Gender and disability violence and HIV and AIDS

Triple discrimination against women and girls with disability

Von Muriel Mac-Seing & Dorothy Boggs

Approximately one billion people in the world live with some form of disability; the rate among women is said to be 19%. According to the Lancet (2012), the prevalence of violence against women with disabilities and children with disabilities is higher than that among their non-disabled counterparts. A recent meta-analysis on the HIV prevalence among adults with disabilities in Sub-Sahara Africa further suggests that women with disabilities are especially affected by the HIV epidemic. This article summarises the triple discrimination of women and girls with disabilities in relation to HIV and the experience of gender-based violence. As well, testimonies from the field are shared and recommendations for the way forward are suggested.

Triple discrimination against women and girls with disability

 

Roughly one billion people in the world live with some form of disability (15%); the rate among the female population is said to be 19%. (World Health Organization and World Bank, 2011). According to "Forgotten Sisters", a report on violence against women with disabilities, disabled women and girls experience numerous deeply rooted communication, attitudinal and structural barriers in accessing prevention information and services. Women and girls with a variety of impairments are subject to all forms of violence; they largely go unnoticed and their rights continue to be violated – invisibly and unaddressed at the strategic, prevention and response levels. Based on two meta-analyses published in the Lancet in 2012, the prevalence of violence against people with disabilities - irrespective of the type of impairment - is 1.3 times higher than that in the general population, 1.39 times higher among women with disabilities and 3.86 times higher among people with mental health conditions (Hughes K. et al); and among children with disabilities, the experience of violence is 3.7 times more than that of their non-disabled peers (Lisa Jones et al).  

More specifically, the following observations were made when carrying out studies on violence against people with disabilities showing a gender-based vulnerability of women in relation to their experience to violence:

    • Among women with disabilities in Cambodia, 52.5% reported emotional violence; 25.4% physical violence and 5.7% sexual violence from family members (Astbury, J. et al).
    • In Senegal, based on a seroprevalence and knowledge, attitudes and practices (KAP) study among people with disabilities (HELITE & Handicap International 2014), 9.3% of women with disabilities versus 3.4% among men with disabilities reported coerced sex during their first sexual encounter
    • In the context of disability-related care (Statistics Canada 2006) women with disabilities are at a greater risk of being abused by people and staff who provide them with care
    • Also, women with disabilities are less likely to report violence to the police (49% of men would report such incidents compared to 30% of women. (Perrault 2009)

Furthermore, among people with disabilities, those with intellectual impairments are more likely affected by different forms of violence:

  • A study (Powers Le. et al) of 200 women with intellectual and physical impairments showed that 67% had suffered from physical violence and 53% sexual violence
  • Another study undertaken in Orissa, India showed that 25% of women with intellectual impairments had been raped and 6% of women with disabilities had been sterilised (UN Enable)
  • Also, 90% of children with intellectual impairments have suffered from some form of sexual violence (D. Valenti-Hein et al)

Triple discrimination against women and girls with disabilities

Around the world, gender-based violence has a greater impact on women and girls than on men and boys – whether they are non-disabled or disabled. Its different forms can impact on health, emotional and psychological status, social aspects, communities and safety issues. For instance, the consequences of sexual violence are numerous and costly: they increase women’s morbidity and mortality (especially as they may face unwanted pregnancies); they increase risks of sexually transmitted infections and HIV, unsafe abortions, pelvic inflammatory disease, psychological trauma and mental health concerns, serious physical injuries and exclusion from family and community (UNHCR 1999). WHO (WHO 2005) reports that gender-based violence is a major global health problem predisposing women and girls to numerous negative social and health outcomes, including HIV infection. Further consequences of such sexual violence affect children, families, and also the community and society at large, as a result of stigma and marginalisation. 

Specifically it has been reported that attitudes and structural barriers due to different impairments make women more vulnerable to violence, for example (Disabled Women’s Network–DAWN 1995)

  • Reduced physical capability for self-defence
  • Greater difficulties to be understood when reporting maltreatment due to difficulties in communication
  • Lack of accessible information and counselling services, mainly due to physical and communication barriers
  • Lower self-esteem and disregard of their image as women due to ongoing discrimination
  • The misconception that women with disabilities do not have the same social roles as those traditionally assigned to other women
  • A greater degree of dependence on other people for care, particularly carers providing personal support for bathing, grooming or dressing, who can abuse a position of power
  • Fear of reporting violence as it might cause the breaking of bonds (with family and community) or the loss of a specific carer
  • Having to live in environments that favour violence, broken homes, institutions, residences and hospitals (whereby carers can exploit situations for their benefit)
  • Less credibility when reporting these attacks in certain institutions ("who would want to have sex with a women with disabilities?" being a commonly entrenched negative view)

Furthermore, based on a recent report from UNAIDS (UNAIDS 2014), the intersection between violence and HIV against women and girls is overwhelming: 1) "violence against women is a human rights violation", 2) "women are 55% more likely to be HIV-positive if they have experienced intimate partner violence", 3) "women living with HIV are more likely to be subjected to violence", 4) "women most vulnerable to HIV are also most vulnerable to violence", and 5) "violence undermines the HIV response by creating a barrier to accessing services". Based on a recent meta-analysis on the HIV prevalence among adults with disabilities in Sub-Sahara Africa (De Beaudrap P. et al 2014), data show that there is a gradient in the risk of HIV infection according to gender and disability status with a risk increasing from 1.48 for men with disabilities to 2.21 in women with disabilities when compared to non-disabled men. This view that people with disabilities are highly vulnerable to HIV and AIDS is congruent with the general recognition that marginalised, stigmatised communities with limited access to basic human rights are frequently at higher risk of HIV infection and feel the impact of HIV and AIDS more significantly (UNAIDS/OHCHR 2006).

According to Frohmader and Ortoleva (2013), the recognition of this reality variously referred to as “intersectionality,” “multidimensionality,” and “multiple forms of discrimination,” is important to any examination of the sexual and reproductive rights of women and girls with disabilities. (Frohmader, C. & Ortoleva, S. 2013) They further argue that no other group of marginalised people has ever been as "severely restricted, or negatively treated, in respect to their reproductive rights, as women with disabilities. To date, 147 countries have ratified the UN Convention on the Rights of Persons with Disabilities (article 25 on health including sexual and reproductive health/HIV), however most have failed to respect their obligations towards their disabled citizens.

Examples from the field

For many years now, Handicap International has been implementing HIV and AIDS as well as protection projects for people with disabilities in various countries in Sub-Sahara Africa. One of these projects, implemented in Senegal and financed by the Initiative 5% and in partnership with the Society of Women against AIDS in Africa, aims at addressing the HIV-related needs of women and men with disabilities within the framework of the Global Fund's mechanism. Based on field visits undertaken in 2012 and 2014 in Ziguinchor located in the Casamance region of Senegal, testimonies from women with disabilities living with HIV revealed situations of and interrelationships with disability and gender based violence. Most women with disabilities living with HIV are in monoparental and precarious situations whereby the father of their children (ranging from newborns to teenagers) is often not known and absent from their lives. In the majority of the cases, they got pregnant following unprotected and at risk sexual encounters with casual or irregular sexual partners whom they knew very little. Some women divulged that their pregnancy was a result of sexual violence and in the course of time also got infected by HIV. Additionally, a few of the women have been selling sex to make financial ends meet. These anecdotal reports have been corroborated by the recent results of a seroprevalence and KAP study undertaken in Senegal (HELITE & Handicap International 2014). Data showed the following: 9.3% of women with disabilities, 3.4% of men with disabilities experienced coerced sex during their first sexual encounter; among people with intellectual impairments, this happened in 66.7% of the time. Furthermore, 2.2% of women with disabilities sold sex.

Testimonies from women with disabilities living with HIV also shared that in the majority of cases, due to an intrinsic desire to "feel as any other women" and get their "womanhood" restored in the society, they felt they had to go through the "process of pregnancy" even if this meant unprotected and at risk sex. Often non-disabled men were abusing of their situation and vulnerability, they reported. Moreover many revealed their ignorance about their sexual and reproductive health rights as well as their social exclusion. Factors related to their gender, disability and HIV status, which was often occulted to others, were felt and lived as factors contributing to stigma and discrimination against them. In many cases, they were living dependent relationships with other family members, such as their mothers, sisters or other relatives for cooking, cleaning and taking care of their children. Due to discrimination and fear of further stigmatisation, including violence, many of these women were not sharing their HIV status, and therefore were at times inclined to not fully adhere to their therapeutic treatment putting  their own health and that of their infants at risk to keep their HIV status confidential. As a result, these behaviours can jeopardise a full prevention of mother to child transmission of HIV, as well as an AIDS-free generation which is called for by global goals. Compounded to this, many were also economically dependent on others and could not afford basic transportation to/from health facilities to get their medical follow-up. In this context, women with disabilities living with HIV have been often forgotten from mainstream HIV prevention and response programmes.

In an attempt to redress this, Handicap International is promoting integrated HIV programming to sexual and reproductive health and gender-based violence (Mac-Seing 2012) so that people with disabilities, in particular women and young women with disabilities, can have access to inclusive services protecting their sexual and reproductive health rights. Programming interventions range from policy review, disability accessibility audits, awareness on the intersection between HIV, sexual and reproductive health, gender-based violence and disability rights, life skills empowerment, capacity building of health professionals, collection of behavioural and biological evidence, good practices and lessons learned documentation and dissemination, as well as fostering strategic alliances between disabled people's organisations and AIDS- and protection-related organisations and services providers.

Ways forward to bridge gaps and remove barriers

There is an increased recognition of the importance of addressing the triple discrimination of gender and disability violence and HIV and AIDS against women and girls with disabilities. Further, “sexuality relates not only to health and reproduction, but is also interconnected with the broader notions of wellness, integration and inclusion. (Wickenden et al). Moving forward, it is important that both development and humanitarian disability-specific and mainstream initiatives bridge gaps and remove barriers to ensure the inclusion of people with disabilities, in particular women and girls with disabilities, in HIV and AIDS and gender-based violence prevention and response and sexual and reproductive health services. Concrete steps towards inclusion should be implemented in both programming and policy initiatives for more sustainable changes to decrease the triple discrimination of women and girls with disabilities.

Recent global examples, such as the Disability Networking Zone at international AIDS conferences held in South Africa in December 2013 (ICASA) and in Australia in July 2014 (IAC), and the High-Level Event on Violence against Women and Girls in Emergencies held in the UK in November 2013, have made some advocacy gains and policy commitments towards including people with disabilities. However disability-inclusive rights-based participatory actions must follow and more research is needed to explore these unique intersections. 

Nine practical recommendations

Nine practical recommendations are provided below to better ensure people with disabilities, especially women and girls with disabilities, are included at the heart of addressing this three way intersection.

1.
Guarantee equal access to education and other opportunities such as economic empowerment that decrease the isolation of women, men and children with disabilities – reducing the social exclusion that contributes to vulnerability, violence and abuse

2.
Integrate sexual and reproductive health including gender-based violence programming to HIV and AIDS services

3.
Ensure that information, education and communication materials and tools related to HIV, sexual and reproductive health are accessible to women, men and children with disabilities addressing their different communication needs (e.g. large prints, use of audiovisual, Braille, sign language, more pictures including images of persons with disabilities as well as pictograms, using less words and more simplified language);

4.
Build the capacity of all HIV prevention and response as well as multisectorial protection service providers to enable the provision of disability- and gender-sensitive information and services

5.
Directly involve persons with disabilities/their organisations, especially organisations of women and girls with disabilities in the design, implementation, monitoring and evaluation of prevention and response services

6.
Ensure that women, men and children with disabilities have access to information on their rights – particularly those who do not have access to mainstream gender-based violence and protection programming – so that they can identify, prevent and act upon a violation against them – ensuring that women and children are aware of those entitlements

7.
Develop and introduce gender and child/girl sensitive, accessible, safe and confidential reporting and complaints mechanisms for people with different types of impairments – creating the means through which to realize those rights

8.
Ensure data in monitoring and evaluation system tools are disaggregated by sex, age and disability

9. Ensure accountability of international structures, government and civil society in preventing and responding to HIV and violence based on sex, age and disability against all women and girls by enforcing the CEDAW and CRPD as well as national laws and policies prohibiting any form of violence against all women and girls, including persons with disabilities living with HIV or not living with HIV

 

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Muriel Mac-Seing & Dorothy Boggs

Muriel Mac-Seing is HIV and AIDS / Protection Technical Advisor at Handicap International. Contact: muriel.mac-seing@handicap-international.ca

Dorothy Boggs is part of the Knowledge Management Unit, Handicap International. Contact: dorothy.boggs@hi-uk.org