Dr. Rajesh Bhola
India
Dec 13, 2013
India
Dec 13, 2013
All humans face challenges; people with disabilities face different challenges. For able-bodied people, most tasks are effortless; the same task for a disabled person is perhaps impossible. Changing a tube light, carrying a large load of grocery or reaching out to take something down from a cupboard is just part of our daily living. Who does this for the disabled? Things that most people take for granted are very hard and sometimes impossible for them. Everyday I meet people who have disabilities - ranging from mild autism to extreme immobility due to cerebral palsy. My conversation begins with the topic of social and personal attitudes towards the infirm and gradually the shared embarrassment eases as we come to understand each other better. Initially it was hard to understand what these children were saying. I felt too awkward, reflecting the embarrassment that I felt in having to ask them to repeat something. I tried hard to follow what they were saying, but I was sure that I had only got a small part of it. Gradually I have learnt to understand them and communicate with them – with the heart.
The world we know is the world as projected by our bodies.
Like all the able-bodied people, the disabled also form their own
world. For those born with a disability, the world generated by that
state is formed from the earliest days. They are born as citizens of
that world. Those who become disabled at a later stage, whether
during childhood or in adult life, however experience the shock of
losing their world. Initially there is resistance, then a terrible
sense of loss and finally the disabled body shrinks back into itself.
They become extremely conscious of having impaired bodies - whether it
is merely a broken arm or leg, a loss of speech following a stroke or a
loss of mobility after an accident. Whereas most people continue to live
in their world, disabled people begin to live in their bodies. The
person recently blinded becomes very aware of his/her internal body
sensations. It is at this point that the recently disabled person either
renounces the old world and accepts the new (with disabled body), or
refuses to let the old world go - insisting on trying to live within it
and perhaps longing and praying for the miracle that will restore not
just the former body but even the former world. The painful choice is
made more poignant by the fact that while the average person is not
conscious of the distinctive character of his/her everyday world -
imagining it to be the only reality - the newly disabled person cannot
imagine any other world than the one he or she is now left with. The
normal world generally regards the disabled persons as excluded,
deprived as it were, of ‘normal’ citizenship rights - and therefore to
be pitied and maybe helped.
As
the recently disabled person recovers from the shock of the fractured,
and now lost, world, a new world gradually begins to dawn. In the
case of a blind person, this is the world of touch, smell and hearing,
which although at first disintegrated by the loss of the unifying power
of sight, gradually link up with each other again. The body regroups,
consciousness reforms itself and a new world appears. In the case of the
person who has lost his/her hearing, a new experience of living within
vision appears and communication becomes focused on the hands. The body
builds up its new world, relating to it with new powers and functions,
for different parts of the body. In the case of the blind person, the
hands are no longer mainly used to do things, but now to know things and
finally to appreciate beauty. As the new world is gradually built up,
put into place with innumerable fits and starts, the disabled person is
no longer confined to the broken body; he/she begins to again inhabit a
world. No longer merely an exile, he or she ‘applies for’, and is
granted, citizenship of a new place. The body is again integrated
within its world and the former world remains as a dream - an occasional
flash of regret, a pang perhaps, only to be overtaken by the intrinsic
meaning of the new world within which one must not only exist…but live.
The
process of world formation may be thought of as transfiguring the body,
since the person now extends from the body into which life had at first
shrunk, and feels his way out again. The disabled sometimes find
themselves forgetting that they are, in the opinion of the old world,
dis-abled. In this manner we may begin to speak of a spirituality of
disability, which transfigures and then transcends the body, whilst
springing from it and remaining united with it. The spiritualized
disabled person has been born again, with fresh awareness of the world
and of the plurality of worlds. No longer confined to the deception of
everyday experience within an absolute world, the spiritualized disabled
person finds, often to his or her surprise, that life is enjoyed at a
deeper level. One of the most important aspects of the spirituality of
disability lies in the challenge that it offers to hegemony. The world
of the able-bodied usually conceives of itself as the only world; those
whose bodies are not able are excluded. However, while sighted people
know that they know through sight, they seldom realize the epistemic
implications of vision; sight projects a world and sighted people are
embodied within that world. They know that there are others but they
seldom know that there are other worlds. Thus they unconsciously create a
discourse of dominance. When this ideology of domination is
internalized by disabled people, the result is a loss of self-esteem, a
loss of soul; they feel marginalized and excluded.
There
can be no dialogue between the ‘abled’ and disabled until the plurality
of human worlds is recognized. As long as the abled world retains its
hegemony, the relations it has with the world of disability will be
those of care for the helpless and of patronization. The relationship
will be that of charity and of condescension, and not that of mutual
respect based upon the acknowledgement of ‘otherness’. However, once
it is recognized that the apparently single world must be pluralized,
the relative breaks down the absolute. The world of absolute religious
truth is likewise challenged. A spirituality of disability makes a
contribution to the wider spirituality of the human race, by breaking
down the absolute world of the powerful. There is a second aspect to
this: a spirituality of disability helps us to gain a wider concept of
the human race itself. If the body is to be thought of as having an
immediate capacity to represent and symbolize our mind, spirit or
character, then the disabled body would indicate a disabled mind, a
tortured face would indicate a tortured spirit and a blind body would
indicate spiritual blindness. Any spirituality that the disabled
body might have, would be but a remnant, a fractured representation, of a
higher and more perfect spirituality; but now the transfigured body is
no longer only the body of the athlete transfigured through motion and
skill, or only the body of the dancer transfigured through the beauty of
rhythm and form, but includes the broken body transfigured towards
otherness and self-transcendence. The transfigured disabled person knows
the variety of human conditions and thus has an opening into other
worlds. In its transfigured state, the broken body may learn to be
beyond desire and fear.
A spirituality of disability not only pluralizes
the human world, it extends it. It leaves a message for the
able-bodied, that while they come to celebrate in this world, the
disabled remain confined in the cages of their (own) bodies. For the
disabled, spirituality lies not just in tolerating the pain of the
disease, but also the pain of embarrassment – which they can feel in a
very physical way.
Fortunately,
access to new (information) technology has been an enormous boon for
many disabled people, opening up for them (again) a world of knowledge
and communication, which transcends the limits of their disabled bodies.
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