media narratives about the disease and what a fi lm about AIDS could
and should be. It existed on the edge of establishment yet, considering
its sheer inventiveness and originality, made remarkable strides into the
mainstream. The other took place resolutely within the system, part of
a long- established mechanism for resolving state crises and generating
standardized histories. While it yielded, in the fi nal offi cial history, a
foothold for a group that had for years been excluded to the fringes, it
consigned to the briefest of mentions an individual deemed, in the end,
to be “of no great signifi cance.”
Both productions bore witness: the fi lm to the style, intelligence, and
sophistication of activist groups such as ACT UP and to the very sexu-
ally active and loving gay men who had died; the inquiry, through the
CAS’s presence and the witnesses it brought forward, to those infected
and to the efforts of the fi rst responders to the epidemic. Both viewed
the involvement of the CAS as crucial to their success in advancing a
gay- friendly history of AIDS. And both mounted a sustained challenge
to a singular notion of “Patient Zero” as an individual representing dis-
ease origins and deserving of blame.
One need look no further than a book published in the same year as
Krever’s Final Report, and several years in the wake of Zero Patience, to
demonstrate the challenges faced by any attempt to rehabilitate Dugas’s
role as “Patient Zero.” Despite displaying an apparent awareness of the
blood inquiry’s investigations, the authors of The Canadian 100: The 100
Most Infl uential Canadians of the 20th Century would nominate Dugas
for inclusion in their book. As they explained, in Shiltsian tones, “This
Canadian, in a tragic, bizarre way, had an impact on the lives of untold
thousands around the world”— namely, “the thousands he directly or in-
directly infected with the killer virus.”101 With a similar degree of mis-
representation, the entry for patient zero in Mosby’s Medical Dictionary,
101. H. Graham Rawlinson and J. L. Granatstein, “79: Gaétan Dugas,” The Canadian
100: The 100 Most Infl uential Canadians of the 20th Century (Toronto: Little, Brown Can-
ada, 1997), 305, 307. The authors also misstate the year of Dugas’s birth as 1953, not 1952.
Ghosts and Blood 287
the defi nition used as a departure point for this book, was published for
the fi rst time the following year.
In both the fi lm and the inquiry, Gaétan Dugas featured signifi cantly—
and yet at the same time did not. Greyson’s fi lm was directly inspired by
the ways in which Dugas was represented in the media as part of the pro-
duction of Shilts’s history; it aimed to deconstruct the misunderstand-
ings that created this myth. Yet at the same time, the director chose to
rename the ghost of the fl ight attendant “Zero.” In the Krever inquiry,
Douglas Elliott and his colleagues repeatedly questioned public offi cials
about their knowledge of and interactions with Gaétan Dugas. However,
apart from a cursory mention, this strategy did not garner the fl ight at-
tendant’s name a place in the commission’s fi nal report. The commis-
sioner’s silence on the issue and on the fl ight attendant’s name— after de-
ciding that the matter was of no great importance to the history of AIDS
in Canada— demonstrated the idea’s inconsequence; but it also allowed
widespread allegations to smoulder away undisturbed.
Douglas Elliott deployed Dugas and the “Patient Zero” story as an
index case, literally to point to weaknesses in the Canadian public health
response to AIDS and a blood crisis, and to undermine any wholesale at-
tempts to import and impose an American- imagined history onto Cana-
da’s past. John Greyson reimagined a fi ctionalized ghost of the fl ight at-
tendant to critique the historical fi ctions put forward by Shilts and the
news media. In his fi lm, however, it was not possible for Gaétan Dugas
to become visible in the limited schemes of representation available for
people with HIV/AIDS in the early 1990s; in response, the fl ight atten-
dant’s ghost chose to disappear.
As Krever was writing the commission’s fi nal report, a revolution in
treatment was transforming the HIV/AIDS landscape in North Amer-
ica. Exciting results presented in Vancouver at the 1996 World AIDS
Conference demonstrated that HAART was proving astonishingly suc-
cessful in keeping the virus under control in the bodies of those infected
with it. On this treatment regimen, many patients who had previously
been close to death were restored to nearly full health. With many HIV-
positive individuals in North America subsequently able to live well on
medication, it would appear, from one perspective, that matters had
clearly moved on since the early 1990s. At that time, Greyson’s ghost
Zero wished to be allowed to disappear rather than be trapped within
the limiting discourses about AIDS available then. Perhaps, then— at a
288
chapter 5
distance of more than thirty years from the fl ight attendant’s death in
1984— it is possible to retell a story about Gaétan Dugas that does not
fall into the same traps of old?
On the other hand, critics have complained that the successes of
HAART have led to the collapse of community-
based organizing
around HIV, in favor of same- sex marriage and family rights. This de-
crease in activism has, they maintain, diminished support and increased
pressure on people living with HIV diagnoses: these individuals are now
viewed as bearing chief responsibility for the continued existence of the
epidemic. Such a focus on the visible, “irresponsible,” and more easily
regulated threats, as opposed to the inherently cocreated nature of sex-
ual risk behavior and the importance of sexual health education, sug-
gests that, in some ways, matters may not have changed signifi cantly
from the pre- HAART era.102 Perhaps, then, it is as important as ever
to revisit, by name, Gaétan Dugas’s historical experience of the early
AIDS epidemic. It may be true that Greyson’s fi lm demonstrates the
risks in examining Dugas’s experience with AIDS— any attempt to do
so will be trapped by preexisting narratives surrounding the disease.103
Yet, as the persistent misunderstandings about Dugas’s role as “Patient
Zero” can attest, doing nothing poses its own risks as well.
102. Whitaker, “Thirty Years of AIDS,”; Gary Kinsman, “Vectors of Hope and Pos-
sibility: Commentary on Reckless Vectors,” Sexuality Research and Social Policy 2, no. 2
(2005): 99– 105.
103. Knabe and Pearson, Zero Patience, 11.
Chapter Six
Locating Gaétan Dugas’s Views
“I am trapped in a dungeon where the guards wear white coats,” he pleaded. “Please res-
cue me.” — The character of Gaetan Dugas in And the Band Played On, 19871
I feel like an allien. — Gaétan Dugas, 19822
On a sunny but bitterly cold winter’s day in late January 1982, Gaé-
tan Dugas lef
t his apartment in downtown Montreal to post a let-
ter to Ray Redford, a former lover in Vancouver with whom he remained
friends. As he hurried through the snow- fi lled streets near the city’s
emerging eastern gay village, Dugas may have pondered the contents of
the message he was sending, in which he had refl ected on his recently
troubled state of health.
1. Shilts, Band, 412. Portions of the material presented in this chapter fi rst appeared
in Richard A. McKay, “Sex and Skin Cancer: Kaposi’s Sarcoma Becomes the ‘Stigmata
of AIDS,’ 1979– 83,” in A Medical History of Skin: Scratching the Surface, edited by Jon-
athan Reinarz and Kevin Siena, 113– 27 (London: Pickering and Chatto, 2013); Richard
A. McKay, “‘Patient Zero’: The Absence of a Patient’s View of the Early North American
AIDS Epidemic,” Bulletin of the History of Medicine 88, no. 1 (Spring 2014): 161– 94, pub-
lished by The Johns Hopkins University Press, doi:10.1353/bhm.2014.0005.
2. Gaétan Dugas to Ray Redford, 22 January 1982, Personal Papers of Ray Redford,
Vancouver (hereafter cited as Redford Papers); underline in original. For ease of read-
ing I have quoted exactly from Dugas’s letter and reproduced the original spelling and
grammatical errors without marking each one with sic. Dugas wrote his message in an el-
egant cursive on the backs of three postcards (each measuring 12.8 by 19.8 cm, or about
5 by 7 inches), explaining at one point, “Ray, today is so cold again that I dear not go out-
side— to get some paper to write. Sorry about these little cards but you would understand
if you be here.”
290
chapter 6
Dugas began his letter by complimenting Redford on his attractive
new partner. “Obviously all the hot men are on the West Coast. [He]
Has beautiful eyes & an inviting moustache. Really Handsome!!” He
continued— with words and spelling that hinted at his acquisition of
English as a second language— by providing his friend with an update
on his health and thanking him for his concern. “Well, my mind is fi nd-
ing peace again. Thank you for your encouraging letter— it is the best
medicine so far.— You are right I must upgrade my attitude towards a
full recoverage— but you know, there is always the storm that strike you
when at least less expected.”3
Evidently Redford had asked, in a previous letter, some questions
about “gay cancer” based on an article he had read. Dugas noted that he
could only have “gathered very few informations off that article,” but he
attributed this lack of knowledge to the generally poor level of research
about the disorder: “it was writing by the only sources they had!” He
added that he found taking vitamin A to be “very good, so I overdose
myself everyday.”4
Dugas thanked his friend for an invitation to visit him in Vancou-
ver, adding, “I will hurry to grow my hair— even if you think a look bet-
ter.” Having shaved his head in anticipation of chemotherapy, Dugas felt
self- conscious without his usually immaculately styled blond locks, a fact
which compounded his altered sense of self from being sick with cancer.
“I feel nude,” he wrote, “& too many people turn around when I walk in
the city.” He added, “I feel like an allien,” underlining this thought with
a single stroke of his pen.5
Evidently, he drew a warm comfort from their correspondence. “It is
always a great please to read you,” Dugas confi ded, “and look forward
to your letter.” He ended the message by noting that he was waiting for
the weather to improve so that he could visit his family who lived in a
small community on the outskirts of Quebec City; “but as I speak to
them regularly, my parents send you all their Best Wishes for this New
Year! Love & Affection [/] Gaétan oxo.”6
3. Ibid.
4. Ibid.
5. Ibid., emphasis in original.
6. Ibid. The photographs of Dugas and the quotations from his letter appear with the
generous permission of his two surviving sisters. Dugas’s sisters and Ray Redford have ex-
pressly asked for their privacy to be respected and for no media representatives of any kind
to contact them.
Locating Gaétan Dugas’s Views 291
“Patient Zero”: The Absence of a “Patient’s View”
As the previous chapters have established, much has been written about
Gaétan Dugas, his sexual exploits, and his controversial refusal to obey
the recommendations of public health offi cials in the early 1980s. Du-
gas, the man at the center of the “Patient Zero” story, was described by
journalist Randy Shilts— and later echoed by newspapers around the
world— as “the Quebeçois [ sic] version of Typhoid Mary.” The early date
of his infection has been invoked repeatedly by his critics, who allege
that, as the sexually active “Patient Zero,” he must have infected a sig-
nifi cant number of people. More than one physician accused him of be-
ing a “sociopath,” and his reported refusal to give up sex— in the face
of allegedly strong evidence suggesting the sexual transmissibility of an
AIDS- causing agent— is still cited as proof of a profound disregard for
social responsibility.7
In assessing the appropriateness of this judgment, however, it is worth
considering how diffi cult it would have been to be diagnosed with a dis-
ease whose origins and mode of transmission were unclear, whose suf-
ferers drew heavy moral condemnation, and which—
as it became
ominously evident— carried a high mortality rate. Furthermore, the ac-
cusations have been based on testimony that is increasingly viewed as
suspect or, at the very least, one- sided. As we have seen, And the Band
Played On, the main source for virtually all subsequent discussions of
Dugas, has drawn criticism for its reliance on rumor and hearsay and for
its overimaginative reconstruction of the thoughts of the people it por-
trays, particularly those of Dugas. Cultural theorists, including Douglas
Crimp and more recently Priscilla Wald, have criticized the way by which
Dugas came to be categorized as “Patient 0” by the US Centers for Dis-
ease Control (CDC) and “Patient Zero” by Shilts.8 Crimp focused on
Shilts’s construction of Dugas as “the book’s arch- villain,” while Wald
questioned the scientifi c validity of the evidence underlying Dugas’s
7. At the 2008 Annual Meeting of the American Association for the History of Medi-
cine, for example, the author met a psychiatrist who reported using Dugas’s case in teach-
ing as a “classic” example of sociopathic behavior, following the views of Friedman- Kien,
Conant, etc.
8. Crimp, “Promiscuity,” 237– 71; Crimp, “Miserable Failure,” 117– 28; Wald, Conta-
gious, 213– 63.
292
chapter 6
transformation into “Patient Zero.” They agreed that Shilts’s portrayal
of Dugas was highly problematic; both also gave favorable mention to
Zero Patience (1993), John Greyson’s agitprop musical fi lm, discussed
in chapter 5. It is worth noting that uncovering new evi
dence about the
fl ight attendant’s lived experience, as one of the fi rst diagnosed cases of
AIDS- related Kaposi’s sarcoma (KS), was not central to Greyson’s argu-
ment (nor was it a priority for Crimp or Wald). Thus, although these crit-
ics were infl uential in complicating the fl ight attendant’s status as “Pa-
tient Zero,” they did not add any substantially new information to the
details about Dugas initially provided by Shilts in his book.
The historian Roy Porter, writing in 1984 as fears of the newly rec-
ognized epidemic took hold, acknowledged the diffi culty of access-
ing “the patient’s view” in a history of medicine focused on physicians.
Nonetheless, he challenged historians to rediscover how “ordinary peo-
ple in the past have actually regarded health and sickness.”9 He noted
that critics of patient- focused histories would point out the methodologi-
cal obstacles— namely, that it was predominantly physicians who left re-
cords, effectively rendering the patients mute.10 Furthermore, because
access to medical records is so often restricted to protect patient privacy,
modern patients’ voices are, in a sense, doubly muted.
Medical accounts of the AIDS epidemic have made it clear that, af-
ter several decades of growing confi dence about their ability to treat
infectious diseases, physicians experienced the appearance of the fi rst
recognized cases of AIDS in the late 1970s and early 1980s as a signifi -
cant paradigm shift.11 Fierce, interconnected debates ensued at both the
expert and lay levels about the causes of the syndrome. These debates
would characterize a period of tense uncertainty and fear that lasted
until the ascendance and eventual consolidation of a new paradigm in
the spring of 1984, one which held that a previously unknown retrovirus
was the cause of AIDS.”12 The uncertainty that such discussions raised
for members of the lay public recalls the historical example of “Typhoid
Mary” Mallon, though for different reasons than Shilts’s comparison im-
9. Porter, “Patient’s View,” 176. Porter’s call has more recently been extended by the
literary scholar John Wiltshire, “A Patients’ History of Medicine,” Clinical Medicine 7
(2007): 370– 73.
10. Porter, “Patient’s View,” 182.
Patient Zero and the Making of the AIDS Epidemic Page 49