‘We have no power over perceptions’: the lived experiences of women with disabilities in a rural South African community

Abstract

This Current Issue chronicles the narratives of women living with disabilities in a rural community in South Africa. The emerging insights demonstrate that women with disabilities are trapped in perceptions that give rise to hierarchies of invisibility. To shift them from invisibility to visibility, this article acknowledges the intersectionality of gender, culture and disability. It is deemed suitable for policy makers to create platforms for the voices of women with disabilities to be heard so as to ensure systemic change.

Keywords:

• rural women
• hierarchies of invisibility
• lived experiences
• intersectionality discourse
• disability

Introduction

Observations reveal that people living with disabilities are still excluded from community activities in South Africa, and this leads to their invisibility in public life (Ngubane-Mokiwa 2018). This prompts a seminal question: why are people with disabilities still excluded in a country with a proliferation of laws that promote and protect their rights? This Current Issue postulates that national laws alone are not sufficient when underlying myths that fuel stigma against people living with disabilities are not explored. Often, the stigma begins with failure to celebrate the birth of a child born with a disability (Popplestone 2009). A child’s disability is equated to imperfections and is viewed as God’s wrath for the sins of parents, particularly the mother (Sait et al. 2009). In addition, studies in South Africa point to the infantilisation of those who are intellectually disabled. They are treated like children who are not afforded the dignity, respect, and rights that all persons deserve (Capri and Swartz 2018). Moreover, research ethics in South African Higher Education safeguard people living with disabilities by classifying them as a homogenously vulnerable group to be protected from researchers. This dissuades researchers from engaging them in research processes (Nuwagaba and Rule 2015). Also, marrying a disabled woman is unthinkable in some South African communities (Ngubane-Mokiwa 2018). While the majority of people withdisabilities are generally marginalised among non-disabled bodies, women with disabilities are disproportionately affected (Popplestone 2009). The voices of women with disabilities are often ignored, trivialised and silenced in mainstream society.

This Current Issue reflects on a personal journey with members of a community organisation that works with people living with disabilities in the province of KwaZulu-Natal, South Africa. The organisation aims to eradicate poverty and all forms of exclusion and discrimination against people with disabilities. The organisation was established on 14 April 1992 and currently consists of 47 members with different disabilities, but shared interests and values. Due to their own marginalisation within communities and families, organisational members are championing the change they want to see in society with financial and infrastructural support from the National Department of Social Development. They are involved in carpentry, craftwork and food gardens for income-generation since the organisation is located in a low-income community with limited job opportunities. The COVID-19 pandemic exacerbates the problem of poverty and unemployment and people living with disabilities in rural communities are severely affected.

The next section recounts the narratives of women who participated in the study. The central premise demonstrates how disability intersects with gender and culture to keep women with disabilities in rural areas trapped in a vicious cycle of disadvantage and invisibility.

I was granted permission to conduct the study on condition that the organisation is not named to ensure anonymity. In addition, the University of KwaZulu-Natal’s Research Office conferred ethical clearance. Community members who participated in the study signed informed consent forms giving permission for their words to be published for research purposes.

Insights from women living with disabilities

Hierarchies of marginalisation lead to hierarchies of invisibility

In the community where members operate, blindness is considered the worst form of disability and women who are blind suffer more from stigma and discrimination. One of the blind women expressed:

…if you meet a blind man, he would want to ascertain the cause of your blindness. The belief that your offspring (sic) will also be blind if the cause of your blindness is glaucoma is quite common.

While both the woman and her male partner are blind in this case, the gendering of disability only questions femininity through questions relating to a blind woman’s capacity to birth an able-bodied child. This assertion views glaucoma and intergenerational transmission to exacerbate blaming discourses of motherhood on women with disabilities. The man still has claim to the patriarchal dividend and can be assumed to be blameless in transmitting blindness. Such narratives entrench stigma and discrimination against women living with blindness and this leads to their invisibility.

Likewise, another woman voiced what she was told in a public space:

For you to be born disabled, your mother must have been using contraceptives at a young age or she might have a history of abortion.

Misogyny is rife in such utterances, relegating mothers of children with disabilities to a life of shame and guilt. While no one is to blame for a child being born disabled, it is common to apportion blame to the woman. These assertions resonate with Sait et al.’s (2009) observation that women are often blamed for giving birth to children with physical impairments. Thus, while all women are oppressed, women with disabilities are more oppressed since they are ‘disabled’ and they happen to be ‘women’; this deepens their invisibility in some communities.

Misinterpretation of biblical scriptures perpetuate stigma

Experiences of marginalisation are also observed in the way in which local churches construct people with disabilities as in need of divine intervention. One participant lamented:

When ministers in Pentecostal churches see us, they see an opportunity to exercise faith healing. They would want to lay hands on you to make you whole.

These unfounded claims are used to validate the truthfulness of biblical scripture, however they perpetuate stigma and discrimination. No matter how people with disabilities want to perceive themselves as normal, societal discourses on what is considered normalcy will denigrate them as second-class citizens. Generally, many able-bodied people lack experience in engaging meaningfully with people with disabilities since they are still absent from the public eye. It is for this reason that members of the organisation have chosen to work alone in their community, as they find it difficult to work with non-disabled people who judge them.

They operate between two worlds - a world of contradictions with oppressive discourses in the broader community and life-affirming spaces that they have created within the organisation. Their narratives offer glimpses of liberatory and self-defining possibilities and new forms of social organisation.

Disabled women are regarded as children who are asexual

It was also established that disabled people are considered asexual with no sexual feelings for the opposite sex. One woman asserted that, while in a community event to commemorate World AIDS Day on 1 December 2019, she was seen picking up a free box of condoms and an able-bodied stranger asked, ‘what do you need condoms for?’ One woman corroborated this by revealing that, ‘when I fell pregnant, my private life was invaded in public spaces with strangers asking, “who impregnated you?”’ Such narratives reveal that women with disabilities are not afforded the same privacy and respect that is extended to non-disabled people. Sexually active women who live with disabilities are stigmatised and treated with suspicion. In their personal lives, the public-private domains are blurred with their private lives shifted to the public sphere against their will. They inevitably lose autonomy over their bodies and their sense of agency to set boundaries is evaded. The questions asked not only invade a disabled woman’s privacy, but entrench stereotypes that the woman has either been raped, or there is something incredibly wrong with the man who had sex with her.

There are government subsidy houses built for people from low-income families. A group of women indicated that while disabled men always qualify and benefit from such housing schemes, there were not aware of any woman with a disability who has been afforded this benefit in their community. One of the women affirmed this:

A disabled woman does not qualify for the government’s housing subsidy in our community. There would be roughly two women with disabilities out of 100 people annually who qualify for housing, and blind women are not among them.

This assertion is based on false assumptions that women living with disabilities cannot manage a household independently and this reiterates the infantilisation of women who live with disabilities. In all cases of women with disabilities not qualifying for housing, it is not their perspectives that are problematic, rather the perspective underpinning the policy. Similarly, it also emerged that women are treated as subhuman beings when they enter into marriage. One participant mentioned:

When a woman with a disability gets married in our community, a family of the bride arranges a non-disabled woman to accompany her so as to be the “real” wife to the man by fulfilling the traditional duties of a wife such as household chores and sex.

While polygamous marriages are a norm in the social life of many rural communities in South Africa, the fact that it is the family of the woman with a disability who would handpick an able-bodied spouse to fulfill the role of a second wife, reinforces the infantilisation of women with disabilities. Patriarchal attitudes fuel such practices since women living with disabilities are policed in a manner that their male counterparts are not. The prevailing culture compels women to view disability as their fault that they should accommodate. However, it is encouraging that the culture of courting a second wife as a marriage assistant to a disabled woman is reported to be in decline in recent years. When asked to express their views regarding this matter, the women who participated in the study stated that, ‘we have no power over perceptions!’

Conclusion

This Current Issue presents prevailing assumptions in a rural South African community that exclude women living with disabilities from a normal and equitable life. It is observed that marginalisation of women with disabilities is more pronounced in rural areas where they face multilayered oppression as a result of gender, culture and disability. They are subjected to dangerous cultural practices in rural contexts that keep them invisible in public life. The central premise in this Current Issue is that while women in the world are still subjected to patriarchy, women with disabilities in rural areas are more oppressed due to the intersectionality of gender, disability and culture. To shift from invisibility to visibility, women with disabilities ought to be visible in policy making processes, public discourse and popular media.

Acknowledgements

Special thanks go to the members of the community organisation for sharing invaluable insights. The author would also like to thank all reviewers for taking the time and effort necessary to review the manuscript. All valuable comments are sincerely appreciated.

Disclosure statement

No potential conflict of interest was reported by the author.