Patient Zero and the Making of the AIDS Epidemic
Page 42
patient in North America. Although Burton wishes to have Zero pro-
claim his innocence on video, they are unable to catch Zero on tape for
longer than a few seconds. At this point fate intervenes: the museum’s
director, Dr. Placebo, insists on broadcasting Burton’s original slanted
video montage, saying that, in any case, he preferred that version of the
story. The distorted myth of Patient Zero is subsequently disseminated
wholesale via the media. Riled by the museum’s willful misinformation,
and singing that “We’ve got zero patience for accusations, zero patience
for blame,” ACT UP members stage a protest; they rearrange Burton’s
256
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Hall of Contagion exhibit to evoke a more patient- centered health- care
history. Ultimately, to Burton’s sadness and dismay, Zero wishes to be
allowed to disappear. Reluctant to let his otherworldly lover depart,
Burton fi nally acquiesces and helps Zero short-
circuit the museum’s
“Patient Zero” display. Zero is at last able to return to his limbo- like
existence, freed from the never- ending attempts to frame his existence
within straitjacket- like AIDS narratives.26
Greyson later expressed his fondness for the fi lm’s lyrics and the ideas
and spirit of the time it captured. At the same time, despite being pro-
duced on a much greater budget than his previous experimental video
work, the production’s resources were roughly a third of what he needed
to realize his vision and thus constrained the production quality.27 Re-
views were mixed. A Quebecois reviewer in Montreal defi ned the fi lm
as “impossible to classify” and “a unique experience.”28 An Anglophone
critic noted that despite it being “a movie that you really want to like,”
Zero Patience was “disappointing” and “often appear[ed] amateurish.”
At the same time he acknowledged that the fi lm was laudable for its po-
litical message and “admirably uncompromising” in its depiction of gay
life— with “such in- your- face segments as a duet performed by two an-
imated singing anuses”— and could not, like Jonathan Demme’s fi lm
Philadelphia, be accused of sanitization.29 The timing of the fi lm’s re-
lease and its originality compelled audiences and critics to pay attention.
As Greyson recalled:
It was released the same week as Philadelphi a in theatres and so it imme-
diately had . . . the most brilliant juxtaposition imaginable because the crit-
ics had a great hook, you know, on the one hand Philadelphia, four- hanky
weepie, on the other Zero Patience, and so . . . it almost forced the critics to
take a stand in terms of politics, as opposed to simply around fi lm. And so
while most critics were pretty hard on the fi lm in terms of its craft, there was
an acknowledgment that it was stirring the pot, intervening, saying something
that hadn’t been said before in a semi- mainstream context.30
26. On this point, see Knabe and Pearson, Zero Patience, 11, 150.
27. Greyson, recording C1491/41, tape 1, side A.
28. Éric Fourlanty, “Zero Patience,” Voir, March 10, 1994. My translation from the
French original: “inclassable” and “une expérience unique . ”
29. Scott Steele, “AIDS, the Musical: Zero Patience,” Maclean’s, March 7, 1994, 60.
30. Greyson, recording C1491/41, tape 1, side A; emphasis on recording. Interest-
ingly, Douglas Elliott recalled the cathartic and emotional response he had each time he
Ghosts and Blood 257
Though less accessible to many mainstream audience members by
virtue of its intellectually challenging approach and niche cinema dis-
tribution, Zero Patience benefi ted from the near simultaneous release
of two Hollywood contributions: the movie Philadelphia and the HBO
television miniseries of And the Band Played On. Zero Patience held its
main premiere in Toronto during the Festival of Festivals (precursor to
the Toronto International Film Festival) on September 11, 1993. By co-
incidence, this was the same day the TV miniseries of Shilts’s book was
broadcast on cable television, an adaptation in which the fi gure of “Pa-
tient Zero” played only a small role.31 Shilts, possibly having been stung
by criticism from AIDS activists, had insisted that the TV miniseries
minimize the role of the fl ight attendant.32
In addition to showing the fi lm at various North American gay fi lm
festivals, Greyson sought to make use of a network of AIDS organiza-
tions to promote the fi lm. In a letter to the fi lm’s marketing coordinator,
he noted that “the range and scale of AIDS groups across the country
is breath- taking” and that there would be a symbiosis to the relation-
ship between the fi lm distributor and these groups: “They’ll want to
work with us as much as we’ll want to work with them.”33 In discuss-
ing the possibility of gala fund- raising evenings, he distinguished, how-
ever, between AIDS service organizations and his preferred activist or-
ganizations. Given the relative success of the former in raising fi nancial
contributions, “Groups like ACT [the AIDS Committee of Toronto] and
Casey House [an organization providing palliative care for people liv-
ing with AIDS] don’t need Zero Patience,” he wrote.34 Greyson wished
to preserve a space for dissident voices— for people living with AIDS,
for critics of the health- care system, for activists in general— amid what
viewed Philadelphia, identifying strongly with Denzel Washington’s character of a lawyer
who knew that his client with AIDS would soon die; Elliott, September 6, 2008, recording
C1491/39, tape 2, side A.
31. Philadelphia, directed by Jonathan Demme (TriStar Pictures, 1993; Burbank, CA:
Columbia TriStar Home Video, 1997), DVD; And the Band Played On, directed by Roger
Spottiswoode (HBO Pictures, 1993; Warner Home Video, 2004), DVD.
32. Deborah Hastings, “Shilts Says Film Version of His Book Still Alive,” Indiana
Gazette, October 30, 1991, 31.
33. John Greyson to Virginia Kelly, 4 May 1992, fi le: Zero Patience— Distribution,
Acc. 2003– 007– 05.0483, Greyson Collection.
34. John Greyson to Virginia Kelly, undated, fi le: Zero Patience— Distribution, Acc.
2003– 007– 05.0483, Greyson Collection.
258
chapter 5
he and others saw as the institutionalization and professionalization of
AIDS. “AIDS runs the risk,” he wrote in a November 1991 outline for
the fi lm, “of becoming as respectable as cancer: an acceptable tragedy,
and a multi- billion dollar industry that doesn’t really cure anyone. Alter-
native theories, therapies, and treatments are being suppressed because
they threaten not just the profi t margins of the pharmaceuticals, but the
very authority of the medical establishment.”35 The resulting marketing
plan would enthusiastically describe “the support and communications
network spawned by the AIDS crisis” as “formidable and wide reach-
ing,” and it highlighted the need to work through the Canadian AIDS
Society “to reach primary and secondary audiences.”36 Also, the open-
&nbs
p; ing gala held in advance of the fi lm’s general release was a benefi t screen-
ing for the activist group AIDS Action Now! and Inside Out, a collective
which organized an annual gay and lesbian fi lm festival (see fi g. 5.1).37
By the 1990s, AIDS service organizations had become relatively
mainstream, no longer considered by many as activist in a political sense.
A decade earlier, however, the fl edgling efforts of these organizations
would have been considered essential foundational work, given their ac-
tive campaigning against the status quo, amid a widespread lack of insti-
tutional response to AIDS, and the media’s often discriminatory depic-
tion of those with the disease. It is to this earlier group of AIDS workers
that the discussion now turns.
The Krever Inquiry
The Krever inquiry’s primary investigative phase stretched from early
1994 until the end of the following year. During this initial stage, the
commissioner, his counsel, and teams of lawyers traveled across the
country to hold regional hearings from Vancouver to St. John’s.38 They
listened to many of the Canadians who had been infected with HIV and
35. “Zero Patience,” outline, 12 November 1991, 1, fi le: Zero Patience OAC— Canada
Council, Acc. 2003– 007– 05.0487, Greyson Collection.
36. VK & Associates, “Positioning of Project and General Marketing Approach,”
June 30, 1992, 3, fi le: Zero Patience— Funding Application, Acc. 2003– 007– 05.0485, Grey-
son Collection.
37. See the promotional advertisement for the fi lm “Zero Patience [/] A John Greyson
Movie Musical,” Xtra! [Toronto], February 18, 1994, 2.
38. For a comprehensive summary of the inquiry’s schedule, see Horace Krever, “Ap-
Ghosts and Blood 259
Figure 5.1 Promotional advertisement for Zero Patience, 24.8 × 18.9 cm, reprinted from
Xtra! February 18, 1994, 2. Courtesy of the Canadian Lesbian and Gay Archives, To-
ronto. © Zero Patience Productions. Used with permission from John Greyson, and from
Ken Popert on behalf of Pink Triangle Press. This poster, depicting the actor Norman
Fauteux in the role of the ghost Zero, also illuminates the connections Greyson had with
AIDS activism work in Toronto, for which this advance gala was to be a fund- raiser. The
fi lm’s producers relied on such activist networks as a way of fi nding audiences and promot-
ing the fi lm.
hepatitis C through infected blood and blood products, as well as the
regional representatives of the organizations whose safety and regula-
tory measures were under investigation. The inquiry’s second investiga-
tive phase began in early 1995 at the commission’s Toronto headquar-
ters. There, national experts testifi ed about their roles in Canada’s blood
system during the 1980s, and roundtables of experts discussed current
issues facing the blood system.
While the Krever inquiry was chiefl y concerned with the events and
(in)actions leading to an HIV- and hepatitis C– infected blood system,
the motives of the different parties granted standing varied consider-
pen dix I,” in Krever, Commission of Inquiry, 3:1136– 38; and Trebilcock and Austin, “Lim-
its,” 25– 28.
260
chapter 5
ably. Having been permitted to represent the Canadian AIDS Society,
Douglas Elliott believed that the inquiry offered Canadian gay commu-
nities their only opportunity to document offi cially their early responses
to AIDS in the face of governmental inertia and widespread homopho-
bia. During the hearings he advanced several arguments contesting the
widely held view that these communities had perpetuated the epidemic’s
spread. Among the accepted truths that Elliott challenged was the by
then often- told story of “Patient Zero,” part of his wider strategy to chal-
lenge the history of the lesbian and gay community’s response put for-
ward by Randy Shilts. This widely read perspective clashed with his own
personal recollection of the early response to AIDS in Canada.
In July 1983, a twenty- six- year- old Douglas Elliott was articling for
Bassel, Sullivan and Leake, a Toronto law fi rm, having recently grad-
uated from the University of Toronto Law School. One day, his lover
passed on news of a disturbing phone call he had received from a friend
and former sexual partner, who had been working in New York City as
a model: “‘Darrell just called and you know this AIDS thing, he’s got it,
and he doesn’t have any health insurance, so he’s coming back to Can-
ada to die.’ And that was one thing we knew for sure about AIDS at
that time was the average time from diagnosis to death was six months.
Everybody who got it was dying.”39 Elliott had been following news of
the disease ever since initial reports of a “gay cancer” had left him and
others deeply skeptical. Over time, though, this skepticism gave way to
uncertainty, then apprehension, about “a real medical threat.”40
Having a friend diagnosed with the condition made the threat even
more apparent. Elliott, realizing he needed more detailed information
to assist Darrell, sought guidance from the newly formed ACT, which
had recently held a press conference to inform the public that it was or-
ganizing a response to the condition.41 Elliott was disconcerted by what
he saw: “I’m looking around, and they had these crappy offi ces over top
of the Kentucky Fried Chicken, dirty and grimy and a few sticks of fur-
niture, and I’m thinking, ‘This is the frontline of defence against this ter-
rible epidemic? You’ve got to be joking.’” Elliott and his partner became
involved with ACT while they juggled looking after their dying friend
and Elliott’s studying for his upcoming bar exam. Darrell died in 1984;
39. Elliott, August 27, 2008, recording C1491/39, tape 1, side B.
40. Ibid.
41. Silversides, AIDS Activist, 54.
Ghosts and Blood 261
soon after, Elliott was elected to ACT’s fi rst board of directors and con-
tinued his work with the group, becoming one of the earliest lawyers in
the country to be involved with AIDS issues. He recalled that his pro-
fessional background made him stand out from other members of the
board: “It was a pretty laid- back, kind of lefty grassroots organisation
and meeting in a big, open, grimy room . . . with the smell of Kentucky
Fried Chicken permeating the air, and I’m the only guy in a suit, and
they say, ‘Well, you should be on the executive, we need guys in suits for
when we meet politicians.’”42
In the fi rst months after its foundation in mid- 1983, ACT worked hard
to address what its members viewed as the media’s propensity for “blam-
ing the victim for the illness,” monitoring and responding to media re-
ports displaying strong bias.43 Members of the organization also pro-
tested vigorously against the gay community’s lack of representation on
the nascent National Advisory Committee on AIDS (NAC- AIDS). This
expert committee had been appointed to advise the federal minister of
health, Monique Bégin, and was initially coordinated by the director
&
nbsp; general of the Laboratory Centre for Disease Control (LCDC), Alastair
Clayton.44 Elliott recalled the “strained” relationship between the two
organizations early in their history and that “one of our big bones of
contention in those years was that the NAC- AIDS would not have an
openly gay community representative on their board.” He remembered
the derision with which his fellow ACT members viewed this situation:
All you have is a bunch of public health offi cials, all of the people who are do-
ing nothing about AIDS [ laughing wryly], all of the people in white lab coats
that are sitting around reading CDC reports and things like that and think-
ing great thoughts— they’re the people that are sitting around the table. The
people that are actually doing something about AIDS, who are on the front-
lines and experiencing AIDS and making a difference with respect to educa-
tion and stuff like that— they’re the people in the community organizations
42. Elliott, August 27, 2008, recording C1491/39, tape 1, side B.
43. ACT’s early activities are outlined in its meeting minutes and AIDS Activities Bul-
letins, printed from August 16, 1983, onward: “Minutes of the General Meeting,” Octo-
ber 18, 1983, 1, attached to AIDS Activities Bulletin, no. 6, October 31, 1983. The ACT Li-
brary closed in the spring of 2010, though as of July 2014 the minutes and bulletins were
still held at the organization’s head offi ce in Toronto.
44. Charlotte Montgomery, “Begin Appoints Advisers to Study AIDS,” Globe and
Mail [Toronto], August 16, 1983.
262
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that you’re shunning. . . . We have expertise to share. You want to communi-
cate with the gay community and you wouldn’t know a gay person if they bit
you in the ass.45
Elliott remained involved with ACT’s board through 1986, the year
when the second national AIDS conference was held in Toronto. At this
meeting, representatives from AIDS service organizations from across
the country fi nalized plans to found the Canadian AIDS Society (CAS).
The society developed as a national organization to help overcome the
geographic distance separating the largely gay- run community AIDS or-
ganizations in various far- fl ung Canadian cities, to share information,
and to engage with the federal government as a national body represent-