LIVING POSITIVELY: NARRATIVES OF FORGIVENESS AND IMAGINATION AMONG WOMEN WITH HIV

Hamaseh Kianfar, Ed. D.

Part One

The global HIV/AIDS epidemic is an unprecedented crisis that requires an unprecedented response. In particular it requires solidarity — between the healthy and the sick, between rich and poor, and above all, between richer and poorer nations. We have 30 million orphans already. How many more do we have to get, to wake up?

Kofi Annan, Former United Nations Secretary General, 2008.

On May 4, 2009 the United States Department of Health and Human Services, published a report stating that, “one in four Americans living with HIV [humanimmunodeficiency virus] are women, and African American women are the most affected. In addition, HIV/AIDS is the leading cause of death for African American women aged 25 to 34” (U.S Department of Health & Human Services 2008).[1] It is important to develop a profile of care that increases our understanding of the unique sociological and cultural factors that affect women living with HIV. Furthermore, we should promote understanding and compassion for the experiences and lives of the other.[2]

The focus of my research is to explore the challenge, successes and lives of selected women who have HIV and live in the Bay Area. I have included narratives that illustrate the challenges and prejudices facing many of these women. I am hoping to show that through honoring and remembering their past and present cultural and social experiences, these women have created an identity of hope and a newly imagined future; I am optimistic that their example will provide hope to others.

I have worked as a medical case manager with HIV-positive women for few years, I have always been interested in what the major barriers are that keep HIV-positive women from receiving and maintaining medical care, what role social support has played in helping foster hope and what role stigma has played in the lives of these women. This research will answer some of these questions, as well as it will provide the reader with a better understanding of what lesson HIV-positive women have offered young people about ways to protect themselves against HIV. Through the process of conversation with HIV positive women, I hope to challenge existing assumptions, values and prejudices about what it means to be a woman living with HIV and to encourage programs and public policies to reflect the voices and needs of these women.

As individuals, we have our own history, traditions and prejudices that are intimately connected to who we are.

Every culture develops its own ways of prejudice and discriminations. We tend to develop negative attitude towards ‘others’ simply because they are members of group we disapprove or simply dislike; and then we adopt certain behaviors based on our presumptions of others. Such presumptions may influence our communities and gradually our discriminative behavior and prejudice become norm, accepted by our communities, groups, nations and so forth. Being accepted by the community will influence our judgments, social norm will encourage our behavior, and our tendency towards conformity plays important role in our prejudice.

Amongst many of our cultural and social stigmas is HIV-related stigma, a suitable ground for discrimination and prejudice. For example “In 35% of countries with available data, over 50% of men and women report having discriminatory attitudes towards people living with HIV.”[3] “Some people are shunned by family, peers and the wider community, while others face poor treatment in healthcare and educational settings, erosion of their rights, and psychological damage. These all limit access to HIV testing, treatment and other HIV services.”[4] “The People Living with HIV Stigma Index indicates that roughly one in every eight people living with HIV is being denied health services because of stigma and discrimination.”[5]

Averting HIV and Aids[6] (2016) reports that: The fear surrounding the emerging HIV epidemic in the 1980s largely persists today […] and a research by the International Centre for Research on Women found the possible consequences of HIV-related stigma to be: loss of income and livelihood; loss of marriage and childbearing options; poor care within the health sector; withdrawal of caregiving in the home; loss of hope and feelings of worthlessness; loss of reputation.[7] One of most damaging stigmas is self-stigma that has: “… damaging effect on the mental wellbeing of people living with HIV. This fear of discrimination breaks down confidence to seek help and medical care.”[8]

Women with HIV/AIDS may suffer greater shame, embarrassment, and humiliation than men. “…Shame, blame, and stigma against women with HIV are major obstacles to prevention and treatment of HIV/AIDS. Stigma leads to the marginalization and exclusion of individuals and may exist in many forms, such as societal stigma and self-stigma. When it comes to HIV/AIDS, there are several additional factors that contribute to stigma… [and sometimes] there are people who blame infected individuals for contracting HIV/AIDS, believing that the disease is the result of a moral weakness…”[9]

So how may we learn from the challenges, successes and lives of women (selected women who live in Bay area, in this study) who live with HIV positive, yet through forgiveness, imagination, sharing their stories, honoring and remembering their past and present cultural and social experiences, they have created an identity of hope and a newly imagined future; I am optimistic that their example will provide hope to others.

As individuals, we have our own history, traditions and prejudices that are intimately connected to who we are. These cultural images and lenses allow us to know ourselves and interpret the way in which we see others. However, it is through the process of dialogue and language with the other that one has the opportunity to imagine a new way, to experience one’s self as well as others. Language, dialogue and the development of new understanding can help challenge our own existing assumptions and values. Such understandings can also provide an opportunity to think differently about changes in our communities. As members of a socially responsible society, we must continually challenge ourselves to rethink the way we see and act towards others.

If societies are oriented towards understanding the struggles and challenges facing HIV-positive women, models of care and public policies can begin to acknowledge these struggles.

[1] Centers for Disease Control and Prevention (http://www.cdc.gov/hiv/) 2015, reports more than 1.2 million people in the United States are living with HIV infection, and almost 1 in 8 (12.8%) are unaware of their infection. By race: blacks/African Americans face the most severe burden of HIV. In 2016, on HIV Among Women, Center for Disease Control and Prevention reports that: Around 1 in 4 people living with HIV in the United States are women. Most new HIV diagnoses in women are attributed to heterosexual sex. Between 2005 and 2014, the number of new HIV diagnoses among women declined 40%. UNAIDES 2016 reports that 36.7 million [34.0 million–39.8 million] people globally were living with HIV; 2.1 million [1.8 million–2.4 million] people became newly infected with HIV.

[2] UNAIDS: Leaving no one behind: ending stigma and discrimination through social justice and inclusive societies, includes that: The AIDS epidemic will not be ended without efforts to end discrimination, respond to exclusion and advance social justice, according to a panel meeting held on 9 June during the United Nations General Assembly High-Level Meeting on Ending AIDS, taking place in New York, United States of America, from 8 to 10 June, 2016.

[3] UNAIDS (2015) ‘On the Fast-Track to end AIDS by 2030: Focus on location and population’

[4] Stangl, A.L. et al (2013) ‘A systematic review of interventions to reduce HIV-related stigma and discrimination from 2002 to 2013: how far have we come?’ JIAS 16(Supplement 2):18734. Katz, I.T. et al (2013) ‘Impact of HIV-related stigma on treatment adherence: systematic review and meta-synthesis’ JIAS 16(Supplement 2):18640

[5] UNAIDS (2015) ‘On the Fast-Track to end AIDS by 2030: Focus on location and population’

[6] http://www.avert.org/professionals/hiv-social-issues/stigma-discrimination#footnote13_88b4ck5

[7] International Center for Research on Women (ICRW() (2005) ‘HIV-related stigma across contexts: common at its core’

[8] Egyptian Anti-Stigma Forum (2012) ‘COMBATING HIV/AIDS RELATED STIGMA IN EGYPT: Situation Analysis and Advocacy Recommendations’

[9] “Pervasive Stigma Surrounds Women Living with HIV/AIDS,” Huffpost Healthy Living, 2011.

2016-10-28T12:55:30+00:00