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Legacy of light for women living with HIV in prison
Legacy of light for women living with HIV in prison Breaking the Walls of Silence The Members of the ACE (AIDS Counseling and Education) Program of the Bedford Hills Correctional Facility.New York:Overlook Press. Pp 336. $29.95.1998. ISBN 0-87951-500-7
f, as Susan Sontag writes, “illness is the night-side of life”, then prisons and jails are the night-side of civilisation. It is of these two night-sides that the members of the ACE (AIDS Counseling and Education) Program of Bedford Hills Correctional Facility write in their documentary handbook on peer education for prisoners. The writers are, or were, inmates of a prison for women in Westchester County, New York. Among the group of authors are many who did not live to see the publication of their work. Still others remain imprisoned 10 years after the foundation of ACE. And if the members of ACE are representative of women who are incarcerated, none of the women has ever written before; few received a formal education. The book itself is a monument to the healing power of collective effort. Given ordinary circumstances, these women would never have founded a nationally recognised, award-winning organisation, nor written this book. Women serving sentences in US prisons are powerless. They are cast out and forgotten, and many (up to 20%) are living with HIV, a disease that is 100 times more prevalent inside prison than outside in the free world. Yet, when faced with the AIDS deaths of their incarcerated peers, the women of Bedford Hills surmounted despair, won the goodwill of their superintendent, and cobbled together an organisation that has been bringing hope and light to the lives of women in their facility for 10 years. ACE is a peer-education programme designed by women inmates and dedicated to dispelling the darkness surrounding AIDS in the prison setting. This book documents the evolution of ACE, illustrating that history with testimonials, poems, drawings, and photographs. Half the text is devoted to a description of the ACE Program, including the conceptual framework and components of ten workshops, which will allow the replication of the ACE Program outside Bedford Hills. The women of ACE have written a book that succeeds at these many tasks, including the one most difficult for any inmate— breaking down the walls of silence surrounding HIV/AIDS in prison. In this book, the women of ACE have let their voices out. Those of us who live in the
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THE LANCET • Vol 353 • March 27, 1999
being highly effective among AIDS advocates and academics in the free world, but only too rarely supported or propagated inside prison walls. The women of ACE have spoken. It is up to us to listen, and the time is ripe: 1·8 million men and women are currently incarcerated in the USA, isolated from society at least for a time, and largely forgotten by their peers. Incarceration rates have accelerated in recent years, reaching epidemic proportions. As of June, 1997, one in 155 US
free world and work with HIV-infected imprisoned women will recognise the voices that speak from the pages of this book. We know how human, how frail, and how imperfect these women are; we know how institutionalisation reinforces their lack of self-esteem. Those of us who are not familiar with prisons and prisoners should read this It’s from Latin, magpie, winged pack-rat. book and learn from the Orality has its seraglios, womens’ testimonials. The which Freud overlooked. (Who sees the stage authors speak frankly about from disadvantaged points behind a pole?) shunning their HIV-infected peers before they gradually Let me tell you about pagophagia. come to terms with their Despite the feral crack of tooth on ice, own risks. They speak honit’s the softest-core of the three classic estly about their own lives, paraphagias. Spooning garden loam about using drugs inside or laundr y starch (geo-, amylo-), and outside prison (using no matter how discreetly done, is weird, drugs to hide from childas is gnawing twigs, gorging on light bulbs, hood memories), about bedsprings, fountain pens and razor blades. having sex with women and men whom they later recogSomeone, somewhere, once ate a whole car, nised as the source of their or so it’s said (Australia, probably) infection. They attest to the lug nut by lug nut down the booby hatch. process of denial, anger, Then there are those who simply like to watch, bargaining, and acceptance own whole phagographies by Crocker, Child, they experienced when congaze, surreptitious, into trendy bistros fronting the diagnosis of for a glimpse of tar t, a flash of glistening joint, HIV. They describe their their upturned collars stiffening with drool. desperate need for information and education about a We’re what we eat, and what we’ve eaten lies disease that was slaughterdown there in our darkness in a lump— ing their loved ones inside bezoar, padzahr, Persian warding stone, and outside prison, entire guilt, the universal antidote. families afflicted by AIDS. They recount their efforts Paula Tatarunis to combat the indignity of Waltham, Massachusetts, USA death from AIDS in prison, to create memorial services for the women who died residents was living behind bars, and the inside prison that were filled with flowincarceration rate approached 450 per ers and with the poetry and songs of the 100 000 population, more than 1·5 survivors. times higher than in 1990, and almost In this book, the individual stories of four times higher than in 1970. Arrests the women form a collective testimonial for drug offences accounted for 72% of that speaks of turning the sorrow, the the growth in sentenced prisoners stigmatisation, and the fear surrounding between 1990 and 1996. AIDS into strength. Faced with isolation Certain populations are disproporand ignorance, these women built a tionately afflicted. The rate of incarceracommunity of women who were poor, tion for black men in the USA is almost middle-class, Latin, black, white, ten times higher than that for white men straight, gay, HIV-positive, HIV-nega(3098 vs 370 per 100 000). Black tive, street-wise, or formally educated, women are twice as likely as Hispanic all dedicated to the struggle against women and eight times more likely than AIDS. They raise a collective voice in white women to be incarcerated (188 vs support of peer education, an educa78 vs 23 per 100 000). Thus there tional tool that is widely recognised as
Pica
1107
should be no surprise that the epidemic of incarceration has had the effect of concentrating people living with HIV/AIDS behind prison walls. This effect is most striking among populations of women in prisons and jails: nationally, twice as many women as men behind bars are afflicted by HIV. Despite evidence that HIV and AIDS are concentrated behind prison walls, medical treatment, patient education, and affiliated services for HIV-infected prisoners have lagged far behind the standards in the community, and efforts to address these issues have met with many obstacles. Because of doubts about the quality of HIV care inside prisons and the stigmatisation they experience, many inmates refuse to disclose their HIV status and to seek care. As recently as 1996, 20% of women taken into custody in New York State at institutions like Bedford Hills were HIV seropositive in a blinded survey; yet only 5·6% of female state prison inmates were identified as HIV infected in a voluntary testing programme in the same year. Prisoners who do not identify themselves as HIV infected may experience more rapid progression of HIV to AIDS and death. Despite gains made in the treatment of HIV and the reduction of AIDS-related morbidity in the community at large, AIDS remains the leading cause of death in US correctional institutions. Effective peer-education programmes such as ACE can work to destigmatise AIDS and improve access
The Nobel Chronicles he 1947 Nobel Prize in Physiology or Medicine was jointly awarded to Houssay and the Cori couple for their independenet work on glucose metabolism. Carl and Gerty Cori (figure, left and middle) were both born in Prague, and obtained their MD degrees from the German University of Prague in 1920—the year they married. Political turmoil forced them to emigrate to the USA in 1922, where they worked as biochemists, first at the University of Buffalo, New York, and then at Washington University, St Louis.
T
1108
to HIV treatment in the prison setting. The greatest tragedy of this book is that the women of Bedford Hills have broken down the walls of silence to speak into a void. Their programme remains the exception, rather than the rule. Notwithstanding the evidence cited here that the prevalence of HIV infection behind bars has reached epidemic proportions, and despite lobbying efforts by groups like National Organizations Responding to AIDS (NORA), the American Civil Liberties Union’s Prison Project, and AIDS advocates at the state level, HIV education and peer-support programmes for incarcerated women are rare, underfunded, and isolated within the institutions they serve. Less than two-thirds of State and Federal correctional facilities polled in a national survey were providing instructor-led HIV/AIDS sessions in 1997, and only 13% were providing peer-led programmes. Partnerships between publichealth agencies and correctional institutions have been slow to develop in response to the crisis in HIV/AIDS education and prevention in prisons. Because of the intricacies of prison bureaucracy and some degree of xenophobia on the part of prison officials, federal funds for HIV/AIDS prevention and case management (such as the Ryan White Title funds) are rarely used to support programmes focused on the correctional setting. Educational programmes run by the Human Resources Service Administration (HRSA), such as
the national AIDS Education and Training Centers, are only now turning their attention to prisons and jails. And unlike the women at Bedford Hills, the White House Office on National AIDS Policy, HRSA, and the Centers for Disease Control and Prevention have failed to unify their voices to make a formal statement on the need for HIV education and prevention efforts behind bars. Partly because of this lack of support at the national level, in many prisons collective efforts to improve HIV care for incarcerated women and men are routinely dismantled and they disappear. Not so in Bedford Hills. The superintendent of that facility, Elaine Lord, deserves our tribute for her willingness to support and nurture ACE. The women of ACE deserve our respect and applause for their ability to unify their voices, sumount despair, and create this practical handbook on AIDS education for their peers. Let their example be a light in the darkness. Let their words become a beacon for those who have been inclined to overlook prisons, the night-side of society. Let their work become a klieg light for those who have failed to support such efforts to make change. Anne S De Groot TB/HIV Research Laboratory, International Health Institute, Brown University, Providence, Rhode Island, USA
became professor and Using washed, rinsed frog director of the Institute of muscles, they discovered Physiology there. He and glucose-1-phosphate (the his colleagues showed that “Cori ester”) as the interthe pituitary was the “masmediary agent between ter gland”, modulating glycogen and glucose-6metabolic functions. They phosphate. They also disnoted that the removal of covered phosphorylase, the 1947: Carl the anterior lobe rendered enzyme involved in glycoFerdinand Cori dogs insulin sensitive, gen breakdown; in 1929, whereas pituitary extracts they proposed “a cycle of (1896–1984); Gerty Theresa Radnitz made them insulin resiscarbohydrates” (the Cori Cor i (1896–1957); tant and diabetic. He corcycle), in which blood gluand Ber nardo rectly hypothesised that cose becomes muscle glycoAlber to Houssay this was due to the effects gen. Although this cycle has (1887–1971) of growth hormone. since been modified, its As with the Coris,politiessential components have cal upheaval affected Houssay’s career. remained unchanged. Because of his vocal opposition to the Despite numerous setPerón regime, he was fired in 1943, backs (prejudice against but was reappointed a decade later. In Gerty because of her sex), the meantime, he founded the the Cori couple prevailed Institute of Biology and Experimental and excelled in their sciMedicine, which became an internaentific pursuits. tionally renowned research centre. Houssay (figure, right) was born in Buenos Aires, Tonse N K Raju and graduated in mediUniversity of Illinois, Chicago, IL, USA cine in 1909. He soon
THE LANCET • Vol 353 • March 27, 1999
f, as Susan Sontag writes, “illness is the night-side of life”, then prisons and jails are the night-side of civilisation. It is of these two night-sides that the members of the ACE (AIDS Counseling and Education) Program of Bedford Hills Correctional Facility write in their documentary handbook on peer education for prisoners. The writers are, or were, inmates of a prison for women in Westchester County, New York. Among the group of authors are many who did not live to see the publication of their work. Still others remain imprisoned 10 years after the foundation of ACE. And if the members of ACE are representative of women who are incarcerated, none of the women has ever written before; few received a formal education. The book itself is a monument to the healing power of collective effort. Given ordinary circumstances, these women would never have founded a nationally recognised, award-winning organisation, nor written this book. Women serving sentences in US prisons are powerless. They are cast out and forgotten, and many (up to 20%) are living with HIV, a disease that is 100 times more prevalent inside prison than outside in the free world. Yet, when faced with the AIDS deaths of their incarcerated peers, the women of Bedford Hills surmounted despair, won the goodwill of their superintendent, and cobbled together an organisation that has been bringing hope and light to the lives of women in their facility for 10 years. ACE is a peer-education programme designed by women inmates and dedicated to dispelling the darkness surrounding AIDS in the prison setting. This book documents the evolution of ACE, illustrating that history with testimonials, poems, drawings, and photographs. Half the text is devoted to a description of the ACE Program, including the conceptual framework and components of ten workshops, which will allow the replication of the ACE Program outside Bedford Hills. The women of ACE have written a book that succeeds at these many tasks, including the one most difficult for any inmate— breaking down the walls of silence surrounding HIV/AIDS in prison. In this book, the women of ACE have let their voices out. Those of us who live in the
I
THE LANCET • Vol 353 • March 27, 1999
being highly effective among AIDS advocates and academics in the free world, but only too rarely supported or propagated inside prison walls. The women of ACE have spoken. It is up to us to listen, and the time is ripe: 1·8 million men and women are currently incarcerated in the USA, isolated from society at least for a time, and largely forgotten by their peers. Incarceration rates have accelerated in recent years, reaching epidemic proportions. As of June, 1997, one in 155 US
free world and work with HIV-infected imprisoned women will recognise the voices that speak from the pages of this book. We know how human, how frail, and how imperfect these women are; we know how institutionalisation reinforces their lack of self-esteem. Those of us who are not familiar with prisons and prisoners should read this It’s from Latin, magpie, winged pack-rat. book and learn from the Orality has its seraglios, womens’ testimonials. The which Freud overlooked. (Who sees the stage authors speak frankly about from disadvantaged points behind a pole?) shunning their HIV-infected peers before they gradually Let me tell you about pagophagia. come to terms with their Despite the feral crack of tooth on ice, own risks. They speak honit’s the softest-core of the three classic estly about their own lives, paraphagias. Spooning garden loam about using drugs inside or laundr y starch (geo-, amylo-), and outside prison (using no matter how discreetly done, is weird, drugs to hide from childas is gnawing twigs, gorging on light bulbs, hood memories), about bedsprings, fountain pens and razor blades. having sex with women and men whom they later recogSomeone, somewhere, once ate a whole car, nised as the source of their or so it’s said (Australia, probably) infection. They attest to the lug nut by lug nut down the booby hatch. process of denial, anger, Then there are those who simply like to watch, bargaining, and acceptance own whole phagographies by Crocker, Child, they experienced when congaze, surreptitious, into trendy bistros fronting the diagnosis of for a glimpse of tar t, a flash of glistening joint, HIV. They describe their their upturned collars stiffening with drool. desperate need for information and education about a We’re what we eat, and what we’ve eaten lies disease that was slaughterdown there in our darkness in a lump— ing their loved ones inside bezoar, padzahr, Persian warding stone, and outside prison, entire guilt, the universal antidote. families afflicted by AIDS. They recount their efforts Paula Tatarunis to combat the indignity of Waltham, Massachusetts, USA death from AIDS in prison, to create memorial services for the women who died residents was living behind bars, and the inside prison that were filled with flowincarceration rate approached 450 per ers and with the poetry and songs of the 100 000 population, more than 1·5 survivors. times higher than in 1990, and almost In this book, the individual stories of four times higher than in 1970. Arrests the women form a collective testimonial for drug offences accounted for 72% of that speaks of turning the sorrow, the the growth in sentenced prisoners stigmatisation, and the fear surrounding between 1990 and 1996. AIDS into strength. Faced with isolation Certain populations are disproporand ignorance, these women built a tionately afflicted. The rate of incarceracommunity of women who were poor, tion for black men in the USA is almost middle-class, Latin, black, white, ten times higher than that for white men straight, gay, HIV-positive, HIV-nega(3098 vs 370 per 100 000). Black tive, street-wise, or formally educated, women are twice as likely as Hispanic all dedicated to the struggle against women and eight times more likely than AIDS. They raise a collective voice in white women to be incarcerated (188 vs support of peer education, an educa78 vs 23 per 100 000). Thus there tional tool that is widely recognised as
Pica
1107
should be no surprise that the epidemic of incarceration has had the effect of concentrating people living with HIV/AIDS behind prison walls. This effect is most striking among populations of women in prisons and jails: nationally, twice as many women as men behind bars are afflicted by HIV. Despite evidence that HIV and AIDS are concentrated behind prison walls, medical treatment, patient education, and affiliated services for HIV-infected prisoners have lagged far behind the standards in the community, and efforts to address these issues have met with many obstacles. Because of doubts about the quality of HIV care inside prisons and the stigmatisation they experience, many inmates refuse to disclose their HIV status and to seek care. As recently as 1996, 20% of women taken into custody in New York State at institutions like Bedford Hills were HIV seropositive in a blinded survey; yet only 5·6% of female state prison inmates were identified as HIV infected in a voluntary testing programme in the same year. Prisoners who do not identify themselves as HIV infected may experience more rapid progression of HIV to AIDS and death. Despite gains made in the treatment of HIV and the reduction of AIDS-related morbidity in the community at large, AIDS remains the leading cause of death in US correctional institutions. Effective peer-education programmes such as ACE can work to destigmatise AIDS and improve access
The Nobel Chronicles he 1947 Nobel Prize in Physiology or Medicine was jointly awarded to Houssay and the Cori couple for their independenet work on glucose metabolism. Carl and Gerty Cori (figure, left and middle) were both born in Prague, and obtained their MD degrees from the German University of Prague in 1920—the year they married. Political turmoil forced them to emigrate to the USA in 1922, where they worked as biochemists, first at the University of Buffalo, New York, and then at Washington University, St Louis.
T
1108
to HIV treatment in the prison setting. The greatest tragedy of this book is that the women of Bedford Hills have broken down the walls of silence to speak into a void. Their programme remains the exception, rather than the rule. Notwithstanding the evidence cited here that the prevalence of HIV infection behind bars has reached epidemic proportions, and despite lobbying efforts by groups like National Organizations Responding to AIDS (NORA), the American Civil Liberties Union’s Prison Project, and AIDS advocates at the state level, HIV education and peer-support programmes for incarcerated women are rare, underfunded, and isolated within the institutions they serve. Less than two-thirds of State and Federal correctional facilities polled in a national survey were providing instructor-led HIV/AIDS sessions in 1997, and only 13% were providing peer-led programmes. Partnerships between publichealth agencies and correctional institutions have been slow to develop in response to the crisis in HIV/AIDS education and prevention in prisons. Because of the intricacies of prison bureaucracy and some degree of xenophobia on the part of prison officials, federal funds for HIV/AIDS prevention and case management (such as the Ryan White Title funds) are rarely used to support programmes focused on the correctional setting. Educational programmes run by the Human Resources Service Administration (HRSA), such as
the national AIDS Education and Training Centers, are only now turning their attention to prisons and jails. And unlike the women at Bedford Hills, the White House Office on National AIDS Policy, HRSA, and the Centers for Disease Control and Prevention have failed to unify their voices to make a formal statement on the need for HIV education and prevention efforts behind bars. Partly because of this lack of support at the national level, in many prisons collective efforts to improve HIV care for incarcerated women and men are routinely dismantled and they disappear. Not so in Bedford Hills. The superintendent of that facility, Elaine Lord, deserves our tribute for her willingness to support and nurture ACE. The women of ACE deserve our respect and applause for their ability to unify their voices, sumount despair, and create this practical handbook on AIDS education for their peers. Let their example be a light in the darkness. Let their words become a beacon for those who have been inclined to overlook prisons, the night-side of society. Let their work become a klieg light for those who have failed to support such efforts to make change. Anne S De Groot TB/HIV Research Laboratory, International Health Institute, Brown University, Providence, Rhode Island, USA
became professor and Using washed, rinsed frog director of the Institute of muscles, they discovered Physiology there. He and glucose-1-phosphate (the his colleagues showed that “Cori ester”) as the interthe pituitary was the “masmediary agent between ter gland”, modulating glycogen and glucose-6metabolic functions. They phosphate. They also disnoted that the removal of covered phosphorylase, the 1947: Carl the anterior lobe rendered enzyme involved in glycoFerdinand Cori dogs insulin sensitive, gen breakdown; in 1929, whereas pituitary extracts they proposed “a cycle of (1896–1984); Gerty Theresa Radnitz made them insulin resiscarbohydrates” (the Cori Cor i (1896–1957); tant and diabetic. He corcycle), in which blood gluand Ber nardo rectly hypothesised that cose becomes muscle glycoAlber to Houssay this was due to the effects gen. Although this cycle has (1887–1971) of growth hormone. since been modified, its As with the Coris,politiessential components have cal upheaval affected Houssay’s career. remained unchanged. Because of his vocal opposition to the Despite numerous setPerón regime, he was fired in 1943, backs (prejudice against but was reappointed a decade later. In Gerty because of her sex), the meantime, he founded the the Cori couple prevailed Institute of Biology and Experimental and excelled in their sciMedicine, which became an internaentific pursuits. tionally renowned research centre. Houssay (figure, right) was born in Buenos Aires, Tonse N K Raju and graduated in mediUniversity of Illinois, Chicago, IL, USA cine in 1909. He soon
THE LANCET • Vol 353 • March 27, 1999