Patient Zero and the Making of the AIDS Epidemic
Page 58
its ability to stigmatize remains strong, particularly when used by other
physicians.169
Adjustments
Meanwhile, Dugas attempted to deal with the annoying consequences
of recurrent opportunistic infections. Stewart remembered the fl ight at-
tendant’s propensity for taking vitamins, an immune system treatment
touted throughout the gay press in the early 1980s as a possible pallia-
tive aid for AIDS patients, and a regimen adopted by other early per-
sons with AIDS (PWAs). In addition, Dugas was having throat diffi cul-
ties, and so he obtained a hand mixer to make soothing milk shakes.170 He
remained close with other members of his cohort of early “gay cancer”
patients from Friedman- Kien and Laubenstein’s practice and grieved
on learning that one of his friends had died.171 Returning to work for a
few months beginning in summer 1983 also meant interacting with col-
leagues and passengers in the immediate aftermath of a widely publi-
cized scientifi c article that speculated that AIDS could be transmitted
through casual contact.172 At least one colleague chose not to fl y with Du-
gas for fear that he might be contagious or spit in passengers’ food.173
Another remembered attending a recertifi cation session where the two
had to share a mannequin to practice artifi cial respiration. Recalling the
uncertainty over whether an AIDS- causing agent might be easily trans-
mitted via the mannequin, the woman made sure to take her turn fi rst.174
169. Jenny L. Donovan and David R. Blake, “Patient Non- Compliance: Deviance or
Reasoned Decision- Making?” Social Science and Medicine 34, no. 5 (1992): 507– 13; Jer-
emy A. Greene, “Therapeutic Infi delities: ‘Noncompliance’ Enters the Medical Literature,
1955– 1975,” Social History of Medicine 17, no. 3 (2004): 327– 43.
170. Stewart, recording C1491/19, tape 1, side A. Dugas mentions that he “overdose[d]”
on these in his January 1982 letter to Redford. In the absence of effective treatment, the
gay press emphasized the importance of vitamins; see, for example, Donald E. Dickenson,
“Your Immune System and Nutrition,” Advocate, January 20, 1983, 33– 41.
171. Redford, “Reminiscences,” Epilogue.
172. See also Tiemeyer, Plane Queer, 180– 83.
173. Female fl ight attendant, e- mail to author, July 19, 2008.
174. Female fl ight attendant to author, incident related in recording C1491/26, tape 1,
side B.
Locating Gaétan Dugas’s Views 343
For someone as socially outgoing as Dugas had been, and who valued
his physical appearance, the appearance of a disfi guring KS lesion on
his face was signifi cant. One work colleague recalled that “his appear-
ance was really important to him, and that’s one of the things that was
so tragic about the disease was that as soon as he started having [visible
lesions] he isolated himself, he went home, he didn’t stay in touch with
anyone.” She felt that “there were a lot of people that worked with him
that would have loved to reach out and support him when he was ill, and
he didn’t want anyone to see him.”175 Bisson remembered the time when
he discovered the lengths that his friend would feel compelled to take
to conceal the lesions: “I remember helping him with his makeup at one
point . . . I just said, ‘You know your rouge is just a little too much here,’
so I brushed it off and saw . . . what he needed to deal with . . . once this
had kind of taken over.” Bisson could not blame his friend for wanting
to cover up his lesions with makeup. “I mean,” he refl ected, “everybody
wants to present their best face.”176
It seems highly likely that, in light of the negative attention he drew,
Dugas experienced a sense of persecution during this time. He was being
pressured to stay out of sight and away from the beaches, bars, and bath-
houses that would normally have formed key parts of his social support
system, not to mention being asked to abstain from the sexual activity
which had for years been a key source of fulfi llment.177 Furthermore, he
apparently felt that he could not escape from the CDC’s apparently all-
seeing gaze. This sense of feeling tracked by the CDC was likely com-
pounded when members of the organization contacted him to arrange
a plasma donation in summer 1983.178 Stewart recalled that “the CDC
175. Dunn, Watson, and Miller, recording C1491/26 (Watson quoted at tape 1, side A).
Dugas’s friend and colleague, Desiree Conn, had a similar recollection about another Air
Canada fl ight attendant with visible KS lesions. She suggested that he and Dugas may have
been “very, very self- conscious of it, and they didn’t want anybody to see them like that be-
cause they were such good- looking men”; Conn, recording C1491/34, tape 1, side A.
176. Bisson, recording C1491/38, tape 1, side A.
177. Gaynor and Metcalfe, recording C1491/35 (observation made by Gaynor at tape 1,
side A); Levaque, recording C1491/47, tape 1, side B.
178. In fi nalizing the Worobey et al. collaborative Nature paper in 2016, it became ap-
parent that Shilts had provided a misleading date for this donation, which he included with
events from May 1982; Band, 157. The journalist’s notes from his interview with Harry
Haverkos illuminate the source of this error, which points to a vulnerability of the journal-
ist’s data- gathering approach, one which was heavily reliant on interviews. The CDC inves-
tigator initially mentioned “Patient Zero” in the context of the challenges scientists faced
344
chapter 6
scared him. They were acting like he was Typhoid Mary . . . that’s what I
gathered from how he felt about it, and he didn’t want anything further
to do with them. He wanted to live in Vancouver, he wanted to be quiet,
and the thing is that he was not cutting a sexual swath through the local
population. That is just not true. ”179
There is evidence to suggest that the fl ight attendant substantially
curtailed his sexual activity while in Vancouver. Stewart contended that
Dugas slowed down over time, echoing the guidance that someone with
a compromised immune system had more to fear from a casual liaison
than his healthy partner:
Gaétan was aware that if he had sex with strangers he would pick up oppor-
tunistic infections that would be dangerous to himself. And that’s not a big
stretch right? Like . . . if you keep coming down with thrush . . . sooner or
later you put two and two together and you think, “Well, Christ, you know,
I had fi ve guys at the tubs last night, maybe that has something to do with
it.” And he was sick and tired of being treated for opportunistic infections.
It’s not fun. . . . We were the generation that if you got the clap, well, you
know, that was just a series of shots, and you had to possibly restrict your-
self for six weeks but, the stuff that he was dealing with was not the clap, you
know, it was worse and more annoying— like fungal infections in your toe-
nails and stuff like that. He just got sick of dealing with it, and he just essen-
tially stopped doing that stuff.180
In an
unoffi cial capacity, Stewart also assisted Dugas’s efforts to re-
direct his sexual energy with the use of a new technological develop-
ment: the videocassette recorder. Prices had dropped suffi ciently in
recent years to make this technology newly affordable for the general
public. This shift also opened up a new market for pornographic home
videotapes. Stewart recognized that it would likely be diffi cult for peo-
ple with AIDS to face being denied any sexual outlet, and he encour-
in establishing viable cultures of virus— “trying to grow LAV”— in late 1983 and early
1984. Haverkos then moved backwards in time, briefl y, to 1982 to provide context about
the Los Angeles cluster study, before continuing with his account of the man’s later plasma
donation. Shilts did not catch this time switch as he wrote his notes; “Harry Haverkos,”
inter view notes, p. 4, folder 29, box 33, Shilts Papers.
179. Stewart, recording C1491/19, tape 1, side A; emphasis on recording.
180. Stewart, recording C1491/19, tape 1, side B.
Locating Gaétan Dugas’s Views 345
aged Dugas’s pornography consumption by loaning him his own video-
tapes. Stewart then provided this service to later PWAs through AIDS
Vancouver, all as part of a multifaceted approach to reducing casual sex
and the possible chance of transmission. In this regard, too, Dugas was
like other early men with AIDS, looking for creative ways to fi nd other
sexual outlets.181
Even if Dugas decreased his sexual activity dramatically during 1983,
his visible presence in the community spawned rumors that concerned
AIDS Vancouver. The organization’s worries about Dugas were cap-
tured in Shilts’s book, which noted that, less than a month following
their informational forum, its board members wondered, “Why would
anyone do what Gaetan was doing?”182 Amid plans for incorporation,
promotional activities, fund- raising, and volunteer concerns, the April 4,
1983, meeting minutes end with a fi nal point regarding “AIDS victims”:
“There was some discussion about what to do regarding AIDS victims
such as Gaetan. Our ‘hands are tied’ legally. Instead, it is necessary to
change the attitude. Counsellors should be available to those who need
them. Michael [Maynard] will contact Gaetan.”183 While one might sur-
mise that the necessary “change in attitude” would be directed at Du-
gas, Stewart later interpreted the meeting minutes differently, remem-
bering that each sentence of the minutes represented a succinct précis of
lengthy discussions. He recalled that it was the attitude of the rest of the
community toward “AIDS victims” that needed to be changed, that they
could not simply bully a person with AIDS into staying at home.
Minutes from the meeting of June 20, 1983, make another reference to
Dugas, though this time a bit more discreetly through the use of his ini-
tial. By this point the organization had grown somewhat and was seeking
181. See, for example, Philip Lanzaratta, “Surviving AIDS,” Christopher Street, Octo-
ber 1984, 35. Also, Helen Schietinger, a nurse at the San Francisco KS Clinic, described to
a reporter an evolution in acknowledging PWAs’ need for sexual expression, as opposed to
widespread medical advice in 1982 to halt all activity; see Michael Helquist, “What to Ex-
pect at the KS Clinic,” Coming Up! March 1983.
182. Shilts, Band, 262.
183. The minutes of this meeting were not included in the Krever commission’s public
evidence, possibly because they named a person with AIDS. The copy which Shilts gath-
ered during his hurried 1986 Vancouver visit is available, however, in his professional pa-
pers; “Meeting: April 4, 1983,” AIDS Vancouver meeting minutes, folder 23, box 34, Shilts
Papers.
346
chapter 6
to fi ll what was quickly emerging to be a gap in the provision of support
services and education. It had a number of subcommittees, and there
was a team devoted to supporting “AIDS victims” and their friends. In a
discussion regarding the volunteer support group, Bob Tivey, the organi-
zation’s counselor, “expressed concern that G., an AIDS victim, has re-
turned to Vancouver and has been seen in circulation. The question is:
How do we get him out of circulation given that there is no legal quar-
antine option?” One committee member suggested a “campaign of per-
suasion,” though this approach was deemed “to be futile if not actually
counterproductive, since it would reinforce G.’s paranoia and sense of
persecution.” Announcing the man’s name in public would put AIDS
Vancouver at risk for libel. “The most credible alternative,” the group
decided, “was felt to be an attempt at diversion by appealing to G.’s per-
sonal sense of responsibility to the community.”184
This fi nal option was eventually chosen and proved to be effective.
Dugas was approached and recruited into a peer education scheme— a
“Buddy program” based on models used at other North American
AIDS organizations— in which he took part. When the controversy over
the “Patient Zero” story erupted in 1987, Michael Welsh, the support
coordinator for AIDS Vancouver in 1983, defended Dugas’s name, re-
calling that Gaétan had “frequently offered support to other sufferers.”
Furthermore, “he tried to educate people about AIDS. He was always
very sociable— he brought a lot of levity to the experience and helped
to make it less negative.”185 More recently, Welsh recalled a walk he
took with Dugas and some other AIDS support group members along
the city’s seawall around Stanley Park on a beautiful day in the sum-
mer of 1983. The support group meetings at this point were informal and
small— the mix of people with AIDS, support workers, and a facilita-
tor totaled fewer than a dozen individuals— and often took place in peo-
ple’s downtown apartments in the city’s West End. On this day, with a
comment similar to Dugas’s friend Richard Bisson, Welsh pointed out a
smudge that he saw on Dugas’s nose, before realizing that it was a lesion
covered with makeup. “Oh!” the fl ight attendant responded, with grace
and quick humor, “It’s not what you think it is!” To Welsh, this exchange
184. “Meeting: June 20, 1983,” minutes, in AIDS Vancouver: Exhibits of the British
Columbia Hearings, vol. 49, tab B21.
185. Welsh quoted in Anne Steacy and Lisa Van Dusen, “‘Patient Zero’ and the AIDS
Virus,” Maclean’s, October 19, 1987, 53.
Locating Gaétan Dugas’s Views 347
summed up Dugas’s easy nature in that environment: very much part of
the group and willing to share his experiences.186
End of Life, Death, and Remembrance
Stewart had introduced Dugas to an ex- boyfriend of his, the male model
with whom, Shilts wrote, “Gaetan had managed to nurture a torrid love
affair.”187 Since Stewart and his ex lived in adjacent apartments and were
still friendly, Stewart would often see Dugas when the French Cana-
dian came to visit his new lover. The model also sold marijuana, which
his new partner enjoy
ed smoking, and Dugas would often come over to
spend time and chat with Stewart as he relaxed.
Stewart made use of Dugas’s unusually long experience of living with
his condition by asking him questions about how he had dealt with var-
ious AIDS- related issues. Stewart thought that he was the only mem-
ber of the AIDS Vancouver board who could speak comfortably with
Dugas, and that Dugas was a valuable resource in terms of his experi-
ence as a patient. Through this peer sharing, Dugas was perhaps most
able to help other people with AIDS. As Stewart and Redford each re-
called, in view of his declining health, Dugas told them that he had made
arrangements for an early death. He had designated the recipient of his
Air Canada pension and arranged for the cleanup of his apartment as
well as the posthumous distribution of his belongings. His advice was
useful to Stewart, who was beginning to counsel an increasing stream
of people with AIDS, many of whom were receiving their diagnoses at
a very late stage of the disease. This problem was echoed elsewhere in
the unfolding early history of AIDS in North America, where diagnos-
tic limitations and an incomplete understanding of the natural history
of the disease resulted in many people with AIDS being diagnosed and
then dying within weeks.188 Stewart later explained one of AIDS Van-
186. Michael Welsh, telephone interview with author, March 22, 2013.
187. Shilts, Band, 439. Readers may wish to compare this description of Dugas’s “torrid
love affair” with the article Shilts himself wrote in May 1983 about the decrease in partner
numbers and resurgence of monogamous relationships among gay men in San Francisco in
response to AIDS; Randy Shilts, “How AIDS Is Changing Gay Lifestyles,” San Francisco
Chronicle, May 2, 1983, 1.
188. Douglas Elliott also emphasized the rapid decline of many individuals diagnosed
in this period; Elliott, recording C1491/39, tape 1, side B.
348
chapter 6
couver’s less- publicized efforts to assist those who progressed rapidly to-
ward death, which he credited to Dugas:
AIDS was taking people very suddenly in those days, right? And so, one of
things that we ended up doing a lot of was, I ended up with a sort of a bucket
of house- keys that people would deposit with me and say, “OK, you know, if I