Women with disabilities pay the piper! But who calls the tunes?

Posted on September 7, 2011

In South Africa, with its history of colonial conquest and racial tyranny and ethnic inequalities, paucity and disability are intertwined in complex configurations that are difficult to unravel. Within the context of changing policies and attempts to redress the injustices of the past, understanding the complex relationship between disability, gender and race are spirited for advancing the cause of emancipating women from the shackles of being lesser mortals to the more opportune pedestal of equal participants in discourses that are aimed at championing a just society. Unfortunately, for now women with disabilities pay the piper...

If one approaches a South African in the streets of Gugulethu, Soweto or Polokwane, and queried him or her overtone to the perception of 'race', the retorts one would gather would be opulent, layered and heavily imbued with personal and political signification. The agonizing heirloom of institutional racial discrimination shared by all South Africans, and the incredible emergence of our nation from decades of conflict, has left an awareness of the oppressive appropriation of the race paradigm indelibly etched on the national psyche.

Similarly, though more latterly, an awareness of gender as a potentially despotic marker of differentness has grown amongst the South African populace, not least as an upshot of anti-sexist legislation being enshrined in the new Constitution of 1996. An antiquity tainted by the systematic and brutal marginalization of the majority of South Africans has left us cognisant of what it means to have one's distinctiveness and one's self devaluated or vetoed.

It is in the stir of this sweeping imperative towards recognition of our racial past that we, as South Africans, begin to explore and interrogate further markers of difference, which carry their own weight of discrimination. The idea of 'oppression' is steadfastly attached within South African colloquial culture to the idea of race; however, the marker of disability is yet to achieve this status.

'Popular Sunday Times columnist and journalist Gwen Gill died on Wednesday night (24 August 2011), Eyewitness News reported. She was well-known for her Social Scene column in the Sunday Times where she has been Editorial Secretary since 1971. Gill interviewed and socialized with some of the world's most famous, including members of the royal family, Oscar winners, celebrities and religious icons,' read an abrupt statement to this hero who's resume is too numerous to tell.

May the Soul of this South African Daughter of print media rest in piece and pens-down down in her memory. It is however disconcerting to memo that in Gwen's sunset days, those who observed her waning celebrity status, invited her to all the pomp and ceremony occasions in order to parade her new-found disposition, take fake-meaning photographs and leave her to the destitute of oblivion: she was in a wheelchair.

Before proceeding, however, it is necessary to establish how the term ‘disability' is used to distinguish between disabilities and impairments. I propose to locate disability within the context of the social model, which sees disability mainly as a socially created problem rather than as an attributive of individuals. This approach is particularly helpful in focusing our attention on those aspects of disability that emphasize the commonality of disability with other forms of social disadvantage and marginalization such as poverty, race and gender.

Albert, McBride and Seddon (Perspectives on disability, poverty & technology, 2002) draw attention to these commonalities when they define disability as:

A complex system of social restrictions imposed on people with impairments by a highly discriminatory society. Disability, therefore, is a concept distinct from any particular medical condition. It is a social construct that varies across culture and through time, in the same way as, for example, gender, class or caste... In this case, disability as a policy issue becomes a cross-cutting social one, rather than something primarily associated with health and individual well-being.

When confronted with the notion of 'disability' our minds do not turn intrinsically to an exploration of possible modes of systematic discrimination and disadvantage. Rather, we remain strongly attached to modes of attribution which prize the explanatory system of the body, in accounting for the inequalities we grasp. In short, the story of disability - in our country as well as any other - is a story of social and by a very huge margin, oppression.

This input aims to firmly establish this attributive link, within a uniquely South African context. Disabled persons are, collectively amongst the nation's poorest, even within a country characterised broadly by atrocious levels of economic inequality. By exploring the predicaments of people with disabilities, we would be making an initial step in the forging of attributive links between modes of discrimination and unnecessary, systematic exclusion, and the economically and socially marginal destinies of the majority of disabled South Africans.

Nothing short of a miracle would deter the perpetual exploitation that women who are in the arts and culture industries experience in the hands of producers, agents, editors et al. The wailing cries of these marginalized grouping are only once-off headed in boardroom confines when political and or economic expediential fruit are contemplated. Much as the Ministry of Arts and Culture is intervening to arrest this fraught situation, I suggest that there is more room for improvement.

Margaret Singana, a world-renowned songstress, who ushered melodies to the discerning audience such as the abiding tune, 'We are Growing' , the theme song from the television series "Shaka Zulu" which went to number 1 in Holland in 1989, took her final bow (on Saturday 22 April 2000, aged 63) as the celebrated 'Lady Africa'. She died largely forgotten, and in a financial situation unbefitting an indelible star: she died destitute, hungry and angry. The masses who had celebrated her fame evaporated into thin air post her untimely brush with stroke, and confined to the socially dreaded spook called a wheelchair.

'It seems appropriate that one of the veteran greats of the South African Music Industry, Margaret Singana, rightly named "Lady Africa", should have been chosen to sing the title music on not only this version, but on the actual production series of Shaka Zulu itself. She gives to this musical tribute, to one of Africa's Greatest Leaders, a powerful and richly-voiced dimension, a dimension which I feel is a valuable asset, as we humbly attempt to do the story of this legendary King, justice', said William C. Faure, Film Director in tribute to this fallen hero.

That was it! How apropos!

As would be familiar with those acquainted with the politics of disability, it is often acutely striking how, when one first begins to comprehend the reality that (for the most part), our society has been designed and constructed with only the interests of a portion of South Africans - the so-called non-disabled - in mind, overwhelming evidence of discrimination seems to begin bursting forth from one's surroundings.
This is because this substantiation of discrimination - the stairs, the printed word, the busses and trains, the inaccessible toilets and the hostile or patronizing attitudes, to name a very small few - residues invisible to those socialised within a disablist environment, until an awareness originates to be actively created.

Similarly, our internal assumptions regarding what disability means, with their attendant ideas concerning what people with disabilities 'need' or 'should strive for', typically remain invisible and unquestioned within us until we are required to reluctantly examine them.

As in many other parts of the world, the common-sense indulgent of disability which predominates amongst South Africans could be styled as falling within an individual model. In other words, the social and economic destiny of people with disabilities tends to be understood as the logical - and politically sanitised - consequence of impairment of the body.

Such an understanding obviates any interrogation of the positioning and treatment of disabled people by society and the economic sector, as it is the level of the individual that the 'disability problem' is betrothed with. However, less courtesy has been devoted to the ways in which disability and illness are intermediated by other inequalities, including gender and race. In general, disabled women experience higher levels of discrimination and disadvantage than disabled men. The sway of disability on women is not only evident in relation to women who are themselves disabled, but also in relation to the role of women as mothers and caregivers. Being a woman implies an increased set of barriers to access and participation on various levels.

The unemployed Caroline Tlhone of Mabopane in the North West province is living with her two peers [brother and sister who are mentally challenged] and four nieces in a four-roomed house, which earlier belonged to her late parents. Her attempts to apply with the authorities as an indigent household always hits a snag as documents after documents are requested, lost or misplaced and requested again. Barren with lack of information and abject of literacy, her journey towards resolving these matters is guaranteed to being a protracted one indeed. Women with disabilities pay the piper, but who calls the tunes?

Nowhere are barriers more evident, more evident than in the case of women who have to cope with children or siblings who are disabled or who have chronic illnesses. Especially within the context of women-headed households and early pregnancies; women face enormous challenges in raising disabled children, leading some commentators to talk about the ‘feminization of poverty'. Because women disproportionately head poor families, they are at greater risk of suffering illness and disability than members of the general population, while at the same time enduring the negative consequences of disability - within the disabled population women are consistently less likely to be employed. This is possibly a reflection of the double disadvantage which faces women with disabilities - being disabled and female.

Disabled women sometimes also have fewer marriage prospects than disabled men, and can be at risk of being physically and sexually abused. A friend who teaches at a school for the deaf elsewhere in Pretoria informs me of horrible accounts of female pupils being raped by teachers and fellow male pupils with total impunity. That these vulnerable victims are human beings (who are often ostracised by their own kin), are worthy of respect and all the equity rights enshrined in our constitution counts for nothing. Much as they are keen to talk about their turmoil's, these abuses often go unreported because of the shame that some families feel in having a daughter with a disability - women with disabilities thus lose their status, privileges and rights both in society and in the family.

There is a lot of abuse that women and children with disabilities suffer, even to the extent of children with mental disabilities being chained and locked up in backyard houses. We cannot keep quite when we know that these things are happening in our communities. We need to expose these horrible deeds and in that way we can be proud that we are indeed making a contribution in acting against the abuses.

Having a disabled person in the family is sometimes thought to damage the marriage prospects of other members of the family. It is also suggested that disabled men are more likely to marry than their female counterparts. In short, discrimination starts at home, in the early years of life of a disabled woman. This discrimination brings with it reluctance on the part of families, to make tangible and intangible resources available to disabled women, thus undermining their life chances - their social isolation as women is deepened by their disability status. It is therefore not surprising that the UNPD study concluded that 'disabled women were twice as prone to divorce, separation and violence than non-disabled women.'

A distressed call to a popular talk-radio station by a woman with a disability who claims to being a professional, decrying emotional, financial and physical abuse at the hands of her spouse aptly demonstrates the stereotypical walls, akin to the Chinese one, that have to be demolished by a proverbial army of sledge-hammers.

Indeed we are not doing badly in as far as policy direction but need to cascade these strides to all spheres of the social strata. While we pat ourselves on the back for creating enabling structures to give effect to policy ideals, we should equally question why disabled women who are raped, are not keen to report such ghastly deeds to police for fear of perceived repulses. Numerous media reports contend that these victims are accompanied on guilty trips by their families and peers right up to the justice system - and remain remorsefully scared for the rest of their life's, while statistics on such occurrences remain staggeringly unclear.
The establishment of the Ministry that deals with Women, Children and People with Disabilities should be applauded and supported. Those who purport that the Ministry does not have enough teeth should be taking a bit of a look inward and appreciate the fact that the challenges that beset these sectors are so deep-rooted by decades of stereotypes that it would take a while to even scratch their surface.

Changing laws can be swift, but giving them effect, and changing the mind-sets that often render them ineffective, is a much more demanding task. The most fashionable argument, I propose, would be for us to be jostling for practical ideas on how to refurbish our own prejudices and cast the same spell upon our compatriots.

Gala dinners, conferences and pledges that enjoy a 30 day, or so memory span should be discarded in favour of sustainable pursuits that work on the practicalities of getting things fixed for the betterment of disabled womenfolk; if we are to survive the harsh wrath of history. Fortunately it is not too late to awaken to the stark reality that: women (disabled or not) brought humanity to this fold!

There lies your answer: Women with disabilities have paid us as pipers, so they must call the tunes!

Let us heed them melodies. Shall we?

Edwin Sipho Rihamvu is Head of Marketing and Communications at Debttec Recoveries but writes in his personal capacity.
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