Patient Zero and the Making of the AIDS Epidemic

by Richard A. McKay

  die, go over to my place and clean out the porn and the dildos.” Right? Cause

  you know the next person into that apartment is liable to be your mom, who

  has to empty it out, right, and they didn’t want that to happen. And since I

  was providing the porn in the fi rst place, they used to make sure that I went

  over there and got rid of it.189

  Stewart said that Dugas’s advice made him “work harder” to encourage

  newly diagnosed people with AIDS to address the “loose ends” in their

  “personal lives that were going to be left dangling when they died. Be-

  cause he had tied all his off.”190

  Dugas also benefi ted from his interactions with Stewart and in assist-

  ing others with AIDS education. In Stewart’s opinion, Dugas’s loneli-

  ness was an important motivator for his eventual involvement, however

  loose, in AIDS Vancouver’s outreach activities. As an AIDS patient with

  visible KS lesions, Dugas was enduring acute social deprivation, partic-

  ularly after many years of intense sociability and being accustomed to

  occupying the center of attention in group situations. By offering guid-

  ance and advice, whether to Stewart or others, Dugas was able to take

  part in an exchange that allowed him to make use of his humor and in-

  teract with others. His former lover Redford recalls going to a dance at a

  local Vancouver gay bar, “likely in the summer of 1983, and seeing [Du-

  gas] there with his boyfriend, dancing with great joy and abandon, bare-

  chested, his shirt rolled up and held high above his head, whirling in the

  air between his outstretched arms, his whole body lost to the music. He

  was a compelling fi gure, beautiful and brave— still very, very young, de-

  fi ant in the face of disease and death just as he had always been defi ant

  in the face of all that had threatened to limit his joy in life.”191 If the date

  of this recollection is correct, then Dugas appears— at certain points, at

  least— to have reached an entente with his disease and his community.

  189. Stewart, recording C1491/19, tape 1, side A.

  190. Stewart, recording C1491/19, tape 1, side B.

  191. Redford, “Reminiscences,” Epilogue.

  Locating Gaétan Dugas’s Views 349

  Over the previous years, Dugas had moved home to be with his fam-

  ily during periodic bouts of acute sickness. One of his sisters would

  take time off to nurse him while he was at home, and she did so in se-

  cret because of fears that she would lose her job if this activity became

  known.192 In January 1984, Dugas’s condition worsened once more, and

  the following month he planned to return to Quebec again.193 Redford

  recalled their last evening together: “I invited him to the house for din-

  ner on the night before he left and we all had a good visit, but it was a

  different, very quiet and refl ective Gaétan that night. I can remember

  him sitting on the couch, listening to the tick tock of my old wall clock,

  talking about how peaceful and beautiful the sound was, and thanking

  us [Redford and his partner] over and over for the evening. When I drove

  him home, we were very quiet, both near tears, both of us realizing, I

  think, that we wouldn’t see each other again.”194

  Dugas rejoined his supportive family the next day. Within a few

  weeks, his health deteriorated and he returned to Quebec City’s Cen-

  tre hospitalier de l’Université Laval. There, he received visitors when he

  could and spoke regularly with friends by phone. One day when Red-

  ford called, a relative answered the phone and explained that the family

  had assembled for the administration of last rites. Redford’s friend died

  shortly afterward, on March 30, 1984. A memorial service was held three

  days later and was attended by family members, friends, and colleagues

  from Air Canada.195 Both the obituary, which described Dugas as “agent

  de bord” (fl ight attendant), and a personalized memorial card encapsu-

  lated the joy Dugas took from his career and lifestyle (see fi g. 6.3).

  Shortly after Dugas’s death, Noah Stewart contributed a reminis-

  cence about his friend to Angles, a local Vancouver community news-

  paper. He did not identify Dugas by name, “to preserve his anonymity

  and in order to respect the wishes of his family.” “Nevertheless,” Stewart

  192. Wadden, e- mail.

  193. The recollections of “Simon” (interview notes, p. 6, Shilts Papers) and Brian Wil-

  loughby (recording C1491/18) accord with this date.

  194. Redford, “Reminiscences,” Epilogue.

  195. “Simon” described a “big” funeral to Shilts, interview notes, p. 9. Elaine Watson

  recalled hearing that an Air Canada base manager attended the funeral along with other

  company employees. Watson and another female fl ight attendant who had been Dugas’s

  roommate coordinated the collection of written reminiscences from their colleagues in a

  book that they sent to his family; Dunn, Watson, and Miller, recording C1491/26 (Watson

  recollection at tape 1, side B).

  Figure 6.3 Front cover of Gaétan Dugas’s memorial card, dated March 30, 1984; thermo-

  graphic print with raised silver ink on cream paper, 11.4 × 15.5 cm; copy in author’s per-

  sonal collection, gifted by Ray Redford and reproduced with permission from Dugas’s sur-

  viving family members. The signed inscription reads, “Je vous fais mes adieux, je vous aime

  et je vous attends au ciel.” (“I bid you my farewells, I love you and I await you in the sky.”)

  In text and image, Dugas’s parting message to his friends and family exudes the love of

  fl ight he had experienced for much of his life. It is possible that Dugas himself produced

  the sketch used for this print. The religious connotations of this image would have res-

  onated in the wider Catholic community of his hometown, and were drawn out further

  through the text, with adieux also signifying “to god” and au ciel meaning “in heaven.” The careful preparation evident in creating this personalized card also attests to Noah Stewart’s recollection of one lesson Dugas had taught him and others at AIDS Vancouver: the

  importance of having one’s affairs in order before departing on one’s fi nal journey.

  Locating Gaétan Dugas’s Views 351

  continued, “his story will be familiar to many in the city.” His submis-

  sion bears reprinting at length:

  My friend had had AIDS for a long time, longer, even, than we have had the

  name AIDS for the disease which fi nally took his life. He contracted a dis-

  ease that alerted physicians to the fact that something was seriously wrong

  with his immune system when we were still calling the mysterious disease

  GRID, gay- related immune defi ciency. Then, after travelling for a time, he

  settled in Vancouver and continued to work at his profession.

  A year or so ago, when AIDS Vancouver put on its fi rst forum, he was in

  the audience. I hadn’t yet met him at that point but I had certainly heard his

  name. AIDS Vancouver was in its formative stages. None of us knew with

  any accuracy just what it was that we were faced with. The disease itself was

  a mystery. The society surrounding the disease seemed on the brink of an ex-

  plosion, in which direction no one knew. Fear and hyste
ria were being trans-

  mitted from person to person, fanned by the uncaring “news”- creating me-

  dia. Although I had agreed to devote some time to helping people affected by

  AIDS, I had not yet met anyone who had the disease. Then I met my friend.

  I had heard his name, of course. In the councils of AIDS Vancouver, we

  had discussed what sort of assistance we might offer this man who, it later

  turned out, was quite capable of proceeding without assistance. And a num-

  ber of well- meaning people, having learned his name and the fact he had

  AIDS, were busily informing the community of his condition.

  As the unoffi cial specialist in social issues surrounding AIDS, I have

  often been asked if I have found any verifi able stories of prejudice against

  people with AIDS. Generally, I reply that in Canada at least, no one to my

  knowledge has been denied employment or housing on the basis of their med-

  ical condition. More subtly, though, the only prejudice I have actually expe-

  rienced has been from the gay community itself. At the time I met my friend,

  the rumours were fl ying. He had been seen in a back- room bar, he had been

  seen picking up a stranger in a bar, he had been doing all sorts of things to

  deliberately communicate his disease to the uninformed. He should be quar-

  antined, said some. Other suggestions were less polite. And all of them were

  based on fear, ignorance and hysteria.

  After we got to know each other better, we discussed the rumours about

  his activities. First off, he pointed out a very interesting idea that the under-

  informed tend to overlook. If he had indeed been picking up strangers in

  bars, he would have been endangered by the chance of acquiring any disease

  which that person had, even unwittingly. We all carry the activating agents

  352

  chapter 6

  of many diseases dangerous to people with AIDS, with no diffi culty to our-

  selves. Since my friend had come to this realization, he had stopped having

  sexual contacts.

  “Why the rumours?” I asked. He had dealt with this before. He saw it as a

  kind of projection of the fears of the gay community. We imagined the worst

  thing that could happen and then acted as if it were so. Over the past year, as

  we grew to know one another better, the rumours became less frequent and

  less hysterical. I’d like to think that the gay community mastered its collec-

  tive fear of the unknown dangers of AIDS.

  Why am I bringing up this topic? Because my friend fought his disease.

  He fought the manifestations of AIDS with every bit of willpower at his com-

  mand (which was considerable will). He changed his habits and his lifestyle to

  preserve his precious life. And at the same time, he fought the ignorance and

  fear of the people around him, meeting it with good sense and information.

  He would have been embarrassed if I had referred to him as a symbol

  of the strength that people can fi nd within themselves to meet extraordi-

  nary challenges. Before his illness, he was a gay man much like you or I, with

  the same desires and human failings. When AIDS entered his life, he mo-

  bilized his energies to fi ght. And I sincerely believe— and fi nd it profoundly

  comforting— that he fought every inch of the way. He found life very pre-

  cious. His indomitable will never gave up. Even at the very end of his life,

  when his body had been overwhelmed beyond his power to control it, he did

  not stop to relax, to die without resistance to a force which was too strong for

  him. My friend never quit. He only died.196

  * * *

  In addition to the meanings suggested in previous chapters, the term

  “Patient Zero” can be read to mean the complete nullifi cation of a pa-

  tient’s perspective. This interpretation seems highly appropriate, given

  how Dugas’s lived experience has been overwritten by the fi ctionalized

  character popularized in And the Band Played On. Evidence gathered

  from contemporary sources across North America yields a far more nu-

  anced perspective of the most demonized person with AIDS of all time.

  196. Noah Stewart, “A Friend’s Death,” Angles, May 1984, 17; it was also reprinted in the

  next month’s issue. Stewart did not mention his written submission during the 2007 inter-

  view. He had forgotten about it until the author forwarded him a copy in July 2010. In the

  fi nal paragraph, embarrassed corrected from “embarassed” in original.

  Locating Gaétan Dugas’s Views 353

  Instead of a relentless, immovable killer, an image perpetuated by much

  of the media coverage that followed the publication of Shilts’s book, we

  have witnessed the diffi cult struggles of a young patient during a tur-

  bulent time of fear, rumor, and changing information. Early sugges-

  tions that AIDS patients should abstain from sex would have jarred with

  Dugas’s pride— not shame— in a gay identity expressed through sexual

  connection. The evidence suggests that Dugas did continue to have sex

  through the spring and summer of 1983. Nonetheless, the contemporary

  medical and scientifi c uncertainties, the tumultuous rumors, the chang-

  ing ethical landscape of the North American communities he navigated,

  and the diffi culties he faced in his day- to- day life all make it diffi cult to

  maintain that to do so was the act of a sociopath. Supporting, as Dugas

  most likely did, a multifactorial explanation for his illness, he would have

  believed that it was as much up to others as to himself to reduce numbers

  of sexual partners and prevent reinfection with other diseases. The fact

  that he reduced his sexual contacts, became involved in AIDS Vancou-

  ver’s support efforts, and remained close to friends and family near the

  end of his life confi rms that there are a multitude of ways to view Gaé-

  tan Dugas’s experiences of the early North American AIDS epidemic.

  In the end, it is only by laying the notion of “Patient Zero” to rest that we

  can come close to appreciating what his own views may have been.

  Epilogue

  Zero Hour

  Making Histories of the North American

  AIDS Epidemic

  zero hour, n. 1. The time at which a military operation is scheduled to begin.

  2. The time at which a person feels at his or her lowest.

  3. The hour from which a new cycle of time is measured.1

  In gentle defi ance of the impending rain, a crowd steadily fi lled To-

  ronto’s Cawthra Square Park on the evening of June 24, 2014, gather-

  ing for the city’s thirtieth annual candlelight AIDS vigil. Out- of- town vis-

  itors attending the World Pride festivities on Church Street helped swell

  the crowd’s numbers, many carrying an umbrella in one hand and an un-

  lit candle in the other. As darkness fell, lights illuminated the triangu-

  lar concrete pillars of the city’s AIDS memorial, each one adorned with

  simple plaques engraved with the names of Toronto residents who had

  died in the epidemic— more than 2,700 in total, listed by year of death.

  The semicircular sweep of the memorial served as an amphitheater for

  the ceremony, embracing a small artists’ stage faced by hundreds of au-

  dience members. As the ceremony began at
9:00 p.m., a short but intense

  downfall of rain drew a blossoming of umbrellas, rainbow blooms which,

  with the end of the cloudburst, gradually withered and folded away. The

  event hosts— Barbara Hall, a former city mayor, and Henry Luyombya, a

  Ugandan- born Canadian citizen and AIDS activist— introduced a series

  1. Oxford English Dictionary Online, s.v. “zero hour,” accessed February 5, 2017,

  http:// www .oed .com/ view/ Entry/ 413123.

  Zero Hour 355

  of performers from around the world and refl ected on the global nature

  of the pandemic and its enormous human and social cost.2 As the art-

  ists completed their acts in succession, murmurs of disapproval spread

  through the audience, as some of those present were so moved by the

  performances that they forgot or ignored organizers’ requests to with-

  hold applause. More sanctioned audience participation came when can-

  dle lighters, individually and in small groups, appeared on stage and lit

  their candles, each reciting short lines into the microphone to illuminate

  their actions:

  I light this candle as a symbol of hope.

  I light this candle as a symbol of compassion.

  I light this candle as a symbol of understanding.

  I light this candle as a symbol of peace.

  I light this candle as a symbol of faith . . .

  Imagining a simple, traceable cause for disease epidemics is a human re-

  sponse that dates back many centuries in Europe and North America.

  Often coupled with the assumption of a short incubation period, humans

  have long believed that sickness can be traced to events and moments

  of contact with other individuals, especially those transpiring within

  their recent memory. When faced with the fearsome prospect of conta-

  gion, past peoples regularly ascribed malicious motives to those whose

  circumstances, traits, or behaviors had already marked them as differ-

  ent. The responses thrown up by the unexpected and devastating return

  of epidemic disease in the late twentieth century often revealed an un-

  canny resemblance to precedents established in the distant past. This

  book is intended as a contribution toward understanding the appeal of

  these responses— an intervention to clarify how and why, in the partic-