Buy And the Band Played On: Politics, People, and the AIDS Epidemic, by Randy Shilts
Buy A Disease of Society: Cultural and Institutional Responses to AIDS, edited by Dorothy Nelkin, David P. Willis, and Scott V. Parris
Buy My Own Country: A Doctor's Story, by Abraham Verghese
Buy Impure
Science: Aids, Activism, and the Politics of Knowledge, by Steven
Epstein
Acquired immune deficiency syndrome has struck an unimaginable
breadth of social chords in the decade and a half since it was
identified in the United States. Churning up images of lepers,
religious judgement, and the threat of a invincible virus in
a world made complacent by the age of antibiotics, practically no
aspect of AIDS can be discussed without strong emotions, ranging
from righteousness to despair. Over the years, however,
books have emerged that try to make sense of the AIDS epidemic
within a cultural context, and they represent a variety of
agenda, based at least in part on when they were published.
The medical and scientific aspects of AIDS are discussed in
nearly all of the recent books about emerging viruses, including
Virus Hunter, by C.J. Peters,
M.D., and Virus X, by Frank
Ryan, M.D. Their spare treatments of AIDS and HIV, usually as a
public health problem and usually with critical words for the
politics surrounding the disease, are useful and interesting but
may obscure the reasons that AIDS is not treated simply as
a public health problem. Fatal Extraction discusses both scientific and social issues
but in the service of a specific question, again one that centers
squarely on public health: Are there sufficient safeguards to
protect patients from infection with HIV by healthcare workers.
And the Band Played On, first published in 1987, is
reporter Randy Shilts's voluminous account of the early
development of the politics of the AIDS epidemic. Randy Shilts
was the first full-time AIDS reporter for the San Francisco
Chronicle, the newspaper that has consistently offered the
highest level of AIDS reporting of all the major dailies in the
United States. This remarkable book is, for all its length, a
breathtaking read. It places an almost painfully human face on
the epidemic, from the suffering of people ravaged by disease to
the anguish of their loved ones and of the providers struggling
for recognition of their work with a newly identified disease.
And the Band Played On is a moving
book, but it's also a highly polemical contribution to the
discussion of the politics of AIDS. Vivid characterizations are
made of heroic activists, contemptible sell-outs, and noble
physicians, and the book has an air of 20/20 hindsight to it. It
is, nevertheless, an exciting book and a useful introduction to a
staggering number of individuals who have continued to play
visible roles in the AIDS arena.
A Disease of Society is a collection of essays, primarily
by healthcare providers working in academic settings, describing
some of the challenges of the AIDS epidemic. AIDS has taken on a
life of its own in popular culture, from visual art to television
miniseries, and the book discusses these images alongside
thoughts on the implications of AIDS pathology for prison systems
and for the symbolic value of blood and blood donation. Other
articles tackle the way AIDS has called for redefinitions of
"family" and for changes in the regulation of new drugs. Published in 1991,
A Disease of Society's observations about the nuances of
discrimination and the challenges of a new and devastating
disease remain, sadly, almost uniformly relevant today in spite
of the status of HIV as the disease organism that has inspired
the most rapid accumulation of research in the history of
medicine. These essays amply demonstrate the power of cultural
and institutional effects in the treatment of and engagement
with AIDS in the United States.
My Own Country was first published in 1994. A highly
personal account of treating AIDS patients in rural Tennessee,
Abraham Verghese's book is beautiful and engaging. If you have an
opportunity to hear Dr. Verghese interviewed, take it; his
language is clear and adept, and his compassion and commitment
are a pleasure to hear in his voice. Dr. Verghese traces his
arrival in Tennessee, the development of his AIDS practice there,
and his own slow but sure burnout in a highly personal way that
is also deeply respectful of the colleagues, families, and
patients he encountered. The many chapters are short, making this
book even more difficult to put down.
Published in 1996, Impure Science, by sociologist Steven Epstein,
describes in particular the entry of AIDS activists into the
mainstream. Epstein describes the actions of activists,
scientists, politicians, drug companies, and physicians in their
efforts to obtain recognition and save lives while protecting
their own self interests as well. Issues of credibility take
center stage in this book; the evolution of AIDS activists into
lay experts in bioscience meant incorporating many of the
mainstream scientific community's measures of credibility, and
Epstein offers an interesting discussion of the way this
development served to recreate privileged access to information
and influence within the very groups that sought to "democratize"
such access. Another fascinating discussion of the nuances of
credibility concerns dissenting scientist Peter Duesberg's rejection of the theory
that HIV causes AIDS. Epstein's careful and intelligent analysis
of political issues surrounding AIDS is both refreshing and
encouraging.
Early compassionate engagements with AIDS as a social issue
centered around the anguish of an embattled community in the face
of the apparent indifference of mainstream culture, from
individuals to institutions. While healthcare workers were, from
early days, striving to answer the questions that would enable
them to provide care to their patients, the limited knowledge
about AIDS and HIV -- and the extremely limited treatment options
available -- could do little to moderate a public debate trapped
by issues of morality and denial. Discussion of the meaning of
AIDS retains elements of hysteria and hostility, as shown by the
experiences of Dr. Verghese and the groups about which Steven
Epstein writes. At the same time, discussions of the social
impact of AIDS are emerging that are accessible and respectful,
stabilized by a much larger base of knowledge than was available
in the late 1980s.