Sanjay Leela Bhansali's movie Black , which was inspired by Helen Keller's The Story of My Life gave many a glimpse into the life of a person who is deafblind like Michelle McNally, Rani's character in the movie. “And yes, it is deafblind, not ‘visually impaired' and ‘aurally challenged,'” says Brahada Shankar, Programmes Officer at Sense International (India), who works with people with deafblindness in Kerala.
She adds: “A deafblind person usually relies on his/her sense of smell and touch to find his/her bearing. I am partial to a brand of perfume, which has a sandalwood base. The children with deafblindness, with whom I interact with identify me through my perfume.”
She also goes on to cite the story of her colleague Zamir Dhale, an advocacy officer at Sense International (India), Ahmedabad. A deafblind, he taught Rani and Amitabh Bachchan, the leads for Bhansali's Black, how to use sign language and how to communicate with deafblind people.
Perhaps the sole NGO in the field in the country, Sense International (India), works to meet the needs of deafblind people. “As of today, we are reaching out to over 43,000 deafblind children through 45 partners in over 20 states of India with non-government organisations, government organisations, networks of adult deafblind, families and teachers of deafblind people.”
‘One-woman office’
Brahada manages the partner programmes of Sense International (India) in the southern region of the country. “It is a ‘one-woman office' in Thiruvananthapuram, but I'm supported by team members from different parts of the country,” she says. Sense International (India) is currently supporting 11 partners in the states of Kerala, Tamil Nadu, Karnataka, and Andhra Pradesh.
Brahada's job involves travelling to these partners in order to provide on-site technical support to the educators, families working with deafblind people as well as to conduct monitoring and evaluation of the programmes.
The organisation has also partnered with Sarva Shiksha Abhiyan (SSA) missions in Uttar Pradesh, Kerala, Bihar, Chhattisgarh and West Bengal. Sense International (India) has trained SSA teachers to work with deafblind people. In Kerala, these teachers have been able to identify and provide support to 108 deafblind children from the 14 districts.
Deafblindness (a combination of vision and hearing impairment) is a disability that creates enormous challenges to the individual and those who support them. “Because 95 percent of what we learn about the world comes through sight and hearing, deafblind children face unique challenges in communication, mobility and accessing information. With the spread of services to deafblind people in the country through our partners and government programmes there is an awareness of deafblindness. We are hoping that the new draft bill for disability in the country will give proper recognition to them.”
Brahada has been working with the disabled for 15 years now. It was while working as a research assistant at Indian Institute of Management, Ahemedabad, that she started working with differently-abled people.
“I helped out as a volunteer for Blind People's Association, Ahemedabad, and underwent a course in understanding different aspects of working with visually impaired people.”
In 2002, Brahada shifted base to the city and worked with National Association for the Blind as its city-based programme manager. She then joined Sense International (India).
Brahada has been selected (with full scholarship) to undergo a two-year diploma course in ‘Deafblindness' by Deaf blind Studies a “not for profit” venture developed by a consortium of charities: Signature (previously CACDP), Deaf blind Scotland, Deaf blind UK, RNIB, Sense and Sense Scotland.
“It is a distance education course, which will require me to travel to the United Kingdom,” says Brahada, as she signs off.
