lnvisible disabilities: A thorny reality

21 Aug, 2016 - 00:08 0 Views

The Sunday Mail

Disability Issues with Dr Christine Peta
Whilst the focus of this article is to discuss the meaning of the subject of disability, I start by saying that I am humbled by the overwhelming response to the article titled “Developmental agenda turns to marginalised communities” which was published in The Sunday Mail Extra last week.

Correspondence was received from individuals and institutions from within the borders of Zimbabwe, from the region and from abroad.

It has been most striking, to learn of local community-based initiatives such as the Ngonidzashe Community Group in Rusape, an initiative of mothers who have disabled children, who meet periodically so as to share knowledge about caring for their children who have both acquired or congenital (from birth) disabilities.

I also acknowledge all the people who have thus far registered their wish to be part of a disability coalition which enables them to share knowledge about disability issues and to effectively contribute towards enhancing the well-being of people with disabilities within families and communities, as well as practitioners and scholars who have shared their work and institutions that have registered their wish to mainstream disability in their programmes.

The evident hunger for a vibrant, interdisciplinary alliance which seeks to practically address the needs of people with disabilities will soon see the official launch of Disability Centre for Africa (DCFA) in Zimbabwe, details of which will be provided in due course.

DCFA seeks to complement Government efforts in the disability sector, by providing stakeholders in both rural and urban areas with an all-encompassing focal point and a place of convergence, through which the voice of disabled people is facilitated by research and collective efforts are made to enhance the well-being of people with disabilities at various levels, including grassroots levels.

Historical practice from around the world has been characterised with intervention programmes that are designed and implemented based on information that is obtained from hear-say and second-hand narratives in studies which draw from the perspectives of parents, service providers and advocates, without much consultation of disabled people (Dotson, Stinson, & Christian, 2003).

There is need to facilitate the voice of people with disabilities, thereby creating space in which they could directly contribute towards effectively addressing their concerns.

The point is that a disability sector which consists of stakeholders that are stuck in distinct functional pockets, that are scattered all over the nation, that do not work together or speak with one voice, is indicative of a sector in which the right hand does not know what the left hand is doing.

Such an approach runs the risk of breeding an inevitable regression of disability sector activities; a scenario which could be avoided through a committed and persistent joint exploration of possible areas of synergy that culminate in meaningful contextual intervention programs, which permeate all the provinces of Zimbabwe, thereby seeking to make a positive difference in the lives of disabled people in the country.

But what is disability?

The United Nations (UN) Convention on the Rights of Persons with Disability states that “persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others” (UN Convention 2008).

However, it is critical to note that there is no single definition of disability that is accepted worldwide and specific disabilities may be conceptualised differently in diverse contexts.

For example, recent research (Peta 2015) indicates that from an indigenous perspective, people who suffer from mental disabilities in Zimbabwe are not commonly defined as people with disabilities, but they are often labelled in Shona as “vanhu vanorwara nepfungwa” or “vanhu vane mamhepo” (people who suffer from brain sickness or people who are possessed by the spirit of the winds).

The point is that taking a one-size-fits-all approach in conceptualising disability and applying it as a unit of analysis in explaining African realities which may be totally different, runs the risk of presenting a skewed picture to the world.

There is, therefore, a need for stakeholders to be sensitive to culture, if the delivery of disability service is to be meaningfully administered, in ways that will be illuminated in future publications.

Is everyone disabled?

There is controversy over the question of whether all human beings have disabilities or not, the question does not have a clear-cut obvious answer. Some people hold the fallacious belief that disability is none of their business because they themselves or their relatives are not disabled. The attitude is that “disability is a personal tragedy of those who have it, so why should we all be bothered?”

However, the irony of the matter is that there is no standard way of defining what it means to be “normal”, hence whilst some people may epitomize themselves as “ideal” human beings, the reality is that very few, if any people, can actually fit into the mould of what can be described as a normal human being (Garland-Thompson 1997). For example, wearing spectacles has become so common worldwide such that people who wear glasses as well as onlookers may not realise that such people have partial visual impairment, some of them cannot fully function without glasses (an assistive device).

Those who consider themselves to be “normal” human beings often give themselves the power to classify bodies as either “normal” (the idea of being able in a mental, physical and intellectual way) as well as the idea of being disabled in cases where one is perceived to be lacking in any or all of these diverse abilities. If we analyse the Shona proverb “seka urema wafa” (laugh at disability when you are dead), we realise that even though some people may believe that they are the “perfect” human beings, the life of every human being is so insecure that no one is immune to the possibility of becoming disabled at one point or another in their life.

Disability may happen to anyone at anytime, for example from accidents and diseases, hence the likelihood of becoming disabled is a possibility for everyone – it can happen to you at any time or any day and even if you are born “perfect” there is no assurance that you will not be disabled at some point in your lifetime; the reality is that the full circle of life is insecure for all human beings (Devlieger 1999).

There is also the issue of visible and invisible disabilities, disability is therefore not only that which we see with our own eyes, such as the use of a wheelchair or crutches, but disability can also be invisible such as in the case of learning disabilities. For example, the findings of a recent study (Peta 2015), indicates that in Zimbabwe, there are some people who at the age of 54 are still learning to read and write or to write their first name and surname. Such people are usually labelled as “madofo” who in the case of children are in some instances constantly beaten up as punishment for failing to obtain good grades in school, and yet the reality is that such children may have invisible learning disabilities. Along the same vein, whilst epilepsy, depression or debilitating pain may not be obvious to onlookers, such invisible disabilities may present limitations in performing daily activities.

We should all refrain from judging one another on the basis of bodily differences, but we should seek to embrace and live with those who may have bodies that are different from ours, thereby reducing the discrimination of disabled people.

  • Dr Christine Peta is the first Zimbabwean to acquire a PhD in Disability Studies from the Faculty of Health Sciences, University of Cape Town. She can be contacted on [email protected]

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