by Susie Grimes, Graduate Student, Department of International Studies
In 2002 I was in Lusaka, Zambia, making a video documentary on a microcredit program for women with disabilities. We were at the marketplace to meet members of a sewing group that had received a small loan from the program. One of its members came forward and told us some startling news: out of the original twelve women with disabilities who had formed the collective a year earlier, only four were left. The others had died of Acquired Immune Deficiency Syndrome (AIDS).
Until that moment, the profound global impact of AIDS had not registered with me. I was shocked that such a high percentage of this group had perished from AIDS and was unaware that disabled women were so vulnerable to the epidemic. Within a few years of that trip, the remaining four sewing group members would all die from AIDS.
As I began to digest the devastating loss of the Lusaka sewing group, I started to develop questions about the particular vulnerability disabled women in Africa face when it comes to HIV and AIDS. Nine years later I returned to further explore my questions through graduate research in the Department of International Studies.
My study focuses on HIV risk factors and AIDS service programming at the intersection of gender, disability, and HIV in Zimbabwe. My findings examine the unique challenges that a woman with a disability faces in Zimbabwe and how they are amplified when she is HIV positive. It also investigates specific barriers to HIV information and services and suggests how they can be minimized.
Many questions remain about how to understand, interpret, and improve conditions for disabled women in Zimbabwe. Throughout my thesis I use cultural narratives that depict typical views about disability in Zimbabwe: sometimes the result of a curse or a punishment, but a vessel for good fortune for others. These beliefs stigmatize and subjugate disabled women. They are also used as explanations for disability in the absence of medical information. When combined with gendered cultural narratives of subservience and disempowerment, these cultural narratives about disability perpetuate the violence and silencing of disabled women in this context.
According to the World Health Organization, people with disabilities total roughly a billion people—more than 15 percent of the world’s population—the majority living in low-income countries. Research has shown that women are disproportionately impacted by HIV in sub-Saharan Africa, though few studies have investigated how women with disabilities are affected.
Zimbabwe has the world’s fifth highest HIV prevalence rate, but political and economic circumstances have significantly affected the country’s response to the epidemic. In 2010, Zimbabwe was ranked last—169th out of 169 on the United Nation’s Human Development Index and Gender Inequality Index. The rankings indicate the severity of recent political and economic events on the people of Zimbabwe and their impacts on women.
In January 2011 I went to Bulawayo, Zimbabwe, where I had arranged to collaborate with three colleagues, all women with disabilities from the area, whom I had met in my work with international disability groups. With the assistance of these women, I completed 106 interviews in three provinces of Zimbabwe, Midlands, and Matabeleland North and Matabeleland South and in the two provincial cities of Bulawayo and Harare. Fifty interviewees were women with disabilities, and almost half disclosed their positive HIV status. Interviewees’ disabilities included physical, sensory (hearing and sight), albinism, stroke, polio, asthma, and diabetes. Forty-four interviewees were staff from a cross-section of non-governmental and grassroots organizations that provide direct services to people living with HIV, programs for people with disabilities and for women.
Two issues that disabled interviewees identified as major HIV-risk factors were stigmatization of women with disabilities and sexual abuse. Stigmatization, an ingrained cultural attitude towards disabled people in Zimbabwe and much of African society, is a factor that cannot be underestimated. Stigmatization affects disabled women’s interaction with society on all levels—from family dynamics and interpersonal relationships, to sexuality, motherhood, employment, and participation in HIV services and programs.
Disabled women in Zimbabwe are frequently subjected to sexual abuse. Widespread “virgin cleansing” and “albino cure” myths hold that having sex with disabled women, who are thought to be non-sexual, will cure an HIV-infected man. The belief makes disabled women in Zimbabwe vulnerable to rape and HIV transmission. Because of their low social status, disabled women are also subject to rape by spouses and family members and to sexual coercion.
Interviews with staff from thirty-two organizations confirmed a lack of disability inclusion in AIDS programming and service provision in the geographic areas of my study. The lack of outreach and accommodation for disabled people follows a global trend in other parts of the world where people with disabilities are marginalized.
My findings substantiate a void in HIV information dissemination among disabled women in Zimbabwe. Approximately 30 percent said they had never received any HIV prevention or treatment information. In the four rural areas of my study nearly half of the disabled women I interviewed said they received informal information about HIV from other people.
AIDS service providers and professionals in Zimbabwe readily admit that women with disabilities are at increased risk for HIV due to physical and communication barriers and reproduced social stigma in clinical settings. They also referred to a lack of access to prevention information, especially in rural settings.
The future requires new approaches and creative solutions. Disability issues must become part of every international development organization’s mission and integrated into their strategic plans, much like gender is now mainstreamed in development interventions.
International development organizations need to find ways to create and support enabling environments for people with disabilities so that they may also benefit from development interventions and achieve their full human potential. Governments, policy makers and donors must summon the will to support AIDS service organizations to incorporate disability programming in order to reduce HIV infection for all people at risk. My hope is that the findings and analysis from this study of HIV/AIDS and women with disabilities in Zimbabwe will help to encourage discourse and policy, funding and programming efforts toward improving health, well-being and access to HIV prevention and treatment services for people with disabilities worldwide.
-Susie Grimes received a 2010 CSWS Graduate Research Grant Award in support of her research on this topic. She is completing her master’s degree in international studies while working as an international development consultant, focusing on disability inclusion. In addition to the CSWS research grant, she received a SYLFF fellowship (OUS system) and a Slape research award from the Department of International Studies.