Enable Your Minds

Dr. Rajesh Bhola
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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