Stigma Matters: We Need to Talk

By Georgina Mumba

In most parts of Zambia and probably Africa at large, perceptions about disability are more informed by superstition than anything else. In the rural areas where people have stronger connections to traditional beliefs, it is commonly believed that disability is either punishment from the gods or a product of witchcraft. In the urban areas, where most are Christians especially in the wake of the exponential rise of pentecostal churches, disability is viewed as a consequence of possession by evil spirits. Consequently, stigma is a real challenge for persons with disabilities and their families both in rural and urban areas.

As a result, to deflect stigma and its ills, families are naturally compelled to resort to any means necessary to fix and/or shield the child and the family from society. Most traditionalists would resort to traditional healers to fix the impairment while staunch believers find refuge in prayer. I am no authority on both practices so I cannot speak on the expediency or effective of either but I do know life is a process and so are many aspects that define it, healing inclusive. Therefore in the long run, what happens between the point of intervention and ‘healing’ is very critical in the welfare of the disabled child and the family.

For some men the isolation of stigma and the stress of dealing with a disabled child during the phase between intervention and ‘healing’ become unbearable and would resort to fleeing the family leaving the responsibility to the woman. Similarly, for some women, to save face and or their marriages, in the best case scenario, may elect to dump the disabled child with the grandparents or any elderly relatives, and in the worst case may do the unthinkable.

For the disabled child, other than the loss of a stable family life, some of the direct negative impacts of exclusion due to disability stigma are delayed and/or limited education and career progress in the long run. This is a real challenge especially in cases where some parents in desperation would trot from one traditional healer to another or from one pastor to another for years to the exclusion of any alternative conventional interventions in wait for the miraculous healing of their child.

Subsequently, many children with disabilities start school above the recommended age of six or seven. Others, in the long run, suffer the consequences of delayed access to medical support and rehabilitation which can also affect not only academic and professional progress but chances of useful corrective surgery and/or rehabilitation. It is important to understand that for impairments that can be ‘fixed’ or whose effects can be limited through corrective surgery, in most instances the window of opportunity for interventions is very narrow which if missed nothing can ever be done and implications could be the deterioration of the impairment and/or development other impairments.

I remember back in my school days at one of our Zambian special schools, whenever there were inter-school competitions none of us would really be eager to participate. This is not because as a school we fared badly but because as a school we were treated badly. Mostly we were victims of cruel taunts and intimidation from our fellow participants and some teachers. Some called us their grandparents, cheats, slow learners etc. It was no secret that one point the majority of students at this school were above the age of their respective grades.

However, no one ever bothered to understand the real reason behind this predominant discrepancy between age and grade specific to our school. But rather the focus was on the perceived advantage the school enjoyed by deliberately lowering some student’s real ages in relation to grades. It was assumed that some students pretended to be in a lower grade when they were actually senior students in order to have undue advantage over their younger competitors in lower grades. After all it is very difficult to tell the real age of persons with disabilities, so goes the legend.

And yet the reality on one hand was that, this school was previously a home for abandoned disabled children therefore by the time it was converted into a formal school many were already above age. On the other hand, inspite of other students coming from their homes, many equally started school late due to reasons directly or indirectly related to neglect as a consequence of stigma, and/or due to long and consistent periods of stay in hospitals for corrective surgery and rehabilitation.

One important thing to note about this school was their generous health support program. We were very lucky that other than academic support, which was generously subsidised, the school also facilitated free corrective surgery and rehabilitation for many students whose families could not afford it otherwise. And this initiative, though no longer available, helped many students reintegrate into mainstream education and allow many others benefit from the twin support program.

Furthermore, disability stigma is equally a challenge in the work place both at the point of recruitment and during the daily office interactions. Every person has to prove themselves in the work place but every disabled person first has to prove they are actually ‘fit’ to work and secondly that they did not get their place through some ‘charity program’. Beyond the physical fitness question, there is a misplaced but very strong negative attitude on the psychological/emotional stability of persons with disabilities in the work place.

Surprisingly, what people forget is that the work environment is naturally a stressful place therefore the daily challenge to navigate office stresses plus the extra need to be very conscious and cautious of what one does and says just to avoid proving right peoples existing negative perceptions about disability makes work and its environment extremely challenging for some employees with disabilities.

Ultimately due to the significant psychological/emotional pressure to fit in and also prove their professional mark, some persons with disabilities would find the work environment very hostile and thus succumb to depression and/or premature death. Truth be told, because of stigma, the rate of suicides and other depression related deaths among persons with disabilities is actually high in this country.

Stop stigma.   Support life.    Be inclusive

By Georgina Mumba (Zambia 2015)

mumba.georgie@yahoo.com

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