Deaf, blind and misunderstood

04.07.2016, BENGALURU: About 0.04 per cent of the Bengaluru's population is suffering from deaf blindness and multiple disability. Many of them are mistaken as mentally challenged as their behaviour is different from others,” starts Akhil S Paul, executive director, Sense International India.
The organisation is conducting a workshop for young adults suffering from deafblindness at Monfort Spirituality Centre on Old Madras Road from Monday to Thursday.

"It is a unique disability and these people cannot benefit from workshops held seperately for the deaf and the blind," he notes.

“I met a deaf and blind child in a village in 1991. His mother complained that she was unable to communicate with him. The father said he could not feel the parental bond with him. There are many cases like this and people have difficulty understanding the disability," Paul explains.

Deafblindness can be congenital or acquired. When Rubella virus attacks a foetus, the development of brain and sensory organs takes a hit. Such children are born with one or multiple disabilities. This can be prevented by administering Rubella vaccine, he says.

“Every woman must take this vaccine before pregnancy. The effect of the vaccine remains for nine to 10 years,” he adds.

A person can also gradually acquire the condition when he or she is affected by Usher Syndrome, a rare genetic disorder where one disability leads to another.

Paul talks of a deaf and blind girl he met in Jharkhand. “Her mother had abandoned her and her father was an alcoholic who was never there. She was menstruating and did not know what to do. We got a local woman to help us clean her up and educate her,” he says.

There is no scientific research done to get statistics, Paul says. "Even census doesn’t cover the deafblind. During our door-to-door survey, we realised that in a population of 1 lakh, about 45-50 are deafblind and multi-disabled. With this finding, we came to a conclusion that five lakh people in India are deaf and blind.”

Fifty deafblind youths are expected to participate in the workshop. “In 1997, we started training children, now they are all young adults. We want to educate them about self-development, sexuality and other things. While others can learn these things through books and other media, these people have to be told about it,” Paul says.

Through such workshops, the organisation has helped 71,500 deafblind people across the country with the aid of 57 partners and researchers.