really inconsiderate. He will consider Scott's needs more in the future. The discussion goes back and forth until the house leader feels the need to step in. She asks the others at the meeting what they think, and they seem to think the issue is pretty straightforward. Jack says he is sorry and says he won't do it again. It ought to be enough..

S

s this scene unfolds, Marty and I sit upstairs drinking coffee U1 the living room she shares with Jack and Ken. T he room s the same shape as the one downstairs, but the furniture is arranged differently. A couch and an armchair form the first corner of the room, with a coffee table between them. Narcotics Anonymous literature and Christian readers litter the table. The armchair faces a television, which glows with a Columbo rerun.

Marty has brewed a second pot of coffee so that I can try her special ingredient: cinnamon. It doesn't dis~olve, but forms a sort of cinnamon scum on the surface. I'm a little disappointed with the results.

Before the first cup of coffee, Marty felt obliged to inform me

fEBRUARY 10, 1995

that she had bleached the mugs. "You don't have to worry about anything. I make sure my things are properly cleaned," she assured me. Embarrassed and confused by her need to say this, I said nothing. Marty, interpreted my silence as ignorance rather than awkwardness. She took this opportunity to inform me that I was in a house wherein every resident has AIDS and has been homeless.

"Oh, I realize," I assured her. arty is a strong woman. That's obvious from looking at her, but the history she weaves makes it even clearer. A number of years ago, while in Florida with a friend, she considered a stint as a professional body builder. She began a hardcore regimen at the Powerhouse Gym and succeeded in her pursuit of muscle mass. But Marty quickly discovered that the weights were turning her into someone she was not. Getting dressed one day, she reached to push up her shoulder strap and realized that she could not touch her shoulder. Her bicep was so large, she could not move her forearm far enough forward.

She flexes for me. Her physique is powerful, but no longer inhibiting. She still lifts weights now, and tries to work out whenever possible, but muscles are not her first priority.

Staying clean takes most of Marty's time now. She and her family are very proud of her break from heroin, a sobriety she has maintained for a month and a half. Marty now substitutes methadone for heroin through a local program that she follows faithfully. Her doctor recently gave her a Percocet prescription for shingles. Marty feared that, for her, any prescription might become add ictive, and gave her prescription to the doctor at her methadone program. Marty didn't think they would take the prescription away, nor does she think she ,would have let them if

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they had tried. It was important for her to know that they trust her. Marty has taken the drug correctly thus far.

Marty did not decide casually to enter the house. She learned about the transitional housing program from another methadone program. An adviser at that organ ization mentioned a house in a residential part of the city where AIDS patients could live for up to two years.

Marty immediately met the first criterion for entrance to the CARP house: she was HIV-positive. But the second stipulation proved to be a problem.

The program required that applicants be homeless. Marty had neve.r been without a home. The need to "go homeless" test'ed Many'$ conception of self-respect, but the need for housing and support both as a patient and as a recovering user overcame her fears of shelter life. According to Marty, the hardest thing her mother ever had to do was drop her daughter off at the door of the YWCA. Marty had been living with her parents, and they found it difficult to imagine what she might have to endure.

Marty ended up spending two months at the five-woman YWCA shelter.

Marty is now 38 and has lost enough of the Florida muscle so that her body looks hard but not rippled. She tries to eat well, which presents difficulties in a house where most of the residents are concerned with only one overriding health problem.

She doesn't eat the greasy house dinners, instead cooking in her tiny kitchen alcove and eating a lot of cereal. "A lot of people figure, well, they've got the virus, why worry about that long term stuff, but that's not true," she says. "I think about ·my health a lot." en Jack comes into the room, Marty and I are discussing the ouse's new cook and his infatuation with grease. Jack leaves Scott at the door. They sound friendly in the hallway and obviously have reached some sort of compromise about the television.

Jack apologizes for being late as he sits on the couch and pulls Chinese take-out from

W:

a brown paper bag. The first thing he tells me about is his argument with Scott.

Jack is 50 years old but looks to be in his early forties. He tells his stories straight; as he describes it, "I don't throw no curves." Jack needs emotional support less often than most of his housemates.

The house is an important part of his life, but it is not his ideal locus of social interaction. "We talk and stuff and get along okay, but we don't hold hands or anything." When he goes for food or coffee with a friend it is more often with an acquaintance from one of his AA or NA groups.

As he eats, Jack explains that things for him are kind of hard. It's a bad time-Christmas and the holidays always get him down. His mother died a number of years' ago on Christmas Eve, and the holidays are the time he most needs . emotional support from his · housemates.

He is trying to put the past behind him, but is obviously finding it difficult.

Jack's story is about Marty. When Marty and I were alone she said that Jack had been looking for a relationship at one point, and that she had turned him down.

Marty was not prepared for intimacy; she thought it would make life at the house too complicated. Jack perceives the ir relationship differently. "Some people think me and Marty got something going on, but it's not like that. We're friends and we're here to support each other." While Many is in the other room, he explains that Marty needs him. "She's in a little bit worse shape than I am. You know, she's got the shingles and everything, but I'm doing okay. I want to help her deal with her . , wornes.

W:

en Ken walks into the room to make a telephone call, the others are very friendly to him.

All three are now together, and my presence is briefly ignored, as they make loud small talk about the day's events.

Ken is a gay man and a self-described romantic. He tells me his story in another part of the house. The door to the room is about ten feet away from Marty and Jack's

THE NEW jOURNAL

door. Ken has me bring my bike upstairs and into his room. We drink orange juice as we talk. It tastes like one of those Tropicana Twisters, the kind that the midwestern farmer informs us is "a li'l bit iffy." As it turns out, it's not a Twister, but concentrated orange juice. Ken explains that he likes to make it a little bit less diluted than the instructions stipulate. "It makes it wonh the effort."

In an attempt to spur conversation, I praise Ken's Christmas tree, which he has just put up next to his bed. The tree's single string of decorations does not even circle the tree once. He hasn't yet had time to trim it. It has failed to cheer him up.

Ken also finds the holidays to be a hard time. The Christmas tree triggers a loneliness which brings him to discuss his disea.se. His sorrows stem from standard

holiday solitude and regret that he has neither lover nor family with which to share this time. "I know I'll never have a daughter or a son," he tells me.

Ken describes his attempts for dealing with the disease as "day by day." I'm discouraged when I hear the phrase. I've heard the term used in every sports interview from little league to NBA. The term has become completely devoid of meaning for me and doesn't help my understanding of Kenny's condition.

Luckily, he clarifies his statement. "I call upon my pride," he says, putting his hand to his chest. "I know this is a dangerous thing, but it works well to help me with my situation."

Ken came to the house on August 11 from the veterans' hospital in West Haven. ''I'm a veteran," he explains in his most - - -- ~ melodramatic !have-suffered voice.

As he play-acts I recognize the VA hospital logo on the pillows he leans against.

"I see you took a couple of pillows when you left," I joke.

"It's funny you should mention that," he laughs. "I actually have a couple pairs of pajamas too , and ,_lliiiiiiliii-==:::W~ some surgeon pants."

"Those are great," I respond.

"Hospital clothes are very hip." We laugh.

As we finish the orange juice, Ken tells me about himself. Ken and his friend Jose love to go to the Yale lJ Rep and the Yale

Art Gallery. Above all else, Ken enjoys long walks on the beach in West Haven. H e tells me that the ocean is one of th e greatest influences in his life. At times, he tries to tap its power.

Ken does not come from the same background as Jack. "A lot of the people here have a street mentality. Not that they're stupid or anything. That's just not where I'm coming from." It's a statement which Ken seems to feel guilty for making.

Later descriptions of good hearts under rough edges seem to justify a nearaccusation which Ken feels he should not have made.

I

go back to the CARP house a few days after Christmas break. One of the house managers answers when I ring the doorbell. Ken, Marry, and Jack are all out. I sit in the downstairs living room and wait. My chair faces the hallway into the critical care room. I toured this room the first time I visited the house.

An architecture grad student had designed the care room for a class project.

The room was intended to provide maximum comfort for t hose who were bedridden and seriously ill. The ceiling is painted a deep blue. Lighting fixtures provide reflected light rather than the glare of a bulb. The space is about the same size as any of the living rooms. A window cut in the wall encourages people passing by in the hallway to say "hi" to patients. A closet door at the foot of the bed doubles as a mirror and a window. T he mirror reflects at such an angle that the patient in bed can see people walking or riding by on the street. It is an uplifting reaction to the confines of the standard hospital room.

Despite its beauty, Marry, Ken, and Jack have no desire to spend time there.

I wait about 20 minutes, but no one shows up. I ride my roommate's bike back home. li1J

ud G~sing, a sophomor~ in Mom production manag" ofTNJ.

Co/kg~.

is

Cot!V f"'-te ÂŁ..

¡Born Fru" by Marty. a CARP houu midmt.

FEBRUARY 10, 1995

15

Alvin Novic k's good news proves it's hard to stay

Positively Negative which was being alone, having to recreate a life that I didn't know rom behind his desk, piled high with papers, reports, and how to recreate, that I didn't want to recreate, that I didn't know letters, Dr. Alvin Novick tells his story. Sometimes his whether I could recreate." tone is bitter and confrontational, as when he talks about Then, in the fall of 1993, Novick met someone who rekindled the inadequate government response to the epidemic that his ab ility to feel , to connect emotionally. With hopes of has shaped his life since 1982. At other points his speech becomes committing to this new relationship, he felt the need to end the almost unintelligible, as when he talks softly about how he misses uncertainty in his life. the 70 friends this epidemic has taken from him. But then his that the test would return positive, thus Novick expected eyes crinkle as he smiles unexpectedly, his voice resonant with the of loneliness and guilt, but instead the resolving his feelings newfound irony of his life. For now he is left behind, suprising negative results left a void in his life. He expresses a unexpectedly alive, to make new friends among the survivors. state of ambivalence about his condition in his description of his Despite his active participation in the sexual revolution of the initial reaction to the test results. "I laughed and I cried . I 1970s, Dr. Alvin Novick-Yale professor, activist, gay manlaughed for obvious reasons; I had assumed I had been doomed tested negative for HIV in August of 1994. The test results came since 1981 and I'm not doomed," he says. "The bad news is that I as a surprise; he had assumed the opposite. His partner, whom he didn't know what to do because the test took away my crutch. I refers to only as Bill, died in the summer of 1992 f rom was using my uncertain sero-status as a crutch because it complications resulting from AIDS. Novick did not get tested increased my uncertainty about who I was." Novick can no longer while Bill was ill for fear of diverting attention and energy away group himself with those who accept AIDS by dying. But at age &om his partner's situation. During the months following Bill's 69, it is not easy for him to create a new life based on a revised death, Novick believed without at a doubt that he too was dying. self-definition, a life that leaves his problems unresolved. He must He had many of the symptoms of advanced HIV including now try to come to terms with mouth sores and esophageal "I'm trying to think about ways to what it means to remain behind, pain, but they disappeared by as much a victim of the AIDS Christmas, leaving him convinced those that are still epidemic as are those it kills. physically healthy and extremely Novick is not alone in facing healthy that it's worth it to put on a confused. uncertainty about the future and Now Novick believes that he condom because it's worth it to the search for self-defin ition. used his uncertainry about HIV Gay men around the country as a crutch to keep him from continue to live." echo his ambivalent reaction to emotionally reengaging with life. his negative HIV status.

As As he puts it , he did not AIDS and homosexual identity become increasingly intertwined, reoccupy the space left by Bill's death; there was no point in many within the gay community find that their lives center making an effort if he was going to die. "Not occupying life around the disease, whether HIV positive or not. All must deal meant not doing all of those things that one does for comfort and with the unending grief for the 180,000 who have died of the relaxation. I had no serious interaction with people, no surface since 1981. A Los Angelu Timu article in July 1993 disease emotion, irritabiliry. My senses weren't alert in the usual way," as "the walking wounded" and included described the uninfected Novick says. among their symptoms bouts of hypochondria, clinical Novick made little attempt to deal with the aftershocks of depressio n , anxiety, insomnia, patterns of self-destructive trauma, and assumed that death would resolve his problems. Bill behavior, and anhedonia, the inability to derive a sense of was not the first or last person that Novick saw killed by AIDS. pleasure from life.

Psychologists and AIDS activists alike identify As the disease decimated his support system and his community, one aspect of the emotional response of the uninfected as Novick accepted AIDS as a solution to his loneliness and "survivor guilt": why do others die while they remain healthy depression. "Why would you welcome being ill? It allies you with when both groups have engaged in the same the people whose lives are fused with yours,â&#x20AC;˘ he behavior? explains. "It seemed to me it had elements of resolving what I didn't want to face at the time,

F

THE NEW jOURNAL

D

espite continuous and excessive psychological trauma, the uninfected often believe that they don't have a right to their feelings or to the support necessary to help resolve them while others are dying. Meanwhile , many in the gay community not only exclude the walking wounded because of their negative status, but also dismiss their problems as insignificant and a drain on the response to the AIDS epidemic.

But the same HIV-negative population, people like Alvin Novick, remain at the center of the community response to AIDS-the care for the dying, the political activism , and the energy to continue an ongoing fight for the survival of their communiry.

Novick now belongs to a group that has not been addressed by the communiry lesponse to AIDS. As his energy to act returns with his emotional reawakening, Novick cannot ignore the needs of those still HIV-negative. His attempt to articulate a response to a void is, not for the first time, the defining experience of his life.

T

he encroachment of AIDS on Novick's personal life brought him into the activist realm, and once there, his drive pushed him to fill the voids he encountered. His first education about AIDS came from the material Bill brought home to study. Bill focused on health issues within the gay communiry

fEBRUARY IO,

1995

as a graduate student at the Yale School of Epidemiology and Public Health. The research exposed Novick to the scientific side of rhe disease and to concerns about the effect of the disease on the gay community. When their best friend became ill in the spring of 1982, Novick understood for the first time how an epidemic within the gay community would affect his own life.

"There was that personal element of AIDS now, around our best friend, and of course that had ramifications beyond that because he represented to us gay men in general," Novick recalls. Facing the intersection of his life and the disease, Novick agreed to attend a conference held by the National Gay Health Education Foundation in the summer of 1982 with Bill. He sees the conference as a transition point in his life. "For the first time I met three hundred openly gay health care providers," Novick remembers. "There were several inspiring, unbelievable people who made me believe that it was my duty to serve my communiry."

Novick took up his dury to serve by filling that need. Before he could begin contributing fully, however, there were certain things he needed to do. First, Novick returned to New Haven and came out to his professional colleagues for the first time; he saw his call as a defining incident which required honesry in all areas of his life. He accepted fully, for the first time, the totaliry of his gay identiry, and shared it with everyone-including the president of Yale, A. Bartlett Giamatti (SY '60). Novick connected himself to the epidemic by immersing himself in the rapidly developing scientific and sociological research on AIDS. In 1983, Dr. James Curren, head of AIDS research at the Centers for Disease Control, assigned Novick to conduct a behavioral epidemiological study of gay men with Kaposi's sarcoma, an early-stage opportunistic infection, at Memorial Sloane Kettering Hospital in New York Ciry. Through his work on the project, Novick met members and leaders of groups like the Gay Men's Health Crisis and the New York AIDS Network, groups which were defining the communiry response to AIDS at that time.

Novick then returned to New Haven and, with Bill, became the center of a group of gay men in Connecticut with an interest in helping those with AIDS. This network sprang into action during the summer of 1983 to create AIDS Project New Haven, the first formal response to the epidemic in the city. Novick shouldered much of the administrative work necessary to the survival of the organization, taking on leadership positions including steering committee member, co-chair, and principal educational speaker.

In the early years of the AIDS epidemic, Novick played a crucial role in the activist movement by disseminating 17

information. Few were willing to speak openly about AIDS and sex, but he saw education as the key to understanding and preventing the spread of the disease. Since he had co~e out, Novick felt comfortable speaking about homosexual intercourse and STDs, subjects that others avoided.

Bill became an educational public speaker through his job as AI DS Coordinator at the Connecticut State Health Department.

Novick estimates that until 1986, the two of them provided ninety percent of educational programming about AIDS in the state of Connecticut. As the principal speaker for AIDS Project New Haven, Novick spoke up to nine times a week on what he calls "AIDS 101" and safer sex. He addressed what he saw as a void in the framework of Yale's liberal arcs education by introducing two new classes, "Biology and Human Affairs: AI DS and Society" and "Bioethics ," into the curriculum.

Although the courses created controversy, he views them as an integral part of education about the interaction between ethics, science, and public policy.

Novick soon realized that he could use his visibility to represent those groups affected by the epidemic but lacking advocates in the public sphere. ¡ Public health officials recognize that in New Haven, AIDS is most prevalent among minority IV drug users and their families, and among female prostitutes. Since the gay community had organized most of the response to AIDS up to this point, those outside it lacked care and advocacy services responsive to their specific needs. In the spring of 1986, Novick went to Mayor Biagio DiLieto as an advocate for these groups. "Here we had a major epidemic, and it was among people who were not in a position to mount their own services; they were the poor and the alienated and the ostracized, " he explains. Mayor DiLieto subsequently appointed a task force on AIDS, with Novick as chairanother responsibility no one else wanted.

Novick began to speak regularly to those in positions of authority on behalf of minorities, prostitutes, IV drug users, women, and children with HIV and AIDS. 18

He familiarized himself with their needs and their personal circumstances through interaction and research. This made him a target for questions about the right of a white male to speak for marginalized groups. "I speak for these groups because they are not out there speaking for themselves," he explains vehemently. "And I fill the vacuum left by their silent voices because I am out there in a very public way. That allows me to

"I used to t hink of [the uninfected] as whining and .c omplaining, what we used to call'the worried well.' But now I recognize that they, that we, are burdened in some ways more than those who are ill." speak for people who are not out in a variety of ways." Without him, he wonders, would these groups be heard?

On a national level, Novick continues to fill such vacuums. He has served in leadership positions for major national organizations concerned with AIDS, includinl the American Association of Physicians for Human Rights, the National AIDS Network and several government panels on infectious disease transmission and treatment. He sees himself as a bridge between groups who often disagree as to how best to serve the interests of those infected with AIDSmedical scientists, activists , gay men, academia, government officials, and all of the others for whom be tries to speak while remaining somehow above the fray.

Novick often feels discouraged, especially when he looks at the big picture.

"I think I thrive on the burdens," he says, in defense of his ambitious goal s. He qualifies his statement, however, adding softly, "But you don't in the end-nobody thrives-because you' ll all pay. We'll all pay in proportion to how hard we worked and the pay will be negative." ovick assumed for twelve years that the net payment for his activist work would be death, that he had only a limited time in which to devote all of his energy to his cause. But instead, he's paying with loneliness, guilt, and the daunting prospect of making the remaining years of his life meaningful.

Like so many others, he lives under a pile of corpses he cannot bury emotionally. In the last year, Alvin Novick has become part of the growing articulation of a response to this problem, a response that will try to fill the void of support and recognition of the HIV-negative. ¡ Mter devoting twelve years of his life to AIDS victims, Novick finds he can no longer directly identify himself with them.

Before the test, he behaved as if he had HIV because he believed it, and now his negative status stands as a wall between him and those with whom he previously identified, living and dead. He speaks with difficulty, softly, holding back his emotions. "Since 1982, I felt as if there was a continuum between me and the epidemic and all those who are ill and dying. I knew them and their feelings.

Now they're not me, so I have to find a new place for myself. You cannot describe being uninfected as being in a continuum with those who are." He wipes his eyes while he speaks, and stares out the window of his cluttered office. This reality upsets Novick's view of himself aftd in some ways places him outside of his own community.

AIDS has become the great defining cause of the gay community but mainly as it affects the infected. Energy, resources, and attention go to helping those who sick and dying. Meanwhile, the impact on the uninfected-the accumulated psychological distress, the increasing isolation, and the constant fear-goes unacknow-

N

THE NEw JouRNAL

WOZNIAK ledged and consequently untreated. Dr. Miles Cohen, a Toronto psychiatrist, refers to the psychological toll on the physically healthy as a "silent epidemic." There remains a need for the institutional empowerment of HIV-negative men that will provide support, recognition of their emotional distress, and a way of assuaging their guilt over their health. Novick is beginning to address this need.

Despite the glaring lack of awareness about the problems of the uninfected, it is not easy to mobilize help for those who remain healthy. The issue threatens to fragment the gay community; one gay newspaper in San Francisco heralded the formation of an HIV-negative support group as "viral apartheid." The resources of the community response to AIDS are already stretched thin. But as Novick recognizes, HIV-negative men need to feel empowered and legitimized if they are to continue to care for the dying. If they break down emotionally or become alienated, they cannot continue to fight the epidemic. More importantly, their distress may contribute to its spread.

Helping the healthy stay negative drives Novick's recent work, which focuses on increased prevention education. Since the development of the test for HIV, he explains, "We've neglected the development of prevention and care services for those who are uninfected. We haven't focused on keeping the uninfected alive and supported; mentally safe." Those who are HIV-negative must maintain an awareness of the positive things in their lives while constantly coming into contact with the reality of the epidemic. "I feel more concern now for the uninfected," he says. "I used to think of them as whining and complaining, what we used to call 'the worried well.' But now I recognize that they, that we, are burdened-in some ways more burdened than those who are ill. I'm trying to think about ways to convince those who are still healthy that it's worth it to put on a condom because it's worth it to continue to live."

Novick would like to see concern for the HIV-negative grow. He encourages the

FEBRUARY 10, 1995

formation of support groups for the uninfected although he does not belong to one. He sees the problems of the HIVnegative as a valid topic for research. In the summer of 1993, Novick began to pay attention to the emotional background behind the second wave of outbreaks of HIV infection among younger gay men in San Francisco. These young men felt the need to identify fully with the gay community and at the same time could not escape from the emotional aspects of its deterioration from disease. They practiced unsafe sex, preferring to receive the attention and care that came with death than to live sad, lonely lives. "The gay community is at· risk of losing its future as it has already lost its past," says Novick. "At least you can reconstruct the past, but for these young people to feel that infection and death are inevitable leaves a sad picture of the future."

Novick set up a planning committee as part of the American Association of Physicians for Human Rights to research the emotional stress of being HIV-negative and how it alters the effectiveness of campaigns for safer sex. "It's positive to stay negative" has emerged as a slogan among those who recognize the psychological state of the HIV-negative.

Novick has taken on the task of trying to fill the void of response to the needs of the HIV-negative. He must try to convince others that his newest crusade is not one of division but of provision for the future.

"As a community, we need to protect those who are ill and dying, but we need to make sure that they don't occupy all of our space, that we continue to take care of those who are alive," he explains. His own identity crisis led Novick to validate the problems of the HIV-negative. From there he followed his usual path to action, to insure that those who remain behind can stay strong enough to fight, to care, to live on, and to form a community. In his largest crusade to date, Alvin Novick will try to ensure that the HIV-negative gay community does not self-destruct.

II1J M~lissa Mosko[, a unior in Timothy Dwight, is Reuarch Editor ojTNJ.

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When Doctors Can't Cure Th e vi ru s still elud es resea rchers, but cl in ical medicine pushes AIDS treatm ent eve r f urt h er. n many ways, t he living room of the Hospice Cottage in to second-guess the virus that has outwitted the medical world for almost fifteen years.

Branford, Connecticut, looks like any other living room. Two With the second tactic-p reventing and t reating the vinyl couches and a recliner line three walls, all directed toward a 19" color television. Open tape cases on top of an complications caused by AIDS-the pharmaceutical juggling act becomes even more complex. Drugs like Bactrim, Elavil, Seldane, old stereo unit indicate a preference for Jefferson Starship.

Xanax, Dapsone, Foscarnet, and Thorazine-to name but a fewPoinsettia plants, placed along two window sills, give life to the target conditions ranging from pneumonia to psychosis, from room.

In many ways, it does not. On a wall behind one of the · · herpes to blindness. On one Wednesday night in January, Dr. couches, posters explain basic procedures for "Cardiopulmonary Selwyn made his monthly: pilgrimage to the Hospice Cottage.

Resuscitation" and "First Aid for Choking." Wheelchairs and IV After meeting with each of the three patients, Dr. Selwyn arranged a treatment schedule with the help of Fredi Vinci, a registered stands crowd the floor. A series of coughs punctuates every nurse. Together they faced the challenges of long-term intravenous utterance. O ne night last month, three Cottage residents gathered morphine adminismition and the muscle stiffness caused by the in the living room to watch the local news. During a commercial antipsychotic Haldol, not to mention the added difficulty of break, two of them engaged in a brief conversation, a conversation about neither the day's sports scores nor the weather forecast. ''Are procuring medication for the recent immigrant living in the Cottage at the time. you on Xylenex?" one asked. Apparently misunderstanding, the other responded, "I don't know why I was on Cycloserine. I haven't At the Atkins Firm, the hospital-based component of Yale's AIDS Program, Dr. Selwyn led a medical team through a similar had AZT in six months." procedure. They travelled from room to room, speaking to every These days, an AIDS patient can mark the passing of days, hours, and minutes with the taking of medication. The patient's patient and listening to the ones who ·could still talk. In between chart gives a lengthy recipe for the meal of survival. Many feature each visit, they reviewed vital statistics and discussed possible more than a dozen different drugs, taken orally, as suppositories, or treatment. After going over white cell and electrolyte counts, the intravenously, once, twice, or three times a day. The chef, in all group entered the room of a disgruntled but exceptionally lively likelihood a physician specializing in oncology or infectious patient, sitting in bed eating a breakfast of scrambled eggs, diseases, must continually prescribe and adjust in an effort to pancakes, and corn flakes. The patient looked up and promptly defeat the virus responsible for AIDS and treat related infections, demanded to know why he was stiJI in the hospital. In his calm, all while keeping side effects at a minimum. Dr. Peter Selwyn, a low voice, Dr. Selwyn answered, "We know you have an infection, professor at the Yale School of Medicine, and Associate Director of but we don't know what it is." Dr. Selwyn's confession typifies a its AIDS Program, performs these tasks on monthly visits to the frustrated medical community. In their struggle with AIDS, health Hospice Cottage, a home health care setting for AIDS patients. care workers face what has become, in many respects, the most The Hospice-Yale connection exemplifies the fusion of modern elusive disease in all of human history. medicine and social science in an increasingly successful effort to make life more bearable for those with an unbearable disease.

IDS itself, clinically defined as a specific degree of immune A doctor relies on two basic strategies to keep an AIDS patient ystem deficiency, does not kill. By destroying the body's alive. First, the doctor tackles the disease itself. Reverse roteccion against disease, however, it paves a clear way for transcriptase inhibitors limit the growth and replication of the illness, suffering, and, ultimately, death. Once the immune system Human Immunodeficiency Virus (HIV), the instigating agent can no longer provide an effective defense, a horde of infections linked to AIDS. AZT usually does the job, but over time it loses its attack every organ system in the body. "It's a very evil disease," effectiveness. Recently, other drugs such as ddi, explained D r. Gerald Friedland, Director of the ddC, and the Yale-developed d4T have joined in AIDS Program at Yale. "It's a painful, relentless the fight. Doctors alternate between them, hoping disease of repeated onslaughts. There's something

I

by David Gerber

20

THE NEW JouRNAL

almost diabolical about the way it attacks people." In the medical journal Daedalus, Dr. Friedland elaborated, "Gaunt, slow i n movement, some breathless, others bedridden , AID S patients increasingly populate the hospital landscape. I find myself looking at healthy young men and women who are well and functioning even after the initial AIDS diagnosis, and like a witness to an all too familiar drama, I see them in my mind's eye months or several years later wasted and suffering, shadows of their present selves."

The immune system decline that leads to AIDS begins several years beforehand. After someone becomes infected with HIV, either through unprotected sex or IV drug use, that person enters an asymptomatic period lasting several years. D uring this time, the individual cominues to live normally while the virus reproduces itself millions of times over. As Dr. Renee Frankel, a fe llow in infectious diseases at Yale, explained, "It's the kind of disease where you can see the train coming and it's going to hit you but it's all the way in California and you live in New York." For almost that entire journey, HIV has little visible effect on its host. But as the train approaches its destination, what began as H IV infection becomes full-blown AIDS. Normally, a person has anywhere from 500 to 1,500 C D 4 cells per cubic millimeter of blood. These cells, also known as T lymphocytes, form the basis of the body's im mu ne system , attacking any foreign body that enters the organism. O nce HIV has spread throughout the body, it begins systematically destroying the CD 4 cells. A falling CD 4 count records the time an infected individual has left to live. Doctors look at t h is value before anything else, and many patients know theirs by heart. According to guidelines set by the Centers for Disease Control, someone with a CD 4 count below 200 has AIDS. As soon as the C D 4 count starts to drop, opportunistic infections (Ols) set in, infections that rarely affect individuals with intact immune systems. Many people first notice thrush, a spotty white fungus on the tongue. After that, the order, combination, and timing of O ls can vary tremendously.

Depending on their infections at any given time, AIDS patients may suffer from severe diarrhea, persistent cough, ubiquitous sores, constant fatigue, weight loss, fever, blurry eyesight, abdominal pain, irregular __,-menstrual bleeding, and dozens of other ~ ... conditions.

"Someone with AIDS usually deals with ~ several infections simultaneously. Tuberculosis, a ' disease brought back from near extinction by the AIDS epidemic, and Mycobacterium avium intrace/iulare (MAl) can infect the lungs, brain, or spine. Cancer strikes AIDS patients in the fEBRUARY 10, 1995

forms of lymphoma, which targets the brain and lymph nodes, and the formerly rare Kaposi's sarcoma (KS), which appears as skin lesions. An_othe r AI DS trademark, Pneumocystis cannu pneumonia (PCP) infiltrates the lungs and causes respiratory difficulty. Cytomegalovirus (CMV) resides harmlessly in many people, but in AIDS patients it causes blindness. Toxoplasmosis, a brain infection, causes paralysis, confusion, and loss of balance.

Because HIV shows almost no symptoms, many people learn of their condition only near the end, when AIDS-related infections move in for the kill. Some people aware of their HIV-positive status do their best to ignore it while they remain healthy, never seeking medical attention. Last year a man came to Yale NewHaven Hospital with PCP. When Dr. Frankel started treating him, she found the result of almost a decade of neglected HIV infection: a C D4 count of 10. During the eight years between a positive test for HIV and the onset of PCP, his first opportunistic infection, the man had remained in good condition, working two jobs seven days a week, living in an apartment with his girlfriend, and maintaining an active social life. Once in the hospital, he developed MAl, which caused fevers and liver problems. The patient had previously had hepatitis B, C, and D, and medications further irritated his liver. Within ten days, it failed. Medical technology helped the man live eight months after his initial hospital admission. Three days after his family went home to Puerto Rico following a final visit, he died.

C urrently, the majority of AIDS cases run a significantly longer course. Some of the most common conditions associated with the disease, such as AIDS was ting syndro m e and dementia, eat away at the patient over a period of years.

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the unintended loss of at least I 0 percent of normal body weight, leaves the majority of AIDS patients in their final months looking like concentration camp prisoners.

So prevalent is the condition, and so devastating its effects, that Africans call AIDS "slim." To this day, effective treatment eludes physicians, who try their best to stimulate appetite with Marino!, a marijuana derivative.. used for a similar condition in cancer patients.

Like wasting syndrome, AIDS-related dementia mysteriously eats away at the patient, but it targets the mind. This condition, some physicians have postulated, may affect every AIDS patient in one form or another. Families, friends, nurses, and doctors watch as those affiicted steadily lose their awareness of reality. A former manager of a large company in Connecticut who eventuaJiy came to the Ho~pice Cottage showed no signs of infec_tion umil his lover noticed a number of errors in his checking account. Within a month he was hospitalized; three months later he had no idea who he was. With no short-term memory, he talked nonsensically every day about going to work.

Yale's Dr. Selwyn put the patient on AZT, which restored normal walking and talking abilities within six weeks. Friends and family felt increasing excitement with each sign of improvement. The patient even went home witli his parents for a weekend. But then, as the drug always does, AZT lost its effectiveness. The cancerous lesions of KS appeared on the patient's legs, and he once again displayed compulsive behavior. He constantly asked for a cigarette. Volunteers and nurses obliged him, but moments later, on the way back from his outdoor smoke, he inquired once more, "Can I have a cigarette?"

"It was so sad to watch this guy groping for answers and trying to maintain his personality and maintain h is independence and just maintain conversations," commented Vinci, the Hospice Cottage nurse. "It's heartbreaking,

Tm NEW JouRNAL

I

absolutely heartbreaking." Every day Hospice workers, along with the patient's family and his lover, tried desperately to reorient him. On visits to his room, they would ask, "What did you do today?"

Every time he would respond, "Well, I went to work." They would counter, "No, you didn't; look around, where arc you?"

His answer: "Oh, I'm not at work. " Every day they would remind him of the time, the date, the place, the situation. "We were praying he had an organism, some kind of bacteria, because at least then it would be treatable," said Vinci. "We sent him to Yale for CAT scans and MRis. We were hoping there was somcthing-toxo, anythingthat would be treatable with IV. Nothing.

Everything came back negative. It's all dementia."

N

ot long ago, Vinci would not even have expressed such a hope. Only within the past five years has the medical response to AIDS become largely technical. All throughout the 1980s, doctors watched as dozens of unknown and unrrcatable infections ravaged their patients. Physicians played a part they had nor since the days before antibiotics: that of the family doctor who, much of the time, could only hold the hands of those suffering.

When the Centers for Disease Control first described a new and devastating disease in young homosexual men in June 1981, it sent a wave of terror through the medical communiry. "It was different from anything else I had ever seen," recalled Or. Friedland, "and it was bad." Later that summer, Or. Friedland noticed a similar condition in New York Ciry, but this time in IV drug users. As all epidemics do, AIDS initially called attention to itself in those ncar the end of its infection, those about to die. While dozens, and then hundreds, s tarted dying, the medical community watched in disbelief. •For a while we had the delusion that we had eradicated infectiow diseases," recaHed Or. Friedland, "so it's been very humbling."

AIDS, then called gay- related

F£BRUARY 10,

1995

immunodeficiency sy ndro me, stood alone in the pathological world for a number of reasons. Its related infections knew no limits, requiring the attention of every medical subspecialty. In addition, by targeting those in their twenties, thirties, and forties, it caused what Dr. Friedland has dubbed an inversion of the life cycle. Previous- ly, widespread mortal-ity had struck that population only during wartime. For young doctors and nurses, it meant escor-ting their conte mporaries-not just the very young or the very old-to a gruesome end.

In 1983, researchers discovered HIV, the virus almost universally consid e red responsible for rhe modern-day plague. For the next few years, fear of transmission loomed large in the minds of those caring for AIDS patients. Many hea lth ca re workers felt the touch of death with each accidental needle prick. AZT appeared in 1987, and with it came a period of hope.

AIDS patients enjoyed inc reased survival, fewer opportunisti c infec tion s, and consequently a better quality of life. Yet within two years both providers a nd recipitn ts of medical care realized tha t AZT could not hold HIV at bay forever. A feeling of despair replaced the short-lived excitement over the drug. Since th e n , hospitals have focused on improving the response to AIDS-related infections.

When the epidemic first appeared, the prognos is for AIDS patie n ts looked despairingly bleak. After a few months and one or two opportunistic infections, most were dead. As recently as the early 1990s, PCP struc k over two- thi rds o f AI DS patients, 20 percent of them dying during its first attack. Today, drug combination therapy can prevent and treat not o nly PCP, bur TB , roxo , cryprococcal meningitis, and doze ns of o th e r

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comp ns as Patients diagnosed with AIDS live years , not months, a nd mostly at home, not in the hospital. For those individuals who learn of their HIV early on a n d receive prompt medical attention, p roph y laxi s-a series of preventive meas ures-provi d es vaccinations for PCP and the flu. Doctors check for TB and hepatitis and prescribe a number of drugs to combat them. Other members of the health care team look into fa m ily a n d other suppo r t syste ms, including proper insurance.

Cons id ering t he incidence of the e pidemic in New H aven , Yale and irs affiliated hospitals joined the at tack on AIDS relatively late. Unril recently, YaleNew Haven Hospital offered only a oncea-week clinic, staffed on a volunteer basis by a handful of university physicians. After opening t h e Nathan Smith C lini c fo r outpatient consultations in I 989, Yale set about creating a compreh e nsive A I DS program in I 991. Doctors Friedland and Selwyn came from New York to direct the effort.

Over the past four years, Yale's AIDS Program has grown considerably. So has t h e epidemic. Clinics re main ove rsubscribed. and hospital wards have no vacancies. Last year, Nathan Sm ith physicians cared for almost I ,000 adults with H IV /AIDS. The inpatient Atkins Firm ad m i t ted over 900. The AI DS 23

Program also runs a separate cenrer for pediarric AIDS, as well as rhe HIY in Prisons Program. Ir interfaces directly with rhe surrounding city through the Mayor's Task Force on AIDS as well as through a health care van that follows New Haven's needle exchange vehicle twice a week.

In the hospital, AIDS patienrs fill an entire wing of rhe ninth floor, so me spilling over into other wards. These are rhe patients who, for one reason or another, require close monitoring. Some will return ro their families in a few days.

Others will go back to jail. Many will not leave rhe hospital alive. Friday mornings, the AIDS team gathers at nursing station 9-5 and begins individual room visits, a process known as megarounds. Unlike most medical reams, usually a few nurses and physicians, the mammoth AI DS team often includes over a dozen people. Three weeks ago, Dr. Selwyn, attending physician for the month, led a crowd of four interns, two residents, a clinical nurse specialist, other nurses, an infectious diseases fellow, a rester, a nutrition ist, a counselo r, and a social worker. "It's a way of bringing a whole interdisciplinary approach to patienr care," explained Dr. Rick Altice, a physician in the AIDS Program and Cochief of the Atkins Firm. "It's importanr to recognize all of the disease's implications, nor just whether the person gets this dose of incravenous medication or that dose. It's really about how their psychosocial development is going, how their substance abuse treatment is going along, what are the sorts of entitlements and resources the person needs. You can't plan rational rreatment without the concept of the whole patient."

In the late 80s and early 90s, around the rime AZT's faults appeared , rhe medical community realized that AIDS meant much more than a low T cell count.

The disease primarily involved gay men and IV drug users, the latter being primarily poor people of color. "Who could be more marginalized in this society?" Dr. Friedland wondered at the rime. In cities like New Haven, where IV drug use accounrs for rhe majority of HIV infections, AIDS patients co me from populations that chronically slip through the cracks in the health ca re system.

Physicians and counselors worked through methadone programs and other substance abuse outlets to reach AIDS patients who, because rhey lacked either money or inclination, rarely sought health care. T hey soon discovered rhar t reating AI DS patients often meant addressing an addiction rhar m ight kill befo re AI DS complications did.

They also d iscovered, paradoxically, rhar news of H IV infection can inspire dramatic lifestyle improvements that can make up for rhe plummeting CD4 count.

One woman, incarcerated fo r drug involvement, rested positive for HIV. When her boyfriend died from AIDS comp lications, she began reading extensively about rhe disease and offering support to fellow inmates. After quitting

_Nowadays, patients diagnosed with AIDS live years, not months, and mostly at home, not in the hospital. drugs and moving ro a halfway house, she came to Nathan Smith for a follow-up with Dr. Frankel, who had been seeing her at rhe women's priso n in Nian t ic, Connecticut. At this first visit, the woman showed Dr. Frankel what she feared was the onset of AIDS: a rash on her hands.

After examining the patient, Dr. Frankel asked her if she had been doing housework. "Why, yes. I've been washing dishes," the woman replied, a smile growing on her face. ''I'm living life for the first rime."

Dr. Frankel's experience stands as one of many in which AIDS patient care implies more than medical treatment. "The idea is ro care, not just cure," remarked Dr. Friedland. "Our goal is to provide longer life and enhanced quality of life." Doctors and patients alike know that, even with vastly improved treatment tech niques, HIV/AIDS runs its course in a matter of years. Helping the patient make the most of that time has assumed primacy in many health care workers' minds, whether that

means minimizing pain, being a friend , or looking out for a patient's basic rights.

On the second leg of megarounds three weeks ago, the thirteen-person AIDS team entered the ninth-floor room of a patient slated to return ro prison in three days.

The man lay on his side looking through the window at a mist-covered Harkness Tower in the distance. Like many other patients seen that morning, he had tattoos, on his arms, chest, and back. Like some other patients seen that morning, he passed his days under rhe ware~ of an officer from rhe Connecticut Department of Corrections, who sat silently in the corner and read a local tabloid. Bur, like no other patient seen rhar morning, the man had a set of hand-cuffs around his ankles, tying him ro rhe bed. Apparently rhe patient, who had a history of refusing medication, had agitated his corrections officer the previous afternoon by walking into the hallv.:ay unattended. As the small crowd gathered around his bed, the man, in his mid-fifties, rolled over and sat up. "I don't want to be tied down like a dog," he yelled. "This is policy? You cut a man open, give him medication, then send him to bed with shackles? What is this?" For more than ten seconds no one spoke, a syndicated "Murder, She Wrote" episode the only sound in rhe room. Then Dr. Selwyn stepped forward from behind a cluster of white-coated interns. "We agree with you, and we'll see what we can do."

Out in the hallway, Dr. Selwyn asked a social worker to contact the necessary authorities and reverse the decision. Less than five minutes later, the co rrections officer unbound the patient. n spite of rhe improbability of contracting HIV, a number of health care workers still avoid infected patients, particularly those they consider beyond the reach of effective rrearment.

The more invasive the procedure, the greater the risk and the greater the fear. It took Dr. Frankel repeated efforts to convince a Yale neurosurgeon to do a brain biopsy on one of her patients. "Why should I do a risky procedure on someone who has such a short lifespan anyway?" he. asked her. The surgeon had read the patient's chart, and he had reasonably

I

THE NEW jOURNAL

interpreted a CD4 count of 60 as evidence of approaching death. But once Dr. Frankel introduced the surgeon to the patient-a hearty and seemingly healthy father of two small girls-the surgeon immediately agreed to the procedure.

Many private practice physicians tend to avoid AIDS patients for f ina n cial reasons. Little monetary reimbursement awaits them because most AIDS patients, especially IV drug users, start out extremely poor, and those who do not become so as the cost of medical care drains their personal funds . This funnels the vast majority of AIDS patients to university-affiliated, inner-city hospitals, like Yale-New Haven.

There, young doctors and nurses work around the clock, fighting in the trenches to prolong and improve life. They fight to help suffering individuals , to slow the phenomenal growth of a world-wide epidemic, and to goad t he rest of the m ~dical profession to action. At som e point, though, physician, family, and those patients still cognizant recognize defeat.

No amount of treatment can replace a vanished immune system, and AIDS patients fall prey to the intensity and sheer number of infections that move in as their CD4 counts bottom out. "What I can do is help that person make it through the transition to their death in a way with as little pain as possible, where the family gets support, and the patient holds onto some sense of pride and dignity, " said Dr. Frankel.

Currently, medicine has setded in for the long haul. "AIDS is now with us for th e duration of human history," Dr. Friedland proclaimed . Even if a cure eventually appears in the laboratory, getting it to patients will present a whole new challenge. AZT alone costs $3,000 a year. Researchers now look for a vaccine as the next likely evolution in the treatment of HIV. Clinicians, meanwhile, continue to enlarge and modify the organized response to the present reality: infecctons that rack and eventually destroy the bodies of their patients. li1J David Gerbn; a smior in TrumbuU Co/kg~. is managing ~ditor ojTNJ.

FEBRUARY 10, 1995

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Writing the Virus Activism finds its means through many avenues; the humanities answer the epidemic with studies in the representations of AIDS through langu age. h~ audimu filt~rs into th~ Cabar~t in th~ late ~vming on D~cmtb~r I, 1994. N~rvous after wulu ofp~Yparation, th~

AIDS art movement. A social worker, Ranson held no great literary aspirations. Her play details the experiences and emotions cast r~adi~s itselffor th~ p~rfonnanc~. But this is no typical surrounding the death of her friend Warren. With its far from high-brow origins, the play bespeaks a story of community ritual p~rformanct, no typical play b~ing put up by Proftssor much more than it evokes lofty "high art." "We weren't infatuated David Romdn's "Literatu" ofAIDS" smtinar students. Tm y~ars aft" with the play at first," says Amy Gallo (PC '96), cast as Ranson. th~ play's opening at a small th~ater in Altanta, a n~ audimu-at "We dreaded doing it because we thought it was the sappiest play."

Yal~-anxiously awaits this n~w rendition of R~buca Ranson's Gallo's apprehensions dissipated once the lights went down and Warren, on~ of th~ ~arlim "AIDS plays" in th~ cou;,try. Giving th~ . she entered the world of 'Warrm. She describes the potency of the production a slightly postmotkrn slant, th~ playwright hm~lf sits in experience: "It's not so much about high culture or great literature, th~ crowd, whik th~ stutknt playing Ranson agonizes ov~r how shl/l but about ritualization and localization." r~spond to an inurpr~tation ofhm~if Romdn stands up to introduu Despite its marginalized status, the AIDS artistic and activist th~ play. Th~ hous~ lights go Mwn ... arena itself sometimes fails to acknowledge some of the compelling community-based artistic endeavors of the early '80s. Roman he tenth anniversary reading of ~rrm paid homage to the chose ~rrm foe his class to perform as a symbolic gesture towards early AIDS play as well as to the little-known writer herselÂŁ rewriting Ranson into a history that has excluded her from the Roman, visiting professor of Women's Studies, aimed for his cultural canon of AIDS art. "She's not in the cultural history students to rebooks.

Most people situate the origins of AIDS theater in 1985 enact a moment in Th~ Normal H~art and Bill Hoffman's As Is," with Larry Kramer's the brief but rich says Roman. The introduction of AIDS plays since the dawning of history of AIDS the epidemic has served to bring out the human side of a activist art. The biological crisis that has pervaded our society. Roman's class production also participated in a historical moment, recreating and retranslating a commemorated the tale of AIDS told years after its first rendition. The story still community-based unfolds. nature of the early

T T

F

Sontag

26

ourteen years after the first article about AIDS appeared in the N~w York Timu, the epidemic has further embedded itself in our consciousness. Scholars have begun to tackle AIDS on fronts other than the biomedical one. The staged reading of Warrm marks a concrete example of the way that AIDS has entered the cultural imaginary. The entrance of AIDS into literature and art has been answered by a new field of critical study. Theorists of AIDS probe the signification of the epidemic in media, literature, theater, and public policy.

Theorists like Michael Callen, Douglas Crimp, Cindy Patton, Paula Treichler, and Simon Watney dominate AIDS critical discourse. Extrapolating from cultural and literary theory, Treichler presupposes the constructed nature of society'~ understanding of AIQS. The notion of a constructed view of AIDS departs from the traditional understanding of a disease through its biology. The study of the representation of AIDS in

THE NEW jouRNAL

various media assumes the power of language to construct society's concep tion of this crisis. And hence, it assumes the power of language to destroy the harmful metaphors of AIDS. Writes Paula Treichler in t h e anthology AIDS: CulturaL AnaLysis, CuLturaL Activism: "The name AI DS in pare constructs the disease and helps make it in telligib le. We cannot therefore look ' through' language to determine what AIDS 'really' is. Rather we must explore che site where such determinations really occur and intervene at che point where meaning is created: in language."

Akin co Women's Studies and Echnic Studies, critical AID S studies renegotiate the metaphorical terms on which AIDS is understood. Particularly hard hit by the realiry of AIDS amongst its faculty members and in the surrounding community, t he University of California ac San Francisco has emerged as a hotbed of critical thought concerning AIDS . Academia and activism powerfully fuse on the UCSF campus in a vigilant effort to resist an epidemic that has hit far too dose co home.

Wich che recent loss of history professor John Boswell, Yale can no longer feign ignorance of the reality of AIDS with which institutions like UCSF have been contending for years. Several classes ac Yale approach AIDS from the arcistic and cultural standpoints, joining the ranks of critical study of che disease.

Although slated as a biology rather than a humanities course, Alvin Novick's course, " Biology and Human Affairs: AIDS and Society" was first offered 'seven years ago, providing promise for future studies in AIDS beyond science. Novick credits himself for merging social science with biological science in the course and wich the attempt co show studenrs how social attitudes coward the disease affect public policy pertaining to AIDS. The move marks a radical departure from the traditional ways of looking at epidemics. Though developing at a much slower pace than che biomedical research conducted at che Yale School of Medicine, Yale's social sciences and humanities are gaining momentum in the field of AIDS. Since che appearance of "AIDS and Sociery" in the coursebook, other professors and graduate Students have developed courses approaching

r" subject of AIDS is the person with d, gagged, and hidden away b ehind c screens and curtains of AIDS which are occasionally pulled to order to reveal the elaborately stagespectacle of the monstrous.

- Simo n Watney AIDS from a spectrum of positions. Last semester, doctoral candidate Carra Hood (GRD '95) joined David Roman in teaching AIDS-related topics with her Women's Studies seminar entitled "Women, AIDS, and Identiry." The course focuses on the special position of women with HIV, the syllabus including works ranging from Sheila Rothman's Living in th~ Shadow of D~ath to Susan Sontag's AIDS and its M~taphors. T he course attempts to examine che specific problems posed by HIV-posicive women to the worlds of medicine, public health, journalism, and criticism.

Critics more focused on what they call "real life" concerns resist highly convoluted theoretical debate. Especially in light of che reality of death, AIDS presents itself as much more than an academic specter. But Roman defends the work being done in che fie lds of literature and theory: "There are multiple sites of contestation in the fight against AIDS," he says. "I don't think it's useful for any AIDS activist to give up any site of power, whether ic be the health science, or whatever one's expertise is." When he last taught "Contemporary American Literature" in 1993, Professor of English Wayne Koestenbaum included AIDS and its M~taphors on che course reading lise. Fully aware of the indirecmess of Sontag's appeal, Koestenbaum asserts chat che academic nature of theoretical discourse does not undermine irs significance. "It's always hubris to do something without an immediate end to ameliorate suffering," he says. " But a lot of good accrues from analysis." Although he commits himself to che importance of critical AIDS theory, Roman emphasizes che real-life quality of the teX[S explored in his class.

Many of the cexcs are not nationally circulated and have only been noticed by the limited communities from which they originate, such as che San Francisco AIDS Project.

by Suunne Kim

fEBRUARY 10,

1995

27

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Even Novick, far from a literary critic, . "victim art" Koestenbaum says, "I don't acknowledges the power of interpretation want to grant it legitimacy. It's really a and representation in the form of social punishing distinction. " m ores. "I don't t h i nk of AIDS as a The national debate surrounding metaphor," he says. "I think of it as an alleged "victim art" finds its local epidem ic. And when I go beyond the counterpart in the controversy over the science of it, I do go as far as writing and Bass grant at Yale. The furor continues to speaking on the effects of social attitudes grow over the terms and meanings of the toward people that make them vulnerable. "western canon" in liberal education. The When we stigmatize and ost racize Bass debate raises questions about the people-gay men, injection drug users, position of AIDS art and literature within black and Hispanic people-when we do an institution like Yale. Accord ing to Roman, the label "victim art" serves only that as a society, denyi ng them fundamental civil rights, we stress their one purpose: to perpetuate rigid lives. We force them into counterculture class ifications of art, culture, and that often makes them vulnerable to a lot education. "I don't understand why there of things, including the HIV infection." has to be this sort of binary system that The inclusion of AIDS in t h e situates classical, canonical materials on humanities marks how the resistance to one side as a hermetic group of texts and AIDS takes myriad fo rms. The effort pr!)ducts, and then the writings, histories, manifests itself in two layers: first, in the and materials of 'Other' cultures as being critical analysis of the literature, art, and two discrete categories that cari't interact performance, by and about people with and inform each other," says Roman. "I AIDS, and second, in the application of . don't think it's useful to keep those critical theoretical concerns to texts that categories discrete. When people do that, it seems to me more symptomatic of their have no explicit discussion about AIDS, own investments in policing the borders of but still inform our understanding of it. what counts as art and what counts as Such studies take into account the culture, which is assumed to be staunchly activist nature of many of the uncontestatory and naturalized." works being examined. AIDS discourse is a Scholars of AIDS in the humanities site where art and politics merge quite have not been the first to face opposition potently. Roman states that one of the objectives of his class is to ask, "What is in the academy. The Bass grant activist art? How do we identify work that controversy raises serious questions about comes out of specific communities affected all minority discourse. In Roman's estimation, scholars in ethnic and minority

by AIDS? What does an AIDS activist art literature and art face the value piece look like?" designations assigned to them. "It would he overtly activist stance of AIDS be unfortunate for those of us who teach minority discourse, or the literature of art runs the risk of bei·ng misinterpreted within the highly AIDS, or lesbian and gay studies, to continually concede to the categories of volatile world of the debate over political value that are imposed upon us," says correctness. Recently, dance critic Arlene Croce of Th~ N~ York~r refused to review Roman. The place of c ritical AIDS a performance choreographed by Bill T. discourse resonates with particular clarity Jones, who is African-American, gay, and as the academy struggles to accommodate as well as resist the changes in intellectual HIV-positive, dispensing of the work as discourse. mere "victim art." Croce's assertion that I8J the position of the artist allowed no space in which she cou ld critique the performance falls in line with dismissals of Suzann~ /Gm, a junior in Saybrook Colkge, is mllnaging editor ofTNJ. works by other minorities. Of the epithet

T

1125 Db•weU Ave. • Hamden •498-1~

THE NEW JouRNAL

Managing AIDS, Managing Difference New Haven agencies struggle to adapt to the changing profile of an epidemic.

DS discriminates. It strikes along lines of ethnicity, lass, and sexual orientation. In New Haven, a city dominated by issues of race and poverty, AlDS service rganizations must do more than just care for the sick.

The explosion of the virus in minority communities in the city has forced agencies to take into account differences of race, culture, gender, sexual orientation, and class. In a small city with a limited budget, AIDS service organizations must also vie with each other for the- resources necessary to meet the particular needs of their targeted populations.

In New Haven, AIDS is the leading cause of death for men between the ages of 22 and 44 and the second most common cause of death for women in the same age group. In the greater New Haven area, African Americans account for 63 percent of adults and 81 percent of children with AIDS. The rate of infection among Latinas is increasing most dramatically. The fact that many people with AIDS start out marginalized makes it even harder for them to live with the disease. "HIV disease in the state of Connecticut is clearly a disease that has made its inroads in undereducated and lower economic classes," says Thayer Quoos, Director of Client Services at AlDS Project New Haven (APNH).

"So it is a disease of class and lack of education, and those groups are already overburdened by poverty and the strains of just getting by day by day. " These problems also make running effective service organizations and procuring sufficient funding more difficult.

A

T

he demographics of AlDS in New Haven have changed drastically since the epidemic began. When the HIV virus fiTst surfaced here, it was confined mostly to two populations: white homosexual males and IV drug users. APNH, created in 1983 as New Haven's first AlDS service agency, offered home meal delivery, support groups, a hodine, and educational services. Case managers helped HIV-positive individuals gain access to legal and medical resources and other general support services available in the city.

Almost all of those originally infected with HN have died, ~d New Haven's needle exchange program, the longest continuously active program of its kind, has successfully reduced infections among N drug users. APNH now mostly serves younger gay males of all ethnicities. To

FEBRUARY 10, 1995

Hispanos Unidos Contra El SIDA/AIDS, INC. accommodate the reality that AIDS now primarily affects minority groups in New Haven, members of the Latino and AfricanAmerican communities have established AIDS service agencies in the city. These agencies have tailored their prevention education programs and case management services to address communityspecific issues. They do, however, offer services to anyone, regardless of ethnicity.

In 1987, Hispanos Unidos, the first Latino HN/AIDS service organization in Connecticut, opened its doors. The agency has distinguished itself by its ability to communicate with the Spanishspeaking community. Language is not the only barrier to helping the Latino population. Director Luz Z. Gonzales explains that the Latino community's strict Roman Catholic legacy often results in an unwillingness to use condoms, difficulty in accepting a diversity of sexual orientations, and a reluctance to discuss issues surrounding HIV. For many in the Latino community, Gonzales says, AIDS represents a punishment: "AIDS means you were not behaving properly."

The dose-knit nature of New Haven's Latino community also leads to concerns about confidentiality. Gonzales has had difficulty sustaining support groups.

"Latino people tend not to talk in groups," she

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explains. As a result, H ispanos Unidos concentrates mainly on i ndividual counseling. Those support groups that do operate function as discussion sessions for women at high risk, so that no one in the group knows for sure which members have HIV. In these groups, women phrase all discussion in t he conditional tense to maintain complete co nfide ntial ity.

Hispanos Unidos focuses on Latinas, says Gonzales, because their tendency to obey their male partners increases their risk of infection from unprotected intercourse. If the system works, women will educate both their sexual partners a nd their children in turn.

Created the same year as H ispanos Un.idos, AIDS I nterfait h Netwo rk responds to African Americans' concerns.

Prompted by a Yale Divinity student, Elsie Cofield established the agency immediately after retiring from a 31-year teaching career in the Hamden public scho ol system. AIDS Interfaith fou nd its fi rst home in t h e basement of Emmanuel Baptist Church in t h e D wight neighborhood, where Cofi eld's h usband was pastor.

AIDS Interfaith began as a satellite of APNH, funded by a $12,000 grant. In 199 1, Cofield sought independence from the more established agency in order better to serve New Haven's African-American community. In a May 199 1 newsletter, Cofield wrote, "Separated as much by culture as by location, AIDS Project New Haven and Interfaith have, over the years, experienced inevitable organizational tensions." Cofield believes APNH did not allow her sufficient freedom to address those health and educational issues specific to African-Americans in New Haven.

While Hispanos Unidos concentrates on issues of communication, AIDS Interfaith must be particularly sensitive to the poverty and substance abuse prevalent in New Haven's African-American community. "The black p op ulation is different," Cofield believes. "Black people k n ow black people. That's how it's different, because some people couldn't understand the d ru g addicts an d the

p overty, alcoholics, people in shelters."

Cofield s plit from APNH primarily because she felt that New Haven's AfricanAmerican population would place far more trust in an organization run by African Americans and located in an AfricanAmerican neighborhood. "Blacks will come to me when they're not going to

"You have to show you are costing society more without the program than with the program." · anybody else," she says. "I guess because I'm black, and maybe because my husband is very well-respected in the community as a minister at the church for 28 years, they have a lot of confidence in coming to either one of us.~ Cofield hoped to use her location and the influence of the church to encourage t he African-American community to assume responsibility for dealing with the virus. In 1991 she wrote, " In th e face of this overwhelming onslaught in communities of color, it has becom e imperative that the black community take greater responsibility for stemming the epidemic and caring for its casualties. AIDS Interfaith must play a central role in bringing that about."

APNH's im age as an organization targeted primarily at homosexuals may also have led to the split. "Elsie Cofield really wanted her own outfit to some degree, in part because she felt that too many people associated the name APNH with the gay community, and therefore many blacks were not coming in for services because they could not cross that line," explains Quoos. Both Quoos and Gonzales point out that Latino and African-American communities often have difficulty dealing with the issue of homosexuality. "Gay men of color continue to be a major sourtt of concern to us because they are very hard to reach. Many of the minority communities

Tm Nnr Jouuw.

Thank You, arc particularly harsh in their attitudes towards homosexuality. Many of these men tend to be more closeted, more reluctant to come forward for services," says Quoos.

While statistics show that APNH docs not primarily serve homosexuals, the increasing specialization of the other organizations has made the image harder to fight.

Hispanos Unidos in th e pas£. As the political climate becomes increasingly conservative, Gonzales worries that funding will be harder to obtain, making

Joshua Auerbach Ananda Badet Abby Benson Jean Black

F

unding is always a crucial issue for non-profit organizations, which must vic for inadequate reso urces. The establishment of other AIDS service agencies forced APNH to compete for the limited money available from both the federal government and private organizations. "This is a hard community to pull money out of, and so now if you have too many people going after that same pot, it makes it more difficult, makes services more fragmented or not funded as fully as they should be," says Quoos. Alvin Novick, professor of biology at Yale, points out that the inadequate pool of available funding fractures alliances between agencies. •It's like introducing a loaf of bread into a compound of prisoners of war, • Novick says. "If you toss the loaf of bread into the fenced-in yard, there's uoublc.· In recent years, cooperation between the services has increased. Quoos coordinates a consortium of case managers who work to avoid duplication of cases and to set consistent standards. The agencies have also begun to streamline their finances by sharing expenses like auditing ka. Gonzales asserts that competition for funding has not posed a problem for

Dr. Warren Andirnan

Nick Boggs Joel Burges T ornmy J. Dillon competition more severe. The board of directors of Hispanos Unidos recently discussed the distant possibility of merging with APNH and AIDS Interfaith Network under a single umbrella organization. The agencies would maintain their specialized programs and conrinue to target particular populations, but would share office space, resources, and administrative cosu.

Cofield rejects the idea of centralized case managemenr. 'Til never be in favor of that, because we live in different areas and so do our people. That's why it's not going to work, because my people are not going to go into other areas. That's been proven already." New Haven's distinct neigh borhoods, many of which demarcate class and ethniciry, lead to a desire to remain in the familiar areas. "People live and die in the same neighborhoods," says Cofield.

The poor public transportation system in New Haven also requires scattered AIDS service agencies.

The economic and political status of

Alex Funk Shelley Geballe The Gerber Family Carra Hood Ernie Jones Sara Kaplan David Karp ]. William Lassiter J.J. Lind Hillary Margolis David Mensah Paulette McKay

Dr. Alvin Novick Steven C. O'Brien Barbara Tompkins Michael J. Sutherland Jason Weinberger The Porter Family The Kim Family

NEW Faaau.uy 10, 1995

HAVEN

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the country as a whole will determine the survival of AIDS service agencies in New Haven. The future of funding for organizations serving people with AIDS looks uncertain at best. Money for prevention and education comes from

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"This Is a hard community to pull money out of, and so . now if you have too many people going after that same pot, it makes it more difficult, makes services more fragmented or not funded as fully as they should be."

Connecticut's Health and Addiction Services Department, while the case managers at all three organizations are paid through funds received from the federal government's Ryan White Title I Fund, established in memory of the boy whose story forced the country to confront AIDS early in the epidemic. "Ryan White money is disaster relief money. The caseloads in New Haven and Fairfield counties were so outrageously high that we have emergency relief money specifically for services," says Quoos. The Ryan White Planning Council in New Haven assesses the need of each agency in the city in order to assist in equitable distribution of the money. In 1996, the money authorized by Ryan White Title I will run out. Activists across the nation are fighting for its reenactment, but the current political climate makes this unlikely.

AIDS service organizations in New Haven will survive only if they undertake

statistical studies to prove their effectiveness to the government, says Ed Kaplan, professor of management and medicine at the School of Management.

"You have to show you are costing society more without the program than with the program," he says. "The benefits must exceed the cost." In the future, ineffective organizations will have to be jettisoned in order to channel .more money into programs that work.

HIV-positive individuals from already marginalized groups tend to evoke less sympathy from the American population.

"Racism is still a very strong and ugly piece of the American fabric, and that's clearly at work here. We hate poverty, but we punish people who are poor, " says Quoos. "We have a backlash against homosexuals going . on that's also making this very difficult.

There's a real hateful, punitive way that Americans look at sexuality in general."

Funding for non-profit agencies is inseparable from these social issues. "There are political and social decisions involved that are not necessarily balanced," he says.

Novick believes, for example, that a perception exists among minority AIDS activists that power and funding has been grabbed by gay white men, who already have access to more resources and funds.

He counters with studies that show that the majority of funding now targets minorities.

New Haven has always been at the forefront of AIDS service in cities of its size. In the future, the changing national political climate and continuing demographic shifts in infected populations will force the city's agencies once again to adapt. "Those who are vulnerable, those who are infected, and the vast majority of those who provide them services belong to groups of people whom we disdained and whom we still disrespect," says Novick. "It will be either a splendid or humiliating example of how our society responds."

That AIDS often strikes marginalized groups offers the country a dramatic challenge.

IIJI · !Gttby &IJ, a junior in Calhoun Co/kg~. is

associtlu ~elitor o[fNJ. TH£ NEW JouRNAL

Is projecting the HIV infection statistics onto Yale possible, or are we just

Playing the Numbers Game?

W

ere 17 Yale students HIV-positive as of 1994? That is the prediction derived when one HIV surveillance study is extrapolated onto a student population the size of Yale. Accurate statistical reports of HIV continue to prove elusive. No statutes exist requiring standardized, broad-based HIV testing or reporting. Even the diagnostic criteria shift. Applying national statistics to the Yale population adds another layer of distortion, due to the varied sexual, ethnic, and social backgrounds and ages of Yale graduate and undergraduate students.

In 1990, the Centers for Disease Control (CDC), part of the U.S. Department of Health and Human Services, conducted the HIV surveillance study most relevant to the Yale student population, although the study's survey body does not match Yale perfectly, as Yale's student body differs slightly in ethnic make-up.

Also, 17 of the 19 participating universities in the CDC study are public, and most are larger than Yale. But despite these imperfections, this study presents a best-guess hypothesis. Dr. Helene Gayle and her colleagues from CDC evaluated 16,863

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students in the United States. Two out of every 1,000 students tested HIV-positive. The researchers divided students into five ethnic categories: White, Black, Hispanic, Asian, and American Indian. No Asian or American Indian students tested positive.

At ten of the 19 universiti s studied, no students tested positive. Therefore, at any give time there may be no HIVpositive students on a campus, e ecially at a relatively small university such as Yale. Or Yale rna represent an above-average example.

Surprisingly, in the four years since his ground-breaking study, no further comprehensive studies have been conducted, and national statistics have changed significantly since Dr. Gayle published her findings. Instead of tracking HIV among college students, surveillance researchers have foc'used on other specific groups of adolescents and young adult~~uch as prisoners, applicants to military service, and sexually transmitted disease clinic patients in various locations throughout . e country. Though these studies included participants in an age similar to that of Yalies, they present strikingly different findings Results also vary

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• source: N~w England Journal of M~dicin~. vol. 323, no. 22, p . 1539. .. source: John R. Meeske, Yale College Registrar

• source: CDC HIV/ AIDS surveillance reports, Dec. 1990 and June 1994.

FuauAitY 10, 1995

CDC study was conducud.

CDC STUDY RESULTS BY SEX, AGE, AND RACE/ETHNIC/IT 0.5 0.45 0.4 -~ 0.35 0.3 - 0.25 0.2 0.15 0.1 0.05 0

l

t !.

o.s 0.45 : 0.4 '# 0.35 0.3 11 0.25 2$ 0.2 0.15 0.1 0.05 ~AU~uw~~~uuwuwu~~ 0 18-24 25-39

'1. !.

age (yr)

sex

-¡=

Hispanic

.....

¡o fi

~ <J f

Black

White

0

0.05

0.1

0.15

0.2

0.25

0.3

percent positive Source: New England Journal of Medicine volume 23, no.22. p. 1540

according to resting date-most reports on adolescents and yo ung ad ults were published in rhe early 1990s and are outdated now.

More available than specific studies on university students are epidem iological statistics for the overall American population. CDC publishes a national report for HIV infection and AIDS cases twice a year. But even these studies prove problematic. In its June 1994 manual, CDC outlines both the assets a nd the technical problems with its own reporting techniques. For example, all AIDS cases are diagnosed using the same case definition, which was revised early in 1993. CDC considers AIDS testing practices reliable in 85 percent of all cases, but HIV resting techniques are far less dependable. Since

34

HIV can take more than fi ve years to manifest itself as AIDS, recently infected people remain unaware that they are HIVpositive unless they choose to get tested.

The latency pe riod between HIV and AIDS becomes particularly relevant when documenting prevalence of the disease on college campuses. Often, people who are infected with HIV as college students go untested and develop AIDS only after they have graduated and reached a new surveillance age group. T hus, studies rend to underestimate the numbe r of young people with HIV. "HIV in fec t ion data should be interpreted with caution," states CDC's manual. "These data provide a minimum estimate of t he number of persons known to be HIV infected."

Surveillance coverage gains increased

importance in light of teenage sexual activity in 1994. According to CDC, 86 percent of men and 77 percent of women under 20 have had sexual intercourse. Of these teenagers, studies predict that one in five will likely contract at least one sexually transmitted disease by the time they become 21. By compromising the primary immune defenses in affected tissues, any sexually transmitted disease increases the risk of contracting AIDS. Moreover, education about the dangers of sexual activity does not always lead to safer behavior. Ga}'le's study of coll ege students stares, "H IV infection is present on U.S. university campuses, although the rate appears to be far lower than chat of populations known to be at high risk. The potential clearly exists, however, for the further spread of HIV infection in chis population." Studies of sexual behavior have found that young people educated about HIV transmission do not always alter their behavior accordingly. For instance, a report on urban women's sexual behavior found that single white women with more than 12 years of education are more likely to have multiple sexual partners- which is considered risky behavior-than are single white women with fewer than twelve years of education. Th~ N~w York Tim~s recently published a survey of teenagers in Who''s Who Among Am"ican High School Studmts.

The article was entitled "A+ Doesn't Mean A-OK." According to the survey, 35 percent of the students questioned said they would have sex without a condom. A stunning 83 percent of these students believe they have little or no risk of contracting AIDS. Despite flaws in epidemiological AIDS and HIV studies, people seem to need concrete n~mbers of cases to grasp the extent of the disease and its threat to them.

While inherently problematic , H IV surveillance reports remain importa nt because they make HIV infection appear less abstract. They illustrate that Yale students, many of whom were once also listed in Whos Who Among Ammcan High School Studmts, are not immune to AIDS.

..

Ann Sl~dg~ is a fmhpuson in Ezra Stilts Co/kg~.

THE NEw jouRNAL

BETWEEN

T H E

V I N ES

Of Laura Ashley and Latex y father jokingly refers to me as The Laura Ashley Though the skeptics who couldn't understand my AIDS Girl, and most of the Yale community would concur Educator work didn't know Mr. Alford, they knew a friend whom with that assessment. Perhaps the epithet stems from I'll call Jeff. Or they knew someone exactly like Jeff, who wearing a few too many floral-patterned long skirts frantically visited me one night at the beginning of sophomore that alternate with solid green and brown blazers. The black bow year to say that he had had unprotected intercourse. He didn't that so often adorns my hair doesn't help to diffuse the image. know why he hadn't been more responsible-they were both a bit Such a breed of English country conservatism, combined with drunk, he said, partly defensively but mostly sheepishly. He a rather quiet demeanor, clashes with the seemingly indelicate act realized too late that the fearlessness that often comes with of adorning wooden penises with condoms. So when I listed intoxication cannot protect against AIDS and STDs. When an Student AIDS Educator among my extracurricular activities, many AIDS test six months later revealed that Jeff was HIV-negative, he friends raised their eyebrows in disbelief. Some asked "Why?" and understood that he was lucky. said, "I didn't think you'd do that sort of thing." Perhaps they The skeptics also didn't know my own sexual blossoming-::-or, recognized that Laura Ashley wouldn't want me filling her catalog perhaps more appropriately-deflowering. In the midst of my first with dental dams instead of rose-filled baskets. serious relationship, I considered having intercourse but didn't But my astonished friends never knew Mr. Alford, my fourth know where to seek advice on birth control. The AIDS Educator grade teacher who died from AIDS complications two years after I Program provided a comfortable place to learn about my options passed through his classroom. without encountering the For his 80 students at the Horace potentially impersonal University Perhaps they recognized that laura Mann-Barnard Elementary Health Services (UHS) School, Mr. Alford made Grinnie bureaucracy.

Ashley wouldn't want me filling her Winnies, oval shaped, one-eyed, So when The Student AIDS catalog with dental dams instead of green wooden creatures with Educator application form antennas that awarded good appeared in my mailbox during rose-filled baskets. citizenship. He created the my sophomore fall semester, I Yellow Book to teach English, in opted not to add it to the pile which he used the names of all that had already accumulated in his students in sentences that conveyed the basics of grammar. To the closest wastebasket. To the questions which asked about my teach creative writing, he challenged students to figure out why a previous AIDS educational work, I confessed my inexperience. For close friend of his, "a most unusual fellow," had a white stripe my extracurricular activities, I listed my residential college council, down the middle of his head. acting, and tutoring. When asked what my strongest personality trait as an AIDS presenter would be, I embarrassingly recall that I Mr. Alford also encouraged his students to write their first articulated how "personable" I was. For my personality drawback extensive research papers, focusing on an unfamiliar country; I chose China, with which I associated only the Great Wall and the as a presenter, I unhesitatingly put "self-conscious." Finally, I channeled my meager artistic creativity into designing a poster on delectable roast pork that I ordered frequently from King Dragon.

AIDS communication.

Mr. Alford adorned all his assignments with caricatures of himself, Soon after my interview with the UHS AIDS coordinator Sally his balding head speckled by a few strands of hair. Throughout his Rinaldi, and then-student coordinator Allison Epstein (CC '94), I battle with AIDS which extended through my last couple of years discovered that Laura Ashley was about to be shocked-her Yale of elementary school, he informed us of his progress by drawing representative was now a Student AIDS Educator. himself in a hospital bed with the same balding I eagerly but nervously entered the fifth floor of head, and a big thermometer protruding from his UHS for a training session that would occupy mouth.

M

FEBRUARY 10, 1995

35

much of my Friday night and Satu rday morning. I received the Student AIDS Educator Notebook-a large black binder fu ll of articles that ranged fro m the first New York Times article reporting a "Rare Cancer Seen in 41 Homosexuals" on July 3, 1981, ¡ to t he New England journal of Medicine's 1992 findings on RU 486. In the pocket of the binder was the Student AIDS Educato r Manual that cove red t opics like freshperson orientat io n , workshop protocol, and HIV ant ibody testing in New H aven. The presentations

by Sally, Allison, and other UHS affiliates demystified issues from Hepatitis B and the cervical cap to self-esteem and stress management. Grasping t h e b inder o n which my name was emblazon ed with si lver mar ker, I left U H S Sa turday morning tired but secure in my knowledge of AIDS-related information. I recall that despite my fatigue, I wa lked more confidently than usual.

The Educators gathered at UHS every Monday night to plan activities and listen to educational speakers. We brainstormed about a Valentine's Day campaign and h eard community health educator Domenic Maldonado discuss his work at the New Have n Needle Exchange.

Although I always rushed from dinner to the 5:45 meetings, I objected little to my disrupted digestion.

Over the next few weeks, I watched myself become emboldened as I handed out condoms, dental dams, and abstinence cards wrapped in pink Valentine's Day wishes at Yale Station. I watched myself sell T- shirts in the dining h all that proclaimed on the front, "See Dick with an erection. See Dick with no protection.

See Dick with an infection"; the back asserted, "Don't be a' dick. Use condoms

with spermicide Nonoxynol-9." Perhaps Laura Ashley would have been disgusted at my transgression of proper social decorum, but I still wore her skirts while I handed out red ribbons at Yale Station. saw the hawking at Yale Station and in the dining halls as a requis ite empowering of my shy self for the main task of the AIDS Educators: the presentations to freshp~rsons during the fir st weeks of school. In self- select ed groups of four, we plan ned our presentations. The year I entered the group, the Educators decided to slightly s h ift from their traditional lengthy dissertations on AIDS, STDs, and birth control to a more interactive format. The shift reflected the realization that Yale students . often don't practice safer sex despi'te their keen awareness that protection is crucial. I only had to think of Jeff to know that students' knowledge .d idn't materialize in their sexual practices.

The new format stressed discussion of plausible scenarios-sitting through such a presentation might have made Jeff think to grab a condom instead of later agonizing about the repercussions of unsafe sex.

After numerous jokes about flavored condoms and leather straps, my group opted for fluorescent pink Pia-Doh to begin the requisite icebreakers. Our group's coordinator, Rebekah , held a

I

Mr. A. got so upset, He yanked at his hair .

"What?" he cried sadly, "Why, I've no more hair there!"

\

Art from handouts in Mr. Alford's fourth grade class.

THE NEw JouRNAL

chunk of Pia-Doh in her hand and passed a piece of it to the people with whom she shook hands and instructed them to do the same. After a number of handshakes, Rebekah asked the Pia-Doh holders to remain standing while the others sat.

When Rebekah said that what we had just done was not shake hands but have sex, the groups often laughed. But when Rebekah mentioned that the proud possessors of the Pia-doh all had STDs, in accordance with the statistic that one in four college students will contract an STD before they graduate, their smiles disappeared. I smiled, knowing that the pink globules had made them think.

Michal, another member of my group, then detailed the transmission and course of HIV and AIDS; I admired her for undertaking a difficult task. The complexity and horror of AIDS still amaze me, and I feared then, as now, that my words could never adequately explain the disease or its repercussions. Luckily my rhetoric could handle STDs. I passed out STD symptom cards to the audience; they read the symptoms, sheepishly or boldly or laughingly, and tried to guess the STD. I either affirmed or corrected their guesses and then outlined the treatment for it. In speaking, I relished the boldness and the confidence in my voice, the one that so often remained silent in classes or group discussions.

Passing cervical caps , sponges, spermicide, and pills' around the room, Sabrina discussed birth control. Sensing that Sabrina's presentation was the one most students, especially women, found interesting, I was frustrated that she had only five minutes to explain the numerous options.

Rebekah had the coveted responsibility of illustrating how to place a condom on a woodie to illustrate AIDS and STD prevention; then groups of freshpersons could follow along with their own woodies and condoms. I admired Rebekah's swift execution in a demonstration where I often felt acutely slow and clumsy.

After the presentations, we divided the freshperson s into four groups and

FEBRUARY 10, 1995

discussed scenarios. My groups typicaJiy pondered the hypothetical, but realistic, lives of Stephanie and Jim. The scenario went as follows: You see Jim hitting on Stephanie at Naples on a Thursday night.

Jim has told you that he tested positive for chlamydia two weeks before but has not yet begun treatment for the disease. Jim often brags that he prefers not to use condoms during intercourse and that he can convince any woman that he does not need to wear a condom. From the way

I watched myself become emboldened as I handed out condoms, dental dams, and abstinence cards wrapped in pink Valentine's Day wishes at Yale Station.

things are going between Jim and Stephanie, you suspect that the two of them will have unprotected intercourse on this night. Jim has just taken a trip to the bathroom and Stephanie is alone. Shouldyou approach Stephanie and warn her of the danger of contracting chlamydia?

Some students were disgusted with Jim, but others understood his dislike of condoms. Some students thought Stephanie should be informed, but others saw such disclosure as a breach of confidentiality. I clearly knew that I would tell Stephanie, despite other Educators' objections that Jim's reputation would suffer and that Stephanie should know how to care for herself.

I simply knew that if I were Stephanie, I would want to be informed , and therefore I would tell her. But I never voiced my opinion during discussions-

Educators swiftly learn not to judge or to allow their personal opinions to influence their p resentations. So I simply asked questions and allowed students to respond, hoping that they would eventually come to an informed decision.

When asked, "What if this scenario stated that Jim had AIDS?" students often h esitated-! had changed cu rable chlamydia into a fatal disease. Some altered th eir previous answers and others did not; I certainly didn't. Although I exasperatedly wished I could change the views of Jim's supporters, I reassured myself with the knowledge that they were at least thinking about being the observer, or Stephanie, or Jim before they saw the scenario actualized in the smoky, pitcher-laden Naples they frequented on Thursday nights.

We ended the presentations with our Condom Cards. On pieces of paper we had written the steps involved in an evening of romance and intercourse. Each freshperson took a sign ranging from "A Candlelight Dinner" to "Withdrawal of Penis While H o ldi ng the Base of the Condom" and arranged themselves in chronological order.

Ce rtai n steps were fixed-the condom always had to be put on before intercourse.

But other steps were flexible-dinner and s leep co u ld take place before or aft er intercourse, as the freshpersons discovered gleefully. We were relieved ro find that during most of our six presentations, the freshpersons arranged an evening of safer sex. I just hope they practice it, I thought.

Bur I was fairly confident they would.

Sp urred by a desire to pursue other extracurricular interests and disillusioned by th e lack of cohesiveness I sensed among the Educators, I opted to leave the Student AIDS Educators in the spring of my junior year. But I feel, with a satisfying twist on the old DragTut watchword, that we helped protect and inform. I just hope that somewhere Mr. Alford is watching me in my floral fi nery and smiling. I know that Jeff is.

18]

Robin Ktmpa is a unior in Branford Colkgt.

37

Our AIDS Inheritance The following essay grew out of discussion in "Women, AIDS, and

economic privilege, and what was considered itsexclusive inalienable right to life, liberty, and the pursuit of happiness.

Clearly, abolition did not threaten to dissolve American democratic principles, but rather to extend them to a formerly disenfranchised e have inherited a lot from John Locke. Our concern group. In a phrase, white America was afraid of being overwhelmed by blackness. At the turn of the last century, America was in the with "identity" and "property, " for instance, and their "relation," as well as our interest in the midst.of a racial panic. Blackness was "spreading," "infectious," and reliability or deceptiveness of "appearances" all stem "could end up anywhere." Racial panic reconfigured as sexual from his "An Essay Concerning Human Understanding." Identity anxiety produced an idea of the future that could only be imagined resides in an utterance, "that which he calls himself." Locke is not, as a reproductive nightmare. however, writing about bodies that represent, emit signs, inhabit This is the story we have inherited. It has been recycled, historical narratives. Discerning representation from fact is, reinvented, refashioned to fit the latest cultural panic. It is the story according to Locke, "difficult to conclude from. the Nature of that, with its moral epilogue of "better safe than sorry," has been things .... [and) will by us ... be best resolv'd into the Goodness of ¡ ¡ reproduced in our national AIDS text. Although race has remained God." If we could, we might ask Locke just why he trusted God to an American .cultural fact, it 'is not exactly the same kind of cultural provide this knowledge. More importantly, we might ask ourselves, fact it was at the end of the nineteenth century. In addition to since we no longer trust God in this way, why we turn away from describing essential characteristics produced by and identified with the bodies of for.mer slaves, blackness is understood in the the utterance and hold bodies accountable for what they represent rather than what they do or say. twentieth century as a constructed discourse. It is at once Of course, anyone can say anything. We are not, I suspect, something in bodies, DNA coded to produce phenotype, and a convinced that bodies-particularly non-white bodies-represent representational system that bodies inhabit, what Barbara Johnson as indiscriminatively, as arbitrarily, as playfully, or as successfully. calls an "already-read text." In the discourse about AIDS, blackness Bodies matter to us, as a consequence of what they represent, in a is both metaphor and state of being. AIDS, like blackness, renders way that words-especially spoken words-simply do not. the future unimaginable. Blackness, like AIDS, represents what Representation subverts process for no specific reason. Too cannot be represented. often, the rationale, whether stated or not, is that "they all look the The conjunction of AIDS and race is not surprising if we same" and "better safe than sorry." At the end of the nineteenth remember that, since the nineteenth century, discourses about century, the subject and object of the moral were racially distinct. homosexuality and blackness have performed the same kind of The lesson, then, was that Americans of European descent are cultural work-"othering"-and produced bodies embedded in better safe from all contact with Americans of African descent than "already-read texts" that share language, plot, and moral. The alignment of these rwo discourses only makes sense, however, once sorry, after the fact, when miscegenation had produced a nation of mongrels. This turn-of-the-century myth, or apocalyptic forecast, we realize that "othering" is not about "others" but about representing "them" as "not-us." "Othering" disregards the presents the construction of "the color line" as a prophylaxis for the future, in this case a future characterized by the reproduction and specificity of difference in the process of constructing an continuity of European racial integrity. oppositional relation between what does and does not fit some At this time, blackness was construed as biological and cultural, imagined cuJcural identity. The result is an homogenization of something in the blood and contracted through proximity, a difference. D espite the incommensurability of race and homosexuality, for example, racialized and queer bodies have, as disease that could be cured and a mark of inherent primitivity.

Since blackness was embedded in such contradictory constructed "others," both been narrativized as "unnatural," formulations-it could be in bodies, outside of bodies, passed on "diseased ," and "contagious." Even before the AIDS epidemic, from one generation to the next by biological reproduction or by contact with racial and homosexual "others" represented a threat to association-anxiety about its transmission, from those who genealogical continuity. Since the epidemic was first reported, already had it co those who didn't, resuJced in the reproduction of however, this idea has reappeared in public discourse, particularly cautionary narratives. in those contexts in which AIDS is interpreted as What exactly did white America fear? AJI sorts confirmation for the inherited idea that the future of irrational things. The loss of identity, property, of white heterosexual America-the so-called Identity," the seminar the author taught in the Women's Studies department last semester.

W

THE NEW JouRNAL ..t

"general population"--depends on keeping a safe distance from these bodies.

Since the nineteenth century, the cultural production of the future-i.e., the collectively imagined idea of the future that informs and reproduces national mythology-has required synonymous production of identifiable, expendable populations.

Cultural production, in other words, creates its own excess which, for the sake of some sustainable idea of the future, must be construed as outside of culture as well as the refuse of culture, the negation of culture as well as the delimiting of culture. The theory is that the co~product will remain non~contaminating as long as it is properly contained. The risk, however, is that containmentwhether geographic, economic, architectural, ideological, genetic, epistemological, narrative, or rhetorical-will fail. For more than 100 years, the moral "better safe than sorry" has been misread as if the future depended on the disposability of racialized and queer bodies.

The problem of conceiving a future that would include these bodies derives not simply from a lack of imagination but rather from an ideologically informed misreading of risk. In other words, "othering" produces a confusion of literal and figurative language which results in rendering the risk that these bodies presumably represent to racial integrity, reproductive continuity, and national identity indistinguishable from the risk that "already~read texts" represent to narrative coherence. Since the nineteenth century, therefore, these bodies have been construed as if they are exactly what they represent-not necessarily because they are what they represent but because what they represent is useful.

At this point, it might seem redundant or too obvious to say that as a result of a rather unimaginative appropriation of inherited categories of racial and homosexual "others," public discourse about AIDS has provided another occasion to narrativize the exclusion of gay and black bodies from the cultural production of the future. Although this statement is redundant, obvious, and boring, so are the narratives that it responds to and yet they have been rewritten and recontextualized for more than a century.

Clearly, it needs to be restated at least as often. The future, narrativized in counter~discourses, demands it.

Why is the idea of the future so powerful? Why must the future continue to be narrativized as a story of generational succession?

Indeed, why is the idea of generational succession reproduced as a trope for the future? Biblical parables are, of course, relevant.

Stories, it seems, are not only about reproduction-who begets whom-but also constitute reproduction, to the extent that subsequent narratives repeat their ante~dents (the story of Jesus, for example, taking over the story of Abraham). According ro Michael Warner in "Fear of a Queer Planet," "repro~narrativiry" removes uncertainty. I am unconvinced that repro~narrativity accomplishes this, however, since any idea of the future can produce only an insecure prediction-a prediction that is, in any case, unverifiable. Rather than removing uncertainty, repro~ narrativity satisfies the desire to narrativize the future as if the story

FEBRUARY 10, 1995

could map the unknown. Significantly, this mapping occurs not as a result of prescience but by retracing the past. If we believe repro~ narratives, we believe them because we do not know how not to believe them, because we do not know how to think our way out of them, because we do not know how to locate meaning without proposing an idea of the future even if that future simply reproduces the past. In other words, queer and black bodies are narrativized out of the future not as a result of any risk for contracting HIV. Risk is, in fact, used in public discourse about AIDS to legitimize repro-narrativity. Queer and black bodies are excluded from the cultural production of the future simply because queer and black bodies have always been excluded from the cultural production of the future.

Public discourse about AIDS produces narrative authority not only by recontextualizing the past but also by its codependent attachment to official science, particularly the statistical profiles of risk compiled by the Centers for Disease Control and the AIDS education materials distributed by the Department of Health and Human Services. Science validates repro-narrativity, however, even as it constructs its own repro~narrative. In other words, science produces the possibility of imagining a future without AIDS, but does not, interestingly enough, produce the possibility of imagining a future without AIDS that also detaches the rhetoric of risk from "already~ read texts." This is a discourse about progress that claims to be objective, factual, indisputable. This is also a discourse about deferral, which means that science uses the idea of the future to justify its lack of accountability. As a result, the hope that science will someday find a cure for AIDS renders the idea of thinking about the cultural consequences of constructing prophylactic categories as post~apocalyptic.

Do we have the luxury, in the midst of an epidemic, to challenge the assumptions of official science or to critique the extent to which statistical conclusions reproduce inherited categories of representation? The moral of the story inst.ructs us to act as if science is telling us the truth, whether we actually believe this or not. Besides, what might it mean, at the end of the twentieth century, to act as if science is not telling us the truth?

Apparently, we have given over to science what Locke lefr to God. Rather than discerning representation from fact, however, science has authoritatively collapsed them.

You might wonder what has happened to AIDS if the discourse about it reproduces a narrative more than 100 years old which perpetuates representational categories even older than AIDS itselÂŁ You might wonder what we are really talking about when we talk about risk groups, HN~transmission, and auto~irnmune disease if science translates nineteenth~century morality into twentieth~ century epidemiology. That is precisely the point. We seem to have lost track of the subject in the retelling of the story, in the misreading of already-misread texts.

1111 Carra Hood (GRD 95) is currmtly compkting h" dissmtttion on tiN Kimb"ly &rgalis v. Dr. David Ac" cau.

39

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