Patient Zero and the Making of the AIDS Epidemic
Page 61
reporters, confronted with the full force of a media narrative searching
for its main villain. “I don’t believe that. I don’t know what to think.”22
A similar response came in 2014 from the Guinean father of a dead two-
year- old boy. The child was identifi ed by name in the media as “Patient
Zero”— “the fi rst traceable person to have contracted the disease”— of
the Ebola outbreak that ravaged several western African countries in
2013 and 2014.23 While grieving the deaths of his son, daughter, and
18. Moss, recording C1491/09, tape 1, side B; emphasis on recording.
19. Barnes, “Targeting Patient Zero,” 49– 71.
20. See Treichler, Theory in an Epidemic, 213.
21. André Picard, interview with author, Toronto, September 4, 2008, recording C1491/
42, tape 1, side B, BLSA.
22. María Hernández quoted in Marc Lacey, “From Édgar, 5, Coughs Heard Round
the World,” New York Times, April 29, 2009, A1.
23. Adam Withnall, “Ebola Outbreak’s ‘Patient Zero’ Identifi ed as a Two- Year- Old
362
Epilogue
partner, the man endured months of probing photographs and questions
from international journalists seeking to commoditize the epidemic’s
“ground zero” and fi rst known case. “It wasn’t Emile that started it,” he
explained through an interpreter, pushing back against the blame which
infused the explanations for the outbreak’s emergence. “Emile was too
young to eat bats, and he was too small to be playing in the bush all on
his own.”24 As long as this uncritical reporting formula remains unchal-
lenged, it is a foregone conclusion that relatives of early cases in future
outbreaks will be hounded in their grief.
* * *
. . . I light this candle as a symbol of for all those who have died of HIV/
AIDS so that we may honor them.
I light this candle as a symbol for all those affected by HIV/AIDS so that we
may remember them.
I light this candle as a symbol for all those living with HIV/AIDS,
particularly long- term survivors, so that we may celebrate them.
Composing this epilogue, and structuring it explicitly around a recent
instance of ceremonial remembrance, offers me an opportunity to re-
fl ect on my personal experience of writing a history of the North Ameri-
can AIDS epidemic. The process from conception to completion of this
book, like many works of history that begin in graduate study, has lasted
more than ten years, during a period spanning the third and fourth de-
cades since the epidemic’s initial recognition in 1981. I have been on this
journey from the ages of twenty- seven to thirty- eight (and counting), and
much longer if one sets the zero hour from my false- positive HIV diag-
nosis in 2000. The journey has seen me move between North America
and Europe. At several points in my research, as I visited San Francisco,
Boy from Guinea Named Emile Ouamouno,” Independent [London], October 28, 2014,
http:// www .independent .co .uk/ news/ world/ africa/ ebola - outbreaks - patient - zero - identifi ed
- as - a - two - year - old - boy - from - guinea - named - emile - ouamouno - 9823513 .html.
24. Misha Hussain, “Hunger and Frustration Grow at Ebola Ground Zero in
Guinea,” Reuters, March 3, 2015, http:// uk .reuters .com/ article/ us - health - ebola - guinea
- village - idUKKBN0LZ1R220150303; Suzanne Mary Beukes, “Ebola in Guinea: Find-
ing Patient Zero,” Daily Maverick [Johannesburg, South Africa], October 27, 2014, http://
www .dailymaverick .co .za/ article/ 2014 – 10 – 27- ebola- in- guinea- finding- patient- zero/#
.V_zWNTsefB4.
Zero Hour 363
New York, and Los Angeles, and returned home to Vancouver, I was
struck by the parallels between my peregrinations and those of Randy
Shilts and Bill Darrow before me, and Gaétan Dugas before them.
Thinking particularly of Shilts and Dugas, I could not help but notice
the similarity in our ages, and by the very different yet intertwined ways
in which AIDS had consumed our energies and attention during each of
our young adulthoods. To be sure, researching and writing a history, of
what was in the 1980s and ’90s too often a cruelly fatal disease, is in no
way comparable to living with the corporeality of an untreated HIV in-
fection. Nonetheless, spending more than a decade in the intimate study
of the lives and deaths of mostly young men my own age has taken an un-
deniable emotional toll, and my life has been profoundly marked by this
experience. At times I would halfheartedly quip that, while some might
respond to the shock of a false- positive HIV test by seeking therapy, I
undertook a history doctorate to make sense of it instead. At a certain
point, though, I stopped making this joke when I realized that it masked a
deeper truth. Bundled up in my intellectual work was a kind of emotional
displacement; buried beneath my attempts to write a compassionate his-
tory of AIDS lay a deep, residual sense of vulnerability about the pos-
sibility of becoming infected myself. Thus, one refl ection to emerge
from this experience is the notion of historical research as a process of
self- exploration, of engrossing— yet inherently limited— self- therapy.
One common interpretation of the term “Patient Zero” has been that
of an individual occupying a central and seemingly prominent position
in a network. In this sense, then, Gaétan Dugas has undeniably been
“Patient Zero” for an eclectic chain of historians using the idea as they
purposefully made sexual histories of various kinds to make sense of the
North American AIDS epidemic.25 Darrow, David Auerbach, and their
colleagues at the CDC unintentionally forged the term as they recon-
structed sexual networks of early cases and postulated modes of trans-
mission. Shilts and Michael Denneny fashioned a chronology of the
American epidemic to highlight the epidemic’s heroes and villains and
bring about political change; they deployed the idea of “Patient Zero”
to animate and publicize it. John Greyson turned the notion on its head
in an homage to the impatient spirit and vitality of direct AIDS activ-
25. In writing this section, I was infl uenced by Jeffrey Weeks’s democratic description
of creating sexual histories in Making Sexual History (Cambridge: Polity Press, 2000), 1– 14.
364
Epilogue
ism. Meanwhile, Douglas Elliott saw an opportunity to restore geogra-
phy where it had been absent: he used the idea to unsettle the notion that
public health information fl owed as it should have done during the 1980s
between the United States and Canada, and between provincial and fed-
eral Canadian health authorities. Furthermore, in doing so, he sought to
put “on the record” a history of lesbian and gay communities that had
too often been overlooked or deliberately silenced. Now in my turn I
have employed the idea of “Patient Zero” as an organizational thread to
draw together a diverse series of personal and institutional histories. In
this way, another refl ection that comes to mind in reviewing the idea’s
wide- ranging uses
and travels is that of a certain intellectual promiscu-
ity, an interdisciplinarity that, to me, fully suits a history of the disease
that launched “an epidemic of signifi cation.”
A fi nal organizing refl ection on this experience is one that conceives
of researching and writing contemporary history as a process of enrich-
ing intergenerational mentorship. As I learned through my own real-
world experience and subsequent historical investigations, gay commu-
nities have long wrestled with aging and intergenerational interactions.
Particularly in the highly sexualized bars like those I frequented as a
younger man, and which have for decades featured as prominent com-
munity meeting spaces, it was diffi cult for many gay men of disparate
generations to strike up acquaintanceships, particularly those of a non-
sexual kind. Among many reasons for gratitude, therefore, I would like
to highlight the opportunities my research generated for me to interact
with an older generation of gay men. These exchanges of information,
often in the form of oral history interviews but also through interactions
with volunteer archivists and history enthusiasts, have expanded my ho-
rizons of personal possibility and in some cases led to valued friendships.
Though I often felt that I was the benefi ciary of these exchanges, occa-
sionally I was able to reciprocate in kind. After having closely studied
the interview notes Shilts compiled when he was researching his book
in 1986, I was fortunate to be able to reinterview some of the same indi-
viduals more than twenty years later and, in one or two cases, to reunite
them with a lost memory. When I met with Bob Tivey in 2008, for exam-
ple, he had forgotten the anecdote he shared with Shilts and which is de-
scribed in chapter 3 of this book, where Dugas thanked Tivey for giving
him “a normal day.” Since Tivey had strived in his support work to treat
Vancouver’s early diagnosed persons with AIDS with dignity and re-
Zero Hour 365
spect, he said that he had for years “hung on to” Dugas’s remark— “like
a gift”— until it eventually slipped beyond his recollection.26 At moments
like these, I felt rather like a time- traveling intermediary— reviving, re-
distributing, and cocreating memories from decades past.
Working on a history of AIDS, I was always cognizant that I was
speaking to a generation of survivors. In interviews, emotions were
never far below the surface, and even the most assured speakers would
trip up with little warning. I came to understand that many interview-
ees steeled themselves for the emotional journey of our discussions, only
too aware of the feelings that they kept contained, and knowledgeable
of the pain which was likely to surface as they reminisced. Yet most in-
sisted on carrying on. Spencer Macdonell, having lost most of his friends
to the AIDS epidemic, explained this sense of duty, even as his emo-
tions came close to choking his words. “Phwwwwww [ exhaling deeply]
so Goddess has left me here for a reason. I’m here to— yeah, I’m here to
remember. And probably a few other things too but, but that’s the one
that— that’s the one that’s important. That’s the one that [ voice breaking]
phwwwwwwwwww [ exhaling slowly and deeply] helps keep me going on
bad days.”27 Similarly, Richard Berkowitz told me he felt compelled “to
bear witness” to his dead friends and to “mak[e] history by remembering
it.” He explained that “by talking about it, it’s like you honour the peo-
ple that you knew who died [and] you kind of bring them back to life for
a moment in the stories.” Researchers, too, felt a strong desire to pass
on their experiences; “I want you to know . . .” was the prefi x to several
of Bill Darrow’s recollections.28 I am grateful to all of the survivors who
trusted me with their memories, and who mentored me in the broader
history of North America’s lesbian and gay communities and the epi-
demic that so devastated them.
At a certain point during the Toronto candlelight vigil, audience mem-
bers were asked to say aloud the names of those they knew who had
died of AIDS. It was at this moment, as those around me began recit-
26. Tivey, September 7, 2008, recording C1491/44, tape 1, side B; tape 2, side A.
27. Macdonell, recording C1491/27, tape 1, side B. Macdonell drew a military analogy
in our interview: “A line combat unit is deemed ineffective [ voice breaking] after it’s had
fi fty percent casualties. I lost sixty percent of my friends” (ibid.).
28. Berkowitz, recording C1491/24, tape 1, side B; Darrow, recording C1491/21, tape 1,
side B.
366
Epilogue
ing names, that I experienced a humbling and rather painful realization
of the disconnect between historical research and living memory. After
all my travels, all my research, and all my writing, I could name only one
individual I knew personally who had died of AIDS: one of my sister’s
schoolteachers. Following an initial silence, I eventually offered Gaétan
Dugas— whose name was, of course, inscribed nearby on one of the me-
morial’s plaques— and a moment later, Randy Shilts. On one level, as a
historian, I knew these latter two individuals intimately— much better
than my sister’s teacher. Yet on another, there was a signifi cant divide sep-
arating my own expert historical knowledge of AIDS from the lived expe-
riences of gay men of the era before highly active anti retroviral therapy,
men like Dugas, like Shilts and Denneny, like Greyson and Elliott, and
like the dead Toronto poet and activist Michael Lynch, the founder of the
Toronto AIDS memorial, who had cried out in mourning “these waves of
dying friends.”29 In this moment, I viscerally felt the historian’s lament: no
matter how close one may draw to understanding the past— even the re-
cent past— in some very important ways it will always escape one’s reach.
With this experience in mind, I have chosen to end my book with a
survivor’s account, written by a man deeply affected by the epidemic
and who is exceptionally well placed to offer a fi nal refl ection. Ray Red-
ford e- mailed me in August 2007, after a friend of his in San Francisco
learned of my doctoral research into the history of the idea of “Patient
Zero.” This friend read a letter I had written to an LGBT newspaper in
the Bay Area promoting my research project and seeking interviewees.30
Redford explained that he and Dugas had been lovers in the early 1970s
and that he later remained friends with the fl ight attendant until Dugas’s
death in 1984. At an early stage in our correspondence, Redford indi-
cated his preference for contributing a written reminiscence instead of a
recorded interview, not wanting his choice of spoken words on the day to
forever color impressions of his friend and former lover. At his request,
I sent him a list of questions in late December 2007, as suggestions to
structure his recollections.31 He e- mailed me a draft of his notes in early
29. From Lynch’s poem “Cry,” quoted from Silversides, AIDS Activist, 106.
30. Richard A. McKay, “‘Patient Zero’ Research,” letter to the editor, San Francisco
Bay Times, July 5, 2007.
31. The following are the questions I sent to Redford in December 2007:
1. When and where were you born?
2. Where did you grow up and go to school?
Zero Hour 367
January 2008, along with some scanned photographs. In October 2010,
Redford sent me a revised version of his reminiscences; it is this fi nal
contribution that appears here in its entirety. Sensitive, caring, and often
very moving, Redford’s prose helps restore Dugas’s memory to a realm
from which it has long been publicly denied: the intimate space of a lov-
ing relationship.
Ray Redford’s Reminiscences
I was born in Vancouver in 1947.
I grew up on northern Vancouver Island, mainly in Campbell River. I
left Campbell River in 1965 to attend UBC [the University of British Co-
lumbia]. While I have returned to Campbell River for summer jobs and
family visits, Vancouver has been my home since 1965.
3. What brought you to Vancouver?
4. Can you tell me about your experience coming out?
5. Can you describe the popular gay spots in Vancouver in the 1970s and early
1980s?
6. In the 1970s, was it common for gay men in Canada to travel to American cities
with large gay populations (i.e., New York, San Francisco, Los Angeles)?
7. How and when did you meet Gaétan?
8. Can you describe your fi rst meeting?
9. Was Gaétan living in Vancouver at that time?
10. Did he discuss wanting to be a fl ight attendant with you?
11. Did he tell you any stories about his travels and/or working for Air Canada?
Life growing up in Quebec? His relationship with his family?
12. Can you describe your relationship with Gaétan and how it changed over time?
13. When was the fi rst time you heard that he was sick?
14. Did he ever discuss his illness with you?
15. Were you aware of rumours of any sort about him (or other people with AIDS)
circulating in Vancouver?
16. Do you remember when you fi rst heard about AIDS? What did you think
caused the disease? Do you remember there being confusion about its cause?
17. In the early 1980s, what sources of information did you trust to provide accu-
rate information about this disease?