Positive Women: Voices of Women Living with AIDS
edited by Andrea Rudd and Darien Taylor, Second Story Press, Canada 1992, 269 pages
This is not a feminist book. Or at least I should say this is not a book which presents the reader with a formed feminist analysis. It is a book that gives voice and visibility to dozens of women around the world who are living with AIDS.
The book, compiled by two Canadian women, who are both HIV positive, is comprised of a diverse collection of contributions by women from North America, Africa, Latin America, Europe and Australia. These women have only one thing in common: they are all living with AIDS.
They express this single commonality in a most uncommon way. Some of the women channel their energy into political activism, others focus on personal relationships, and a large number are deeply immersed in religion. Not surprisingly, many of the contributors to this collection are women of colour. Some of the women are lesbians. Some are mothers.
The book has no unifying political message, because each woman speaks from her own cultural and political perspective. But I defy any feminist to read this book and not see the blatantly outrageous sexism experienced by all women living with AIDS.
Many of the women did not have the opportunity to practice safe sex because of being in a relatively powerless position. Some describe how sexism and racism shattered their self-esteem and propelled them towards drugs to blot out the pain. Others struggle on alone, caring for large families, such as Elizabeth from Tanzania, a single mother supporting three children.
The anthology contains photos of many of the contributors, but not all of the women can be so open. Others explain their need for anonymity and their fear of the certain discrimination they would face if they go public about their HIV status. The stark tales of discrimination told by other women confirm that this fear is based on reality.
AIDS does not affect women in the same way it does men. Women with AIDS are routinely misdiagnosed. Gynaecological diseases are a common opportunistic infection experienced by women with AIDS. Some in the anthology complain about the lack of information relevant to women living AIDS. One of the editors describes how she spent months laying in the bath looking all over her body for evidence of Karposi’s sarcoma lesions, not knowing that, although common in HIV positive men, they rarely occur in HIV positive women.
Iris de La Cruz expresses anger that she was not diagnosed as HIV positive much earlier. Before she finally tested positive for HIV, Iris was hospitalised with a severe bout of Pelvic Inflammatory Disease (PID). She used methadone while in hospital and complains that the hospital was well aware she was an addict, yet never suggested an HIV test. After having a hysterectomy, Iris reflected on the healthcare she received:
“I’m back at work, went to Washington yesterday with ACT-UP for benefits for women with PID, and am generally acting crazy again. The sad fact is that I should have been tested seven years ago for HIV. And the infection that I had been complaining about for almost two years prior to the hysterectomy should have been addressed. Doctors should really examine the reasons why they entered the ‘healing art’ of medicine and maybe read the Hippocratic Oath once in a while. And women shouldn’t be getting sick and left to die because there is no research on women and HIV. Our women are dying untreated and without benefits because although sero-positive, PID is not considered an opportunistic infection by the Centre for Disease Control. Women are going untreated because they can’t afford what little treatment there is.”
Amongst the many pieces in Positive Women, the contributions by two women particularly captured my attention. Barbara Emes, a heterosexual women with three children, lives on a farm in rural Pennsylvania. She was diagnosed HIV positive six years ago and recently decided to go public. She’s been interviewed, given many speeches and has started an ACT-UP chapter in her local area. Her contribution to the anthology is a photo essay, which shows that her life is much more than just being “a person with AIDS.” Barbara shows herself as a daughter, mother, wife, lover and activist.
Black lesbian Imani Harrison contributed a controversial piece about the quarantine of HIV positive people in Cuba. Imani visited an AIDS sanatorium there. After a ripping denunciation of how American “democracy” treats people living with AIDS, which she says is a form of quarantine, Imani concludes by giving critical support to the Cuban system and says, “Frankly, I would rather be ‘quarantined’ in Cuba than in America.” She states that the US and Iraq are the only two countries in the world that don’t allow people who are HIV positive to enter and that the US and South Africa are the only two countries that do not have a national health plan.
Imani’s lesser-evil arguments did not win me over to support for the Cuban system of quarantining people living with AIDS. But her powerful and angry six-page poem, AID of America, which exposes the brutality of decaying US capitalism, is one of the most persuasive arguments for socialism I’ve ever read. It is worth buying the book for this alone.
Positive Women made me feel positively angry about the failure of the system to find a cure for AIDS.
