Abstract
Across the United States, laws, policies, and practices put women living with HIV in jeopardy. In particular, the dignity, health, and well-being of women living with and at risk for HIV as well as the health and well-being of their families and communities is hampered by punitive laws and policies. Laws and policies that do not meet, or worse, criminalize women’s sexual and reproductive rights result in the economic, social and political deprivation of marginalized women and girls—and especially those living with and at risk of HIV. These laws and policies exacerbate an already outsized HIV epidemic in underserved communities, and communities of color in the United States.
This article draws from and builds on a human rights workshop that took place as part of the forum “Bringing Gender Home: Implementing Gender Responsive HIV/AIDS Programming for US Women and Girls,” sponsored by the Office of Women’s Health. It focuses on the damaging impact of laws, policies, and practices that criminalize women’s sexuality. These laws significantly impact the well-being of women living with and at risk for HIV, and have an impact on the capacity of poor women of color in the United States to fully exercise their rights. When laws that purport to protect public health have the result of limiting women’s reproductive choices, or have a disproportionate impact on marginalized groups such as sex workers, fundamental breaches of women’s rights occur.
Introduction
In January, a report on gender, race, and HIV in the United States made headlines among advocacy communities by highlighting interconnections between HIV and inequality. The report, entitled “Sex, Race, and Geographic Region Influence Clinical Outcomes Following Primary HIV-1 Infection” found that “women in the United States suffer from HIV-related illnesses more than twice as much as men … [and] found minorities and people living in the South shoulder a much higher burden of HIV/AIDS related disease than anyone else in the country. Minority women have worse outcomes…”, (
Meditz et al., 2011
). In sum, it confirmed that HIV flourishes in a context of inequity. In the United States, as elsewhere, discrimination and marginalization shape patterns of HIV. Race, gender, and economic factors drive disparities in health outcomes for people living with HIV far more than biological factors (Meditz et al., 2011
).This article documents how a range of U.S. laws, policies, and practices at the national, state, and municipal levels, put women living with HIV in jeopardy. Punitive laws and polices jeopardize the dignity, health, and well-being of women living with and at risk for HIV, as well as their families and communities. Laws and policies that undermine, or worse, criminalize women’s sexual and reproductive rights result in the economic, social, and political deprivation of marginalized women and girls—and especially those living with and at risk of HIV. This exacerbates an already outsized HIV epidemic in underserved communities, including communities of color, in the United States.
This article draws from a human rights workshop held at the forum “Bringing Gender Home: Implementing Gender Responsive HIV/AIDS Programming for US Women and Girls,” sponsored by the
OWH, 2010
. Speakers discussed the value of using a human rights framework to address the HIV-related needs and rights of women and girls in the United States. Vanessa Johnson of the National Association of People Living with AIDS and a founding member of the U.S. Positive Women’s Network (U.S. PWN), presented the “Wheel of Vulnerability,” a tool that shows how women’s vulnerabilities to HIV directly relate to race, gender, sexual orientation, human needs, family history, and trauma. The wheel shows the clear impact of HIV risk on women and the challenges they face living with HIV within the context of their broader experience of human rights violations (Johnson, 2010
).The workshop discussions reaffirmed that international human rights norms (civil, cultural, economic, political, and social) are often compromised in the lives of women and girls living with HIV. The Convention on the Elimination of All Forms of Discrimination Against Women notes in its 15th General Recommendation that, “programmes to combat AIDS should give special attention to the rights and needs of women and children, and to the factors relating to the reproductive role of women and their subordinate position in some societies which make them especially vulnerable to HIV infection.” Yet, violence, marginalization, and discrimination against many women and girls living with, and affected by HIV, in the United States runs contrary to this recommendation. They constitute human rights violations that merit intensified attention from the U.S. government at the federal, state, and municipal levels.
Criminalizing the Sexuality of Women Living With and at Risk of HIV
Women living with and affected by HIV face a range of restrictions on rights, including their freedom of movement and expression, which have an insidious but far-reaching impact on their bodily integrity.
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Because women’s HIV rates and risk in the United States are highest among poor women of color, these constraints compound the burden on women who already experience multiple forms of discrimination and inequality.Although the concept of “bodily integrity” has not been specifically articulated as such in international human rights treaties, the Universal Declaration of Human Rights calls for upholding the “physical integrity of the human person.” This, along with the right to privacy has come to be understood as encompassing the norm of “bodily integrity,” and covering a diverse range of issues from organ donation and genetic testing to sexual and reproductive health and rights. See, for example, 36 San Diego L. Rev. 997 (1999) Jurisprudence in disarray: On Battery, wrongful living, and the right to bodily integrity, A;
Strasser, 1999
. See also footnote 12.U.S. policies and practices criminalizing women’s sexuality are regularly enforced by states and municipalities across the country (
Paltrow and Jack, 2010, May
, Positive Justice Project, 2010
). These prevent poor women from fully exercising their rights and uniquely damage women living with, and at risk of HIV. Laws that limit women’s reproductive choices, or disproportionately restrict or punish marginalized groups such as sex workers, migrant workers, or the formerly incarcerated, constitute fundamental breaches of human rights—including the right to start and maintain a family, the right to decent work, the right to a decent standard of living, and the right to the highest attainable standard of health.For example, until this year, the Mississippi State Health Department required people testing positive for HIV to sign an “acknowledgement form”—presented as a legal document—pledging to uphold “the necessity of not causing pregnancy or becoming pregnant” (
Mississippi Department of Health
). Under Mississippi’s felony HIV exposure and transmission law,Mississippi Department of Health. (n.d.) HIV INTERVIEW FORM No. 917, Mississippi State Department of Health. Available: http://www.hivlawandpolicy.org/resources/view/556.
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these forms may serve as evidence in prosecutions of pregnant women living with HIV charged with failure to disclose their HIV status or deliberately exposing or transmitting HIV to another person. The form risks fostering misinformation about acquiring or living with HIV, ignoring the preventability of vertical (mother-to-child) transmission with adequate medical care, excluding information indicating where preventative help is available, and not mentioning that people living with HIV can continue to enjoy a safe and satisfying sexual and personal life postdiagnosis. Nevertheless, dissemination of this type of misinformation persists in several states.Contagious diseases; causing exposure to human immunodeficiency virus (HIV) Miss. Code Ann. § 97-27-14(1) ((1) It shall be unlawful for any person to knowingly expose another person to a human immunodeficiency virus (HIV). Prior knowledge and willing consent to the exposure is a defense to the crime set forth herein. (2) For a violation of this section where no cure is available for such disease such violation shall be a felony and, upon conviction, a violator shall be punished by imprisonment for not more than ten (10) years and a fine of not more than Ten Thousand Dollars ($10,000.00). (3) The provisions of this section shall be in addition to any other provisions of law for which the actions described in this section may be prosecuted).
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Although the practice was formally abandoned after continued advocacy from the American Civil Liberties Union of Mississippi, the effects of the policy remain as health care professionals were not retrained to inform or actively provide accurate information regarding living with HIV.See e.g., HIV INTERVIEW FORM No. 917, Mississippi State Department of Health (can be accessed at http://www.hivlawandpolicy.org/resources/view/556); Client Acknowledgment Form, Kalamazoo County Health and Community Services (clients that test positive for HIV must sign and date the form acknowledging that they understand they are required to disclose their HIV status to sex partners. The form states that failure to do so can result in the health department’s use of Michigan’s HIV-specific criminal law, Mich. Comp. Laws Ann. § 333.5210, which makes it a felony for a person who knows that she has tested HIV positive to engage in sexual penetration).
As a result of such practices, women, men, and trans people around the country find their rights to bodily integrity circumscribed, thereby increasing their vulnerability to HIV and reducing their access to HIV health, legal, and social services. For instance, laws, policies, and practices in Tennessee and the District of Columbia target some of the poorest and most underserved communities, particularly sex workers. Poor people of color disproportionately populate lower economic echelons of the sex industry and are often targets of abuse by both clients and the state.
When sex workers living with HIV are arrested in Tennessee, they face accelerated prostitution charges, raising the usual misdemeanor solicitation charge to a felony, including compulsory sex offender registration.
5
Many public benefits programs exclude convicted felons,Tenn. Code Ann. § 39-13-516 (A person commits aggravated prostitution when, knowing that such person is infected with HIV, the person engages in sexual activity as a business or in a house of prostitution or loiters in a public place for the purpose of being hired to engage in sexual activity. Aggravated prostitution is a Class C felony).
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leaving sex workers without access to substance abuse treatment, domestic violence shelter care, or subsidized housing. Felons and sex offender convictions also drastically limit a person’s eligibility for employment, fueling a cycle of risk if the woman resumes sex work.See
Finzen, 2005
for a discussion about the collateral consequence laws effect ex-offenders by restricting access to welfare, food stamps, housing, employment, and financial aid for higher education.In Washington, DC,—the city with the highest HIV rates per capita in the United States (
Vargas and Fears, 2009, March 15
)—police engage in practices that hamper condom use and exacerbate HIV transmission rates. Police harass and sometimes initiate prostitution charges against women, men, and trans people found in possession of multiple condoms (Ahmed and Kelly, 2010, January 7
). This practice may push sex workers into more remote and dangerous settings, risking unchecked violence, abuse, and coerced, unprotected sex (Ahmed and Kelly, 2010, January 7
; Forbes, 2010
). It may also discourage sex workers from carrying the condoms essential to protect themselves and their clients from sexually transmitted infections, not to mention unintended pregnancy.Sex workers in Louisiana have protested police harassment (
Baum, 2006, January 9
, U.S. Department of Justice Civil Rights Division, Investigation of the New Orleans Police Department, 2011, March
) resulting from Louisiana’s 1805 “Crimes Against Nature” Law. This law labels anyone convicted of engaging in oral or anal sex as a sex offenderU.S. Department of Justice Civil Rights Division, Investigation of the New Orleans Police Department. (2011, March). Available: http://www.justice.gov.
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(La. R.S. 14:89 Crime Against Nature: La. R.S. 14:89 Crime Against Nature: 14:89 defines crimes against nature generally as “unnatural carnal copulation by a human being with another of the same sex or opposite sex or with an animal. The use of the genital organ of one of the offenders of whatever sex is sufficient to constitute the crime.” A crime against nature includes “solicitation by a human being of another with the intent to engage in any unnatural carnal copulation for compensation.” This is the law used to convict sex workers of a felony offense for intending to, or performing oral sex with a client. In La. R.S. 15:541 Registration of Sex Offenders, Sexually Violent Predators, and Child Predators, 15:541(24) included in the definitions of a “sex offense” is a crime against nature as defined in the La. R.S. 14:89 Crime Against Nature statute. In La. R.S. 15:542 Registration of Sex Offenders, Sexually Violent Predators, and Child Predators, 15:542(A)(1)(a) mandates that a person defined as a sex offender under La. R.S. 15:541 be required to register as a sex offender. This law also describes the various requirements and restrictions placed on convicted sex offenders. In La. R.S. 15:544 Registration of Sex Offenders, Sexually Violent Predators, and Child Predators, 15:544 sets the length of time that convicted sex offenders be registered on the sex offender list. The length of time seems to be from 15 years to the duration of a lifetime, with some room for pardons.
U.S. Department of Justice Civil Rights Division, Investigation of the New Orleans Police Department, 2011, March
). It raises a misdemeanor solicitation charge to a felony, including increased financial penalty and inclusion of the sex worker’s name on the state sex offender registry (U.S. Department of Justice Civil Rights Division, Investigation of the New Orleans Police Department. (2011, March). Available: http://www.justice.gov.
NO Justice, 2011
). In some cases, women who served sentences and/or paid fines years earlier and are legally employed, were retroactively added to the sex offender registry, which includes “sex offender” stamped in bright orange on one’s driver’s license.As these examples help to illustrate, laws that seek to regulate, and often criminalize, women’s sexuality (and that are primarily imposed on those with the least economic and political power) are detrimental to both human rights and public health. Despite evidence to the contrary, they are often passed and implemented under the guise of advancing public health. Ultimately, however, they serve to reinforce the problematic view that women’s autonomous sexuality and bodily integrity threatens public order and therefore requires public control.
The Right to Information and High-Quality Sexual and Reproductive Health Care
In early 2011, a physician in Philadelphia, Pennsylvania, was indicted on murder charges for performing unsafe and unsanitary abortions in Philadelphia (
Misc, 2011, January
, In re: Misc. No. 0009901–2008. (2011, January). County Investigation in Grand Jury XXIII: C-17, The Court of Common Pleas, First Judicial District of Pennsylvania Criminal Trial Division. Report of the Grand Jury, Pennsylvania District Attorney R. Seth Williams. (Grand Jury investigation of Women’s Medical Society owned and operated by Kermit B. Gosnell, MD.)
Tevernise, 2011, January 22
). Operating in squalid conditions for many years at a clinic named the Women’s Medical Society, without training or licensure to practice gynecology or obstetrics, his botched procedures resulted in multiple deaths and the inadvertent sterilization of many women (Misc, 2011, January
, In re: Misc. No. 0009901–2008. (2011, January). County Investigation in Grand Jury XXIII: C-17, The Court of Common Pleas, First Judicial District of Pennsylvania Criminal Trial Division. Report of the Grand Jury, Pennsylvania District Attorney R. Seth Williams. (Grand Jury investigation of Women’s Medical Society owned and operated by Kermit B. Gosnell, MD.)
Tevernise, 2011, January 22
). His patients were poor and often young women, women of color, and/or immigrant women—the same populations most vulnerable to HIV and least protected with regard to their human rights.Many of his patients said they used his services because they did not know where else to go. Indeed, access to nonjudgmental, adequate sexual and reproductive health care remains elusive for many women, men, and trans people. For women living with HIV, feeling safe to inquire about and having access to adequate information about reproductive choices, partner risk reduction in serodiscordant couples, or becoming pregnant when living with HIV is key to maintaining the highest standard of their own and their families’ health and their right to an adequate standard of living.
Lack of access is particularly troublesome in populations with the greatest need. The combined American Indian and Alaska Native population holds the third highest prevalence of HIV in the United States, accounting for population size, and at the same time, an American Indian woman is twice as likely to experience rape or sexual assault in her lifetime, relative to women of other races or ethnicities.
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The links between sexual assault and HIV risk are clear—an individual who experiences sexual assault is more likely to engage in high-risk sexual behavior, have less ability to negotiate condom use, and experience more unwanted sexual activity postassault.Native American Self-Study Module, Mountain Plains AIDS Education and Training Center & National Native American AIDS Prevention Center, p. 8 (2005) available: http://www.mpaetc.org.
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Survivors of sexual violence often fail to report the incident for fear of and lack of trust in the criminal justice system (Native American Self-Study Module, Mountain Plains AIDS Education and Training Center & National Native American AIDS Prevention Center, p. 8 (2005) available: http://www.mpaetc.org.
Hamby, 2004, May
), and those who are living with HIV remain silent for the lack of culturally sensitive services available and fear of disclosure (U.S. Centers for Disease Control and Prevention, 2008
).In 2010, the U.S. PWN conducted a nationwide survey on the sexual and reproductive health experiences of women living with HIV (
Kelly et al., 2011, March
). Although many had positive experiences speaking with their medical providers about pregnancy options, and subsequently having children, many others felt medical providers were uninformed, displayed stigmatizing attitudes regarding their reproductive choices and were unsupportive of their pregnancy desires. Some were not given current information about how women living with HIV can remain healthy while pregnant and prevent vertical transmission. One respondent said, “I seemed to be the educator in most of these areas. I was more up to date on the information than any doctor I found. My doctor had little context, nor experience, so it was up to me and the Internet. Searching for an OB/GYN who was supportive was even more difficult. I was even offered an abortion by one OB” (Kelly et al., 2011, March
). Another woman reported that her doctor provided information, but also expressed his bias, “[I was] warned against getting pregnant, but [the doctors] stated that there are treatments available if the decision was made to become pregnant” (Kelly et al., 2011, March
).Biases resulting in poor or incomplete provision of medical information and care can compromise women’s right to the highest attainable standard of health and can result in negative health outcomes, such as a lack of prenatal and postnatal care, or giving birth to a child with HIV without the resources and knowledge to support the child’s health and development. One woman was “told by several doctors to abort the pregnancy. I was almost in my second trimester before I knew I was pregnant. I ran out of many a doctor’s offices in tears after being told I was ‘selfish’ or ‘if that were my wife, I’d make her have an abortion” (
Kelly et al., 2011, March
). Such discriminatory treatment deters women from asking questions about their opportunities for positive health and sexuality, circumscribing their right to accessible, affordable, acceptable, and quality health care and to found a family, if they so wish.Economic Rights and Justice for Women Living With HIV
Women’s economic rights are closely tied to their civil, cultural, political, and social rights. Each time these rights are violated, it reveals another layer of marginalization. Compounded violations meld into situations that make it extremely difficult for women living with HIV to achieve long-term economic and social stability.
The story of Shannon is another example of this. Shannon was convicted under a South Carolina law
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that criminalizes non-disclosure of HIV status when engaging in sexual intercourse.Shannon’s story can be heard by listing to a December 16, 2010, teleconference call, “Why Should Criminalization Matter to You,” sponsored by the U.S. PWN and the National Association of People Living with AIDS. Available: http://www.pwn-usa.org under the heading Criminalization.
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The onus of proving that one disclosed her status is on the HIV-positive person, not on the person initiating charges. During a national conference call for advocates in 2010, Shannon publically shared her story to show that HIV criminalization laws harm, not protect, women.S.C. Code Ann. § 44-29-145 (Felony punishable by a fine of not more than $5,000 or imprisonment for not more than 10 years) (It is unlawful for a person who knows he or she is infected with HIV to: (1) knowingly engage in sexual intercourse (vaginal, anal, or oral) with another person without first informing that person of his HIV infection; (2) knowingly commit an act of prostitution with another person; (3) knowingly sell or donate blood, blood products, semen, tissue, organs, or other body fluids; (4) forcibly engage in sexual intercourse (vaginal, anal or oral) without the consent of the other person, including one’s legal spouse; or (5) knowingly share with another person a hypodermic needle/syringe without first informing that person that the needle or syringe has been used by someone infected with HIV).
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Shannon learned she contracted HIV in the 1990s, while in a long-lasting, abusive relationship. Her partner knew her HIV status and accompanied her to clinic visits—both for her HIV treatment and for prenatal care when she became pregnant with their child. The abuse and harassment escalated when Shannon finally decided to leave him. He disclosed Shannon’s HIV status to her family, people at her work, and to anyone who would listen. After Shannon obtained a restraining order against him, he filed charges against Shannon under South Carolina’s HIV-specific criminalization law.Shannon’s story can be heard by listing to a December 16, 2010, teleconference call, “Why Should Criminalization Matter to You,” sponsored by the U.S. PWN and the National Association of People Living with AIDS. Available: http://www.pwn-usa.org under the heading Criminalization.
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The judge gave little consideration to testimony in her defense that Shannon had indeed disclosed her HIV status to her partner. Shannon, who had no prior negative interactions with the law, was sentenced to 6 years in prison. In essence, she was sent to prison for being an HIV-positive woman with an abusive ex-partner.Shannon’s story can be heard by listing to a December 16, 2010, teleconference call, “Why Should Criminalization Matter to You,” sponsored by the U.S. PWN and the National Association of People Living with AIDS. Available: http://www.pwn-usa.org under the heading Criminalization.
Upon her release, Shannon immediately, and futilely, fought to regain custody of her son from her former partner. She could not find a job because of requirements to disclose the conviction on job applications, even though she had held a managerial position before her conviction. HIV stigma is intense in South Carolina (
Southern States Manifesto, 2008
), and Shannon is listed as an HIV-positive felon. To make matters worse, the AIDS Drug Assistance Program (a federally funded initiative to provide medication to the uninsured) has long waiting lists in the Southern states that number in the thousands, where Medicaid programs are severely underfunded. For Shannon, this chain of events has culminated in underemployment (and sometimes unemployment), no assured access to essential medicines, no custody of her son (because she doesn’t have access to affordable legal services to fight her partner’s claim to custody), and a highly stigmatized social position. Convicted felons are often also ineligible for housing and food assistance, educational assistance, or drug treatment programs.Homelessness provides another example of insecurity of rights among people living with HIV. Homeless individuals in the United States have an HIV prevalence rate three to nine times greater than that of the general population and are seven to nine times more likely to die from HIV (
National AIDS Housing Coalition, 2007
). The typical, homeless family is composed of a mother in her late 20s with two children, and 84% of all American homeless families are headed by women (National AIDS Housing Coalition. (2007). Housing is HIV prevention and heath care: Findings from the National Housing and HIV/AIDS Research Summit Series, Presenter’s Guide 11. Available: http://www.nationalaidshousing.org.
U.S Department of Housing and Urban DevelopmentOffice of Community Planning and Development, 2007
).U.S. Department of Housing and Urban Development, Office of Community Planning and Development. (2007). Annual Homeless Assessment Report to Congress. Available: www.huduser.org.
If homeless women have to feed and care for children, they are more likely than men in similar situations to exchange sex for shelter, food, or money. Women at risk of homelessness are more likely to remain in abusive relationships. Homeless women with children also tend to focus on food and shelter for their families, which compromises their ability to focus on their own health needs. All of these factors contribute to increased vulnerability to HIV. As one HIV-positive woman in the District of Columbia put it, “If you don’t have housing and you aren’t settled, [you’re] not gonna take [your] meds, or go to the doctor. [You] can’t get to it. [You] can’t feel better about [your]self. If you don’t feel good about yourself … you’ll take recreational drugs” (
Women’s Collective and the International Women’s Human Rights Clinic, Georgetown University law Center, 2009
).Securing Human Rights
Human rights apply to all people everywhere. The Joint United Nations Programme on HIV/AIDS (UNAIDS) identified the following as minimal guarantees that should guide the formation and enactment of laws, policies, and practices that address the HIV epidemic in the United States (
UN Office of the High Commissioner for Human Rights and UNAIDS, 2007
):- •Nondiscrimination and equality before the law14includes protections against discrimination when seeking help for services, benefits, or housing regardless of HIV status, sex, gender, sexual orientation, or occupation. Being free from discrimination before the law theoretically prohibits laws that have a disparate impact on people living with HIV or that further stigmatizing and discriminatory treatment (such as the laws cited above that criminalize HIV exposure, or the reproductive choices of women living with HIV).See, for example, arts. 3 and 26 of International Covenant on Civil and Political Rights, U.N. Doc. A/6316 (1966), 999 U.N.T.S. 171, ratified by U.S. June 8, 1992[hereinafter ICCPR]; the International Convention on the Elimination of All Forms of Racial Discrimination, G.A. res. 2106 (XX), 20 U.N. GAOR Supp. (No. 14) at 47, U.N. Doc. A/6014 (1966), 660 U.N.T.S. 195, ratified by U.S. Oct. 21, 1994 [hereinafter CERD]; and art. II of the American Declaration on the Rights and Duties of Man, O.A.S. Res. XXX, (1948), OEA/Ser.L.V/II.82 doc.6 rev.1 at 17 (1992) [hereinafter American Declaration]. And while signed by the U.S. but not yet ratified, arts.2 and 3 of International Covenant on Economic, Social and Cultural Rights, G.A. res. 2200A (XXI), 21 U.N.GAOR Supp. (No. 16) at 49, U.N. Doc. A/6316 (1966), 993 U.N.T.S. 3, signed by the U.S. Oct. 5, 1977 [hereinafter ICESCR] and the Convention on the Elimination of All Forms of Discrimination against Women, G.A. res. 34/180, 34 U.N. GAOR Supp. (No. 46), U.N. Doc. A/34/46, signed by the U.S. July 17, 1980.14See, for example, arts. 3 and 26 of International Covenant on Civil and Political Rights, U.N. Doc. A/6316 (1966), 999 U.N.T.S. 171, ratified by U.S. June 8, 1992[hereinafter ICCPR]; the International Convention on the Elimination of All Forms of Racial Discrimination, G.A. res. 2106 (XX), 20 U.N. GAOR Supp. (No. 14) at 47, U.N. Doc. A/6014 (1966), 660 U.N.T.S. 195, ratified by U.S. Oct. 21, 1994 [hereinafter CERD]; and art. II of the American Declaration on the Rights and Duties of Man, O.A.S. Res. XXX, (1948), OEA/Ser.L.V/II.82 doc.6 rev.1 at 17 (1992) [hereinafter American Declaration]. And while signed by the U.S. but not yet ratified, arts.2 and 3 of International Covenant on Economic, Social and Cultural Rights, G.A. res. 2200A (XXI), 21 U.N.GAOR Supp. (No. 16) at 49, U.N. Doc. A/6316 (1966), 993 U.N.T.S. 3, signed by the U.S. Oct. 5, 1977 [hereinafter ICESCR] and the Convention on the Elimination of All Forms of Discrimination against Women, G.A. res. 34/180, 34 U.N. GAOR Supp. (No. 46), U.N. Doc. A/34/46, signed by the U.S. July 17, 1980.
- •The right to privacy and physical integrity15includes protection against mandatory, or coercive testing; the right to confidentiality in testing and disclosure of status; and the rights to marry and found a family regardless of HIV status, to decide when and whether to have a child, and to access information and services required to make a voluntary, informed decision in this area.The right to privacy is enshrined in art. 17 of the ICCPR and art. V of the American Declaration; right to physical integrity and security appears in 6 of ICCPR, and art. 3 of the Universal Declaration of Human Rights, G.A. res. 217A (III), U.N. Doc A/810 at 71 (1948) [hereinafter UDHR]; and art. I of the American Declaration.15The right to privacy is enshrined in art. 17 of the ICCPR and art. V of the American Declaration; right to physical integrity and security appears in 6 of ICCPR, and art. 3 of the Universal Declaration of Human Rights, G.A. res. 217A (III), U.N. Doc A/810 at 71 (1948) [hereinafter UDHR]; and art. I of the American Declaration.
- •The right to liberty, dignity and freedom from cruel, inhumane, and degrading treatment16includes protection from imprisonment, segregation, or isolation in a special hospital or prison ward; freedom from violence (including sexual violence), abuse, harassment, mandatory testing, arrested, or imprisoned on the basis of HIV status.The right to liberty is mandated by art. 3 of UDHR and art. 9 of ICCPR; the right to dignity and to be free from degrading treatment appear in nearly every regional and international human rights document, including treaties ratified by the U.S., such as, art. 7 of the ICCPR, and Convention against Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment, G.A. res. 39/46, 39 U.N. GAOR Supp. (No. 51) at 197, U.N. Doc. A/39/51 (1984), entered into force June 26, 1987, ratified by the U.S. Oct. 21, 1994, [hereinafter CAT].16The right to liberty is mandated by art. 3 of UDHR and art. 9 of ICCPR; the right to dignity and to be free from degrading treatment appear in nearly every regional and international human rights document, including treaties ratified by the U.S., such as, art. 7 of the ICCPR, and Convention against Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment, G.A. res. 39/46, 39 U.N. GAOR Supp. (No. 51) at 197, U.N. Doc. A/39/51 (1984), entered into force June 26, 1987, ratified by the U.S. Oct. 21, 1994, [hereinafter CAT].
- •The right to information and education includes the right to have access to comprehensive information about HIV prevention and treatment, as well as sexual and reproductive health, that is accurate, comprehensive, accessible, and linguistically and culturally appropriate.17The right to access and impart information and to education is enshrined in, for example, art. 19(2) of the ICCPR and art. 19 of UDHR.
- •The right to health includes the right to available, accessible, acceptable, and quality health care. This included health care prevention and treatment services, voluntary testing and counseling for HIV and other sexually transmitted infections, and contraceptive and sexually transmitted infection prevention methods such as male or female condoms. It also includes the right not to be denied access to the highest quality health care or treatment on the basis of HIV status, or the full range of reproductive options and services.18The right to non-discrimination in healthcare is mandated by inter alia art. 5 of CERD; the right to the highest attainable standard of health is included in art. 12 of the ICESCR and art. 25 of UDHR.
- •The right to participate in public life and decision making includes the right of HIV-affected communities and individuals to participate in the formulation and implementation of HIV policy at every level. This participation must be meaningful and must include the involvement of disadvantaged and marginalized groups.19See, for example, UDHR art. 27.
Human Rights–Based Responses
In June 2011, governments around the world, including the United States, pledged to continue to uphold the “
Political Declaration on HIV/AIDS
, Intensifying Our Efforts to Eliminate HIV and AIDS” at the United Nations. They reaffirmed thatPolitical Declaration on HIV/AIDS, paragraph 11, at http://data.unaids.org/pub/Report/2006/20060615_hlm_politicaldeclaration_ares60262_en.pdf.
globally women and girls are still the most affected by the epidemic and that they bear a disproportionate share of the care-giving burden and that the ability of women and girls to protect themselves from HIV continues to be compromised by physiological factors, gender inequalities including unequal legal, economic and social status, insufficient access to healthcare and services, including for sexual and reproductive health and all forms of discrimination and violence, including sexual violence and exploitation against them. (Political Declaration, paragraph 41)
They also reaffirmed that
the full realization of all human rights and fundamental freedoms for all is an essential element in the global response to the HIV epidemic, including in the areas of prevention, treatment, care and support, and recognize that addressing stigma and discrimination against people living with, presumed to be living with or affected by HIV, including their families, is also a critical element in combating the global HIV epidemic; and recognize the need, as appropriate, to strengthen national policies and legislation to address such stigma and discrimination. (Political Declaration, paragraph 39)
These international commitments signal recognition of the obligations governments undertook in ratifying international and regional human rights treaties regarding implementation of the global HIV/AIDS response. Although they have yet to be fully reflected in legal, policy, and service environments, a plethora of good examples exist that illustrate how application of these principles can guide programming that promotes and protects women’s and girls’ human rights, while maximizing the effectiveness of HIV prevention, treatment, care, and support. Organizations worldwide have developed good practices that actively seek to provide HIV-related services, including as well as moving beyond the health sector, in ways that empower women and girls.
Creación Positiva is a Barcelona-based organization providing a wide range of HIV-related services (
Rothschild et al., 2006
). Their community workshops (some of which are taken to incarcerated women) are all designed using a gender-based perspective and extend beyond narrow constructions of safe sex to look at sexuality and relationships comprehensively. They use songs, comics and other media to address overarching topics like “romantic love” while incorporating factual information (Rothschild et al., 2006
).SisterLove,
20
an HIV and reproductive justice organization for women based in Atlanta, Georgia, uses a similar approach. SisterLove’s Healthy Love Party Workshops are designed to empower women to make positive decisions for their sexual health in a context that is fun and highlights the full range of human sexuality and safe sex practices. Originally designed for groups of women, these Party Workshops are now presented to groups of college students, mothers, young adults, gay men, single women, lesbians, and couples.See more information about Sister Love at http://sisterlove.org/.
In South Africa, Men as Partners
21
addresses violence against women through directed services for men, focusing on education and integrating women into facilitated group discussions with men to discuss what men can do to empower women in communities, with the end goal of decreasing violence and decreasing HIV transmission (Men as Partners is a program instituted by the New York-based Engender Health organization. More information available at http://www.engenderhealth.org.
Rothschild et al., 2006
).Criola, based in Rio de Janeiro, addresses the unique needs of the communities of Brazil’s favelas. The organization brings HIV services directly to the communities where government services will not reach, increasing access particularly for Black women in Brazil. Criola devotes its services to working against multiple forms of marginalization perpetuated by homophobia, racism, sexism, and violence. For example, in collaboration with a small trade union, Black parliamentarians, and others, Criola organized a campaign for legal protection for domestic workers (usually disadvantaged Black women). The campaign was successful, and today a law exists to regulate working hours and employee benefits. Changes in tax legislation now also encourage legalized employment (
Patterson et al., 2009, November
).In the United States, domestic HIV advocates for women have taken their lead from the international community by providing human rights trainings to women with HIV to ensure that HIV-positive women know their rights and can better advocate on their community’s behalf. In partnership with local HIV-positive women advocates, the U.S. Positive Women's Network has facilitated know-your-rights trainings in some of the areas hardest hit by the U.S. HIV epidemic. One trainee in New Orleans, Louisiana, reported that after the training she was better prepared to help newly diagnosed women learn about their human rights. Another woman in Oakland, California reported that she “learned how to use language to express what I already knew: That health is not merely the absence of disease but a state of total physical, mental and social well-being.” And another woman in Philadelphia, Pennsylvania, stated that “[a]fter the training I began to pay more attention to my rights and the rights of others and to use my voice”.
Legal action is another tool that organizations use to address human rights violations. The Namibian Women’s Health Network is demanding that the Namibian government hear cases of forced sterilization of women living with HIV. One woman tells the following, “One doctor … she came to me in the morning time to tell me, ‘You know you cannot have any more babies…. They closed you.’ I say, ‘No, I did not sign, because I am a married woman, I cannot sign to not getting a baby.’ They say, ‘No, we cannot do anything more, because they already closed you’”(
Gatsi et al., 2010
). Raising women’s stories to the level of legal testimony moves the issue from a private violation to a public crime, thereby demanding that the government protect HIV-positive women’s right to bodily integrity.The New Orleans-based coalition, NO Justice, filed federal suit in February 2011 on behalf of nine anonymous plaintiffs, claiming that Louisiana’s “Crimes against Nature” law is unconstitutional.
24
Women with a Vision, a community-based organization in New Orleans serving marginalized women, founded NO Justice in 2009 to employ a human rights-based approach to document the disproportionate impact of this law on sex workers of all genders. HIV/AIDS and women’s health entities together built the momentum to create an effective legal challenge to this injustice.See Complaint, Doe v. Jindal, (ED.L.A., Feb. 15, 2011) available at http://www.ccrjustice.org.
25
Emboldened by the filing of this lawsuit, Louisiana House Representative Charmaine Marchand Stias introduced a bill that passed the house and senate, which amends the law to exclude those convicted of Solicitation of Crimes against Nature from being labeled sex offenders.For more details, see http://wwav-no.org/.
Conclusion: No Rights, No Health
Although HIV thrives in environments of discrimination, stigma, and inequality, strategies addressing HIV frequently ignore these factors, especially regarding marginalized women. Too often, women living with and affected by HIV find their lives and sexuality at risk of criminalization. The likelihood of an individual contracting HIV—and of being able to effectively find and obtain adequate medical care and social support—is directly related to the person’s access to resources, and by factors stemming from gender, race, ethnicity, sexual orientation, and gender identity. A recent editorial in the Journal of Infectious Diseases concluded that, “Although biologic differences in HIV presentation and outcomes exist among genders and races, these are not easily altered, nor are they known to be of major clinical significance. Socioeconomic factors play a much more important role in determining HIV disease outcomes, at an individual as well as a population level” (
2
). Structural factors—including poverty, violence, inequality, racism, and sexual biases such as homophobia, transphobia, and sexism—are largely driving the HIV epidemic in the United States. There is increasing recognition that ensuring basic human rights is integral to successful efforts to reduce HIV transmission and promote health among people living with HIV. The persistent use of punitive practices to circumscribe women’s sexuality puts their health and rights at risk and reflects the resistance of federal and state governments to uphold all people’s basic human rights in their HIV responses.Martin Luther King, Jr., once said, “Of all the forms of inequality, injustice in healthcare is the most shocking and inhumane.” Health disparities have historically hampered the struggle for equality in the United States. The HIV epidemic is a crucial opportunity to use a lens that shows us clearly how racism, sexism, heteronormativity, poverty, and discriminatory laws directly contribute to poor health outcomes and disparities. By using this lens in tandem with a human rights approach we can more effectively identify what is working—and what is not. It allows us to see more clearly where to act and how we can do so successfully. The goals of reducing disparities and realizing all people’s human rights are indivisible.
Acknowledgments
The authors thank Kelly Starcevich, Anna Forbes, and two anonymous reviewers for their helpful comments.
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Biography
Susana T. Fried, PhD, is Senior Gender Advisor, HIV/AIDS at UNDP’s Bureau for Development Policy. Susana has written and spoken widely on the intersection of HIV and gender-based violence, sexuality and rights, violence against women and girls, and developing intersectional human rights practices.
Brook Kelly, JD, is a human rights attorney for the U.S. Positive Women’s Network, a project of WORLD. Brook’s areas of expertise include women’s human rights, especially diminishment and criminalization of women’s sexual and reproductive rights; and the alleviation of health disparities.
Article info
Publication history
Accepted:
July 22,
2011
Received in revised form:
July 20,
2011
Received:
March 3,
2011
Identification
Copyright
© 2011 Jacobs Institute of Women's Health. Published by Elsevier Inc. All rights reserved.
