Dr. Rajesh Bhola
India
Apr 26, 2013
India
Apr 26, 2013
Most
societies have norms on how individuals with disability are to be
treated, what roles are appropriate for such individuals and what rights
and responsibilities individuals with disability are entitled to (or
denied). About 80 per cent of the individuals with disability live in
the developing world; in India alone there are more than 60 million. It
is important to understand how common people—a community—explain the
occurrence of disability, and respond to people with disability.
Traditionally, in India, having a disability is attributed to one having sinned, or offended the spirits. We are not alone.
Almost all faiths and belief systems seem to incorporate some notion
that disability is a punishment. Many religious texts have stories and
parables that link moral imperfection and sin with divine retribution in
the form of a disability. However, today, in western culture, the dominant way of explaining disability (is by way of) medical terms – such as resulting from accidents, genetic disorders or viral infections.
The responses to disability range from neglect to some level of tolerance. There are very few examples of communities integrating people with disability into all aspects of their lives. Many countries have developed human rights legislations, policies and programmes.
Within communities, the responses to disability are dependent on a range of factors:
such as the need for people with disability to earn an income, the
value placed on physical or intellectual strength, the type and cause of
disability, the age and gender of a person with disability, where they
live, etc.
As a Local Level Committee member, I was part of a team that conducted a
home survey of 960 families having disabled children in Gurgaon, Rewari
and Mewat Districts. It was astonishing to discover that 380 families
had hidden their disabled children, due to the shame that disability is
thought to bring upon the family. They were not being sent to any
school; and even medical care was either not being given, or given when
it was too late. We came across 18 families where persons with mental
disability were locked up or chained the whole day, or for some hours.
However, a sizeable number of 240 persons with disability, in the age
group of 18 to 35 years, were living well with their families, and often
contributed through their work to their family’s income. The
response of the community ranged from indifference to neglect. Some
surgeries were not undertaken, resulting in permanent immobilities.
Neglect also resulted in the death of some people with disability. In
some instances of neglect, other social factors, such as class or
gender, were also relevant.
Another very common response is to treat people with disability as ‘special’.
This can take different forms – from additional resources being
provided, to more affection and love being given to the people with
disability. However, this ‘special’ rarely means equal. In India,
a common response to dealing with the education needs of children with
disability continues to be to their segregation, via a special schools
system. The quality of education imparted in such schools is low, and the expectations to succeed—placed on disabled students—is far below those in normal schools.
As disability occurs equally across the genders, it is unfortunate that girls with disability become more vulnerable, and are likely to be more neglected – and many die.
Several independent reports, on the conditions of some large shelter
homes for the persons with disability, have highlighted the level of
neglect – and in some circumstances sexual exploitation, and even
death.
There
should be a special provision under Indian Law, which specifically
protects people with mental disabilities, specially from the sexual
offences committed by persons connected to any care-giving organisation.
The Persons with Disabilities Acts across the world also need to be
reframed every five years, in view of the fast-changing environment. We
need to update the laws in India; the legislative framework must outlaw
discrimination. The greatest achievement will be to convince
people—ordinary men and women—as well as politicians from all parties,
that disability is a civil rights issue, and that discrimination against
the disabled must be recognised and stopped. In this ever-changing
environment, with cultures constantly shifting and changing, we need to
also change if our beliefs and attitudes, so that persons with
disability can be fully integrated and included in all aspects of life.
Until such time, all members of the community, irrespective of their
religious, cultural or linguistic origin, need to take personal
responsibility for the way in which persons with disability are treated
in India.
Dr. Rajesh Bhola
is President of Spastic Society of Gurgaon and is working for the cause
of children with autism, cerebral palsy, mental retardation and
multiple disabilities for more than 20 years.
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