Blog entry by Dr. Samuel N. Mathew, Executive Director, NISH
Yesterday (January 2, 2016) I was part of discussions with a group of parents, lawyers, service providers and NGO representatives about a topic that needs urgent attention. – the need to prepare a Bill for the rights of children with intellectual disabilities. The meeting was organized by the Kerala State Commission for Protection of Child Rights. I came off with a number of insights. Heard stories that can break one’s heart – stories that require urgent action.
Every disability is unique in itself. Deficiencies in hearing, speech, vision, mobility, and intelligence have its own unique challenges. But “mental challenge” or “intellectual impairment” requires a special consideration among special needs because the cognition is limited and hence this population is extra vulnerable. They have limitation in acquiring knowledge or skill, in taking decisions required in life, understanding situations and discerning dangers. Additionally they could have physical limitations too. Some with multiple disabilities may have mental challenges as a basic limitation. If one’s cognition is intact, today’s technology can reasonably provide the necessary compensation to make up for the impairments or provide alternate methods. If one has only hearing impairment, it is possible to use hearing aids or cochlear implants to help with hearing. The Deaf population use sign language or written language to communicate. Augmentative and Alternative communication (AAC) strategies can be used by those who are non-verbal or having difficulty with speech. Wheelchairs and a host of mobility devices can be used by orthopedically impaired. The best example of a person with disability but no intellectual impairment, who can live a full life with the help of technology is Prof. Stephen Hawking. He is currently the most respected scientist on planet Earth. But when it comes to cognition impairment, little can be done to compensate for the impairment with technology as the person needs assistance in every aspect of daily life continuously. For this population, the State has to provide adequate laws that will protect them from abuse, neglect and discrimination. Our constitution assures in its preamble all citizens to have equal opportunity, but for individuals with mental challenges, this doesn’t carry any meaning when he or she is not able to advocate for themselves.
Some of the personal stories narrated in today’s meeting are worth hearing. Because that will stir our conscience and also help us to understand some of the realities. One nun, who runs a special school and orphanage narrated the case of about 10 girls whom she has provided shelter in her institution because they have been sexually abused and the families didn’t want them in their homes. Another person who runs an orphanage narrated the stories of several mentally challenged women who come and give birth to babies and the orphanage takes care of the children while the mothers are taken back by the families. The mothers don’t even know how to tend for the babies and hence don’t feel anything when they are taken away from their own babies. Another person who is the principal of a special school narrated an incident that happened in his town. A mentally challenged boy pushed another youngster while they were participating in a Nabi Dina Rally. The youngster fell down but nothing much happened. However, the uncle of the youngster, who was watching this, mercilessly beat up the mentally challenged kid. The boy had to be hospitalized with serious injuries. The people who saw the incident filed a complaint with the Police but they refused to file a case against the influential uncle. He roams around free in the town while the boy remains in the hospital. His mother is helpless.
I met a few passionate lawyers who have the expertize to draft a bill. I met a few service providers and professionals who knew the problems and are able to pin point the problems faces by this population. The Child Rights Commission Chairperson and her team gave the leadership to bring all of these good people together. I am confident when people with different expertize who are passionate and committed come together we can provide the framework needed to protect the less privileged in our society. I see a ray of hope!
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