Pranee Liamputtong (ed.)Women, Motherhood and Living with HIV/AIDS2013A Cross-Cultural Perspective10.1007/978-94-007-5887-2_13© Springer Science+Business Media Dordrecht 2013
13. HIV Is My “Best” Problem: Living with Racism, HIV and Interpersonal Violence
(1)
249 Citadel PT NW, Calgary, AB, T3G 5L2, Canada
(2)
Department of Community Health Sciences, Faculty of Medicine, University of Calgary Institute for Gender Research, 3330 Hospital Drive NW, Calgary, AB, T2N 4N1, Canada
(3)
Department of Ecosystems and Public Health, Faculty of Veterinary Medicine, University of Calgary Institute for Gender Research, 3330 Hospital Drive NW, Calgary, AB, T2N 4N1, Canada
Abstract
Gender-based violence is a problem for women around the world. Although HIV/AIDS and interpersonal violence (IPV) have been studied extensively as separate entities, the connection between the two has received less attention than might be warranted. We argue that studying HIV/AIDS and IPV as intersecting issues is essential in understanding women’s experiences of either or both, and the results have implications for health policy. Through telling her story of living with HIV and IPV, an Aboriginal woman reveals a life where gender-based violence took place in the context of a history of colonialism and marginalization of her people. HIV was a much easier issue to discuss than the violence she had experienced in her life. Using a socioecological framework to interpret her story revealed that relationships with her children were just one casualty of intersecting oppressions. Services tended to treat either HIV or IPV but never to see her as whole person. The experience of surviving HIV/AIDS and IPV on a day-to-day basis negatively impacted her life and created a cycle of abuse, including self-abuse, which was difficult to escape. The results demonstrate the intertwined relationships of HIV/AIDS and IPV and factors at the personal, interpersonal, community and environmental levels that impact this relationship. The value of culturally safe approaches to care for HIV/AIDS is highlighted in this chapter.
1 Introduction
We began our study with the belief that understanding women’s experiences of HIV/AIDs and gender-based violence could only be accomplished within a socioecological framework that acknowledged structural forces that shape women’s lives (Thurston and Vissandjée 2005; Navarro et al. 2006). In this context, the environment includes economic, social, institutional and cultural elements that affect an individual and in turn will affect the community’s well-being (Green et al. 1996; Thurston and Vissandjée 2005). We used critical feminist perspectives and critical theory in general, standpoint epistemologies and gender and power perspectives (Wingood and DiClemente 1997; Smith 1999; Gupta 2000; see also Chap. 1 in this volume) to further shape our project.
These theoretical foundations help in understanding the societal basis of HIV/AIDS and IPV as global concerns. The way women are exposed to these two issues does not occur randomly but rather follows the already established social forces of power inequality, gender role inequality and cultural expectations that shape how women are treated by their male counterparts. From the perspective of feminist standpoint epistemology, it is necessary to provide women with an environment without pressures from men because men have traditionally determined what women’s needs are and how they are interpreted. Smith (1999) states that women-to-women talk might be more productive in understanding women’s personal experiences.
We also brought our personal histories to the project. As a young woman, mother, nurse, midwife, educator and researcher, Josephine Mazonde lived in the developing world during the inception of HIV in the early 1980s. Like many people, she had a choice whether or not to turn a blind eye to what the world was facing – this mysterious disease no one understood at the time. But, she did not turn her back to it, and as a young nurse working in rural areas of Botswana, she started with very basic strategies of prevention. When visiting traditional doctors and churches, she targeted the young people with prevention education, drawing in parents, until the whole community saw the need for collaborative action. The struggle against HIV continued in all areas of the country and there came a time when the government, chiefs and other leaders realized the need to aggressively attack the “monster.” Josephine extended her work on a voluntary basis, working nights, weekends and holidays, reaching out to schools, churches, prisons, district multidisciplinary committees and later at a national level through Knowledge, Innovation and Training Shall Overcome AIDS (KITSO).
Before becoming an academic researcher, Wilfreda Thurston was involved in starting a sexual assault centre and later a shelter for women fleeing domestic violence. She was director of the shelter before going back to complete a doctorate in health promotion for women. In studying women’s health, she made the connection between HIV and violence against women, recalling how little had been known about this in the shelter. Her research has continued to examine how the health system does or does not act to prevent violence against women. She has also focused on gender as a determinant of women’s health and the promotion of Aboriginal women’s health.
Despite our backgrounds, neither of us was entirely prepared for the stories about the depth of strength required to survive the intersections of HIV/AIDS and IPV in a wealthy western city.
2 Background
2.1 Women and HIV/AIDS
The prevalence of HIV in Canada increased from 52,000 in 2002 to 58,000 in 2007; more women are being diagnosed with HIV and AIDS and they now represent about 20% of all Canadians infected with HIV. Generally, groups that are at high risk include men who have sex with other men, intravenous drug users, Aboriginal people and people from countries where HIV is endemic (Public Health Agency of Canada 2006).
The medical approach to HIV/AIDS management has instigated strategies that serve medical personnel well but pay minimal attention to social, economic and political conditions. This approach currently excludes information about how those infected and affected understand their experiences around HIV and AIDS. People living with HIV/AIDS have diverse experiences based on factors such as gender, ethnicity, socioeconomic status and government policies, as well as the attitudes of individual care providers. This diversity of experience results in the isolation of certain groups of people, including women, especially women from minority populations; intravenous drug users; and sex trade workers. The result is perpetual stigma and marginalization of such groups and fear of being identified with the condition (Committee on HIV Prevention Strategies 2001; Krishnatray et al. 2006).
Research has shown that women’s bodies, specifically the receptive mucosal membrane in the genital tract, make it easier for women than men to contract HIV (Kathewera-Banda et al. 2005). Moreover, studies have also shown a difference in vulnerability across a woman’s reproductive life. Quinn and Overbaugh (2005) point out that adolescent girls are more vulnerable than mature women, either because their immature genital tract exposes them to irritations and tears or because of their behavioral high-risk activities. Biological changes, such as high levels of progesterone in pregnancy and those created with the use of hormonal contraceptives, also affect risk. Progesterone is seen to enhance susceptibility to HIV, interfering with the immune response to infection. Another vulnerability is linked to gender norms and beliefs around sex, sexuality, sexual risk-taking and fidelity (Quinn and Overbaugh 2005).
How people define a disease will influence its management. The original perception of how HIV/AIDS spread and its medical description directed an approach to management that followed the medical model of diagnosis and treatment. This approach conflicts with some cultures, gender roles and political support. Kleinman et al. (2006: 144) suggest the “cultural construction of clinical reality” which encompasses the interplay of biological, psychological and sociocultural aspects of illness as a more culturally inclusive model of managing illnesses. Brach and Fraser (2000) refer to this kind of approach as based in cultural competency, which they consider a factor that would reduce racial and ethnic health disparities. They suggest that this approach goes beyond knowledge of cultural diversity to the acquisition by care providers of skills in dealing with culturally diverse populations.
A culturally competent approach would recognize gender and the fact that women’s vulnerability to HIV/AIDS is rooted in almost every aspect of life across the range of health determinants, from their biological make-up to economic, social and political conditions (Kathewera-Banda et al. 2005). Low education among women continues to fuel their vulnerability to HIV; education would improve their access to information, the labour force and increased self-esteem that would help them rise above the poverty line. Also, a gap in knowledge perpetuating the ignorance and stigma around HIV/AIDS is created by the lack of inclusive care services where HIV/AIDS is an integral part of every service provided to women.
The community expects certain roles of women, especially the caregiver role (Lewis 2006; UNAIDS 2006). Women diagnosed with HIV/AIDS face different challenges than men. For most, they do not only have to take care of themselves but also provide care and attention to others who need and expect it. Further, they often do not have others to take care of them, which add more burdens to their physical, social, emotional and economic situations. The pressures from their multiple roles isolate women from social activities and adversely affect their self-care. Stress further weakens their immune systems and adds to quick diagnoses and stigma. Women are also exposed to further risk of infection by forced sex from their partners as well as other forms of abuse, hence the greater incidence of HIV/AIDS among women than men for a long period of time. Moreover, violence or the fear of violence has been identified as interfering with women seeking HIV/AIDS information, voluntary testing and counselling (Goldstein and Manlowe 1997), further compounding the spread of HIV. Moreno (2007), in her study with Latina women, outlined how HIV and IPV share risk factors that impact both HIV prevention and management. She related IPV and HIV to childhood trauma, such as sexual, physical and verbal abuse. This in turn affects women’s ways of dealing with relational issues as it affects their trust, lowers their sense of self-worth and also results in self-blame.
Women’s combined experiences of abuse and surviving HIV may impact their parenting skills and activities because of the physical, emotional and psychological trauma they experience. Ultimately, the children may also display signs of distress that then exacerbate the woman’s stress, resulting in cycle of trauma for everyone (Jaffe et al. 1990; Levendosky and Graham-Bermann 2000). Mothers experiencing both HIV and IPV, however, continue to express a need to live for their children; the distresses of HIV and IPV become secondary to this goal (Wilson 2007).
2.2 Interpersonal and Domestic Violence
The World Health Organization and other international agencies have recognized violence against women as a global human rights issue (UNAIDS 2004). IPV also affects men, but the rates differ greatly (Trainor 2002). According to Piot (1999), IPV causes more deaths than other recognized epidemics such as malaria, cancer, road traffic incidents and war. Piot further states that in the United States, a woman is assaulted by her spouse at least every 15 s, and in India about 45% of men abuse their female partners. In other parts of the world, women are used sexually for ritual cleansing. Sexual abuse of women is also seen as a weapon of war and as a sign of masculinity for men (Dunckle et al. 2004).
IPV is related to sexual and power imbalances between women and men. Johnson and Ferraro (2000) describe contexts of violence, issues of power used by men to control women and the social effects of violence against women. They suggest that IPV revolves around political, social, economic, cultural and gender issues. The social aspects of IPV have many implications in women’s lives, relating to economics, politics, health, justice, education, employment and human rights. Considering that 25–54% of adult females will experience IPV in their lifetime (Bonomi et al. 2006), IPV presents a challenge to women’s health and well-being. Bonomi and colleagues contend that IPV exposes women to physical, mental and psychosocial issues relative to the intensity and duration of the abuse. They further state that lack of data on long-term effects of IPV has inversely affected screening and intervention measures by care providers.
With reference to human rights, Wagman (2008) suggests that IPV not only undermines women’s rights to fundamental freedom but also increases their risk to HIV and other sexually transmitted infections (STIs) and reduces quality of life. Research conducted in South Africa revealed that experience of violence and controlling behavior from male partners was strongly related to the increased risk of HIV infection among women (Dunckle et al. 2004). According to Human Rights Watch, rape and sexual assault within marriage is not uncommon and husbands may physically force wives to have sex against their will even where there is a possibility of HIV infection (Schleifer 2004). The threat of violence often results in women deferring decisions about sexual practises to their male partners, such as the use of male or female condoms which the men often reject. For women who experience IPV, low self-esteem, substance abuse and low power to initiate condom use lead to unprotected sex and are factors that make them vulnerable to HIV infection (Beadnell et al. 2000). A study conducted in South Africa among pregnant women revealed the link between IPV and increased risk factors for HIV, including having multiple sex partners, alcohol use and engaging in unprotected sex (Dunckle et al. 2003).
While IPV can result in HIV infection, research has also revealed that IPV can be a consequence of HIV (Medley et al. 2004). For example, in studies of American women’s experiences of HIV disclosure, Gielen et al. (1997, 2000) variously found that 18% of women living with HIV reported disclosure-related violence, 4% reported physical abuse after disclosure and 45% reported emotional, physical or sexual abuse following their diagnosis.
3 Janey’s Story
Our first hint that getting at the intersections in experiences of HIV/AIDS and IPV in women’s lives would be a challenge was the difficulty in recruiting participants to our study. Through our many recruitment efforts, we encountered Janey (a pseudonym) who agreed to participate and met with Josephine several times to tell her story. Janey was between 30 and 35, unemployed, involved in the sex trade, had about a high school education, used street drugs and did not have a permanent address. She was proud of her Aboriginal1 identity. She is identified as a lesbian. She had been HIV positive for about 10 years when telling her story and had experienced IPV.
Janey was a talented writer who used her writing as a way of letting her voice be heard by the world. Most of her writing showed signs of rage towards the unfair treatment and injustice inflicted by colonizers, who took advantage of Aboriginal peoples, abused the women and children and took a precious resource, the land. She was very aware of systemic discrimination against Aboriginal people and believed her experiences with abuse, drug use and the sex trade were all rooted in her childhood experiences, mostly in boarding schools and group homes. Research in Canada supports her beliefs. Kirmayer et al. (2009: 27), for instance, indicated that the damage done to Aboriginal peoples by the residential school system that operated up to the 1960s has been extensive, as is the “ongoing effects of a chaotic and constricted present and murky future.” A national Truth and Reconciliation Commission was established in Canada after the June 2008 apology from the Prime Minister in the House of Commons to former students, their families and communities (Truth and Reconciliation Commission of Canada 2011).
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