BETWEEN SILENCE AND VOICE:
LISTENING TO WOMEN WITH HIV AND AIDS
Lisa K Polisher
BA., Metropolitan State College of Denver, 1993
A thesis submitted to the
University of Colorado at Denver
in partial fulfillment
of the requirements for the degree of
Master of Social Science
This thesis for the Master of Social Science
Lisa K Polisher
has been approved
Polisher, Lisa K (M.S.S.)
Between Silence and Voice: Listening to Women with HIV and AIDS
Thesis directed by Professor Catherine Wiley
Over 30 million people have been infected with HIV world-wide and an additional
16,000 people are newly infected every day. Women represent at least 43% of all
people over 15 years old who are living with HIV and AIDS. As this statistic continues
to increase, social scientists, educators, medical professionals, cultural theorists, and
many others dedicate themselves to researching this pandemic. Any and all research on
this disease, it's causes, and possible prevention and treatment is useful. However, like
the multi-drug therapies that are currendy prolonging the lives of those infected,
dialogues and projects that involve the cooperation of multiple disciplines will be more
effective than mono-disciplinary efforts. HIV and AIDS can be understood as the
culmination of a multiplicity of global crises, such as poverty, racism, sexism,
homophobia, and innumerable others. As this pandemic changes due to new medical
therapies and changing populations, so too will the problems and concerns of these
affected and afflicted individuals. The ongoing collection of in-depth, participant driven
narratives is a crucial element in the necessary efforts to stay abreast of these rapidly
changing issues. Until recentiy, narratives were primarily collected from gay men, die
population initially hardest hit in the United States. A handful of researchers and
theorists are now attempting to compensate for the lack of attention women have
received since the beginning of this pandemic. Between Silence and Voice employs a
qualitative ethnographic approach to interviewing women with HIV and AIDS. Both
feminist and postmodern theories are applied to an interdisciplinary discussion of the
themes that emerged from the narratives offered by six women. The narratives explore
numerous issues including parenting, body image, patient-physician interactions, and
the risks involved in disclosing ones HIV status.
to my Mother for instilling in me both curiosity and compassion
to my Father for teaching me to look closely and breathe deep
to Daniel for holding my hand and my heart
... and to all of them for believing in me even when I could not
Although my name appears alone below the title, this work was truly a collaborative
Myra Bookman and John Brett provided extensive academic guidance. Their patience
and tireless efforts to push me to write better, search harder, and explain more were
always balanced with sincere praise and helpful advise. Catherine Wiley generously
volunteered to join my committee at the last minute and provided valuable feedback.
I was fortunate enough to meet Patti Lather at a conference in 1998. Her enthusiasm
and encouragement gave me the second wind I needed to begin sorting out the
seemingly unmanageable amount of information I had collected.
Rachel, Jamie, and Charley regularly offered editing and suggestions, as well as humor
and perspective when I was taking myself and my work far too seriously. Without
Annette and Ramee, my dear friends and fellow students, I would have felt painfully
unique in my struggle to write and manage a project of this magnitude. I am eternally
grateful for their camaraderie during this entire process.
I would especially like to acknowledge the women living with HIV and AIDS who
welcomed me, a total stranger, into their living rooms and told me their stories. They
are the foundation on which this work rests.
Critical Social Theory................................24
Theme One: Diagnosis..................................55
Theme Two: Disclosure.................................68
Theme Three: Medical Encounters......................-77
Theme Four: Surveilling the Self......................88
Theme Five: The Children..............................92
5. Interpretation, Examination, and Context....................103
Surveilling the Self.................................113
[T]he explosion of academic publishing in recent years induces in the subject
enjoined to "keep up" a vertigo that recalls Kant's category of the mathematical
sublime: an overwhelming series of numbers and/or sheer magnitude of information
defeats comprehension and induces an abysmal intellectual and epistemological
encounter that we mark as the sublime. Anyone interested in AIDS must suffer from
a similar vertigo: the number of books, essays, pamphlets, and articles, the kinds of
information, issues, and events that occur are so overwhelming in sheer number as
to defeat any attempt at comprehensive incorporation by one person; the ever
increasing number of written responses to the history of representation of the disease
makes it impossible even to survey recent literature much less to comprehend the
totality of discourse about HIV since its appearance as GRID in January 1982.
-Thomas E. Yingling, Ph.D.
AIDS and the National Body, 1997
Womens health issues have historically been severely under-researched and
under-funded and HIV has not proven to be an exception. The number of
women world-wide who have been diagnosed with Human Immunodeficiency
Virus (HIV) increased by 63% between the years of 1991 and 1995 (Wortley &
Fleming, 1997). By 1995, women accounted for 19% of Acquired
Immunodeficiency Syndrome (AIDS) cases in adults and the greatest increases
in AIDS incidence rates were observed in heterosexually infected women bom
between 1970 and 1974 (Wortley & Fleming, 1997, p. 911). Today women
represent at least 43% of all people over 15 years old who are living with HIV
and AIDS (UNAIDS & WHO, 1998). As of December of 1998 more than
13.8 million women had been diagnosed with HIV or AIDS and of those, 4.7
million had already died. There are no organizations estimating that these
numbers will decrease in the near or distant future. In fact, 2.1 million women
were newly infected in 1998 alone. These figures should make women a
difficult population to ignore in both the physical and social sciences.
A World AIDS Day press release from The International Community of
Women Living with Hiv/AIDS stated that, "On a global scale, 50% of women
newly infected with HIV are aged between 15 and 24, and yet young women's
special needs and vulnerabilities are hardly ever directly addressed by
governments, agencies or even HIV/AIDS organizations" (ICW, 1998). A 1992
panel on "Gender-Related Variations in Natural History" at the 8th
International Conference on AIDS failed to present a single study that included
gynecological manifestations of HIV (Rodriguez-Trias & Marte, 1995, p. 746).
This was due in part to the fact that the majority of natural history studies1 have
focused on gay men and thus far women have been underrepresented in natural
histoiy studies of particular groups (i.e., injection drug users) (Rodriguez-Trias
& Marie, 1995, p. 746). There is a substantial amount of published work on
this type of neglect with respect to heart disease, cancer, and other diseases with
high mortality rates (Rosser, 1994), but there are fewer texts that explore the
personal experiences of women with these devastating diseases, and fewer still
that are specific to women and HIV or AIDS.
Natural history studies in this case are studies of the overall manifestations of HIV infection from a
Activists address such neglect by demanding that each disease be given a "face" so that
the afflicted population is represented as more than statistics. However, activists have
little control over what images different types of media choose to represent that disease
and those who it afflicts or affects. In the case of HIV and AIDS the predominant images
have been at opposite extremes.
In the 1980s anyone who turned on a television, or opened a newspaper or magazine
would find a terrifying cultural image of AIDS. This image was devoid of life, family,
sexuality, and personal identity. The images were of people ravaged, disfigured, and
debilitated by the syndrome; they were isolated and desperate, but resigned to their
"inevitable" deaths (Crimp, 1992). This representation created a sense that people with
AIDS were a homogenous group, suffering and dying in the same way. This image is
dependent upon existing stereotypes about "at risk" groups (Crimp, 1992). Dramatic
media imagery had already convinced the public at large that sex workers, injection
drug users, and gay men were outsiders, hopelessly lost at the margins. So, to assign
a fatal disease to those people was not difficult. This is an extremely narrow
construction of reality and, unfortunately, an enduring one.
This type of representation began to change in the early to mid 1990s. This was due in
part to an outcry by people living with HIV and AIDS who saw these images as
compounding an already stigmatized condition. The response to this outcry has been
funded primarily by pharmaceutical companies. Now magazines contain
advertisements for common antiviral medications with large color photographs of
healthy, athletic looking young men. The implications here are two-fold: people are no
longer dying from AIDS because of new medications, and the consumers of these
medications are men. Given the initial identiiication of AIDS as the "gay plague",
viewers of such advertisements may also assume that the consumers of such
medications are homosexuals.
Social scientists must not fall into the trap that the media have laid. Representations of
people living and dying with HIV and AIDS cannot be left uncomplicated. Crimp (1992)
attacks the media's portrayal of people with AIDS and the continuous association of the
disease with gay men. This association of a disease with personal identity rather than
behavior allows for a construction of AIDS as belonging to those people while we
maintain a separate social identity (Watney, 1993). Here Crimp asks crucial questions
for researchers: What representation of a person with AIDS would be truly
representative? How could it be? and, Why should it be?
My research began with Crimp's questions about representation and expanded into a
curiosity about how women with HIV or AIDS would like to be represented and what
they want people to understand about their experiences with this disease. This
curiosity evolved into the three interconnected objectives of this project. My first
objective is to add the narratives of six women to the growing discourse by, for, and
about women with HIV and AIDS. The five thematically grouped narratives in Chapter
Four will illustrate my second objective which is to emphasize the value of the ongoing
collection of in-depth, participant driven narratives from women with HIV and AIDS. It
is my belief that women with HIV and AIDS can benefit profoundly from a dialogue
between researchers, activists, advocates, medical professionals, and policy makers.
However, if such a dialogue is created with the express purpose of improving the lives
and treatment of a population, we must listen to the voices from that population to stay
abreast of their current problems and concerns. My third objective in this work is to
draw the issues raised by the six women I interviewed into a larger context by
examining how these issues have been approached by feminist and postmodern
theorists, medical researchers, and social theorists. These examinations result in
interdisciplinary discussions of each narrative theme.
A fraction of the body of literature that I identified during my research seems to be
motivated by a similar dedication to enriching the discourse on this topic within the
social sciences. I will explore a handful of that literature in this chapter. Much of the
current literature on women, HIV, and AIDS addresses how the construction of some
people as removed from risk has actually increased their risk of exposure and
systematically deprived them of an education and social climate that would promote
self-protective behavior. This literature also criticizes the limited education available as
embedded within an individualistic and deterministic ideology. This ideology
presupposes the free will to change behaviors regardless of political and socio-cultural
contexts. Calls for individuals to alter their lifestyle suggests that all people are equally
free to choose to avoid or engage in risk behaviors (Devine, Lamola, Millen, &
Simmons, 19%, p. 173). Such a suggestion overlooks the degree to which an
individuals behavior is embedded in and influenced by social forces (Medicine, 1995).
Nancy Goldstein approaches this issue of how HIV has been defined and perceived
with her assertion that HIV "has been studied primarily as a biological rather than social
or cultural phenomenon in the United States, and as a male virus in female bodies"
(Goldstein, 1997a: 1). Goldstein exposes the limitations of virology and immunology
as models for understanding HTV and AIDS by examining their failure to locate subjects
within a social context and their reliance on individualistic models that presuppose
agency and free will.
Sally Zierler and Nancy Krieger endeavor to answer the questions of which women are
at risk for contracting HIV and why. They examine the epidemiology of HIV and AIDS
in light of four conceptual frameworks: feminism, social production of disease/political
economy of health, ecosocial, and human rights (1997). Working at the intersection of
class, race, gender, and sexuality, the authors describe a socio-political and economic
context for the emergence and spread of AIDS in the United States. Their primary
assumption is that the biology of transmission and infection of HIV is embedded in this
Utilizing the same basic framework outlined by Zierler and Krieger, the contributors to
the following two anthologies examine many different aspects of living as a woman
with HTV or AIDS. The first anthology, The Gender Politics of HIV/AIDS in Women
(Goldstein & Manlowe, 1997), is primarily a Western analysis. The second, Women's
Experiences with HIV/AIDS (Ankrah & Long, 1996), is written from an international
perspective. Both texts offer a diverse survey of the current perspectives about women
and HIV and AIDS with respect to personal experience, political agendas, and a host of
other topics. Taken together, they remind us that the word "Human" in HIV denotes all
men, women, and children without exception or exclusion based on race, religion, class,
age, or sexual orientation. However, the research on this disease has been
exclusionary. From the beginning people have been categorized through political and
medical discourses that construct them as "high risk" or "low risk". People's identities
are conflated with their behavior as injection drug users, sex workers, and homosexual
men. For women there are the additional categories of "mother" and "wife", both of
which translate into "vector of transmission" to the more valued populations of
heterosexual men and children.
Many of the authors in The Gender Politics of HIV/AIDS in Women are troubled by the
notion of the body as a "singular, historically stable, uncontested site of meaning" and
encourage an understanding of the discursive construction of "disease", "nature", and
"truth" (Goldstein, p. 5). Goldstein reads the history of HIV and AIDS as a narrative of
the naturalistic transformation of prejudice into biological "fact".
Based on the assumption that women living with this disease are mis- and under-
represented, each of the contributors explore new representations of this population.
Often these explorations conclude with passionate challenges. For example, Laura
Ramos' piece includes the following invitation:
What we'd like to see researchers and clinicians do is to make more use of
methods like ethnography and leave the sterile laboratories, clinics, and
academic institutions and come down to our neighborhood. Bring your mobile
clinics and good listening skills; work with us to find out what's redly going
on, going down, right here in our bodies, minds, and souls about these
important things like love, sex, and STDs/HlV. Respect us and treat us as
partners, after all we're the experts on what we do in bed, in the streets, and what
it all means to us. We're the most invested in this. We're afraid, but we don't
know what to do to protect ourselves. We're getting sick and ain't no one
noticing. We're dying and no one cares. Except us. Come join us in our fight
to live sexy and healthy lives. (1997, p. 147)
The Gender Politics of HIV/AIDS in Women concludes with seven narratives in a section
entitled Women with AIDS Speak Out. The narratives speak to difficulties in
persuading physicians to perform HIV tests, lack of personal HIV education, abuse,
parenting, transformation, making meaning through God, love, peer support,
transgendered experiences, anger, and hope.
In the second anthology, Women's Experiences with HIV/AIDS: An International
Perspective, co-editor Lynellen Long states that the central argument of this
compilation is "that by taking women's and girls experiences seriously, both men and
women will be able to do a better job of preventing HIV and AIDS" (Long, 1996, p. 2).
The initial motivation for this text was the frustration that the editors felt about the lack
of input and influence that women's voices have had in research, policies and programs.
This anthology has five organizing themes. First, women's experiences need to be
taken seriously. Second, women must share a common political agenda in order to
effectively mobilize against the spread of HIV and AIDS. Third, there must be an
understanding that qualitative and quantitative research methods are both required and
the information that results from research must also be accessible and open to criticism
from those living with HIV and AIDS. This book, the editors claim, is a beginning for
the kind of dialogue that is necessary between researchers, practitioners, policy makers,
and women with HIV. The fourth theme is that research in this area should be
transdisciplinaTy. This would seem to entail cooperative education between and among
disciplines more than just a simple compilation of work from multiple schools of
thought The fifth and final theme of the book is that empowerment needs to become a
meaningful concept. Long states, "much of what people know about empowerment is
its absence" (p. 11). Overall, the editors and contributors to this volume illustrate the
importance of listening to many voices. The editors have provided a text that includes
local narratives, personal accounts from the "observer", science, political economy of
health, and critical theory.
In a less critical, but equally powerful work, the authors of A Positive Life: Portraits of
Women Living with HIV focus specifically on local narratives and only address their
own personal experience in the introduction (Huston & Berridge, 1997). For this book
River Huston interviewed thirty women with HIV. She created a multi-layered and
intensely visual text by collaborating with photographer Mary Berridge. Instead of an
interview format between the participants and the authors, the narratives are presented
as uninterrupted tales of pain, sorrow, hope, and strength.
In Troubling the Angels: Women Living with HTV/AIDS (1997), Patti Lather and Chris
Smithies include much more of their own voices amidst the narratives than did Huston
and Berridge. Troubling the Angels is a text that is deliberately about both the
researchers and the 26 women they interviewed. It is about "giving voice" to women
with HIV and AIDS, and about the joys and limits of knowing and speaking about the
lives of others. Women living with this disease have been largely invisible in this
pandemic and Troubling the Angels aims to counter that invisibility with an exploration
of the perspectives of women with HIV and AIDS and of the cultural and social
significance of the disease for women, their families, and their friends. Although this is
a highly academic undertaking, the work is directed towards women with HIV and AIDS
and their loved ones, to educate and inspire them and promote public awareness.
Far from the dispassionate stance assumed in so-called "objective" research, the
authors disclose their backgrounds, their motives, and their assumptions going into the
research. They reveal their struggles with each other as co-authors, as well as the
personal and professional struggles that arose during, and as a direct result of, the work
they were doing with these women. Despite all of this information about the
researchers, their voices are deliberately quieter than the participants, and their stories
are always relevant to the participants narratives.
Their research is methodologically grounded in qualitative, ethnographic, and feminist
poststructural analysis. The researchers try to position themselves as "witnesses"
rather than "experts", learning as they go along how to give testimony without reducing
people's lives to analytic categories. Although Lather and Smithies do their best to "get
out of the way" of the women's stories, their presence and their privilege is still felt, but
their presence in this text is valuable. If the authors had rendered themselves
completely invisible the text would have been incomplete. They were as much a part of
its creation as the participants, and the documentation of their struggle to take a
backseat to the narratives allows the reader a rare glimpse at the (im)perfection of
research as a process.
Lather and Smithies were able to put forth a text which, when completed, gives the
reader a sense of wholeness, a gestalt rarely found in scholarly work. Of course, this
sense of wholeness is countered by an understanding that although you have read the
last page, the lives of both the participants and the researchers will continue and all of
them have been changed or touched by the research process. Troubling The Angels is
gut wrenching. It is a multitude of stories intertwined to create a polyphony of voices,
feelings, and images. The content of each narrative problematizes popular images of
people with HIV and AIDS. First and foremost, these women are living. They are not
victims, devoid of sexuality, alone and waiting to die. They are Us, not Them.
Although these women share a common disease, their narratives trouble the notion that
HIV has created another naturally occurring and homogenous group by including the
specifics of individual experience. Differences of race, class, and physical abilities are
just as important as the similarities they experience as women, as people living with
HIV, and as human beings. Troubling The Angels is the book that inspired my research
and one that I will continuously draw on throughout this work.
Many texts, like Troubling the Angels and the others that I have mentioned here, have
been criticized for being too accessible or not accessible enough, for failing to include
this group or that, for being too deterministic or too relativistic. But no one theorist,
philosopher, psychologist, or anthropologist can possibly address all audiences or
issues. I chose to discuss these texts, not because they are each exhaustive in and of
themselves, but because together they illustrate a range of topics, voices, and disciplines
and are valuable in that they contribute to the growing discourse by, for, and about
women with HIV and AIDS. Contributing to this growing discourse with
ethnographically collected narratives is my principal project in this work.
I have grounded my work in a qualitative ethnographic approach and employed both
feminist and postmodern theories as a framework for analyzing six in-depth interviews
with women who have been diagnosed with HIV or AIDS. I found some similarities
between the narratives I collected and those found in the texts I discussed above, but
there are also differences. This indicates that there are certain topics that remain
relatively constant for women facing a terminal illness, but that the particulars of each
woman's experience change as rapidly as this disease and the world in which we live.
These changing issues must continuously be sought out so that people involved with
HIV and AIDS at any level can begin or maintain a dialogue that reflects newly emerging
issues. Women with HIV or AIDS may find some comfort in recognizing themselves in
other people's stories. AIDS activists may be alerted to issues that require their
attention. Policy makers need to know what is actually benefiting women with AIDS
and what is not. Researchers, whether their goal is exploration or intervention, need to
know a great deal about the population they study. The ongoing collection of in-depth
narratives is necessary in order to give all of these people a place to start. In addition,
the collection of narratives must continue in an effort to overwhelm any discourse on
HIV and AIDS with stories aimed at reducing prejudice and increasing awareness.
In Chapter Two I will discuss the theories which informed my methodology and the
actual methods I employed in this project2. In Chapter Three I will address the
feminist and postmodern theories that have informed the way in which I read the
collected narratives. Chapter Four contains narratives separated into five thematic
sections. Instead of entering into data collection with pre-established themes, I listened
for them to emerge from the narratives without prompting. The freedom to let stories
2I make this distinction between methods and methodology because numerous authors have pointed .
out that these terms are often used interchangeably (see esp. Harding, 1987; Stanley & Wise, 1990).
Methods are techniques, procedures, or practices, whereas methodologies are the theories or
perspectives that inform the production of particular kinds of research and justify it in terms of its
knowledge making (Taylor & Rupp, 1991).
unfold without guidelines was a result of my desire to gain understanding of
experiences rather than confirm or refute a hypothesis about those experiences. In
Chapter Five I will examine how issues raised in each theme have been addressed from
a variety of positions, namely those that identify as feminist or postmodern. The
process of drawing each theme into a larger theoretical context is akin to the process of
induction. However, instead of that process leading me to a conclusion, I intend to let it
lead me to further questions. It is with those additional questions that I will end this
project and begin the next
...critical inquiry is a response to the experiences, desires and needs of oppressed people (Fay,
1975). Its initial step is to develop an understanding of the world view of research
participants. Central to establishing such understanding is a diologic research design where
respondents are actively involved in the construction and validation of meaning. The purpose
of this phase of inquiry is to provide accounts that are a basis for further analysis and 'a
corrective to the investigators preconceptions regarding the subjects' life-world and
experiences' (Comstock, 1982, p. 381).
Getting Smart: Feminist Research and
Pedagogy withJin the Postmodern, 1991
Choosing a research method requires the researcher to make conscious choices about
the assumptions underlying his or her inquiry and to take responsibility for those
choices and their consequences (Bentz & Shapiro, 1998, p. 5). Issues of mortality are
emotionally charged and inquiring about the personal experience of facing a terminal
illness requires an atmosphere of care and compassion. Rebecca Bloom points out that
"so much depends on the trust between the researcher and respondent, the respondent's
readiness for such an examination, the respondent's capacity for dealing with the
emotional difficulty of (re)telling stories that make them feel vulnerable, and the
researcher's ability to sincerely, thoughtfully, and adeptly analyze stories while being
both gentle in tone and sensitive in understanding" (Bloom, 1998, p. 95).
Consequently, I, as the inquirer, took great care in selecting the ways in which I chose
to enter the lives of the women who participated in my research. I have also attempted
to show equal valuation of both the words of the participants and my process of
research. In doing so, I have provided their narratives as large, uninterrupted segments
instead of inserting periodic quotes in a sea of interpretations and attempts at
paraphrasing. However, I must ultimately take responsibility for editing, choosing
themes, and the overall framework of the final work.
I have pieced together concepts from several disciplines, epistemologies, and
methodologies in an effort to expand the ways in which I might receive and view
various knowledges3. Although it may seem elementary, I have included some
definitions so that readers may know how I am looking at different aspects of my
research, even if they do not agree with my definitions.
A discipline is an established field of social science knowledge that has developed
standing and recognition within the academic community (Bentz & Shapiro, 1998, p.
82). I have drawn here from several disciplines that originated from moral philosophy
- psychology, sociology, and anthropology and from medicine, which finds its origins
in natural philosophy. My background is in psychology and sociology and the
perspectives of both disciplines contributed enormously to the ways in which I
interacted with the participants. Anthropology is a more recent passion of mine which
developed because of my affinity for the methods of inquiry that it employs. My study
of medicine revolves around women's health issues in general, and HIV and AIDS
specifically. I have also drawn from women's studies and feminist theories in an effort
to approach the participants and the subject matter with an understanding of systematic
3I use the plural knowledges to imply that there is no single body of knowledge from which I drew,
nor would the information gained from the narratives create a new, stable, and uncontested body of
oppression, unequal power-relations, and the need for ethical inquiry with respect to
Each of these disciplines has a culture of inquiry^, or applied epistemology, that they
use to explain or understand "reality". Persons from various disciplinary backgrounds
may work within the same culture of inquiry, just as one person from an
interdisciplinary background may combine explanations from multiple cultures of
inquiry. I have chosen to work from within an ethnographic culture of inquiry, with an
undercurrent of critical social theory.
I was drawn to ethnography because I am invested in the continuing discussion in the
social sciences about the act of writing and what we are able to construct and convey
through this medium. Writing is a medium that is an integral part of all research,
whether our work is in the area of theory, practice, or a combination of the two.
Discussions about academic writing have helped to maintain a division between
"conventional" and "experimental" writing. Debates over issues of representation, the
inclusion of extended narratives in published research, researching people of one's own
gender, race, and class, and bringing the author into the text to blur the boundary
between researcher and researched, are all debates that have been vital to my decisions
on how to approach research with women who have HIV or AIDS.
^Bentz and Shapiro define this phrase as "general types of inquiry based on differing paradigms of
knowledge." They use this phrase instead of "applied epistemology" to "emphasize that learning an
applied epistemology is not a purely conceptual matter but involves being socialized into the values,
norms, and practices of the community of inquirers who work within that epistemology" (Benlz &
Shapiro, 1998, p. 85).
The conversation between two anthologies written a decade apart, Writing Culture and
Women Writing Culture, is one example of how issues of experimental writing have
been treated in the human sciences. The first anthology, Writing Culture, attempted to
lay claim to legitimating experimental ethnographies within the discipline of
anthropology. The initial project of the second, Women Writing Culture, was to
challenge that claim.
In the mid-1980s James Clifford and George Marcus co-edited a book of essays
entitled Writing Culture (1986), that was inspired by a seminar at the school of
American Research in Santa Fe, New Mexico. These essays explore the history of
constructing ethnographic texts (texts which traditionally embrace an ideology of
transparency of representation), and a move toward "new" texts that attempt to
problematize issues of neutrality, authorship, and objectivity. The contributors analyze
the boundaries between the poetic and the political and although not all of the
contributors agree on the degree to which literary theory and ethnography may be
combined, they all agree that whatever ethnography is, it is always writing.
The essays that I find the most intriguing in this volume are Fieldwork in Common
Places by Mary Louise Pratt and Representations Are Social Facts: Modernity and
Post-Modernity in Anthropology by Paul Rabinow. The content of these essays are
very different but both deal with experimental ways in which to conceptualize the
writing of ethnographic texts.
Pratt examines the relationship between personal narrative and impersonal description
in ethnographic writing. She asserts that, although they are often marginalized,
personal narratives have always played an important role in the initial positioning of the
ethnographer, the subjects), and the reader. Pratt argues that personal narratives have,
the effect of mediating the shift and gap between fieldwork and its translation into
formal ethnographic description.
Pratt uses Maijorie Shostaks book, Nisa: The Life and Words of a !Kung Woman
(1981), as an example of how such narratives can "rehumanize" ethnographic writing.
Shostak concentrates her own story at the beginning and end of the book and dedicates
the rest of the pages to Nisa's narrative. The resulting polyphony, according to Pratt, is
a part of experimental writing that contributes to discussions and changes in how
ethnographers handle issues of representation.
Rabinow's essay explores some of the elements of the discourses of modem
representation in ethnography. He relies heavily on the work of Fredric Jameson
(1983) to explain how recent postmodern developments in experimental writing
methods do not require a rejection of "logic" or a celebration of "relativism".
Expanding on Lyotard's (in Seidman, 1994) description of postmodernism as the end
of metanarratives, Jameson describes postmodernism as comprised of three elements.
The first is "its historical location as a counter-reaction to modernism" (p. 248). The
second element, pastiche5, is both a "critical position and a dimension of our
5A pastiche is a free-floating collage, or patchwork of ideas or views. It includes elements of
opposites such as old and new. Rabinow states that, "Beyond estrangement and relativism, lies
pastiche." When I use this word to describe my own work and the work of Lather, Min-ha, and
othere, I intend the more traditional definition: A musical, literary, architectural, or artistic
contemporary world" (p. 249). The third element, textuality, is described as a
"breakdown of the relationship between signifiers" (p. 250). Pastiche and textuality are
elements which allow for the partiality and fluidity to which most postmodernists are
In his essay on ethnographic writing and anthropological careers, Marcus states that the
purpose of essays like those written by Pratt and Rabinow was to introduce a literary
consciousness to ethnographic practices (p. 262).
....in this literary treatment of ethnography more is at stake than the mere
demystification of past dominant conventions of representation. Rather, such a
critique legitimates experimentation and a search for options in research and
writing activity, which would be equal to the claims and ambitions of the
influential interpretive styles of analysis in contemporary anthropological
thought (p. 263)
There are some glaring limitations in this anthology, some of which are noted by
Clifford. He states that although the contributors may emphasize different areas of
study, this is not a multidisciplinary venture. He further notes that many approaches,
such as feminist theory, are not included. Anticipating some criticism, he justifies the
absence of feminist perspectives by asserting that at the time of this seminar (1984)
feminism had not contributed much to the theoretical analysis of ethnographies as texts,
nor had they produced unconventional forms of writing. Instead, Clifford claims,
feminists focused on revising anthropological categories (such as the nature/culture
composition made up of selections from different works. The idea is that the author utilizes those
elements from multiple disciplines, genres, and paradigms that best suite their style and research
goals. I find value in creating deliberate contradiction and confusion only as it may assist the reader in
re-thinking ideas they may have taken for granted, but not if it serves no other purpose than to make
the text inaccessible and abstruse.
dichotomy) or "setting the record straight about women" (p. 21). He speculates that
this may be a consequence of marginalized groups not having had the freedom to
"indulge" in textual experimentation. One of the contributors asserts that in order to
write in an unorthodox way, one must first have tenure. There are those who disagree
with this position.
Writing Culture, and the spirit of experimentation that the contributors talk about,
inspired another anthology entitled Women Writing Culture (1995), edited by Ruth
Behar and Deborah A. Gordon. In the introduction Behar states that Writing Culture
was a key precursor to their feminist project (p. 3). With this book Behar and Gordon
make a feminist contribution to the discussion that Clifford admitted excluding in
Writing Culture. Gordon, Behar, and other contributors in this text give numerous
examples, historical and contemporary, of womens experimental writing of
Behar explains that Women Writing Culture was inspired by a crisis in anthropology
and a crisis in feminism. She states that Writing Culture and This Bridge Called My
Back exemplify those crises, the former from within academic territory and the latter as
a challenge to those borders. Women Writing Culture answers both works by
addressing literary ethnography written by women as well as the diversity within this
Behars response to Clifford is blunt. To exclude feminist anthropological writings of
"new ethnography" on the grounds that it did not exist was an "act of sanctioned
ignorance" (p. 4). She asserts that women anthropologists have been crossing the
borders between literature and ethnography for decades but male academics labeled
them autobiographical, confessional, or popular (read: not scholarly). However, when
male anthropologists write with a personal voice in Writing Culture it is reclassified as
reflexive and experimental.
Behar notes that over twenty years ago Adrienne Rich asserted that men do not write
for women or with a sense of being heard by women. Women, on the other hand, are
acutely aware of having been always already defined by men and therefore write in
anticipation of male criticism. In Theories of Gender (1994), Rosi Braidotti points to
Rich's recommendation that feminists try to define the female condition not in a reactive
but in a creative manner, and not only in terms of oppression but also in the light of the
positive values associated with being a woman.
This "woman-identified" approach is a common thread connecting some of the most
creative and progressive feminist theories. It is as if every story women have told has
been interpreted through Freud, the father, the husband, or the male intellectual
(Lauretis, 1987). Women writers often anticipate this interruption, distortion, and
misappropriation by building a patriarchal interpretation into their writing. This
necessarily results in writing which is told or written in reaction to, or in relation to,
men and their desire, their standards, their definitions. The challenge to feminist
scholars has been, and continues to be, to take as our starting point the creation and
production of women's subjectivities6. It is with these suggestions in mind that I chose
6Although the word "subjectivity" has been defined by many theorists in many different ways (see
Bloom, 1998; Britzman, 1991; Ferguson, 1993; Lauretis, 1987; Mama, 1995), I prefer here to
not only to limit my participants to women, but I also chose to keep comparisons
between men and women to a bare minimum.
Although Women Writing Culture began as a feminist response to Writing Culture, it
evolved into something much larger. Many of the contributors acknowledged the
academic pull to write "like men" but stated that they pushed themselves beyond
convention towards this "woman identified" approach. Behar explains that by refusing
to accept the separation between creative and critical writing, they were able to include
writing that was at once biographical, historical, poetic, and literary. The diversity of
styles, subjects, races, and academic status in Women Writing Culture becomes more
pronounced against the backdrop of Writing Culture. The contributors write about
anthropologists that were left out of the canon, such as Ruth Benedict, Elsie Clews
Parsons, Zora Neale Hurston, Ruth Landes, and Barbara Myerhoff. They also
included their own experimental ethnographies about language, travel, pregnancy,
gender, divisions of labor, and sexuality. In Sally Coles piece, Ruth Landes and the
Early Ethnography of Race and Gender, she writes:
When we recover the history of ethnographic writing we discover that there has
long been experimentation (by both women and men) that includes many of the
"textual innovations" to which "new" ethnographers in the 1980s lay claim:
first-person narration, multivocality, transcription of dialogue, reflection on the
impact of the ethnographer's feelings and relations with subjects and
interlocutors, and so on. Anthropologists have also long experimented with the
recording of subjective experiences in their published and unpublished letters,
diaries, memoirs, biographies, autobiographies, novels, poems, and prefaces all
of which need to be understood as ethnographic writing, (p. 181)
understand the term in the general way defined by Chris Weedon. Weedon states that "subjectivity is
used to refer to the conscious and unconscious thoughts and emotions of the individual, her sense of
herself and her ways of understanding her relation to the world" (Weedon, 1987, p. 32).
In Gordon's conclusion to this volume, she too responds to Clifford by exploring why
feminists failed to experiment with ethnographic writing or produce debates over
textual theory. She states that some theorists contend that women have written
experimental ethnographies but they have been ignored. Gordon then takes this a step
further to problematize the very meaning of "experimentation". She states that the
literary history of feminist anthropology requires an interrogation or release of the
reductionist binary between "conventional" and "experimental". Patti Lathers work in
Troubling the Angels illustrates one possible result of mixing genres and disrupting
All of the issues that were addressed in Writing Culture and Women Writing Culture
are applied in Troubling the Angels: multivocality, authorship, representation, privilege,
personal voice, play in textual presentation, collaboration, and writing for multiple
audiences. Lather grounds her work in a combination of feminist writing practices and
postmodern theories in an attempt to contribute to both social change and academic
authority. Troubling the Angels is an illustration of Rabinow's postmodern pastiche,
and of Pratts mediation of personal narrative and impersonal description.
Another aspect of Troubling the Angels addressed in Writing Culture and Women
Writing Culture is the deliberate blurring of the boundaries between Self and Other.
This is what Michelle Fine calls "working the hyphen" between the two (1994). Fine
argues that research which assumes notions of scientific neutrality, universal truths, and
a science that is disinterested, denies the existence of a hyphen between Self and Other.
In the social sciences, researchers have attempted to do exactly this by disguising
privilege and over-emphasizing intimacy between researcher and subject. However, as
Fine points out, qualitative researchers are "always implicated at the hyphen." When the
hyphen is acknowledged by working with rather than writing about the Other, and
researchers deliberately locate themselves within the text, the lines of demarcation
between Self and Other can become fluid rather than static. This fluidity helps to
expose partialities and pluralities that enrich the text and allow readers to critically
analyze and interpret the work.
The discussions on different forms of writing will continue indefinitely. As definitions
of such terms as "legitimacy", "validity" and "experimentation" continue to change so
too will the writing styles that are located at the margins. The readers and writers of
culture are already gazing backwards to Writing Culture and finding its suggestions
"conventional", and, for the moment, books like Troubling the Angels are novel,
complex, and inspirational.
Critical Social Theory
Troubling the Angels, although not specifically geared towards policy makers, has an
undercurrent of hope for social change. This undercurrent finds its roots in critical
social theory. Despite the fact that the work of Lather and Smithies, and the work that I
have done here, are not directly oriented toward an explicit project of change and
emancipation, they are grounded in the notion that as researchers we exist within the
societies we study and are at least partially motivated by a desire to expose oppressive
conditions in those societies. From this non-neutral stance we have an opportunity to
be a catalyst of transformation even if the immediate goal of our individual projects is
not to free those we work with from oppressive conditions. One of my goals is to
convey the tremendous value in beginning any research or intervention on behalf of
women with HIV or AIDS with an examination of current narratives. Continuously
referring to this ever-changing population will enable policy makers and fund raisers to
be transformative rather than investing their energies and monies in programs that don't
work. It will also enable practitioners to have a better understanding of how to foster a
physician-patient relationship that will encourage health and adherence to medical
While gathering personal narratives I was primarily interested in learning about the
lived experience of women with this disease. I sought out descriptions of that
experience using in-depth interviewing methods. Methods are ways of acquiring and
organizing "data." A researcher working within a culture of quantitative or behavioral
science might employ survey methods to leam more about women diagnosed with a
fatal disease. However, surveys are not designed to expand or change the
consciousness of the researcher. Instead, they provide limited information which is
prompted by the inquirer's questions. For researchers like myself, who welcome
unexpected information, interviews that allow for questions to occur in the context of a
participant's narrative are more valuable.
Encouraging participants to tell their stories in their own way gives them the
opportunity to tell the researcher what is important to them about their experience.
When a survey method is employed, the questionnaire is driven by the hypothesis, but
the hypothesis is not created by the population being surveyed. Therefore, the resulting
data may not reflect that which is important to the population (Peterson, 1997, p. 157).
Survey methods primarily generate data concerning correlations and associations
among variables but they result in acontextual information that lacks depth and
substance. For this type of contextual investigation, the discovery of unexpected
information is an end in itself (White, 1997, p. 103). Since my ultimate goal was to
create an opportunity for women with HIV or AIDS to discuss what was important to
them about their experience, it would have been counter productive and presumptuous
of me to create questions in advance of the interviews.
This pastiche of disciplines, epistemologies and methods has allowed me to read the
stories of the women that I interviewed from multiple angles, each one enhancing and
enriching the other.
I decided in the beginning stages of my research that I would narrow the profile of my
participants to women with HIV (not AIDS), whose mode of transmission was
heterosexual sex, because this is the fastest growing group of HIV-infected people in
the United States. My selection process was non-random, in that I was willing to meet
with any woman who expressed an interest in talking with me. This approach is
sometimes referred to as "network sampling", which involves being introduced to
potential participants through existing participants or related contacts (Bums & Groves,
1993). Although I had no intention of collecting a "representative" sample, I still hoped
for some variance among participants. However, it was ultimately more important to
locate women who had a desire to discuss their stories (White, 1997, p. 105). Letting
people know that I was looking for women who would be willing to share intimate
details of their experience with a complex disease was a difficult part of this process. I
was very concerned, and still am concerned, about appearing voyeuristic.
Patti Lather's frequent discussions of her own concerns about voyeurism and the
difficulties she has with the "violence of objectification required by the academic
pursuit..." (1997, p. 154) failed to offer me a resolution to this research dilemma.
Instead, what I came to understand is that the vigilant awareness of the possibility of
exploitation combined with the strong desire to be a witness, rather than an expert, is
what enabled Lather and Smithies to produce a text that the participants felt was an
honest and caring representation of their lives. It was with this understanding, and the
hope that I too could collaborate with women to tell their stories, that I was able to
muster the courage to begin searching for participants.
I began by approaching one organization in the Denver area that specifically serves
women with HIV and AIDS. I held my breath and dialed the number for the
Empowerment Program. I was connected to a woman by the name of Dusty. I slowly
and carefully began my professional introduction: Hi Dusty. My name is Lisa
Polisher. I am a graduate student at the University of Colorado at Denver working
towards a Masters degree in Social Sciences. I am currently working on a thesis on
women and HIV. "Beautiful!" That's what she said. I exhaled cautiously. Was it
going to be this easy? She did not immediately launch into a speech on confidentiality,
privacy, or matters of policy. I continued: I am looking for volunteers that are
interested in discussing their experience. "Great! We'd be happy to help. We work
with researchers all the time." Dusty continued to be eager and helpful throughout our
conversation. When I hung up the phone I laughed out loud. I was overwhelmed with
relief that my first contact was successful.
This relief was tempered with the sudden realization that I had just committed to this
project: a project that would be filled with fear, sorrow, mistakes, false starts, and
sleepless nights and one that I conceived of, initiated, and ultimately wanted to see
through to the end. I recalled Lather's excitement when her book was finally finished
and was in the process of being reviewed by the participants. She wrote, "I speak of
how this is one of the happiest days of my life and immediately cringe in horror that
my happiness would come from the sorrow of their lives" (1997, p. 228). These sorts
of mixed emotions permeated my work right from the beginning and even now, as I am
typing these words, I feel the tension between writing about my excitement around my
initial contacts with these women and my sadness that what I found to be the most
meaningful part of the research is over and T will likely never see the participants again.
It is with this ambivalence that I followed my connection with Dusty to Ann, my first
In need of more participants, I contacted the Colorado AIDS Project (CAP). The person
I spoke with sounded less than enthusiastic and said that she would have to speak with
her supervisor. When I hung up the phone I was disappointed and began trying to
figure out other ways to contact potential participants. Less than an hour later, the
telephone rang. It was Shannon. The woman I spoke with at CAP had told her about
my project and she was calling to volunteer. She told me that she was involved in the
Women's Lighthouse Project and that she would contact some other women about my
work. Shannon's contacts lead me to Jeanne, Sarah, and Luann. I had also put in a call
to Dr. Charles Steinberg, who runs the Beacon Clinic in Boulder and that is how Kelly
came to contact me. I would later find out that Kelly also knew Shannon and was
familiar with the Women's Lighthouse Project
The first time I spoke with each volunteer, I briefly explained my research and set up a
time that I could meet with them. My intention was to meet with each participant twice.
I envisioned the first meeting as a brief encounter during which I would tell them more
about my project and give them the opportunity to ask questions. I also wanted to give
them a little time to think about what they would like to tell me before we actually began
an interview. If after this first meeting, a participant felt that they still wanted to
volunteer, then I would schedule the extended interview for the second meeting. This
scenario played out with Sarah, but I met only once with the other five women due to
their "no time like the present" attitudes.
Each interview was conducted in the home of the participant Being in their homes
made the process less formal, and encouraged an atmosphere of trust There were, of
course, distractions. Telephones rang, boyfriends and husbands appeared
unannounced, dogs needed to be let outside. But this is how we live our lives and
ultimately, it felt like the right decision. Personal items in each house became catalysts
for discussion and also triggered memories. Each woman seemed very comfortable
with the interviews which I attribute, in part, to these familiar surroundings. My fear
that the lack of structured questions would result in long awkward pauses was
unnecessary. Each womans story came out in a flood.
I tape recorded the interviews so that I would be able to concentrate on the
conversations rather than frantically taking field notes. Since my aim was to explore
complex issues in considerable depth with a limited number of participants, this method
of recording was the most appropriate (Green-Powel, 1997, p. 198). Throughout the
interviews the participants were conscious of the recording, but rather than becoming
shy and self-conscious, they were quite concerned with when I needed to turn the tapes
over so that I would not miss any of the discussion. This method certainly helped to
reduce my anxiety about mis-quoting, but more importantly it enabled me to maintain
eye contact and observe body language. Being able to maintain eye contact fostered
more of the conversational feeling that I was trying to achieve and taking my cue from
body language gave me a better feeling for when I could probe an issue that the
participant introduced or if I should let them move on without further inquiry. The
transcripts in Chapter 3 will show that I had minimal verbal participation, but tape
recording each interview gave me the freedom to show, through facial expressions and
body language, that I was listening attentively and subtly encouraging them to continue.
According to Patton (1980), there are three types of interviews: (1) the informal,
conversational interview; (2) the general interview; and (3) the standardized, open-ended
interview. I chose to use the first approach which is characterized by the absence of a
set format of questions. This approach allows questions to emerge from their
immediate context in the natural course of conversational exchange (Green-Powel,
1997, p. 198). Giving each woman the freedom to take the interview wherever they
wanted to and for however long they were inclined to talk, made each interview vastly
different. By the same token, these extensive narratives illustrate that there are many
issues that these women share by virtue of their gender and diagnosis, as well as the
limited cultural discourses available to them7. Not only were there reoccuning themes
among the narratives of these six women, but these were also themes that I recognized
from the narratives in The Gender Politics of HIV/AIDS in Women, Women's
Experiences with HIV/AIDS, and Troubling the Angels. After coming across the same
repetition during her own research, Lather states that "this repetition of themes is a kind
of validity if our findings were being repeated across various sources... then we must
be on the right track" (1997, p. 135).
My first interview was with Ann in October, 1998. I arrived at her home filled with
anxiety and questions. Would she open up to me? Would she see my research as an
intrusion? My biggest fear was of long, uncomfortable silences. This, I thought,
would be one of the draw backs of deciding not to prepare questions in advance. To
my relief, Ann talked almost non-stop for nearly two hours. What 1 had not anticipated
was that she would cry throughout the entire interview. She asked me repeatedly to
understand that she was usually a very up-beat person but that focusing on HIV and her
concerns about her teenage son was painful. There were several times that I began to
feel quite guilty and offered to stop the interview but she said that it was good for her to
get it out and that we should continue. Although Ann touched on many different
7The participants frequently use the language of cultural discourses such as religion, 12-step
programs, psychotherapy, feminism, civil rights or minority empowerment, and medical (Lather &
Smithies, 1997, p. 124).
subjects, she dedicated much of the interview to explaining that she was okay and that
she was in control of this disease. It seemed extremely important to Ann that I
understand that she was a strong woman, a good mother, and loving daughter. As I
listened to her talk and observed how she carried herself, it was not hard to imagine that
these things were true.
My second interview was with Jeanne. As I stated earlier, I had contacted Jeanne on
Shannon's recommendation. Since Shannon understood the criteria for my research, I
assumed that she had either communicated those criteria to Jeanne or had put me in
touch with Jeanne because she knew her to fit those criteria. Within minutes of
arriving at Jeanne's home I realized that this was not the case. Jeanne told me
immediately that she had been infected occupationally, not through heterosexual sex.
However, she was still interested in doing the interview if I wanted to hear her story. It
was at this point that I abandoned heterosexual transmission as a necessary aspect of
my research criteria. I am glad that I made this decision and listened to Jeanne's story
because it strongly emphasized an internal battle that may take place because of the
discrepancy between a woman's self-concept pre- and post-HIV. In Jeanne's case, she
described herself as "conservative and obviously straight". Before her diagnosis her
circle of friends did not include anyone who was gay or lesbian, nor did she associate
with injection drug users or know anyone who was a hemophiliac. Jeanne said that it is
because of her HIV status that she has been exposed to people with many lifestyles that
are different from her own and she is learning how to turn that into a positive
In my next interview, I let go of another research criteria: the absence of an AIDS
diagnosis. Shannon was diagnosed with AIDS in 1996, and despite that fact that her T-
cells had returned to above 200 since then, medically speaking she still carried that
diagnosis8. This was another interview that I was not willing to pass up because the
participant failed to meet my established profile. I knew that Shannon was deeply
involved in HIV/AIDS activism and that this would result in a conversation very different
from the ones T had with Ann and Jeanne. Most of Shannon's self-confidence, self-
esteem, and identity are wrapped up in her role as an activist She is very energetic, and
proud of all of her accomplishments within the local HIV/AIDS communities. Her
confidence and immense support network are giving her the ability to leave a
relationship that she no longer feels is healthy, the drive to return to work, and the
optimism to imagine a future for herself that involves other romantic relationships and
the possibility of raising a child.
My interview with Sarah also focused heavily on the importance of activism. However,
unlike my relatively light-hearted interview with Shannon, my visit with Sarah raised
personal issues that made it difficult An excerpt from my research journal illustrates
my feelings after leaving Sarah's apartment
I cannot help but search for a part of myself in each of these women. Today's
interview with Sarah was hard. I could have been her so easily. We are the
same age and we share a common history of troubled teen years that landed
us in "alternative" high schools and shared many of the same views about
8Since 1993 the Centers for Disease Control and Prevention has included in its definition of AIDS
any adult infected with HIV who has 200 or fewer CD4 cells (T-cells) per cubic milliliter of blood, or
about onc-fifth the normal level (Watstcin & Chandler, 1998).
politics, sex, relationships and education. I was so comfortable with her. It
was like sitting down for coffee with a close friend. She was casual, blunt,
angry, and gratejul all at once.
The words of an undergraduate psychology professor I once had echoed in my head
more than once: "Never get too close to your subjects. It will bias your research and
affect their responses." I'm sure my connection with Sarah did alter the interview. It
became more of a dialogue than the previous three interviews because I felt freer to ask
difficult questions and probe deeper into issues that she raised. Discussing her own
propositions upon entering into interviews with her participants, Leslie Bloom asserts
that "identification with respondents enhances researchers' interpretive abilities, rather
than jeopardizes validity" (1998, p. 18). I think that this identification enriched, rather
than detracted, from my research.
The connection I made with Sarah was not present in my interview with Luann.
Although I enjoyed the brief interview with Luann, I was unable to relate to her life
story. This however was not the limiting factor in the interview. When I arrived at
Luann's, the first difficulty became immediately apparent Two of the side effects of
the medication that Luann had recently started taking were extreme fatigue and an
inability to concentrate. She warned me about this and said that she still wanted to try
to tell me about herself. She did, in fact, tell me a great deal but the interview quickly
became complicated by the arrival of her boyfriend. She began to end sentences by
asking him if he agreed. The presence of a loved one during an interview is not
necessarily a draw back but it does complicate the dynamics of an interview. Later,
when I was transcribing this interview, I asked myself repeatedly if Luann would have
said certain things or eliminated others if we had been alone. However, it was
interesting to watch their interaction, their disagreements, and the different ways in
which they faced their individual diagnoses9. The majority of this interview centered
around her relationship with her boyfriend and around issues of parenting.
My last interview was with Kelly, a young, married, graduate student In contrast to
Luann, Kelly rarely mentioned her husband. She was grateful that he was with her and
that he loved her unconditionally, but he did not play a central role in her detailed
discussion of, what she called, "becoming a person with HIV." Kelly was the first
participant who did not fit my initial requirements for either mode of transmission or
disease stage as she had likely contracted HIV through injection drug use10 and had
been recently diagnosed with AIDS. Much of Kelly's focus was on medical encounters,
her emotional resistance to beginning medication, and issues of trust and privacy. One
interesting component of this interview is that Kelly is working on her dissertation
about AIDS and alternative medicine. Periodically Kelly would start talking about
school or using medical terminology and automatically began to explain. She would
stop half way through an explanation and say, "Oh! I don't need to tell you this." It
was obvious that she wasn't accustomed to discussing these issues outside of academia
9At the time of this interview Luann had been diagnosed with AIDS, but her boyfriend's HIV had not
progressed to that stage.
1^1 say that Kelly likely contracted HIV through injection drug use because when a woman is having
sexual relations with the person she is using injection drugs with, it is difficult to determine a mode
of transmission. Women who use injection drugs with a male partner are often the second users on a
single needle which puts them at a higher risk for contracting HIV if the man is positive. If she is
also having sex with the man she is sharing needles with, her mode of transmission could be either
one. This has interesting implications for how the CDC and other organizations compile statistics on
mode of transmission. According to the participants in this study, mode of transmission was based on
self-report but in this situation there is no way to know for sure how a woman contracted HIV.
or the doctor's office. I could easily relate to this sort of compartmentalized existence
and a connection on this level benefited the interview as much as my more personal
connection with Sarah.
Although my interactions with each of the participants was rich and intensely positive, I
would not want to mislead anyone into thinking that I had managed to establish settings
in which issues of power were neutralized. I discussed earlier my desire to create a sort
of egalitarian relationship where I, the researcher, was not in control of the interaction
and they, the participants, were shown to be the experts. I believe that this was the tone
of each interview, but there were other issues that continuously shifted the balance of
power back and forth between us. Age, race, class, education, motherhood and medical
knowledge became issues for reasons I did not expect. I had thought of these areas in
terms of their affect on women with HIV, but not in terms of the subtle ways they would
affect me during the interviews. Jeanne is considerably older than I am and there were
times during our interview that I felt she was speaking to me as she would a child or
student I frequently hesitated before making any comments about race during my
interview with Ann because I was worried about looking like a foolish white girl who
thought she knew something about what it was to be a black woman in America.
Likewise, I was reluctant to speak to issues of parenting with Luann, Jeanne, Ann, and
Sarah for fear of hearing that uncomfortable sentence that begins, "Maybe when you
have children..." Ultimately these issues can be explained as my own personal
insecurities that spill over into the research process because I recognize these same
cautions in my interactions with friends and acquaintances. However, I mention these
examples by way of illustrating that issues of power between the researcher and the
participants are not by any means unidirectional, but instead are situated and
contextualized within particular intersubjective relationships (Bloom, 1998:35).
Throughout the interviews I worried about the fact that I had abandoned the parts of the
participant profiles which required a heterosexual mode of transmission and the
absence of an AIDS diagnosis. However, when I had finished the interviews and began
listening to them on the tapes, I realized that illustrating the inability to fit women's
experiences into definitive categories was a large part of my project. This is one of the
primary reasons that I chose ethnography and in-depth narrative instead of survey
Despite the fear and anxiety which stemmed from the inherent lack of structure in my
methods, the resulting narratives are moving and they address many of the questions I
had hoped to have answered. In addition, each woman introduced new issues and
questions that would be extremely valuable as a basis for other research ventures
involving women and HIV or AIDS. There were, however, questions that I wanted to
pursue but did not. Some theorists would speculate that I chose not to pursue certain
questions because, as a woman, I have been socialized to be polite and not "pry" into
the sensitive and personal matters of others11. I was acutely aware that whether I asked
questions or sat quiedy listening, my presence as a stranger felt to me like an invasion
of privacy and the topic of my research begged the disclosure of extremely sensitive
thoughts and experiences. However, I made the decision prior to the interviews that I
11See Bloom (1998, p.30) for a more in-depth discussion of polite social communication as an
would allow the participants to guide me through the parts of their lives that they
wished to share, rather than directing or leading them into areas of my own curiosity.
My background in multiple disciplines enriched my interactions with each of the
participants. My studies in medicine prepared me for conversations replete with
medical terminology and helped me to understand the dynamics of the patient-
physician relationship. My background in psychology, sociology, and anthropology
helped me to recognize that each woman discussed their experience from the
perspectives of an individual, a family member, a member of society, and a member of a
Western culture. Although none of the participants label these related realities as
psychological, sociological, or anthropological, they understand themselves to be
experiencing all of these levels simultaneously. Within each woman one or more of
these levels of existence are at odds with the others. Existing in these multiple subject
positions is sometimes referred to by feminist theorists as "nonunitary subjectivity"
(Bloom, 1998, p. 3). Jeanne and Sarah's stories are the clearest illustrations of this
Jeanne's experience of herself is radically different in every environment At home she
sees herself as a woman with HIV, a mother, and a wife. At work she is a nurse without
HIV. In the presence of her own family she is a daughter and a sister with HIV, but her
HIV status is kept a secret from most of her in-laws. Among her friends she is just one
of many conservative, upper-middle class white women. In her therapy groups for
people with HIV and AIDS she is the minority among many gay, white men and black
Sarah, who created an environment where she can move easily between home, family
and her work as an AIDS activist, is confronted with the need to alter all of those levels
for the sake of her daughter. Sarah is proud of herself for being "out" as an HIV
positive woman but she has recently become aware that as her daughter gets older she -
is understanding her mother's conversations about this disease on a deeper level and
this is creating fear that Sarah doesn't want her to experience. Sarah's daughter is also
becoming more vulnerable to discrimination by association to a mother with AIDS.
Sarah has made the decision to "re-closet" her diagnosis in an effort to protect her
daughter for as long as possible. This means that her social interactions will change
The undercurrent of critical social theory, or more simply my desire to assist in
changing the circumstances that these women find themselves in, is directly related to
this struggle I witnessed between divergent realities. Every individual plays multiple
roles throughout their lives child, parent, friend, sibling, wife, husband, employee.
These roles are often at odds with one another. However, women with HIV or AIDS are
faced with the additional complication of being confronted with extreme prejudice in
many, if not all, of the roles that they live. Prejudice and discrimination against women
with HIV has no hope of diminishing if the problem is not identified and made a part of
mainstream, medical, and academic discourses. History shows us that people who face
discrimination are offered no protection until the violence against them (be it subtle or
brutal) is widely known. Therefore, although mine is not directly an emancipatory
project, it is, in part, an effort to add numbers and the weight of repetition to the stories
already available in other texts.
Over the last decade so many gay men with HIV and AIDS have told their stories that
their lives have become the topic of movies, novels, and articles in mainstream
magazines and newspapers. Although gay men with this disease are still experiencing
discrimination, their lives, as viewed by these six participants, are not as
compartmentalized and they are not now as alienated as women with the same
diagnosis. Admittedly, one reason for this is that there is an assumption of community
within the gay male population that does not exist among women12. However, the
other element of alienation is that HIV and AIDS services have been geared towards the
population that was initially hit the hardest. All six of the participants found themselves
in numerous situations where they had gone in search of others "like them", and found
only gay men. Although I am only able to add the voices of six women to what I hope
will become a sound too loud to ignore, they are strong voices from women who are at
once ordinary and magnificent. Only when women are allowed to speak without
tremendous risk to themselves and their loved ones, can they make the connections with
other women which are necessary in order to create communities. Such communities
serve as a much needed source of strength and humanity to anyone with HIV or AIDS.
12That is not to say that all gay men feel a sense of community with other gay men. Rather, the
women that I interviewed felt that generalization to be true in contrast to their own lack of community
in the midst of this disease.
In reflecting on language(s) as a crucial site for social change, theory should precisely
challenge such a compartmentalized view of the world and render perceptible the (linguistic)
cracks existing in every argument while questioning the nature of oppression and its diverse
-Trinh T. Minh-ha
Between Theory and Poetry, 1992
Postmodernism and feminism are complex and slippery terms that have been defined
and re-defined by hordes of people and cannot be summed up in a single paragraph.
Both are theoretical areas that have provided ways for me to think multiple theories
together in an effort to tell stories differently and they have both had a significant
impact on the ways in which I read the stories of people's lives.
As children of the Enlightenment we learned at a young age the "correct" way to tell a
story and to read a story. In the simplest terms we know that as storytellers, we are to
present the beginning, the middle, and the end in a chronological order that culminates
in some form of resolution or lesson. As the reader of stories written in the dominant
languages of the United States and Europe, we are taught to read a text from front to
back, left to right, and top to bottom. It is assumed that both reader and writer of a
given text will follow this order, an order that is super-imposed on the chaotic way that
we experience life. However, it is rare that we come to an understanding of why we
follow these seemingly simple rules and why we frown upon a text or a reader that
In the social sciences, as in all disciplines, we have been taught how to present a
scholarly text There are rules and assumptions that have governed presentation,
representation, and writing styles throughout modernity. But many of these rules and
assumptions have been challenged and their limitations have been exposed. As some
of us in the social sciences take a postmodern turn (be it celebratory or skeptical), we
find that the rules applied to modem texts limit the telling of new kinds of stories.
Human sciences, under modernism, are organized around the privileging of science as
knowledge and the establishment of foundations. Also central are efforts to elaborate
basic premises and concepts into general theories, laws, models, and explanations. The
separation of fact and values, the exclusion of the moral and political from science, and
the assumption of universal truths are all believed to be discoverable and enforceable
through methodological rigor, empiricism, and conceptual justification based upon truth
claims (Seidman, 1994, p. 17).
According to Steven Seidman, foundational arguments are losing their plausibility, at
least in Western cultures (1994). One reason for this is that the premise of an
ahistorical subject of knowledge appears indefensible. The Enlightenment paradigm
assumed that the scientific community, with its culture of objectivity and empiricism,
would free scientists of all social particularities, and thus produce a rational mind
capable of uncovering Truth (Seidman, 1994, p. 10). But whose truth has modernism
been interested in?
The social rebellions associated with countercultures, the New Left, feminism,
homosexuals, and racial minorities, have criticized modernism for perpetuating
inequality and oppression in the name of reason and social progress (Seidman, 1994, p.
7). I am primarily concerned here with the critiques of modernism from a feminist
perspective. A guiding assumption of Western feminism has been the gendered
character of social realities and knowledges. Many feminists have criticized the
Enlightenment paradigm as favoring mens interests and values. Despite the intention
of modem value systems to advance human freedom, its concept of knowledge helps to
perpetuate the dominance of mens interests, values, and Truth (Seidman, 1994, p. 10).
Feminists and others have argued that conceptions of reason and logic are not innocent
and that universal claims appear so only through exclusion of thaf which does riot fit
their coherence (Lather, 1990, p. 329). One method of presenting universal theories
has been through grand- or meta-narratives. Metanarratives refer to foundational
theories of social progress and have been central to the legitimation of modem
knowledge. They presuppose an ahistorical standpoint from which to Understand the
human mind, knowledge, society, and history. Lyotard asserts that one theme of the
postmodern turn is the decline of the legitimating power of metanarratives and, he
argues, they have lost their authority to justify modem social practices (1984, p. 27).
Lyotard further suggests that the decline of the legitimacy of such narratives reflects a
considerable doubt about the credibility of an ahistorical standpoint or of a universally
valid knowledge (Seidman, 1994, p. 5).
The telling of these metanarratives under the guidelines of modernism resulted in a
taken-for-granted format for social science research. Readers and writers of a-text
produced in the social sciences came to the text with a set of assumptions about the
work. First, the author was a scientist who championed and adhered to the values of
modernity. Second, the author would be writing about an Other who was separate and
distinct from /wnself13. Finally, the reader could be relatively certain that the Other was
"inferior" to both reader and researcher. Let me briefly clarify this last assumption.
Readers and writers of social science research likely gave minimal thought to the belief
that those deemed worthy of study were considered to be "less than" the researcher.
Although this was rarely stated outright, frequent comparisons of the "subject" to the
superior norm of the great, white, literate, and relatively affluent author, made the "fact"
clear to the reader. Further, since the social scientist was to be objective and distant so
as to properly utilize the transparent and neutral medium of language, rarely (if ever),
did the reader believe that she or he had encountered the writer in the text.
Lather asks us to examine closely the assumptions of neutrality, objectivity and
rationality that undergird these modem texts that social science is being judged against
(1990). "Absolute knowledge was never possible...Archimedian standpoints have
always been shaped in the crucible of the power-knowledge nexus"(p. 322). In the
l^This is a traditional approach that some anthropologists refer to as "making the exotic familiar"
postmodern turn we argue that modem sciences are wrought with bias, subjectivity,
values, and politics and that to state that the inclusion of those qualities is what makes
contemporary research "unscientific" is hypocritical. The difference between modem
science and postmodern science at this level is that the values of the former dictated a
denial of those concepts, whereas the inclination of the latter is to celebrate them, or at
the very least, be cognizant of their influence on research and theory.
Central to the postmodern turn in the realm of knowledge is the shift from a language
erf subjeet-objeet dualism, objectivity, and truth, to a perspective which asserts the
interconnectedness of knowledge and power (Seidman, 1994, p. 9). Postmodernism
seeks to marginalize or displace the hierarchical oppositions between researcher and
researched. Social knowledge becomes understood as constructed though a
combination of empiricism and moral advocacy, theory and narrative, analytical
abstraction and intuitive rhetorical gestures (Seidman, 1994, p. 14).
A new "science," as codified by conventional methods that marginalize value issues, is
being reformulated in a way that foregrounds science as a value-constituted and
constituting enterprise. Neutrality, objectivity, observable facts, transparent description,
clean separation of the interpreter and the interpreted all of these concepts which are
basic to positivist ways of knowing are called into question (Lather, 1990, p. 316).
Binary either/or positions are being replaced by a both/and logic that deconstructs the
ground of both reductionist objectivism and transcendental dialectics. Linearity and
teleology are being supplanted by chaos models of nonlinearity and an emphasis on
historical contingency. Power is assumed to permeate all aspects of our efforts to
know, and language is theorized as constitutive rather than representational (Lather,
1990, p. 316). All of these changes are occurring under the rubrics of
"Postmodernism" and "Poststructuralism".
Postmodernism has been conceived of as both anti-modem and hyper-modem. The -
prefix "post" can signify an active rupture with that which precedes it or as a
dependence on, and a continuity with, that which it follows (Best & Kellner, 1991, p.
29). Postmodernism calls for new categories, modes of thought, writing, values, and
politics to overcome the deficiencies of modem discourses and practices (p. 30).
Postmodemity is characterized by a loss of certainty and a "Gods eye point of view"
in the sphere of knowledge, the loss of a central, organizing principle governing society,
and a decline in the belief in a unitary, coherent self (Seidman, 1994, p. 6).
Zygmunt Bauman asserts that postmodemity features a process of de-differentiation or
the collapse of boundaries and a loss of an epistemic and social center (in Seidman,
1994). Building on the theories of Nietzsche and Heidegger, poststructuralists stress
the importance of differences over unities and identities. They also champion the
dissemination of meaning over its closure in totalizing theories and systems. Indeed,
postmodern theories encourage a collapse of the boundaries between philosophy and
literary theory, or between philosophy, cultural critique, social theory, and other
academic fields. This collapsing, or problematizing, of boundaries has resulted in more
playful and diverse modes of writing, while subverting standard academic boundaries
and practices (Best & Kellner, 1991, p. 23). Examples of this play and diversity can be
found in the writing of Foucault and Lyotard.
Foucault valorizes the efficacy of discontinuous, particular, and local criticism as
compared to the inhibiting effect of global, totalitarian theories, at both the theoretical
and political levels. While he acknowledges that global theories such as Marxism and
psychoanalysis have provided useful tools for local research, he believes they are
reductionistic and coercive in their practical implications and need to be superseded by
a plurality of forms of knowledge and microanalyses (Best & Kellner, 1991, p. 39).
Although Foucault dedicates a significant amount of time to calls for microanalysis and
new modes of writing the resulting narratives, he fails to disrupt the narrative style to
the extent found in Lyotards work. From the mid 1970's forward, Lyotard's focus has
been on metalanguage and totalizing theories. His strategies are linguistic, providing
new ways of theorizing, talking, writing and the production of a patchwork of minority
discourses (Best & Kellner, 1991, p. 159). The goal here is to disrupt abstract
theoretical discourses with figural discourse and to overthrow hegemonic discourses
with new discourses that employ transgressive literary strategies (p. 152). In this vein,
Lyotard argues that the little narrative, or petit recit, remains the quintessential form of
imaginative invention (Lyotard, 1984, p. 32).
Because postmodernism does not judge a theory as invalid based on a lack of
consensus among its theorists, numerous social scientists and theorists have suggested
ways in which all of the above mentioned assumptions might play out For example,
Zygmunt Bauman urges the interpretive social analyst to approach communities as
texts with the intention of translating the unfamiliar into the familiar. Interpretive
knowledge is valued to the extent that it legitimates difference, expands tolerance,
promotes diversity, and fosters understanding and communication between different
groups. Bauman sees human studies as a literary textual analysis that resonates with
the spirit of ambiguity, tolerance, playfulness, and diversity central to the postmodern
sensibility (Seidman, 1994, p. 14).
Renato Rosaldo speaks to the separation of objectivity and subjectivity in ethnographic
writing. He states that classic social science has endowed distance with excessive virtue
and closeness with excessive vice. Distance normalizing accounts all too often lead
ethnographic writings to translate the compelling events of daily life into the routine
performance of conventional acts. Rosaldo contests the equation of analytical distance
and scientific objectivity by arguing that social analysts should explore their subjects
from a number of positions, rather than being locked into any particular one (1994, p.
171). He further argues for the inclusion of human feelings and failings as they
provide as much insight for social analysis as subjecting oneself to the "manly" ordeals
of self-discipline that constitute science as a vocation. Why not, asks Rosaldo, use a
wider spectrum of less heroic, but equally insightful, analytical positions (p. 173)?
Steven Best and Douglas Kellner, who write about many of the above mentioned
theorists, argue for the benefits of multidisciplinary compromise. They argue that in
both the theoretical and political spheres it is sometimes valuable to stress differences,
plurality, and heterogeneity, while in other contexts it may be preferable to seek
generalities, common interests, and consensus (1991). This type of flexibility is the
key to a successful strategy, one that has the potential to stimulate social change and
intellectual discussion. After all, a strategy is only effective if it is endlessly revisable in
the light of struggles and results (Rattansi, 1995, p. 280). However, to some, this
flexibility looks like indecisiveness and bad form.
Trinh Minh-ha, who has been criticized for using "impure" or mixed methods,
combines theory, poetry, visual imagery, and oral as well as written narratives, in her
presentation of lived experiences. She discusses how her methods have attracted a
great deal of criticism but argues that her work results in a complex representation of
oppression and struggle in language, politics, economics, and culture (Minh-ha, 1992).
That definitive techniques for narrative analysis, ethnographic writing, and other forms
of writing in the social sciences have not been agreed upon does not indicate a failure
on the part of the methods to generate valuable information, because a single rigid
formula for study is not the goal. Technical variations among researchers and writers
are not viewed as "errors" in a postmodern framework, but rather as critical "data" for
analysis. By refusing to produce a tidy text, a "comfort" text that maps easily into our
usual ways of making sense and "giving sense", others, like Minh-ha, attempt to reach
toward a generally accessible public horizon while moving from a "realist" to an
"interrogative" text (Lather, 1996, p. 529).
For example, rather than a seemingly unmediated recounting of participant narratives or
an unobtrusive chronicling of events as they occur, Lather and Smithies both "get out
of the way and in the way" of their work in Troubling the Angels. In this manner they
draw attention to the politics of knowing and being known as they tell stories that
belong to others. The authors deal with the interpretive and textual tensions involved in
creating a book that would both construct a place for the participant's stories and also
take into account the crisis of representation (Lather, 1996, p. 529). By troubling
notions that all women with AIDS are the same as each other and different from the
researcher, the text cancels the distance between subject and object, reader and writer
and written about (Lather, 1996, p. 533).
This "hypertextual pastiche" is illustrative of the lives of the participants and the
researchers (Lather, 1996). The format doesnt always make sense, but neither does
life, womanhood, motherhood, sexuality, disease, or death. The book is not a snap-shot
or a still-life of "subjects". The authors took a risk. They did not force the narratives
into clean boxes and, consequently, they complicate how we expect to be told someone
elses story and how we expect to tell someone elses story.
One of the primary criticisms of postmodernism is that it is nothing more than opinion
and mental masturbation for intellectuals; that it is theory with no practical application
for lived experience. However, the work of Patti Lather, Chris Smithies, Trinh Minh-
ha, Ruth Behar, and others like them, illustrate how Foucauldian power relations,
Lyotards petit recit, and the complex linguistic moves of poststructuralism, can enable
us to tell a different story and do a different science. These theorists create texts that
go against the rules of modernity and invite the reader to create their own style, be it
erratic or structured. The authors have chosen to "give sense" to the text in ways that
beg the reader not to make sense of it through the traditional formula but instead to
stretch meaning across a multiplicity of realities, time frames, mediums, genres, and
My hope is that as you, the reader, digest the narratives in the following chapter that
you will keep the above discussion in mind and that you will bracket the categories and
prejudgements that you ordinarily bring to the interpretation of someone else's personal
story and allow yourself to listen to the narrators tell you about their lives as they
experience them. When conducting or reading an interview it is easy for the researcher
or reader to hear the voice that adheres to the dominant script and fail to hear the
woman's "muted" voice(s) that are informed by her own immediate experiences. There
is not an obvious distinction between these two voices because they are interactive and
In Learning to Listen (1991), Kathryn Anderson explains that with an adherence to
strict methods and conventional rules for social discourse, the researcher may be unable
to locate contradictions that are inherent in the narrative. Anderson notes that
researchers (or readers) ability to fully listen is further constrained when they are
preoccupied with how the speaker's words fit into the framework of the larger research
project and goals. Therefore, in order to allow for the full complexity of a story,
listening to the narrator must take priority over the desire to do an immediate analysis.
It is in this uncritical space that you may begin to let go of the urge to resolve
inconsistencies and contradictions within each story and breathe in the complexities
that unintentionally explain why issues of race, class, gender, politics, sexuality, and
power can not be theorized as discrete entities nor can they be properly analyzed
independently unless the gestalt of their interconnections are first heard without
judgment and understood within context Once such a space has been established, we
can move on to interpretation, examination, additional research, and finally, action14.
14By "action" I am specifically referring to intervention, advocacy, activism, and policy making.
Stories go in circles. They don't go in straight lines. So it helps if you listen in circles
because there are stories inside stories and stories between stories and finding your way
through them is as easy and as hard as finding your way home. And part of the finding is the
getting lost If you're lost you really start to look and to LISTEN.
Parabola: Myth and the Quest for
I initially identified eight narrative themes based on their reoccurrence throughout all
six of the interviews and the perceived emphasis that each participant placed on
particular issues. These topics did not arise as a result of questions that I had asked.
Rather, each participant addressed them in different orders within the course of telling
me her story.
In the interest of time I reduced the number of themes to five: Diagnosis, Disclosure,
Medical Encounters, Surveilling the Self, and Children. Other themes that I would have
liked to include were those surrounding intimate relationships, developing bonds
between heterosexual women and the gay male community, and education and activism.
I made the decision to address fewer topics at greater length and hold onto the rest for
future work. Although the parts of the narratives that concentrate most heavily on the
five remaining themes were placed in those sections, they do overlap. The participants
discuss their children in the context of their diagnosis and fear of disclosure. They
discuss disclosure in the context of medical encounters, and so on. This is illustrative
of the way that we tell stories and the way in which we live our lives. Nothing can be
placed comfortably into clean categories, so ultimately, both the choice of themes and
much of the narrative placement is based on what I felt that the women emphasized and
where each theme fit best for readability.
I have not laid out the specific demographics of each participant My reasoning for this
is to give the reader an opportunity to "discover" the participants with fewer pre-
judgments. In the course of the interviews, most of the participants talk about the way
in which they were infected. Most of the women discuss their race, religion, or sexual
orientation at some point during the interview, but these were not questions that I asked
them in advance or during the interviews. The names of the participants (Ann, Jeanne,
Luann, Shannon, Kelly, and Sarah), are a combination of pseudonyms and real names.
I gave each participant the freedom to make a decision about how she wanted to be
identified. Those who chose to be identified by their actual names said that they didn't
mind because they were "out" to everyone and that position was empowering. Those
who chose to use pseudonyms said that they preferred not to be identified in an effort
to protect themselves and their loved ones from discrimination. Both choices make a
profound statement about the risks involved in sharing an HIV positive status with
friends and strangers alike. In addition to the ethical promise of anonymity associated
with die majority of human research, it is with the awareness of these risks that I can
easily justify my decision not to disclose to the reader which participants opted for
pseudonyms and which ones did not
[Note: In the narratives that follow, the participant's words are in non-stylized text and
my words are in italics.]
Theme One: Diagnosis
I'll just start at the beginning. At one point my father, he needed a blood transfusion in
1992. At that time they received all the blood from the hospital that he was in. But that
was a time when I thought that I really should go to one of the blood banks and set up
a family fund for my father or anybody in my family in case something happens.
That's when I found out that I was HIV positive in August of '92. So I am a long term
survivor. I contracted it through heterosexual sex. I'm extremely healthy, my T-cells
are about 1,044, they're extremely high, they're about as high as a normal persons
would be, and I know that has a lot to do with I've never drank, I've never smoked,
never did any drugs, and I've always worked out, and I've always been extremely
physically fit. And I know it has a lot to do with it. And on top of that I think
spiritually I'm very strong so I'm just determined not to let this pull me down.
When you were diagnosed with HIV, did you know who you got it from?
No.....there's a couple of people that I thought of. I had a friend.... it always seemed
like he had an illness but he would never tell me what it was because he was sickly.
And then I had another friend that I know. He did a lot of drugs in his past and at the
time that I was dating him he was, supposedly, he was clean but I wonder now and to
this day I still don't know specifically who I contracted it through because at the time
that I contracted it I was already divorced and dating. So I have an idea of two people,
but I'm not sure and 111 never probably know.
And they're not people that you've kept in contact with?
One is and he claims that he is full-blown AIDS, but I don't know because he's not that
honest. Its hard to say. He also has a liver condition, and I don't know which is
affecting him really. And the other person, I completely lost contact with. So I don't
know if he's even alive.
I was sick in August of '96. So I've just been positive... it's almost exactly two years. It
was at the beginning of September when I found out that I was positive. So in August
of that year I was, I was just out of it. I was so sick. I had a rash on my legs and on
my arms, and then I had the thrush in my mouth, and I had lost so much weight and I
wasn't eating anything, I wasn't doing anything, I was just sleeping all the time. I didn't
have any energy to do anything, and my urine was really dark and concentrated because
I just didn't feel like eating or drinking or anything and I thought it was just the flu. I
just thought that I'd come down with something and we had just gone on this long trip
and I.. y'know you're over doing it and you're pushing yourself and I was just feeling
kinda run down. When they first told me it was the flu I thought well, okay. And
when I didn't get any better I knew that something was just not right here. It's like my
aims and my legs felt really heavy. Usually I go like a hundred miles an hour and I
wasnt going, I wasn't going anywhere.
How long did it take them to actually diagnose you? You said somebody that you
worked with decided to go ahead and test...
Well, this friend of mine was coming over every day. I was off work for three weeks.
So it was at the beginning of August when I had gone in, and a week had gone by or so
and I wasn't getting any better. I don't know exactly like the time frame of it And then
when they finally did draw it was almost like I felt like I was being... not sabotaged, but
kind of evaded or something because they told me that the test tube had broken and I
had to be re-drawn. So I'm wondering if they might have thought that I had a false
positive or something and wanted to recheck it and I can understand a lab error and all
that. It happens. There was three times where I had to be re-drawn and then they told
me on the phone that I... instead of calling me in or bringing me into the office for an
appointment. And that, to me, was unacceptable, but it happened and I went in like the
following few days or something and talked about the whole thing and what it felt like
and what was going on and the misrepresentation of being drawn and not being told I
just felt like was excessive. It was like, I had everything drawn. I had hepatitis drawn
and I had... it seemed like a gazillion at the time. And then each time it got harder and
harder to draw because I was sicker and sicker. At one point I'm in a wheel chair and
I'm going across the street to the lab at the hospital because they couldn't draw me at
the office because I was so dehydrated and it's a hard stick and so that part was a drag.
Who called you? People from the lab or your doctor?
I was seeing a P.A. in a family practice office and she called and told me. And it was
homecoming. My daughter didn't want to go to homecoming because... and I was by
myself, John wasn't home. So that was weird, that was really weird. But she called
and then we set up an appointment to be seen like in a couple days or something. And
of course he was with me. He stayed home from work several days to be with me and
then went in with me to be seen and be followed up, and then it's a matter of getting a
referral to another doctor and then you start all over, you start all over with all your
blood work and your whole story. And it means several other interviews with the CDC,
and we were already seeing a shrink because we had just been newly married. We'd
only been married a year. So, it's just like an avalanche. It was just like an avalanche; it
was just so overwhelming.
[The interview with the CDC] was awful. If you've ever talked to those people and if
you have to... Ugh! You don't want to think of yourself as a number and you go back
in your head and you think of every relationship that you've had, and with this
particular interview it's very, very intense. You're in their office on their turf. You can
have no one with you. You have to sign your life away. They ask you every question
you can imagine. Upside-down, backwards, socks on, blue shirt, Wednesdays, Fridays,
oral, anal, ears, nose, throat, whatever it is I'm telling you, they are in your face. And
maybe they don't mean to be.
Is this an interview you have to do?
No, you don't have to do it, but I didn't know at the time. I didn't know. I thought I had
to do it. This is the CDC for god's sake15. This is the State of Colorado.
Is this something that your physician refers you to?
They have to because it's a reportable disease. They have to report it. So you get this
phone call. This lady comes to my house one day and I wasn't here, and my husband
had to talk to her. Of course she wouldn't talk to him because he's not infected. So
then the next time she came to the house I talked to her just briefly and at that point it
was just too new and too fresh, and I was just a wreck. I was using Kleenex like
people change their underwear. It was ridiculous. I wasn't making any sense, I wasn't
talking clearly, I was a blithering idiot.
She just showed up at your house?
The first time she did. The second time, she leaves her name and number and her card
with my husband, and of course he knows what it is because he knows.... he knows
everything and so she's calling me and wanting to set up another interview. And then
I'm trying to decide what to do with a physician, and do I do it? Do I not? Is it
reportable? Yes, it's reportable and I have a sense of responsibility. Am I supposed to
do it? Am I not? What am I doing here? Is it going to involve my job? Who's at risk
here in terms of finding out? Is it jeopardizing my livelihood? All those things. And if
I had to do it over again I wouldn't have done it because it was very invasive.
They don't tell you that it's optional?
They're real pushy.
They make you feel like...
...You have to do this. And there's ways of presenting that in ways that you feel like
you have to do it And I was real vulnerable.
It's a federal thing. It's impressive, it's authoritative.
It's this huge, big, official thing and they have all these credentials behind their name.
Well, I don't care. She puts her clothes on the same way I do, but you don't know that
at the time or understand it fully to be able to make a good decision.
15When the word "god" is used in the narratives, it will be capitalized only if it is being used as a
name, otherwise it is in lower case. I have seen writers use brackets ([G]od), but I find this method
I was diagnosed in 1990 after just moving here to Denver. I had lived in Hawaii for
four years and I lived over in Japan for a year and then did business between Hawaii
and Japan for a few years. I was trying to get out of a bad relationship, and so I moved
home for a little while to Wisconsin, and then just chose Denver for some strange
reason. I think Mork and Mindy had something to do with it [laughter]. My daughter
was a year and a half old. I was in okay health. I had some complications when 1 gave
birth to her and was having trouble healing, but there was nothing that was going on
that I would have sought out HIV testing. I found out I was pregnant from the last time
I had seen my then husband and so I was at my first gynecological appointment and
the doctor suggested to everybody that they get the HIV test when they came in
pregnant. They asked me if I had any risk factors, and I knew he had been with
prostitutes in Asian countries. He was a business man who traveled all over to the
Philippines and Taiwan and Korea and China. I had a blood transfusion in Korea, and
so although that was in the back of my mind, even in 19901 still thought of it mostly as
a gay disease. I knew it had spread to some parts of the heterosexual community, but I
wasn't an IV drug user, and I had the same hang-ups that most people have now. Low
and behold it was the test that came back positive. They tested me for all the other
pregnancy stuff but it was the only test that came back positive.
The way I looked at my life and myself kind of changed in an instant. It was a really
tough time. I didn't reach out for any help. I was brought up in an upper middle class
family and was student president and honors society and choir and band and French
Club and anything I could be in I was in. It really knocked me for a loop and made me
look at myself differently and I wanted to die and I went for two and a half to three
years feeling just miserable and then I got pregnant with Anthony and it really woke me
up. There were studies going on at the time with AZT and pregnancy, and I was on AZT
already. It was a really stressful time because it was a big decision whether to keep the
baby or not We did a news stoiy and a lot of people called in for each side. Some
thought we were just horrible for deciding to keep him and some thought that it was
great and brave. It was really rough carrying Anthony because I was really concerned
whether he would come out positive or negative. I took really good care of myself
through my whole pregnancy. We started getting hooked into some of the agencies in
town to get help from, and it really made a big difference. We started actually dealing
with the disease instead of waiting for death to come and letting it control us.
Was your current partner positive when you met him?
No, he was negative when I met him.
Did you know you were positive at that time?
No. I kind of jumped into this relationship when I first moved here. I'd just seen my
ex like three or four weeks before I moved here. I was just pregnant and didn't know it
actually. I figured it out about a month into the relationship, and it took another two
weeks to talk myself into going in and actually knowing for sure. He came with. I was
open with him about the fact that I was splitting up with my husband. I met Jack my
first day here and started seeing him like a week later and I didn't think too much about
it. He was supposed to be the rebound person [laughter] but we kind of got stuck. So
he went with me when I went to my doctor's appointment and....actually that's the way
he always tells it.... actually the way it went [laughter] was that I was told the day before
Thanksgiving, and I didn't see him on Thanksgiving. We were too new to do holidays
together. I had my one and only friend from Wisconsin over on Thanksgiving day and
then I saw him the day after and I told him that day that they had told me that I was HIV
positive. That was really hard because I expected a huge blow up and for him to think
that I knew before. But he had been right along with me. He said that he was already
falling in love with me and if I wouldn't have had this baby he would stay with me
anyway, and when I told him about the HIV he was stunned at first but then pretty much
the same thing. "I still feel like I want to be with you no matter what that means." By
this time it was like two months, and we had already been having unprotected sex and
we continued to have unprotected sex. He said he didn't want to wear a condom and
thought that the rates of women giving it to men were so low that he had barely a
chance of getting it. This was all in November, and in February he went and got his
first test and it was negative, and then in May he came back with a positive result. He
was probably already positive in February. We've been together ever since.
It's been really rocky because we didn't know each other very well, and now there's this
sense of responsibility. He had his own little lies that he told at the beginning that we
had to deal with. It's been a not too fun time at times and at other times it's been great.
He says that he's not angry at me for getting it from me but then when times get really
rough and I talk about breaking up then all of a sudden it comes up, "You gave this to
me. I know you didn't do it on purpose but how could you give this to me and then
want to leave me?" Eight years later the guilt trip comes. So far it's worked. My life
has definitely not been what I thought it was going to be. That's the biggest thing that I
could say. It's said neither negatively or positively because it's been both. It's made me
see things in a way that I probably would never have seen things. I was kind of
materialistic and before all this happened I thought I was going to have a great
international business career and I'd had a lot of success in business early on. I was
cool with just having my daughter and I being together and was really planning on
Denver being a new start and it was a horrible relationship that I got out of. So it
jumped sort of from one set of difficulties into another set.
Do you know if you were infected through the transfusion or through your first
Is he positive?
He won't be tested. He's Japanese. He lives in Japan. It's a whole other culture. He
refuses to be tested, but he died in November of last year. His wife told me that he died
in a sauna. That he fell asleep in a sauna, they were on a business trip. The Japanese
word she used would have meant "burned to death." But the whole thing seems really
fishy to me. I believe, or have an inkling, that he might have found out right before that
happened, that he was positive and couldn't live with it. It was a flat out refusal. He
was a rotary club member, and he was a business man, and there was no way he could
let anybody know that he was positive. That was his view point from the very
beginning. I used to stress to him all the time, "You're not feeling good. You need to
go get tested." And he'd say, "Well, maybe I will someday, but not now."
Are you still in touch with his wife?
No, I haven't talked with her. I don't know what she knew and what she didn't know.
It's a really uncomfortable situation for my daughter especially and I don't know what
to ask her about. I don't know what to talk to her about. They're so touchy. It's a
whole other way of looking at things over there. His brother was dying of cancer and
wouldn't let anyone know he was sick with cancer like ten years before I met him. The
blood transfusion I can't check out I was in Korea with him on a trip. We had gone
over there for one of his friend's business associates was getting manied and we went
back to the hotel room and I started bugging him about when he was going to move in
from Hawaii and he was really, really drunk and he hit me over the head with a garbage
can and it caught on it's edge really hard on the side of my head and he was so drunk
that he didn't care, and I passed out for a little while and kind of came to and made it
down to some friends rooms that had come with us and I had lost a lot of blood by the
time they got me to this clinic that was like my one and only time there and he was so
drunk he didn't even know that I had gone to the clinic and didn't know where I was
taken care of. At least he never told me and I never really asked either. I knew that it
was one of two things. It was either heterosexual sex with somebody or it was that and
it didn't really matter anymore. So it hasn't been something that I've dwelled on a lot
A lot of people are surprised when they meet me and start talking to me.... people just
wonder and are curious as to how I got it because they expect it to be somebody who's
either been a big partier or, not necessarily even an IV drug user, but somebody who's
gone out and had a wild life as a teenager or something and that wasn't me. I drink
other people are more concerned about it than I've ever been. Even my doctors were
more... for me it's one or the other. It really doesn't matter how much we find out, as
long as I told him. I'm one of the innocent ones [as far as the stigma is concerned].
Just out of curiosity, you're registered with the CDC, right?
What do they have you listed as? Heterosexual transmission or blood transfusion?
I don't know. About six months after I was diagnosed, somebody came out and
interviewed me, and I don't know. I would guess they would put me under
heterosexual because it's not a sure thing and I couldn't identify where the blood
transfusion occurred. Can I call and find out?
I would think. It's your information.
I remember that day vividly getting interviewed. It was one step closer to hitting home
that I really had it, and so even though I can say I remember the interview, I was in kind
of a daze. She called first. She was a nice lady. Jack had a totally opposite reaction as
a man. As a heterosexual man he had a guy come out that badgered him about whether
he was telling the truth that he had never had sex with men. It was like he refused to
believe that he could get it from a woman so he had to be lying.... I had a woman come
out. She kind of sat here with a cup of tea and I told her about my few little number of
other people who I've been with and about my background and talked about IV drug
use but she never did that to me with IV drug use like they would do to a man about
sex with other men.
So she was ready to accept the idea that you were a victim?
Yeah. I was a victim in one way or another. I had been with five people, this is
probably why she thought that way. I think I almost cried. I'm Catholic, and I fully
intended to follow all of the rules [laughter]. When I sat through sex education I
thought there was no way I'd have sex until I got married. Oh my god, no! So, when I
went to Japan I broke two major commandments and I think after that I felt just a little
bit differently about myself and then was so ashamed of myself and when I came back
home I never went to church and here's this lady asking me about my sex life, and I had
to admit that I'd been with five people. I was sitting there thinking, god what a whore
and she just laughed at me because I was so upset She said, "That's really minimal
compared to most of the people that I interview." I was like, "It is?" [laughter]. When
I look back, I must have looked pretty foolish. I was really pretty innocent I didn't
feel innocent I felt like, my god, how did I screw up my life?
It's all a matter of your reference point.
And my reference point was from my family, handed down. My brother was gonna be
a priest. We were really active in church and I don't know what happened in Japan.
My dad died when I was thirteen and my mom handled it totally the wrong way and so
I had an idyllic childhood until the time I was thirteen. She was a teacher and a high
school counselor and he worked for the school system. My mom worked at a normal
high school during the day and an alternative high school at night, she was friends with
everybody. It was just perfect.
I was infected by my ex-boyfriend. We were together for about 9 months, and he lived
in Nebraska. For probably the first 3 months I stayed here. We did the long distance
relationship type of stuff. My life was really kind of messed up here as far as
financially. I lost my job and had gotten a job but was really struggling to make ends
meet and he said, "Why don't you move out here and move in with me? You won't have
to pay rent, and you can get a job out here and all that money can go toward getting
your bills caught up." He was a fine man, and after a lot of discussions with myself I
decided that it would be a good thing to do and so I moved out there and moved in with
him and life was good for the first few months. I got a job right away and my bills got
paid up, so that was a really good part of it and his behavior started to change and was
staying out later and later and later and not coming home and would call with excuses
he was some place else, and I found out that that's not where he was and so I started
getting really suspicious as to what was going on and then I came home from work
early one day and found him with another woman. And it was a friend of mine too.
After that confrontation I left for a while and came back and packed and left. My sister
lived an hour away so I just went and stayed at her house and kind of gathered myself
and then came back here. Luckily enough I had the experience, I'm a certified medical
assistant, and I was able to find a job relatively quick. I stayed at friend's houses in the
meantime until I found a place to live and was really getting my life settled. Found a
good job and was really starting to get back on my feet again. My Mom and I had the
conversation. She didn't know exactly why I had left him and so we had the
conversation about this is why I left him and she said, "He was sleeping around. You
should probably go get tested..." for the other STDs. We didn't even talk about HIV, but
like chlamydia and gonorrhea and all those things and 1 said, "As a medical assistant I
should know that." So I went in and we just made it my routine female exam and did
everything. But we never talked about HIV, and it wasn't until... actually the moment I
brought it up was when her medical assistant had the needle in my arm and was
drawing my blood, and I said, "While you're there draw enough so we can do an HIV
test." Because a few years before that 1 had a needle stick incident where I got tested
for 6 months and they tested the lady and everything was fine from there, but it just
enhanced my knowledge a little bit more and my awareness about it.
They tested you for HIV back then?
Yes. So since then I had gotten a test about every 6 months just.. I knew about the
window period, that there wasn't a chance that I can get it after a year from her but I just
continued doing that That was on a Wednesday, and I got a phone call the following
Tuesday from her medical assistant that said that she would like to see me in her office,
and I knew she was on vacation that week and they said, "She wanted to see you
tomorrow." And I was like well something's wrong if she's coming off of her vacation.
I have had cervical dysplasia and cervical cancer since I was 18, and so I just assumed
that one of my PAP smears had come back abnormal again, and we had said that if it
came back abnormal we were really gonna sit down and have a long talk about having a
hysterectomy and so that's what I thought it was all about. Her office manager was my
best friend and her medical assistant and I went to school together and we were friends
and they knew for two days before they even saw me that I was HIV positive. To this
day I can't imagine what they went through. I talked to both of them on the phone
almost every night and they couldn't tell me. I just can't imagine what they were going
through. So I went in and I knew something was more seriously wrong than just the
cervical stuff because I sat down at her desk and she pulled her chair around and sat
right next to me and grabbed my hand and I was like, "Oh, something's bad." With
tears in her eyes, because I used to work with her too, she said, "I don't have good
news." And prepared myself basically for cancer because of all that history I've had,
and when she said my HIV test had come back positive I kind of went numb for
probably the first 5 or 10 minutes and then I lost it. I bawled and cried and she gave
me a few things to throw and I stayed in her office for 3 hours just kind of talking and
trying to figure out what to do, and she didn't know much about it. She had never had
to tell anybody that their test was positive before.
What year was this?
Ninety-two. So she wasn't sure, so we kind of looked in the book trying to figure out
who I needed to go see, and what I needed to do, and I know that I was part of that
conversation but I don't remember any of it because I just went numb after that. I
called my brother and was trying to find my family to figure out where they were all at.
I had no qualms about telling my family right away. I ended up telling my brother on
the phone.... So I told my whole family and that was a lot of mixed emotions and Dad
was angry and was angry at me. I'm the oldest of seven so it's like, "You're the role
model and you're the one that's supposed to be perfect and you're not supposed to let
this stuff happen and so how could you do this?" Very staunch Christian so he's like,
"Sex outside of marriage, I told you you'd get in trouble with that", and just a lot of nice
choice words he had for me. A typical father reaction I think. But then he was the one
who said, "You need to go call Steve because he needs to get tested."
My boyfriend that I had just broken up with. Dad said, "Since you're not with him but
you need to make sure that he knows that you've tested positive and he gets tested and
anybody else." So that evening I went upstairs and called him and it was the first time
we had talked since I left... And I told him that I had gotten my HIV test back and that I
was positive and he needed to get tested and anybody else that he might have been with
needed to get tested and that's when he told me he knew he was positive. He was
diagnosed about 5 years before we met So he knew when we were together that he
was positive and just didn't tell me. So after many choice words on the phone after that,
I got off the phone and really became hysterical at that point in time. My dad came in
and I told Dad, and then of course had to hold him back with my 3 brothers and the
shotguns and the rifles. There was a lot of anger.
Did he have any bizarre rationale for why he never told you?16
No. Just, "I knew I had it Sorry it happened to you. Have a nice life", basically17.
That was his end of the conversation.... Through friends following him after I left
Nebraska.... I have been told that he did pass away four years ago.
You said he had an affair with a friend of yours...
study of 203 patients presenting for primary care for HIV concluded that 40% of them did not
disclose their positive status to their sexual partners. They further concluded that of those who failed
to disclose their seropositive status, 57% reported that they used condoms during less than half of their
sexual encounters in the previous six months (Stein et al., 1998).
17In the above mentioned disclosure study, the most common reasons for not disclosing an HIV
positive status to a spouse or significant other were "too stressful", "partner would leave", "need to
deal with my own emotions first", and "partner couldn't handle it" (Stein et al., 1998).
She never tested positive. She called me three days later after I talked to him.... She
said she didn't understand why I would call Steve and tell him I had gonorrhea. And I
was like, "I didn't tell him I had gonorrhea." So I ended up having to tell her and she
didn't believe me. I had to send her a copy of my blood work to say that this is really
what happened.... It was hard to have somebody that I trusted that much and loved and
we had talked about getting married and a complete deception. I don't think that he was
ever really truly honest with me the whole time we were together. I mean the nights that
he wasn't with her and he was staying out later and later and later he was shooting up
drugs, he was hanging out with his buddies and doing heroin.... It's always that tiling
you can always look back and hindsight's always 20/20, and the conversations that we
had, he had a really hard time... one of his friends died of AIDS, and he had a really
hard time with that, and I just thought that this was passion and compassion that this
man had. Then I heard the story was that he and another woman and this man were in
a menage a trois for like a year and a half or so. He was actually experimenting with
bisexuality and so he was very high risk, very high risk....
So you didn't know while you were with him that he was using either?
No. He would just use maybe once or twice a month. He wouldn't use very often and
he shot in his feet. 'Cause I don't have a foot fetish I didn't see the track marks and I
mean he drove a BMW, we had a nice house, he had nice job, he had money. So none
of those outside signs that we learn about somebody who uses drugs were there.
Somebody who uses drugs is always desperate for money and has a crappy place to
live and doesn't take care of themselves and he didn't fit that profile at all so I never saw
any of that.
Safe to assume that you went through a significant period of time thinking that you
should have known?
Oh yeah! I go out and talk a lot, I'm on the speaker's bureau at CAP and in factT had a
talk this morning and one of the things... I'm very open and honest with the kids about
me and one of the things I do say is, "Learn from my mistakes, learn from what
happened to me by me not asking those questions and me not being suspicious
enough." And yet also I didn't have anybody in high school that came and talked to us
about HIV. That wasn't an issue back then. I graduated in '83 and even though it was
starting then it was a gay disease back then. It was just in the gay community so why
would we need to talk to these straight kids? And if somebody did come in and talk to
us it was about other sexually transmitted diseases. HIV never came up....
Have you been able to get past that feeling of, "I could have..."?
Yeah. It took me a while and I probably still have twinges of it once in a while but I've
forgiven him. It took me about a year and a half to forgive him but I did forgive him.
That's not very long.
No. I was surprised. I thought it was going to take me forever. I didn't think I was
ever going to be able to forgive him but I did and I knew that in order for me to be able
to live and be positive and be able to try to get through this, I needed to get that off my
shoulders and not have that weighing on me so I was able to forgive him and obviously
I tested positive in 1988. I was probably infected in '87 through IV drug use in New
York City. That's where I grew up. They tested me in a drug program. I didn't even
know they were testing me. You had really no rights back then. Once you were
institutionalized they just ran whatever tests they wanted to on you. When they told me
it didn't really phase me. It was like no big deal at the time. I just wanted to go back to
the drug program. I didn't really want to be bothered, and they were very upset. It was
the head of the drug program, the counselors, who told me and then the doctor told me.
They all seemed to be very upset, like this was a very sad thing. And I knew what AIDS
was but it didn't really affect me so much, like I wasn't afraid. A lot of times I hear
stories about when people were first told they were terrified. They thought they were
gonna die tomorrow. That didn't go through my head and I think part of it was at that
time, in coming off of drugs and I had just lost a boyfriend to drugs who had died and
my whole life had centered around him. I kind of just saw it as I don't really have to try
to escape life, life is going to take me.... There was no real encouragement for me to go
see a doctor. This was just their health clinic and they don't really know anything about
AIDS there. And no encouragement to go down to Denver General Hospital to see an
AIDS specialist. No real encouragement to go to an outside support group. They
basically said, "Take the day off." And I said, "Sure, 111 take a day off from treatment.
I remember at that time I had just told my father. I'm the youngest of five children.
My parents are still together. I'd just told my father because I had become very
estranged from my entire family. He was the only one I was still kind of close to and I
didn't want to tell my mother because I wanted our relationship to come back together
without HIV doing that I didn't want her to feel sorry for me or anything. We both
kind of decided that it was probably best not to really tell anybody, not to wony anyone
because we didn't know what was going to happen anyway.... People in the drug
program knew. I think they did ask me whether I wanted people in the drug program
to know, so I think they did at least have some respect for confidentiality issues. I
think I ended up deciding to tell everybody in the drug program. They had a right to
know that I had HIV, [which] transcend[ed] my own individual rights to privacy.
Because we lived in the same house, they had a right to know. There's that fear, that
fear of contagion no matter how much you can tell people, sometimes it still stays there
in that sense.
I ended up dating a guy in the drug program, and I remember he would tell me things
that people would tell him, like why would he want to date me because I'm just gonna
die or that he was crazy. So people definitely had their set images about who I was but
never would tell me. They would act like everything was normal. I did occasionally
hear people make comments like, "Kelly just drank out of that cup, don't touch it" It
never really bothered me too much.... I wanted to get another HIV test just to confirm
that I was indeed positive and I got them to take me down to DGH and I did another
test. That one came back positive and I said I wanted to see a doctor. So I went to see
a doctor down at DGH and all I remember about that.... was I felt like the doctor was
wondering what I was doing there. Like, "Why are you here? You're fine, you're
okay." Because I wasn't a gay it was like I didn't even have HIV and I was okay,
nothing was going to happen to me. They did CD4 tests and it was about 600 and
something at the time. Basically I just felt like he says I'm okay, he says I'm fine and
that's it. So I said I guess I don't need to go back to a doctor so I didn't and I certainly
didn't want to go back to DGH because I didn't like the whole experience there. And it
could have been just the doctor-patient interaction, that he didn't really care about you.
No referrals to infectious disease? Nothing?
No. And this was the AIDS clinic down at Denver Health. That's what they did there,
they treated people with HIV and AIDS, and they did the test on me and it was like,
"Okay, that's it You can go now." Nothing telling me you should come back in
another three months or six months to do this again. Nothing. AZT wasn't approved
until '88 but it was '88 so they probably should have spoken something to me but I
don't remember anything at all.
And in '88 that was five years prior to when the CDC was even looking at
Oh, I didn't even have my first PAP smear until 1990. So, regardless of HIV, someone
at the drug program should have mentioned, "Have you ever had a PAP smear?" And
they didn't so women's health issues in general, regardless of HIV infection, were
overlooked. All they care about is whether you're pregnant That's as far as women's
health concerns go.
Did they do a pregnancy test when you went into the AIDS clinic?
No. No pregnancy test.
I was diagnosed in '93 and I was also three months pregnant at that time. At that
particular time when they told me I was positive I figured there was no way that I was
positive. The father of my child is HIV negative, so I didn't get it from him. Shortly
after my child was bom, the man that infected me called me up and told me that he was
infected and I should go get checked. We had a seven year relationship. I met him
when I was seventeen. So anywhere from seventeen on, he infected me. Back in the
'80's we didn't really talk about HIV. HIV wasn't a part of the heterosexual world as we
knew it So when we got together I didn't ask him about his past sexual history. He
wasn't a drug user so I figured... and even back then, back in the '80's they didn't even
really talk about it being a drug using disease. Very little did you hear about drug
users. Pretty much none would you hear about it being a heterosexual disease or
sexually transmitted. Anywhere from the age of seventeen on is when he infected me.
It was a long relationship so it kind of cracks me up when people just assume that
people who are promiscuous get HIV because I've known many women that have gotten
it their first time having sex and being celibate all through high school and getting into
college and finally having sex and becoming infected by the first time.
I want to get rid of the risk-groups. "Risk-groups", what the hell does that mean?
"High-risk", what does that mean? Having unprotected sex, that's risk. That's high risk
right there and many people have unprotected sex. Married people have unprotected
sex. "Risk-groups"? We should have thrown that away a long, long time ago.
It seems really counter to education to maintain the idea that you can be in a group
and by that identification you are at risk. Which means that if you are outside of that
group, you're not at risk.
Yeah. That's telling those kids that have one boyfriend and has been with one person
that they are okay. They're not at risk. That's wrong because everybody's at risk. If
they're having unprotected sex, they're at risk. Because you just don't know where your
partner has been. It's really hard for me to go and talk because I want everybody to
understand that they have to take responsibility for themselves because people aren't
always going to tell you the truth. I try to get that across by saying if I was a prostitute
out on Colfax and I used to hook myself and I'm coming back to school to try and get
my life together, you think I'm going to tell you that I used to be a hooker. I'm not
going to tell you that. It's almost like telling people that you can't trust anybody.
Does he know how he was infected?
Well, Michael has passed away since. We tried to work it out He told me that he was
infected by his previous girlfriend before I met him. I met him in '87, so before that he
said he got infected. He was seven years older than I was so he had seven years more
experiences than I did. So I don't really know what his past history was. On his death
bed he told me that he was infected by a woman. I know it's heterosexually spread, but
I think there's other co-factors when a heterosexual man gets it from a woman because
none of my partners that I've ever slept with are HIV positive. So I think there's other
co-factors. I'll never get the truth from him but he stuck to his story.... The bad choice
I made was not finding enough information out before having unprotected sex with
somebody. It was a seven year relationship but he did cheat on me and I know he
cheated on me. I caught him cheating on me. I think the bad mistake was not having
enough information and not being able to protect myself. I think knowledge is
everything. Y ou protect yourself. Silence equals death to me and that's the same with
empowerment and knowledge. If you have the knowledge you can empower yourself.
So when you got tested, you said you were three months pregnant, did you get tested
in the course of pre-natal care?
Exacdy. The doctor offered all of his pregnant women the HIV test and I went ahead
and did it. He called me up and told me that the ELISA came back positive but that
sometimes in pregnancy the tests come back positive. So he said it could be a false
positive. So they wanted to do another test. So they did do another test and the
Western Blot came back positive. The Western Blot is like 99.9% accurate. It was
pretty sure that I was positive.
How did that affect your pregnancy? Did they put you on meds during your
In '93 they were starting AZT in pregnant women but they didn't have the answers. My
whole take on it was if I went into this study it would be a 50/50 chance that I'd get on
the AZT or placebo because it was a placebo control study. I was very confused. So I
went to my doctor and asked what he would do if I wasn't pregnant and he said where
my counts were he'd put me on AZT. So I went ahead and followed the study but I
didn't enroll into the study. So five months pregnant I was on the AZT and all through
labor I was on intravenous AZT and then my daughter was on AZT four limes a day for
six weeks. She had extensive testing until she was two years old and now she's not
having to be tested anymore because she's negative. I'm really lucky.
Theme Two: Disclosure
There's certain people that I'm really close to that know I have this but a lot of people
don't. They just don't I. think it's easier that way sometimes because people no matter
what, no matter how far they go into research or how far they go in literature or
bringing it to everyone's attention, people still have their fears.... And right now, I don't
have any type of HIV related conditions at all, but even so, I think that if a lot of people
knew they would still have a fear. That's just the way it is sometimes.
My best friend, she works at the same place I do. And she knows. She knew from day
one because we're so close. But not co-workers, no. And the reason why I haven't told
anyone is because it's easier this way. People will treat me differently. They have.
There's been times when I've gone to a doctor's appointment and as soon as I tell them
I'm HIV positive they start covering up everything which really isn't necessary. I
understand they have to protect themselves but to cover up the entire chair that I sit in?
And ever since that started happening I tell as few people as I have to. The people that
are really, really close to me, I've told. All my family members know. It became a
problem with my sister, and that's why we're not so close. She was telling outside
people, and it became a big problem because some of the people latched on to this
rumor, and I would never deny it or confirm it I just said it's something that I have to
deal with my sister and you've accepted me all this time, and if you choose to accept me
still that's your business, and if you don't that's okay too. Two of the main people that
this got to, they still treat me the same for the most part. It's never been discussed
again.... And I'm not trying to deceive anyone. It's just to me I'm trying to protect
myself, I'm trying to protect my son because he knows a lot of people.... he's grown up
in this area, and it would be very hard. Kids can be very cruel.
It's made me look at family. It's made me look at friendships. My mom is a diabetic,
my father's a diabetic, and one of my sisters, the sister that I don't get along with very
well, she's diabetic. But I think that would make me become even closer to them, and
my sisters and I are farther apart now and not so much of the illness. I don't know how
that plays in. I think when things go wrong I know my sisters think about it but it
hurts me sometimes to know that they would never call and say well "How are you
doing physically? What's going on with you?" Or even try to get a better
understanding of it.
It's so strange because if a person tells you they have cancer or they tell you they have
any other illness, it's like, oh wow, I'm sorry, I hope you're doing okay. But if a person
tells you they're HIV positive.... If I was seeing someone and I found out they had AIDS
or they're HIV positive it's not gonna change the way I feel about that person, it's gonna
make me aware and know okay, that means we're gonna have to make sure you take
care of yourself. Period. And I know there's other people out there like me. It's just,
it's hard to distinguish which ones will be that way and which ones wouldn't And
that's why there's always a fear to tell people.
The feeling-out period.
Exactly. And then you're still afraid. I'm always afraid to tell people because I don't
want to be treated any differently, because I don't think I've changed. I think when my
body starts going through the changes, sure things are gonna be different, but I'm not
to that point yet. As far as me thinking what resources are out there or what should be
out there, I think there should be more support systems for families. I know CAP is
there and Empowerment is there, but more in a health setting where-a family or the
entire family can go and sit down with a psychologist and just say, this is what she has,
how do you feel about it? That's something I would have loved to have done with
everyone in my family. Go and talk about it It's just never happened. I know how my
mom feels. It's just my sisters and my dad. My dad is very supportive too,
everybody's supportive, but they never talk about it My dad, he doesn't talk about
hardly anything anyway. Hell listen, he doesn't discuss a lot of things. Me and my
sister had a discussion.... and I explained to her why sometimes people come and go in
my life. I said, it's not because I don't want to get close to anyone, it's because I have to
feel people out. If I see that they have a problem with very little trivial things or they
can't handle small things, how are they gonna handle one big thing? And sometimes I
don't give people even a chance to see if they can handle it or not because I have to
weed through people like that. And she never looked at it that way. She never even
thought about that one time how hard it has to be for me to have to think about telling
someone this or bringing it up, and hoping that they're not gonna go around and tell
everybody else or treat me like a leper or anything. So that was a really good long
conversation I had with her. So she did get a better understanding of how I feel and
knows that I don't want anyone to have to take care of me or do things for me. I just
don't want that to happen even though I know it will one day whether it be from HIV or
I have to be honest with you. When I go over to one of the CAP offices I'm always
looking around to see if there's people I might know. Or people that might see me
going into the office that I know. I mean I would love to walk in there and see
somebody that I know because it's like okay this is somebody I could connect with.
Sometimes the labeling for the different groups keeps people from coming also. So I
think sometimes if you have to go into an AIDS clinic or into CAP where everyone
knows that's for AIDS patients, even if you're going with a family member to support
them, automatically everyone think ah, she's got AIDS.
Well, and it sounds like a real catch 22. If one of the things that really needs to
happen is to have HIV and AIDS be more common in the daily discourse between
heterosexuals, how does that happen if the thing that you need to do to preserve your
own dignity and privacy is to not tell anyone.
Then we have all of these people who need the resources, but the resources aren't
there because nobody's saying they need them, because they don't want to come out.
That's exactly what it is. It's a catch 22. Because if people were more open to it,
everyone would know. You work in different jobs, and I don't care what they say. I
don't care how they cannot discriminate. It's still there, it's still there. I know I see it
with my color. Just being African-American, let alone having an illness.
Have you been able to tell your whole family ?
My family knows, but my husband's family doesn't know. You can kind of get a feel
for who's gonna accept what. So we were very particular in who we told in terms of his
The support has been there from your family?
One brother has had a little bit of a hard time of it, but he's like very, very emotional and
has since come out of the closet Which has kind of complicated our relationship just
because I'm feeling that I was probably exposed [to HIV]by a gay man. Because that's
the patients that you see. When I was first diagnosed he came rushing out here and
stayed with us for a week and it was this big emotional scene. Well, almost a year later
he decides to tell us that he's gay, and that's fine, but it's just kind of exhausting. He's
just kind of exhausting. My parents are fine. My father, of course, didn't have a real
clear understanding. He didn't even know what it was. They've come here and we've
been there. We talk on the phone twice a week and I have one sister that's a nurse, and
she's been very supportive. She and I have always been close. I think one of the
hardest things is not having someone to talk to about it. You can pay a shrink and talk
to a shrink, but it's not the same as having a friend or someone.
You're married, and you live in a beautiful home, and you live in a nice neighborhood,
and you have a daughter in high school, and you 're straight, and you don't do drugs,
and now you're HIV positive which is associated with people who don't live like you
and don't have families like this and don't have homes like you do. / guess when you
were talking about how careful you have to be to pick and choose who it is that your
daughter will tell and which in-laws you'll tell, does it feel to you that you're making
that decision because people are afraid of transmission, or that it's maybe also
difficult because HIV and AIDS are associated with something that carries a heavy
I think it's both, because the people that I've been interviewed by before haven't come
out and said [it] but they're digging. It's almost like they're looking for something else.
I don't have a secret, I don't have another story, I'm not lying, I haven't had a
relationship that I'm not talking about. I had a relationship with a man that was married,
and my husband knows that, but that's like the only thing that I could say that's like
really awful in my life. And actually, it wasn't awful, it was great [laughter]. I wasn't
married at the time, I was the single person. And I'm not saying that that's right. I
know that that's wrong but it's like people are looking for a reason. It's like that whole
thing, that box, that category, that place, that wherever you want it to fit and it doesn't fit
there. And I've had people say, "You know what a percentage of a statistic that you
are?"18 Well, no I've never really thought of myself as a number. Fuck you, get out of
I can see from several people in my husband's family very clearly why we haven't said
anything to them. Because of how they are and how we've seen them respond in other
circumstances. And it's just better left unsaid. We talked to my doctor about that and
he said, "You will be granted no favors by telling people. You will get no special
treatment" Well, no shit
At Thanksgiving that first year we were at my brother-in-law's home, and I hadn't seen
this other brother-in-law in quite some time, and my hair was falling out I have really
thick hair. It was really blotchy and I don't know whether it was stress or whether... I
had just started taking the drugs. Anyway, we're at this Thanksgiving party, and my
hair is just like falling out And this guy, this relative says, "What is with your hair?"
And I thought, I wouldn't say that to someone anyway. That's the kind of person he is.
He just doesn't think. That's another lesson for me. It amazes me what comes out of
peoples mouths.... And I just said, "I'm trying to grow it out. I guess it doesn't look too
good today" [laughter]. I said something about a bad hair day or made a joke of it. In
the meantime, I look like shit, I feel like shit and he says that? You just want to shake
them, you just want to shake them.
Is your brother your only remaining family member?
Yea. Close family member. I have cousins and aunts and uncles. My whole family
18According to the HTV/STD Surveillance Program, only two Colorado health care workers are listed
as having been exposed in the course of their occupation. Of those, only one is still living
Did your brother become a priest?
No, he dropped out of the seminary quite a few years ago, and just a month ago he
came out to me that he's gay. It's been an interesting ride. At first nobody believed
[that I had HIV] and especially him. The rest of my family believed it, but he didn't
believe it He flat out did not believe that I was telling him the truth and accused me of
lying about it. He wanted me to send my medical files to his doctor. He said it was to
make sure I was getting the right care but he admitted to me that he thought 1 was lying.
I think it was his own denial. I'm adopted, so when my mom died there was a lot of
things that happened between us besides HIV that made our relationship, when the HIV
came along, get even harder. We really didn't talk to each other except when it was
absolutely needed, for six out of these eight years. The last two years has brought
about a big turn around. The rest of my family knows, and they've known in parts
along the way.
I'll let somebody know within the first conversation that I have with that person, female
or male. It usually comes up when they ask me what I do, and let them make the choice
from there what they want to do with it Learning the old thing of I can't be responsible
for someone else's reactions, and how they respond to me is their choice, and if they
choose to walk away then they walk away and if they choose to stay then hallelujah.
It's an interesting response because I'm sure that you find with a lot of the women that
you work with that in order to avoid that rejection, they opt not to tell people. It's an
interesting response to say, "Let's do it the other way. I'm gonna tell you now and
then if you don't want to be around me then we haven't wasted our time." I think
that's great, and it sounds very healthy to me.
One of the things that keeps coming up with the women I've been talking to is how to
deal with that. How to deal with it at work, how to deal with it with friends, how to
deal with it with dating, and what I'm hearing is, "Put it off."
It took me a while to get there, but it actually feels very good because then I know that
the people that are in my life are in my life. I don't have to worry about who I've told
and who I haven't told and going through that. It's weird because my boyfriend is in an
acting troupe and through mutual friends from my community and his, people know
both of us, but I've chosen not to say anything to his acting troupe because I didn't want
take away from what he was doing with them. It wasn't anything that I, on purpose,
didn't say because if they would look I'm in the paper all the time, and I've been on TV,
and no one's asked me what I do. If you started a conversation with me you'd find out.
One of my friends was with one of the women from the acting troupe at the AIDS Walk
and was giving her a ride home and she said, "That's so cool that Shannon's here and
helping out." And he said, "You know she's HIV positive and she wants to raise money
too." And she was like, "Really?" [laughter] And he felt bad because there's an
assumption that because I'm so out and open about it that everybody in my life knows
about it. I brought it up to the women in the group when we were talking about
disclosure. I said even with somebody like me who's so out and open about it, there
still may be people in my life who don't know.
Do you have support from the rest of your family?
I'm very lucky. I'm luckier than most I think. I have a great support system all around
me with my family and my friends. I think a big part of that is the acceptance of my
HIV. Not hiding my HIV anymore and not ashamed of who I am, and it's easier to let
people in. It's harder when you're lying and tiying to hide to let people into your life,
because they don't know. I think I'm really blessed with the people around me.
Did you tell them all immediately?
My sister knew right away and my brother knew. I didn't tell my dad right away. I
didn't tell my mom right away because of the relationship that we've had in the past
But they both know now and they're pretty much supportive all the way. Everybody
pretty much knows. Especially if I'm having a conversation, people ask you what you
do for a living. I'm an AIDS activist, that's what I do. I don't work anymore, I'm on
disability and I just volunteer myself to being an AIDS activist. So I think it's a lot
easier for me to come out and talk to people about my status. But I don't go and shout
it from the rooftops. When you're so out like that there's no turning back, there's no
hiding from it It's always a constant reminder that you are positive, but, in a way, I
think it's a lot healthier and a lot better for myself. I've been in both places. I've been in
the denial stage where you drink and you get drunk and you just try to forget about it
and it never goes away and you just end up doing stupid things. And then I've been to
the point where I'm at now and it's a lot easier where I'm at now than the other places
I've ever been.
Have you encountered many people who didn't respond well when you told them that
you were positive?
I've been really lucky, and I think it's because people look at me differently. They look
at me more with sympathy than if I were a gay man. There's more judgments towards
gay men. People kind of tend to say it's their lifestyle but when they see me with my
daughter it's more like, "That poor woman. She loved, she trusted." And I don't think
they really get the whole picture, and they think more of women as being victims in this
and I don't believe there are any victims. The only victims I believe in this war are the
children. The people who get it sexually, we made a choice.
I made no friends in college at all. The friends I made, I made through work but they
didn't know. At that time I said, okay it's time to tell my mother. So I wrote her a letter.
First, I called my dad and I told him the news and I said, "Well it's dropped (my CD4
count), and I guess this is a bad thing, and I have to go on this medication, and I need to
tell my mother. I want to come home." I wanted to be home. My mother and I hadn't
talked... well, we had talked a couple of times but it was very negative, just bad
interactions. I left home when I was sixteen. I wrote her a letter and she basically
wrote me a very nice letter back, but in the end said, "I'm still not ready to see you."
She still couldn't say, "You can come home." She still hadn't dealt with her own stuff
ibout me and maybe feeling guilty, and this just being another thing like maybe she
was responsible. That was tough but I understood that she has to go through things
too, and she's doing a lot of healing. But obviously it hurt because it's this rejection. I
tell you this and it's still rejection? Both my parents wrote that we didn't need to tell the
rest of the family. We don't need to tell them "bad things," itll only make them sad.... I
lad met my husband at that time, and I think I had decided that I didn't want to go
:hrough this alone. I was tired of being alone all the time and not really having
anybody who could just be there for me.... He basically accepted me unconditionally
and truly loves me. My husband's from Jordan, he's not American.
[n graduate school, I made a lot of friends up here, a lot of good people. Ended up
siting all of them about being HIV positive. Most of my colleagues, not all of my
cohorts, but most of the ones who I was close to. All of them reacted towards me fine.
[ always told them in the most bizarre situations. A guy entered the program who's gay
and he also expressed a lot of interest in HIV and AIDS. It seemed to come up in his
:onversations a lot. I know with me, in my own life, that because I have HIV it tends to
ae a major part of my life and will come up in conversations even with people who
ion't know of my status because it's such a reality for me. One time we were in the
office with another friend of mine, and he had a bad cold, and he was saying he was
going to go home. And my friend Sue jaast turned to him and said, "Yeah you better go
iomeJim. Take care of those T-cells! Get them up, get them fighting." So the first
:hing that crosses my mind is maybe Jim has HIV and Im thinking, oh, a connection.
Somebody maybe I can talk to who knows a lot of people also with HIV and I can
learn, because I was so isolated from people. I didn't know what was going on with
Dther people with this disease. So I just came right out and I said, "Do you have HIV ,
fim?" And he turned to me and said, "No! And I hope you ask every heterosexual
nan who also has a cold, whether or not they have HIV!" He was real defensive. I felt
like, wait a minute. I had to defend myself. I didn't mean to stereotype just because
you're gay. Like all gay people have AIDS, I know that's not true so I just came right
Dut and said, "I have HIV." Then I mentioned that most of my cohort knows and I
nmed to Sue, and I knew Sue didn't know and I said, "You blow, right Sue?" And
she's tike, "No. I didn't know this." And then he turns to me and says, "What
medications are you on?" I said that I was on AZT. "What's your CD4 cell count?" I
said this, and he asked me a couple of other questions, and I answered them and then
we all left
[t was about two or three weeks later that we talked about this interaction and Jim said
that he was so blown away by the fact that I just came out and said I had HIV that he
bought I was lying and that's why he drilled me. He said what he found interesting
was tiiat I could just come out tike that and say I have HIV so casually. He said gay
men will never do that because they're so terrified of the reaction people will have of
hem. He felt that somehow... and this is his interpretation, and I don't know how time
this is... I think that partially he might be right, but partially he might be wrong and it
might be harder for women to tell people than gay men because they don't have the
support that the gay community has... but he felt, because of the double stigma, that a
lot of gay men aren't only dealing with telling that they have HIV, but also the fact that
they're gay if they haven't been public about that. I'll never forget that he thought I was
lying, because who is this image of woman with AIDS? With HIV? We became real
good friends after that. We communicated, we had no problems with each other before,
but he actually ended up being one of the primary people who pushed me to actively
get involved and become a client of BCAP, to start to see a doctor. He saw me as a
walking time bomb. He said, "You're very confident, you're very strong. But you're
not connected to anybody. You don't talk about this with people so if something
happens it's gonna be a disaster because you won't have any networks in place." He
I went to Jordan for six months last fall, and for the first time in a long time I really felt
that I am a person with HIV. It was a major part of my identity because I was in a
country where health became such a major issue for me. I can't drink that, that has tap
water. The food too. I am very particular about food and with my liver I don't like to
eat food high in fat because that produces stain, and they eat a lot of greasy food, a lot
of oils to cook. Everyday it seemed like Id run into all these conflicts, and Arabs want
you to eat If you refuse a drink they feel like they're doing something wrong and
they're dishonoring their guests or something. I ran into problems about renewing my
visa because I couldn't renew my visa unless I had an HIV test So now I really know I
can't do research in Jordan because I can't even get a proper visa without an HIV test....
But he ended up getting us visas. For him it wasn't a problem because he doesn't have
HIV. He just paid people under the table. They get the money and they just sign the
papers. They don't care if the tests are actually done. It was still just another thing
telling me that you can't really ignore this, this is who you are. It affects what you do.
I couldn't get health care. I get every once in a while a little rash, like a stress rash when
I get totally stressed out. It seems to go away with antibiotics. I was afraid to go to the
doctor there because I didn't want them to ask questions. If they wanted to draw lab
work, I didn't want them to stick a needle in me. I really firmly believe anyone who is
sticking needles in me, coming any possible way into bodily fluids has a right to know
that I have HIV and it's not okay to have AIDS in Jordon. It's not okay. The people who
have it, confidentiality is not respected. [It is] incredibly stigmatized for different
reasons than in the United States; similar reasons but you're dealing with a different
culture. While it is okay to have AIDS in the United States, in this country it's not. If
you're a non-national they'll deport you. They would treat you, but their treatment is
not the greatest anyway. They do have great medical facilities but I worry about things.
It's a poor country, how do I know they're not using the same needle over and over and
I don't want them to stick me and then stick it in someone else. I had all these fears and
then when I did go to a doctor he looked at and he said, "Don't worry about it, it's some
kind of viral infection that deals with your immune system." I was like, my immune
system? What's going on here with my immune system? I couldn't ask, I couldn't say
anything because I couldn't reveal that knowledge. What it made me really think was I
have HIV, I can't deny this. This is who I'm becoming, this is who I am. I'm becoming
a person with HIV. I was able to not let it play a big role in my identity in the States
because I was able to "pass" as HIV negative. But in Jordan I couldn't do that Other
people didn't know, but it was internally very stressful for me.
My husband has chosen not to tell his family, and I struggle with that all the time.... Ive
made a commitment to myself that if anybody ever asked me if I had HIV I would tell
them yes. I would never say no if they asked me straight out. I get a lot of stress there
because I don't want people to ask me if I can have children. I want to be able to tell
them, "No, I can't", and that's it because it's painful for me that people ask me year in
and year out, "When are you going to have children." I don't want to hear that, and if
they knew that I had AIDS they wouldn't ask me that question. They wouldn't keep
asking. I go through this with all the Arab women in my group of women on that side,
and it's hard for me because I can't just be me. I can't just be honest It's all in
protecting the rejection that might happen from his side. For me, I don't fear so much
that rejection because I'm not so close, it's not part of my primary network. So it
wouldn't be very hurtful to me but to my husband it would be very devastating, and I
understand that but I also get a lot of anger because it just seems so unfair.
If I had cancer... We got into a discussion where I got very upset about a friend of ours
who might have cancer and a friend of mine called me up and said, "It's very sad, it's
very sad." The first thing that went to my head was that I just got my AIDS diagnosis
and that seems like a sad thing too, even though I feel the same it does mean
something. It carries a lot of meaning, and for most people in this world it carries a
death sentence. But yet I can't express that to people, Im not allowed to. So I tend to
get very angry. What gives these people the right to publicly announce their illness?
And it's not public, it's friends, it's family. But I can't do that. I can do it with my
family, but I can't do it with his, or his set of friends.
My sister-in-law went to the emergency room a couple days ago. She gets really bad
menstrual cramps, and they weren't sure if this was a menstrual cramp or a kidney
stone. So they took her to the emergency room, and by the time she got there she felt
better. She went home and I had spoken to her and she seemed to be okay. Then my
husband says to me, "We have to go visit her." Because in Arab tradition when people
are sick you go visit them and maybe bring a small gift. These are obligations in their
culture. I got really angry. She gets fucking menstrual cramps and we have to go visit
her and here I am debating whether to take these awful medications, and if I go on them
I'm going to have to go through that alone. I don't really want these people coming to
visit me really but it's the whole idea. Why do we have this obligation to do that but
with me we don't? He says, "Well they don't know." And I said, "That's the whole
point. Why don't they know? What's so awful about this disease?" Well, nothing's
awful. But there's something, see? And a lot of people don't understand, and I
understand that, but still you get angry.
The fact that we allow people to say that's okay and just go on, that stereotypes
continue and nothing gets changed and that people with HIV don't get as much support
as someone with cancer. They're taught so much to say it's okay to be silent. Well, it's
not okay, and then people wonder, why you need to broadcast this? Why do you need
to tell the whole world? Illness is kind of a private thing and you don't need to tell the
whole world, but in a way you feel the need to tell. The need to put a red ribbon on
your back pack, the need to publicly say that AIDS is not going to go away and that it's
okay for people to announce this, to talk about it and that somehow that makes peoples'
lives easier. I have said that if I ever get sick, don't ever expect me to sit in the hospital
and tell people I have leukemia or something. It's just not happening. If your family
comes to visit me, they'll know what I have and what's wrong with me. He's fine with
that. Everything in a way is still my decision. He does fear it though.
Theme Three: Medical Encounters
The year that I was diagnosed even the doctors were very uneducated about things.
You had a billion and one interns trying to find out more about AIDS patients and at one
time they made a huge mistake with my meds or with my lab work. My T-cells were at
800 and something, then I went in like a month later and they said that they dropped
down to 240. That was the most depressing time I've ever had in my life time. I was in
severe depression because I thought within a months time I'm just dwindling away to
nothing. Even though I didn't feel it, even though I didn't look it. I'm listening to these
doctors because I'm thinking they're supposed to know what they're doing. And then I
said, wait a minute, this can't be happening. So finally a doctor decided to test me
again, do my bloods again. It was back up to 800 and something. It was a mistake.
But during that mistake, during that month, they put me on anti-depressants, they put
me on AZT. They did a lot of different things with me because they thought that I was
just going downhill. That taught me to listen with my body, and to listen with my heart
and my mind. Ever since then I pay attention to what doctors say to me, but I have to
also go by how I feel and what's going on with me. And my spiritual guidance, I have
to follow because I should have known all along that it's obviously a mistake. It's
wrong. But that was a very depressing time in my life, and that's pretty much what got
me on this.... I was already spiritual but it even put me on a more spiritual journey.
Just believing and knowing that God is the only one that's gonna know when it's time
for me to become sick or to die, period.
I'd like to feel like I'm the same person but [I'm] not. I mean you are but you're not.
It's hard to describe, it's really hard to describe.
What is it that feels different?
Well you're just much more aware of your health and how you feel. Initially you feel
like you have a big sign across your chest and everybody knows and they don't. I
mean look at me. I look like you. I'm fine, really. And you wouldn't know.... Plus I
don't have a very good poker face, that's why I don't play cards. My emotions are like
right here, so I have to be real careful, and with my work especially. Being in health
care there is no way that I would tell people, there's no way.
So nobody you work with knows.
One friend of mine, who was the gal who came over many times when I was sick
because our kids know each other, and we've been friends for ten years. She knows.
She knew the minute she walked in the door. When I'm walking down the steps like
some feeble, crippled, oooh, yuck, crappy mouth, stinky 'cause I didn't have enough
energy. I didn't bathe or anything. My husband helped me, I couldn't do it. I just
didn't have the energy. It was all I could do to get up and change my clothing. But
anyway, no one knows at work. I don't think that would settle very well at all. I don't
think that I would lose my job, but I think it would be hard and there's just so many
prejudices, social kind of prejudices that go with it because people are afraid.
You said that you work with a lot of people who have mv?
I'm in a setting where people come in for surgery, and where I am is the most patients
I've ever been around with HIV.
And you feel like the fear and the stigma is just as high where you work in the medical
Oh yeah! Because like you said, people don't know. People think that if you have HIV
that you have AIDS. Well, I don't have AIDS because I don't meet the CDC criteria for
less than 200 T-cells. Well, that's just a number. You try not to look at those numbers.
It's just like that little box that I was saying. Like I want to blame something and put it
in a reason or a box. You want everything to fit, but if it doesn't fit this little criteria or
this little category then it's like not fitting your criteria or your category and you feel
like you're just kind of out here kind of hanging19. Well, you still have it You still
have to face it, and you still have to live. You still have to get on with it I don't think
that it would be well accepted at all.
It's interesting since you are in a health care setting. I would expect, unreasonably so
apparently, but I would expect people to be more understanding because, in theory,
they're more knowledgeable about transmission.
In some ways I think it would be okay. And it depends more on the people. It's so
individual, I mean it's so individual. I've had people say to me, "You better put a mask
on and gloves and a gown. This patient has HIV." It's like, so what? The risk is greater
for them to get sick than you to get sick. You would give them a cold and then really
put them at risk. It's the opposite almost of what people think. It's been a hard lesson.
That part has been a hard lesson. Maybe I haven't done the right thing in terms of that
and I talked to my infectious disease doctor about it and a law suit and all that crap.
Well you have to be real angry to pursue the legal end of it And I'm thinking I like my
lifestyle, I want my job, I like what I do and I don't know if I have that effort and
energy. I just didn't know at the time if I could do it. Especially since I don't recall
having had a specific incident where I had a needle stick. I never had that. But I
19Jeanne was aware that I was initially looking for participants whose mode of transmission was
heterosexual sex. She began the conversation by explaining to me that she believed her mode of
transmission to be "occupational".
remember very clearly having blood on my hands and blood underneath my nails, and
maybe it did splash in my face or maybe I.... I don't know. And I'll probably never
know. I can think of a lot of patients I've had that have had it
Do you think that people take the precautions that they need to take where you work?
For the most part. There's two gals that don't And I always tell them, "You need to put
some gloves on". And you try and do it in a way that's, "Oh, here's your gloves," or,
"Don't forget these," or something. But everyone has their own way of doing things.
It was really awkward for me at first because I wasn't use to starting all these I.V.s
everyday, so to get the hang of it I didn't have the gloves on. Even if you have gloves
that fit it doesn't' feel the same. It was stupid. It was really stupid. What an idiot thing
to do.... It's been hard at work in that way, when people react to people that come in that
are positive because, "Oh you better be careful".
And you know that they would be responding to you in that way?
Similarly. And I don't say a word. I mean how can I? That could be me. I could be
the one there that's needing the surgery.
[I] was at the leadership recognition dinner they had for the Colorado AIDS Project a
couple of weeks ago which recognized Chip and Barb. Chip is one of the leading
researchers, he works out of University Hospital and Barb is a big time activist She
started CORA, which is Colorado Organizations Responding to AIDS. Dr. Mark Connit
was there, [he's a] prominent physician in San Francisco who actually first diagnosed
Kaposi Sarcoma, and called it GRID. He was very angry, and rightly so, because of the
Matthew Shepard stuff, and really used that in his talk. But throughout his talk if he
ever mentioned a woman she was a lesbian and he said that, "the prevention message
that we need to send out, you have to focus them on all, on everybody. From gay men
to heterosexual men to lesbians and to the undecided." It was like, excuse me!
[Laughter] That made me angry, and [he] really did a lot of focus on gay issues. I get
angry at that because we have such a hard time with people getting off the focus of it
being a gay disease, but when you have all these people, like 200 people in this room,
who are leading role models and activists in our community, and you have a leading
physician come in and talk about gays and we have to focus on them again. It's like if
we're trying to get the rest of the community to understand that it's not a gay disease
anymore, we have to start here, and if we're not going to start here with recognizing
straight men and straight women, we can't expect the outside community to understand
that either. So when everybody stood up and gave him a standing ovation at the end, I
didn't stand because I was angry. I was like I'm making a point here. I had a couple
people come up and ask me afterwards. They said, "I noticed you didn't stand or
recognize his talk." And I said, "No". And after I told them why they understood and
they said, "Absolutely, you had every right to do that."
When I was diagnosed with AIDS I walked into the office to talk about what we were
going to do and that's when I got the little lecture from the doctor, my boss, who said, "I
don't want to put you at risk, the stress here is too much for you, and I just think it
would be better if... We've already hired the temp." So I kind of just stood there in
shock tiying to figure out what had just happened to me and I went back into my office
and I sat down and I thought, it finally hit, they just fired me. So I was packing up my
stuff and the receptionist came back in. She and I were pretty good friends and she
said, "What happened?" I said, "They just fired me." And she said, "They did what?"
And I said, "Yeah. I think they just fired me." And just then the nurse practitioner
came back in and had my last check and gave it to me and tried to hug me and say,
"Take care." And I was like, 'This doesn't feel very good." And she said, "What do
you mean?" And I said, "This just doesn't feel very good." And I said, "I don't need to
talk to you right now." And she left. I worked there for three years so it was really,
really hard. I did a lot in that office. The receptionist, even though we were really good
friends, she didn't do her job very well. I covered her ass quite a few times. I worked
7:00 to 7:00 most of the time. I think I was a great addition to that office, and so it was
really hard to have that happen to me from a doctor who, when I told him [I had HIV]
said, "Never worry. Everything will be fine. Well do what we can for you."
So everybody at the office knew that you were positive?
Yes. It took me about six months after I was hired to tell them. I just had decided that
I didn't want to be treated differently, and I wanted them to see that I could do the job
before they knew that I was positive. And then when my worlds started colliding, of
Shannon HIV positive and Shannon HIV negative. One of those worlds was going to
win. And finely, upon being scared to death when I told the office manager and she's
saying, "He won't want you here." So scared to death to go into that office anyway,
and then have him say, "No big deal. Well do what we can. Everything's fine." And
that's the way the office was. It was just the four of us in there anyway. Or the five of
us with the receptionist. We were a pretty close knit group, so it was really weird to
have that happen to me.
You worked there for two years after you told them you were positive and everything
was really fine?
And as my platelet count started dropping, he would go over my blood results with me
and it was almost like he was my second opinion. I'd come in and say, "This is what
they want to do. What do you think?" And he goes, "Yeah." So he was right in there
with me with my care and everything.
So if they really were okay with the fact that you were HIV positive, what do you think
happened with your AIDS diagnosis? Do you think there was a monetary issue or fear
I have no idea. I'm still confused about that to this day. I did file a complaint with the
EEOC and we went through the whole thing and the receptionist who was on my side
went to their side and said that I had quit, which I never did. The thing that bothered
me most, and I brought this up many times, is he was such a stickler. Everything had
to be on paper, everything had to be written down. So for a man who was such a
stickler for having things in writing, he never got a letter of resignation from me, so
how did I quit? The judgment was his word against my word and there [were] three of
them and one of me. So I could have pursued it, but at that point in time my health was
still going down hill and there was just too much stuff going on, and I knew I could get
on unemployment without any problem, which I did, and just let it go.
We have a computer here and I'm on it every day. I get updates. I'm on the CDC list
and AGEIS, so I go in there and get all the updates and everything. And that's one of the
things I think is really important that women understand, that this changes everyday
and doctors can't keep up with it. There are too many changes going on and they've got
too many other things they're doing. So it's important to know exactly where you can
get the good research and make sure you get the good information and you can
continue learning, so when you go in and he says something to you and you don't
understand it, you can have him write it down, take it home. Because I'm on Crixivan.
There was a study that started a year ago with taking Crixivan from three times a day to
twice a day, which would have been very nice but it didn't work. But he didn't hear
about it I walked in there one day and said, "There's a study that's starting, what do
you think?" And he's like, "I haven't heard of it." And it made him go and do research.
When I came back a month later he's like, "Let's just let it play its course and see what
happens." And then I just got a call back a month ago and the medications aren't
lasting all day like they should. So, it's not a good thing to do but being able to go in
there and talk to him like that... And I think with most physicians that are specializing
in infectious disease, especially HIV, they know that it's important for us to be educated
as well, and be able to make those decisions and it's also important I think, especially
for women, to understand a doctor's just there as a guide and an advise giver and he's
One of the ladies that called me this weekend, and we talked for an hour and a half, she
was feeling fine. Her T-cell count is fine, her viral load is really low. I'm pretty sure
she's been positive since '90, and she went and saw a new doc and he started her on
meds. She's been so sick with being on the meds and she's like, "I don't know, should
I stop? It's only been two weeks." And to be able to tell her, "You know what? I
wouldn't have felt comfortable starting them in the first place. You're feeling fine, your
viral load is like 3,000." So it wasn't that high, her T-cell count was like 300, so she
was very stable and there was really no need for her... and I think the push was that
she's never taken drugs before and they need people that are drug naive to go into these
studies and she's in a study. She thought, "This is what he told me to do." I want
women to know that it's okay to say, "You know what? I need a month to think about
that" Or, "Let me do my own research. Let me go home and talk to somebody about it
first" And not make decisions right there.
Are you in any studies?
No. I did a couple at the very beginning, and I had bad experiences with both of them.
The one I was in, within four days of starting the drugs I was a rash from my little toe
to my pinky. I was just a complete rash, so I went in there and said, "I can't take this."
And in order to prove it was the Laberdine they took me off of it for a week and then I
had to start it again, and within two hours I was a rash again and it was miserable. But
I thought, "I'm not going to do this." Then there was a couple of studies that came out
with one of the drags where if you start it and you have a bad reaction, if you go on it
again it's fatal. How did they find that out? [Laughter]
I'm guessing trial and error.
Yeah. So I've decided not to do studies. I've done my part I've done two studies and
I've given myself to that, and I'm relatively healthy now and I wanna keep it that way.
Do you feel good about the meds that you're on now?
Yeah. I've been on them for about two and a half years now, and as of last month my
T-cell count was 994 and my viral load is still undetectable. My T-cell count has
actually been as high as 1300 in the last eight months. So it's really stabilized right
around 1,000. And my viral load being undetectable, I'm very happy with them. I think
there needs to be more research into women taking the meds. For example, Sarah tried
to be on the same regimen that I'm on and she couldn't take it. Well, does that have to
do with the fact that I probably weigh 75 pounds more than her and she was getting too
much of it? We do that with lads all the time. Babies and little kids, we give them
medication according to their weight, their height Is it something that we really need to
look into with these meds? I'm cruising along and not having a hard time whatsoever,
but I know a lot of women that can't take the combination that I'm on and they're
skinnier than me, so that puts thoughts in my brain.
This was a combination tested on men?
Yeah, and they did fine. So the difference in metabolism between men and women and
the weight changes and stuff. Women just haven't been studied with this, with some of
the drags and stuff. I think that's a huge thing with these medications. To make sure
that how long they're gonna last or how much you should take. What's gonna happen
to her body? Women don't really go into that wasting syndrome but we have other
stuff that happens that doesn't happen to men but nobody wants to talk about that yet.
You were diagnosed a year before the CDC took on gynecological issues at all.
And just a few years ago they recognized women with bacterial pneumonia, that it could
be a sign of HIV. That's the other filing that bothers the heck out of me. If a man and a
woman go in together and have all the same symptoms, they'll test the man for HIV
before they'll test the woman. Theyll do all these other tests on her first because there's
no chance she can be HIV positive. And on a list of maybe ten things they'll test her for,
it'll be the ninth or tenth thing that they test her for. A man walks in with the same
exact symptoms and it's the second thing, or the first thing, that they test him for. It's
just trying to get that awareness out there. An understanding.
I did end up going to a doctor again in 1990 at Westside Health Clinic. I saw an
infectious disease specialist. He was not an AIDS specialist As a matter of fact I think
I was his first HIV person that he saw. They do have an AIDS clinic down there, but I
don't know why I didn't see one of the AIDS docs. Maybe they were full or something,
so they put me with this guy and he was real nice. At that time I kind of, y'know,
doctors are doctors. That was when I had my first PAP smear done. And he ended up
doing the PAP smear on me, [that] was also kind of interesting because he was an
infectious disease specialist and not trained in that sort of thing. Then they did the
blood work again. My CD4 count was higher, like in the 700s. I don't think they
talked to me about medication at all. He explained to me how HIV works. He
explained that you become infected and then you see this slow, gradual drop but he
said, "Yours are pretty good now, so you don't really have much to worry about" And
I think I might have gone back there a couple of times. I stopped going to see doctors
again. I just felt like, I'm fine, I don't need doctors and there's nothing happening to me
and I'm gonna be okay. I didn't go again for another two years.
Somewhere along the line I had started karate lessons and in my karate lessons I found
that no matter how much I trained I could never build endurance. I would always have
difficulty breathing. I would get extremely fatigued and I would try really hard. I
would have the muscle mass but my endurance was just shot. I thought, well, maybe
I'm anemic. So I went to the health clinic at Metropolitan State College and asked them
to test me for anemia, and I also mentioned that I had mv and they said, "We should do
all these other tests too." My blood count came back as 300, my CD4 cell count. So
that was a much bigger drop than it had been two years ago, and they literally
responded to me like I was going to die. They were like, "We can give you AZT, and
that's about all we can do." They all just seemed very sad, very sorry. I remember
when that happened and the way they responded to me. I took my prescription for
Somewhere along the line I decided to inform myself on my own. I got on the mailing
list for Project Inform and had them send me all their newsletters. I bought books on
HIV and AIDS and so I did become somewhat informed, and I didn't want to take the full
medication so they actually under-prescribed AZT to me, which was a bad thing because
either you're gonna do it right or you're not gonna do it at all. At that time they still
didn't know. I think it was five to six hundred milligrams a day and I only took three
hundred milligrams. So from the get-go those drugs were totally a waste. Now we
know monotherapy is a waste anyway. I literally felt like I was going to die. I
remember leaving there and I had never felt so alone in my entire life. I felt like there's
nobody I can call, nobody I can talk to, nobody in Colorado. My brother lives here but
he doesn't know so I couldn't call him.
At some point they did offer me at Metro to go see a specialist at University Hospital.
I started to go down to University Hospital. I didn't like them very much either and
how they treated me. I felt they didn't really care about me. [They] were not interested
in my life at all. They just really didn't seem to take an interest You go in, you sit in
this little room, you wait for your doc to come and they say, "Go do these blood tests,
these lab works." Somewhere along the line they decided to test me for Hepatitis C
because somebody finally realized that my liver enzymes are always elevated and they
said, "Maybe you have Hepatitis C. Have you been tested for A and B?" I said, "Yes,
negative." They said, "What about C?" I said, "I didn't even know there was a C." So
they tested and that came back positive. So then, in 1993,1 learned that I had both
Hepatitis C, which is a chronic infection like HIV and HIV. Two things going on there.
Hepatitis C is like HIV, there is no real... there is a treatment but it's not die greatest
treatment She'd mentioned it to me but seemed like it's not even worth pursuing, which
probably it wasn't.
Now, knowing what I know about the treatment, I would never touch it anyway because
it suppresses your white blood cells and it's very bad for your immune system. So it's
tricky having these two infections because all of the HIV drugs aggravate the liver, and if
you have an already underlying liver problem it can get worse. I didn't like it down
there because all they ever seemed to offer me were drugs, and every three months
they'd offer me another kind of drug. Not even just HIV drugs, because they weren't
coming out that quickly back then. There weren't that many choices. But I remember
one time the doctor coming in and saying, "There's a clinical trial going on that you'd
be just perfect for." And I'd say, "Oh, really? What's that about?" And she said,
"Well, it's to prevent yeast infections. It's a preventative drug that you could take."
And I'm just thinking, but I never get yeast infections. Why would you recommend me
to join that trial when it's not even a problem for me? How could I possibly be of any
use? They use to always try to say, "You'd be great to be in clinical trials. We have so
few women in these clinical trials." Not really think about is this really beneficial to
me? Or do you just want me in there for your research purposes, for clinical benefits?
It seemed like they weren't aware of these contradictions. They think they're helping
you by saying, "Here, this might benefit you." But really, if you look at my clinical
history, that's not going to be useful to me at all.
I went to the acupuncture school down on Colfax and I really found that to be
incredible because I would go in there and the students were obviously very curious
over me, and all of them wanted to treat me, and I really liked them. They meant well
and they really wanted to help people and become healers. I tried the acupuncture and I
felt like the acupuncture really helped me at least with stress reduction. But what I
found so phenomenal about the practitioners of Chinese medicine is that every single
one of the supervisors always responded to me so positively. Like, "Oh! You're doing
great! Your sheen is wonderful!" I left there feeling like life is good, life is great! I'm
gonna live 20,30,40 years and HIV isn't such a bad thing. Whereas I'd go to my
doctors office and I'd leave feeling like this is it, all doom and gloom. What's going on
here? There's something wrong with these interactions because I'm the same.
Nothing's changed. The real, real, reality hasn't changed but because of my interaction
with these different people, I'm a different person and I felt like I prefer to go to these
guys. I may do my tests and my CD4 cells aren't changing but I feel better. That was
more important to me in a way than these numbers. It was much more meaningful to
me. I started really to question Western medicine and what it had to offer me.
Especially when it seemed like my body was taking care of itself, that I wasn't really
progressing at any really fast rate or if I was even progressing at all. I even question
that They said my CD4 cells were low but I felt fine, I felt okay regardless of that, so
you have to question, "Okay, you tell me I'm not well but I feel great." Where's the
contradiction here? I understand the logic, the biology. What happened with my
doctor is that I started graduate school and I'd done one test a month after I stopped
[the medication], and my CD4s had actually gone up. So I think all the stress around
the medication and stopping that, gave me a good boost like I'm in control again and I
don't need these drugs.
I did start to see another alternative healer, that's how she identifies herself, as a healer.
She does all kinds of different things, body work, psychotherapy, she's an
acupuncturist, trained with a lot Native American tradition. She brings all of these
together. When I saw her, a lot of what she would do was kind of psychotherapy, but
definitely different than how you'd be trained in Western medicine psychotherapy. She
really helped me deal with emotions surrounding HIV and why I was so afraid of this
HIV positive part of me. This part of me is a burden. I don't want her in my life. Get
rid of her. She's not going away, she's staying there. And in a way that's denying me,
that's denying myself. And why am I denying myself? What's so bad about that HIV
part of me? WeU, that stems from society. A society that says this is a bad thing. My
mother says you don't tell people about bad things.
I went to see Charles almost two years ago. I went in with a lot of baggage of I don't
like doctors, I don't like this. So I was, from the beginning, very defensive with him.
Not really trusting him and it took me a long time before I realized he's not the bad
guy. He's really on my side, but a few things in the very beginning bothered me about
my interactions with him. He learned right away that I didn't want to do medication.
My CD4 count was at that time averaging about 250. My viral load, it turned out, was
very low. I'm an outlier, I'm a weird person. My viral load, the baseline, is about 2,000
and technically people with that low viral loads usually tend to be the "long term non-
progressors", meaning that their immune system is still up in the 700,800,1,000. The
CD4 cell counts, the immune system, is not being compromised with such a low viral
load. But with me, my immune system had become compromised even though my viral
activity was so low. Once we found out my viral activity, he still thought I should try
medication. That raised a whole contradiction in my mind. The antiviral drags are
supposed to reduce viral load, my body's done that on it's own so why do I want to take
these highly toxic drags.
Especially with Hep C.
And that's another can of worms. I made decisions not to take it. He would give me
stuff like, "Read this", on medication. And I would read it, and I would start to read
about the side effects and I would literally start to feel sick to my stomach. I would
come in and I would tell him that. And I also said things like, "Try and see things from
my perspective." He says, "Also try to understand my perspective." And he didn't say
this but indirectly, "Not just my perspective but the gay male community perspective."
That's how I inferred it because what he goes on to say is, "Almost all of my patients
are gay men who have been to funerals, who have lots of friends who are very sick, so
that when they look at these drags and all the side effects, they say god, is that all I
have to do to avoid thafl But what would go through my head is, sure, I understand
that But does that make my decision any less legitimate? I remember hearing that like,
what's wrong with me? Why aren't I thinking like all these gay men? My decision is
less valid because I haven't had friends who have died, I haven't been to funerals. I
remember going to an AIDS, Medicine, and Miracles Conference and there was a
women's session. That was a real turning point for me. Having been so isolated
around HIV disease and not really fitting in, and there you are in a room with about 50
women, all different kinds of women and hearing these stories and it's like, holy shit!
I'm not crazy, I'm not crazy! I'll never forget this feeling of, "Great that you're able to
make those decisions. There are people who share your opinion. You don't share this
gay male experience of having a lot of friends who are sick." Most women with HIV
don't experience that They haven't because they haven't had that community develop.
Most of the doctor's experience is stemming from the gay male experience so they
project that on you. Like, "Wake up and smell the coffee. This is going to happen to
you." Like you somehow don't see it Well, I see it I read the literature, I see what
happens. It may not be as real to me as to somebody who has actually gone to
funerals, but it's not like I'm totally in denial or that my reality is any less worthy of
saying, "Okay, I understand and I respect your decision." And I don't think he
understood or was even able to see the other side of the implications of what he's
111 tell you about this experience I had with a physician about a year ago. I had a lump
below my belly button, around my bladder, and I had to see a urologist. I went to a
different urologist to get a second opinion. This urologist said that I had to get another
scope done, a cystoscopy. I said, let's go ahead and set it up and she goes, "We can't
do that here on you." And I said, "You don't do those procedures here?" And she
goes, "Well, we can't do it here on you." And I said, "This is 1998. This is universal
precautions. You have to assume everybody is positive. At least I'm disclosing my
status to you. How many people have come in here that you've done procedures on
that are positive and you just don't know it?" So it blew me away that this doctor, this
well known urologist, would even say anything like that to me. I just couldn't even
believe it. It amazed me that even in the medical field that this is the perception.
What did you do? Did you go find another doctor?
No. She treated me with courtesy and respect, but when it came down to the procedure
she said she couldn't do it there. She would have to do it in a hospital setting.
So she was willing to do the procedure herself, she just wouldn't do it at the clinic.
Which makes no sense because they should use the same sterilization for anybody, and
they should have the same procedures to get rid of waste for anybody. So it was really
odd. I think it would offend most people, whereas I was like, this is universal
precautions. It blew me away more so than anything, and I just didn't let her get away
with it I think it made her think about it I guess I just don't take it that way. When
I've gone to urologists I can see where they've been a little snide about my HIV status
but I've never really taken it that way. Or going to get moles removed at the
dermatologist They don't like to do that if they don't have to.
I sat on the CPCR for a very long time, which is Community Programs for Clinical
Research on AIDS. I chaired the board there and they sent me to D.C. three times a
year, and my big issue was women and research and getting women into research.
Right now they just lump everybody in one group. That's just being a person. My
whole problem is women have different hormones, our bodies are completely different
and our internal plumbing is completely different and they're not looking at that right
now. I went to D.C. once and I talked about the side effects that I had from one of
these protease inhibitors and they said, "Well we're just not looking at that right now."
And I got really angry because this is my life, it's my daughter's life and pretty much
what they're telling me is that they don't care about women's issues. The study I'm on
right now, the IL-2 study, there's not a place on the sheet for female/male. They're not
looking at different gender related side effects. It's still slow. I think it's getting better.
I think they're getting more studies on just women, but I think there's not enough
money for just specifically women-targeted research. I heard some of the problems are
that a lot of women don't seek care. Most women that are diagnosed with AIDS are
women that are diagnosed under the scalpel because they died. They'd never even been
diagnosed because women have other priorities. Women have their families to take
care of, they have their men to take care of. Their selves are the last people that they
think about. They say that it's harder to get women into studies. Well, I think that they
need to offer them incentives to get them in studies. Women will do anything for $20
dollars. Go and get a tube of blood drawn. I think women have been left out of this
picture for so long and I think they are really trying to make a come back and look at
Is it your understanding that in the study you're in right now, both men and women
are getting the same drug, the same quantity?
It's a randomization. So there's three arms: there's no drug, there's a 4.2 or something
like that, and then there's a 7.0 drug. They call your number into the stats center and
the stats center puts your number into a computer and you end up on one of the arms
and that's how they make it fair.
So a man and a woman who are both on the 7.0 arm are getting the same doses with
no regard for height, weight, hormones....?
Nothing. And that needs to be looked at in any drug trial you do for any drug. They
need to look at gender specific[ally]. It's almost like it will throw the data off if they do
that Then you've got your pharmacies that are more interested in getting their drug
approved than really looking at is the efficacy for women different than for men? Do
they need smaller doses? Do they need bigger doses? Hormone replacement with this
drug? Theyre not looking at any of that. Pregnancy. Most of these trials, if you're
pregnant you can't be on a trial which is probably a safe thing but that's just one more
way to exclude women. Other issues like the whole mandatory testing on pregnant
women. I go back and forth on that issue because if it wasn't for me getting tested, my
child probably wouldn't be with me today because she'd probably be dead. She'd
probably be positive. But I had a good doctor. But with the mandatory testing I feel
like it would deter women from getting prenatal care.
Theme Four: Surveilling the Self
It's weird because you go to high school with different people and you wonder how
people are gonna turn out. I was always the wall flower, skinny, tall skinny girl that -
nobody noticed, and now all my friends that were overly developed in school and the
ones that all the boys wanted, well now they're huge, they're fat, they're out of shape.
You think, what happened? So I'm glad back then I was this tall, skinny kid. Even
when I had my son I think the largest I got was up to 140 pounds, and this was 8
months 9 months pregnant and I'm like 511", almost 6 feet tall. So, as far as my
weight, I've always had a struggle with keeping weight on, and I notice now as I get
older and older... I'm at 173 now which is a good weight for me, and I know that keeps
me healthy also just keeping my weight on just trying to eat... not eating a lot.. I've
always eaten a lot, but I'm just trying to stay as healthy as I can by keeping some
weight on rather than losing it.
There was a mom's group that had only met four times, and someone was passing out a
flyer and it started like the next week and I thought, this is what I need. I need to be
with other women. And it was a real small group, it was only ten women. But I think
it's hard for women to get out and come out and make a statement or say anything
because they're so busy. Their lives are so busy. Most of them are moms, and I still
work. And most women think that they can handle it, they can do it, and they don't
need support and they don't need some help, or they have friends. Well, you need
professional help. You can't do it by yourself, and I would be the last person to have
said that a while ago. I would have never said that I can do it, I can handle it, 111 be
fme. I can bake the cookies, wash the dishes, do the laundry, go to the doctors office, I
can do all this stuff. Well you can't I'm exhausted at the end of the day, and maybe 111
even take a nap which I would never have done before. And in that way you have to
kind of adjust your life and prioritize and look at what's really important and what's
gonna be there tomorrow, because it'll be there tomorrow, most of it.
Do you feel like those are primary differences, or at least differences that stand out for
you, being a woman with HIV as opposed to being a man? That it's harder to ask for
Not a doubt in my mind. That was one of the things that we talked about in this mom's
group was how difficult it is for women to ask for help. In this age of female
empowerment, or whatever you want to call it, equality and equal rights and all that crap,
that's fine and I'd like to get the same wage for what I do as the man, but a woman's
plate is so full. Women have always been responsible for so much that you don't want
to look like you're inadequate or incompetent or can't relate or weak or faltering in
anyway by asking for help. And it's a lesson in that, say for example, a friend has been
very helpful. I forget that it's also good for her to say let me help you. It's not just
about you, I want to help you, I want to do this for you. When I was really sick she
would come over and cook. Or help my kid get dinner going. She was over here a lot.
And you forget that that's important for the other person. It's almost like initially you
become the caregiver because everybody's so worried about you, and after that initial
sickness for me and I began to feel better... when we decided to tell several people, you
get so absorbed in what they're gonna think and what they're gonna say that you're
comforting them instead of the other way around. Because it's just like this huge shock
to their system as well. And people don't how to react. People don't know what to say.
The differences between the way men and women handle it, I think for men it's far
more straight forward. They either go ahead and get medical help or they don't.
Everything is more cut and dry, straight forward. At least some of the men that I've
met, it's not quite as an emotional thing for Jack as it is a business thing. He's got HIV,
he's got heart disease, and this clotting thing, and they're all just kind of like business
things. He's got to take his medicine and it's cut and dry and it's all neatly packaged.
For me, as the woman, I deal more with crying and I'm upset all the time and I think
what happens if we die? I don't think he's made out his will yet. I've made out my will,
so there I'm the business one, but I think on the whole it's more of an emotional thing
outwardly for me, and for him it's more, "This has got to be done and somebody's got
to do it." They took me off my drugs like five months ago because I was having a
problem and all the time he was saying, "You've got to tell them they've got to get you
back on medicines. Because you're having a digestive problem, you can't let HIV take
control." And he's seeing things clearly and I'm weighing everything out. What if I go
back on and it ruins my liver? The ages I think it happened at had a lot to do with it
too. I think that women handle it differentiy. We've got all of the emotional stuff for
us and for our kids and for our partner, whether they're infected or not. We carry all
the emotional stuff plus we want to carry all the stuff about making sure everyone's
taken care of too. I feel like we have double the baggage, and a lot of it we put on
ourselves or society puts on us or our mothers have put on us from the past, but it's
there. When it comes to talking about who's gonna take care of the kids, well he's
gonna take care of the kids. That's what he thinks. I think we have to sit down and say
who's gonna take care of the kids when we're both gone. I think the same differences
creep up that are between women and men normally, but then they're just a thousand
times bigger. He thinks I'm way too emotional, but I think how can you not be
I was on steroids, which was the worst year of my life. My boyfriend's in the Marine
Corp and we went to the Marine Corp Ball, which is a big hoorahrah. He gets in his
"blues" and I'm in a long gown, formal thing. The year before my dress was a 20 and a
year being on Prednisone I had to buy a 28. It was just the most miserable. I stopped
having my periods and I had to buy new clothes and I was miserable. So he came back
and said, this was about a year after I was off of them and my body was finally starting
to get back to normal, he said, "I'd like to do another dose of steroids." And I said no.
Being on those for eight months was long enough for me. He said, "Well, what do you
want to do?" And I said, "I think I need to go home and do some research on my
own." Which is the cool thing about this doctor, he doesn't care. He's very, "Be
proactive in your health and do what you need to do." So I went home and for about a
month did a lot of research on my own.
I've had problems with eating disorders, not really severe enough to say I was bulimic
or anorexic, but if you had to classify it, it would be more like bulimia tendencies.
Especially when I got off drugs I would eat a lot of sweets and then get sick. That has
continued to this day. When I get very stressed, like at dinner time I can eat one cookie
and then throw up. It's this difficulty dealing with feelings and letting them build up
around food issues. I brought that up to Charles when I got back from Jordan, and in
Jordan it got really bad. I was practically throwing up every meal. When I was in
Jordan I lost ten pounds which never came back. I was thrilled and still am thrilled
[laughter]. That's another thing with the medication issues which I don't know if the
medical community quite recognizes. A lot of the side effects from the protease
inhibitors, where there is the body fat redistribution. What are you going to do in a
culture that says you have to look good and emphasizes it? This is also in the gay male
population where they tend to care more about their bodies than heterosexual men.
One of my fears... I might gain weight from taking this drug? I don't want it. That's
dealing with these images but I don't think anything like that is being addressed at all
with women. I would think that would be a huge issue.
There was a "Women with HIV Conference" last year geared towards health care
providers, and I went there. The opening speech a woman was up on stage and she was
surveying the audience, "Who's a nurse? Who's a doctor? Who's an aide?" And just all
these different kind of health care providers and she said, "Did I miss anyone." And
someone said, "Woman with HIV!" She totally just overlooked it Then people raised
their hands. Then there were two doctors giving a speech, one doctor had AIDS, and
she got infected through her work through a needle. She gave up her medical practice
and was totally Western from the beginning, "Give me all the drugs I can [take]."
Which makes a lot of sense with her training.
The other doctor, who works in the Bronx with women, is doing a huge study on
women. Close to 2,000 women are enrolled. I asked her, "What are you seeing in
your practice with these protease inhibitors? What are you seeing in body changes?
How are your patients responding to that if you are seeing it? How are you going to
deal with this sort of thing given our societal cultural beliefs on looks and eating
disorders and all those problems in our culture, and medicating people with drugs that
cause changes in physical appearance?" She said almost all the women in her study
gain weight when they go on protease inhibitors, and she said eating disorders tend to
be a problem of white middle class women, and most of her subjects are black or
Hispanic which makes sense in the Bronx. She's had no complaints whatsoever in her
practice, didn't really mention anything about the "buffalo hump". I emphasized the
social aspect of it, not just biologically how that can cause further health problems
down the road, but the social aspects and images and she didn't say much. But the
other doctor who was infected occupationally stepped in and she was really defensive.
She said, "I just want to say that I would never think about my looks over my life. My
life comes first. I went from a size 3 to a size 8 since being infected." From my
perspective that seems like a big change. She just had to emphasize how great these
drugs were and how they're prolonging her life. It sounded to me like she had some
real issues. Afterwards, everybody in the room started clapping.
I later heard Shelly Cohen, who's a nutrition advocate for people with HIV and AIDS.
She was apparently in the audience and I had seen when she gave a speech at a
community forum at MCC of the Rockies about nutrition and HIV. All the people in the
audience, which was mostly men, were asking about these body changes. "What's
going on here? What can we do nutritionally to counter the side effects?" They were
very scared. It was a very different environment from what was going on in the health
care providers. She said she had her hand up the whole time because she wanted to
emphasize that this is Colorado where the statistics are reversed from some of these
major cities, where it's white women who are infected with HIV, and if you want to go
with your statistics that it's white women who tend to have eating disorders, well, it is an
issue20. The other thing that comes out of her comment is that black women don't care
about their bodies the way that white women do. Where is that at? Black women gain
some weight and they don't care? Bullshit! There were all these things that I read into
it that made me glad [she's] not my doctor. Charles is very concerned about these side
effects for his patients.
[At the time of this interview, Kelly's CD4 count was 150 and her viral load was
between 2,000-3,000. She gave herself a deadline of December 11,1998 to make a
decision about whether or not to go on medication.]
My reasoning with December 11th... the particular drug regime I'm going on... one of
the things is it's just such a stressful thing to be dealing with anyway. One of the
drugs, Viramune, one of the side effects is a rash. And this gets again into our physical
appearance. I wanna be home. I don't want to have to go teach with a rash on my face.
Most of the side effects occur within the first couple of weeks. If I get major diarrhea,
I can't call in sick twice for a teaching job as a graduate student They might start to
question that I have this fear of loss coming with these medications.
In '93 they told me that you don't want to bring a child into this world with AIDS. I felt
like their decision was more on abortion. They couldn't tell me what to do with my
body, but I believe even to this day that they would have rather had me abort than even
having the chance of bringing the child into this world. You talk to somebody even
today, knowing you're positive, and I would like to have another child. I'm not going to
but I would like to have another child. I would like to have a little boy. But you talk to
somebody about that and you can see the look on their face. It's like a disgusting look
like a look of disgust. Like, how could you do this? A lot of my problem is that
20The statistics compiled by the HIV/STD Surveillance Program showed that of all AIDS cases in
Colorado reported through December 31, 1998,74.9% were white. This statistic is not broken down
by sex (Epidemiology, 1998).
people can always speculate, "I would never do this." Well you don't know until you're
sitting there with an HIV positive diagnosis. You don't know what you would do. I
hear that all the time from students, "I'd kill myself." Well you know, you would be
amazed what happens when you're faced with adversity. I truly don't believe one
person that has gotten an HTV positive diagnosis has killed themselves. We've all
thought about killing ourselves. I'm sure most people have thought about suicide once
in their life.
I think women have so many different issues than your average man. Even the
heterosexual man, the heterosexual man without the family. They don't have kids, they
don't have that It's not like they don't understand but they just don't have that Like all
the Ryan White funding stuff I do is called "Priorities". We put the percentage of
allocated dollars to the different service category. A gay man stood up and said, "Why
are women who are positive procreating? And also there's two people in the family.
There are fathers." He has no clue what it is to raise a child and have HIV. It's not so
much that I feel like shit and I can't take care of my child. It's that the child shouldn't
have to see you sick or throwing up or not being able to get up. The child shouldn't
have to do that because that's just gonna screw up the child, and then it will be really in
the system and we are trying to save money, right? But these gay men they don't
understand. I believe that women have that stigma too [like gay men]. I don't feel like I
have that stigma, but I know many women that have been screamed at, spit on, yelled at
because they're HIV positive. I do believe that stigma is there even for women. For gay
people it's their lifestyle. For women it's, "well they're sluts or they're drag users."
Nasty titles to have over your head. So I believe there is stigma. Probably not as great
as being gay.
Theme Five: The Children
Does your son know?
Yes. He's known since he was about 9 or 10. I tried very hard to keep it away from
him as long as I could, until he was old enough to handle it, but through conversations
around the house and ones that he wasn't a part of a few times he over heard
different things. I always said that I would tell him as soon as I thought he was able to
handle it, and at that time he started hearing things and I thought he was able to handle
it We don't talk about it really. Sometimes he'll ask me how I'm doing. I've talked
about it when I first told him I was. We talked about it a lot because he was always so
afraid that I was just gonna one day die. I told him that's most people's reaction but it's
not that type of illness. It's something that progresses over time and with all the new
medications and everything it's.... the medications that I've been taking have been doing
a lot of good for me. They have raised my T-cells, even though my T-cells have never
been really low but they've raised them even more. So as far as my son is concerned, I
think seeing is believing with him and he knows that I still lift weights, I work out
Even though I have a back problem right now from the car accident, I'm still as
physically fit as I possibly can be. He sees that, and seeing that I think that kind of
makes him feel more comfortable as far as knowing that I'm not sick or I'm not ill.
How did he handle it when you first talked to him about it?
It was upsetting, of course. Of course it was upsetting and he was very afraid. He
thought that he was gonna lose me and I had to keep making sure that he knew I'm fine,
I'm fine, I'm fine. Just because I get a cold does not mean that... y'know. So I think
after seeing it, that he believed it and now he knows that, "oh she is fine." As far as
right now, I'm doing great
Has it always been just the two of you?
I was married. I got divorced in '86. Since then it has been. I've almost gotten married
again twice, and one of those people we did live together, but it has been just me and
him. Actually it was me, him, and my grandmother. I took care of my grandmother for
years before she passed a couple years ago. But it has been me and him for a long
time. For at least the last 8 years. Me and his father were never married. As soon as I
got pregnant actually he just would not claim him at all. He just denied that [he] was
even his child. And that was the first time I even had sex so it was definitely his
[laughter]. He was overseas and I couldn't find him and then once my son was 10
years old social services finally found him and he came out to Denver, and he met my
son and we went to court and set up child support and everything, but he's a deadbeat
dad. He's never paid. He keeps in contact for the most part. He'll call at least once a
month but he doesn't help financially at all. And my son's just gotten to a point where
he just really doesn't have a lot to do with him, because he figures he doesn't call very
much or he doesn't come see him or anything. And he knows too. As soon as he got
here I told him. The main reason why I told him, I said if something happens to me
you really just need to get a relationship with your son so that if something happens to
me I don't have to worry about him as much. I know my mom would probably be the
main person that he would be with because she has always been supportive in
everything I do, but because that's his father I would much rather he be with his dad.
At that time I would have. Now, looking at how his dad lives and how he doesn't even
take care of himself, there's no way that I would want my son to be with him.
Do you talk to your mom about that?
Yes. I talk to my mom about everything.
I mean as far as if anything happened to you that you would want....
Oh yeah. Oh yeah. It was discussed a long time ago but we don't discuss it now
because nothing's gonna happen to me no time soon, I don't think I mean y'know
[laughter]. But yeah, we've talked about it. I am now 33 years old. I have a sister that's
34 and a sister that's 35, and I've talked to both my sisters also. So he'd have several
places to go, several people to go to if something were to happen, but most likely he'd
be with my mom.
I've taken care of my son by myself for 15 years now and even though I know in my
heart that.... when I first found out I guess I always prayed just let me live long enough
to see him get through school and to be taken care of and to be on his own and be able
to take care of his self. And it's pretty much happened. He's almost there and god gave
me that and I'm very thankful for that, but I still I think about there's a lot of things that
come with having it [crying].
When we got together last week, didn't you tell me that the director of the preschool
was actually pretty rude about...
I don't know if she was so much rude. I think it's more ignorance. I don't think she
knew that much about HIV. There are people that still think you can get HIV just by
touching or being in the same room.
Didn't she say, "If there's a child injured at the preschool, I don't want you anywhere
Exactly. She did say that. She also wanted to know if I cooked because I'm supposed
to provide the snack. 1 think that's just ignorance. She just doesn't realize how hiv is
spread. I'm not gonna be having sex with the school kids [laughter].
You provide snack for other kids and she was wondering if you were going to be
handling the food?
Yeah. So that's a whole other issue that's coming in with my daughter starting school
and being HIV positive. So I am trying to not be so open about it, and I have declined
many interviews like news casts and the newspaper because it's my daughter now and I
don't want this to come back on my daughter.
It's really hard because with this bout of me being so sick21. It really scared her. She
came, I guess it was Sunday when we spent the night together just me and her, because
I had people with me the whole time. She said, "You know Mom, you and I aren't
gonna die until we get really old." It scares her. She comes with me speaking, so she's
only four but she knows that her mommy has AIDS, and she knows that mommy takes
a lot of pills, she knows that mommy doesn't feel good sometimes. There's an
underlying fear there for her. I think it will get worse once she gets older because the
concept of death to her right now... she doesn't really understand what death is. I think
that's a whole other issue when you're pregnant and you find out you're positive and
they tell you, "Well, you can have an abortion." And all you can think about through
your whole pregnancy is keeping your baby safe so your baby won't get HIV. It didn't
cross my mind about leaving her. Her having to grow up without a mother, that never
crossed my mind until now. Until after I get that negative diagnosis for her. Now it's
well, god is she going to grow up without a mother? That's a whole other issue and it's
21Sarah just began the national IL-2 study. The first round landed her in the hospital twice in one
week with dehydration.