Focus on the ability- not disability: something I need to tell myself, too, every day

On 3rd December 2012, I attended the India Inclusion Summit. Here's an account written by me on Women's Web. Re-posting it here.

“Removing barriers to create an inclusive and accessible society for all”: United Nations.

It has been a few months now since I began volunteering at the Spastics Society of Karnataka school. My children there bring me a lot of joy, and I feel privileged to be a part of their lives. So I jumped at the chance to attend the 1st India Inclusion Summit on the 3rd of December, 2012.

Held at Vivanta by Taj on World Disability Day, it was a day-long event launched by SAP Labs India. There were an impressive lot of speakers, all of who were closely allied with and committed to the vision of an inclusive society in which the differently-abled would have their rightful place as productive members of society. Unfortunately, Arun Shourie, whose book Does He Know A Mother's Heart speaks of coping with his son’s disability couldn't make it to the summit- his son was ill and in hospital.

The other speakers more than made up for Mr Shourie’s absence. These were people who have seen disability from up close - in their family; or work closely with the differently-abled. The most inspirational speaker was Siddharth Jayakumar, who has battled cerebral palsy and come out on top. He began schooling only at the age of 9 as he was considered mentally retarded. Once he began school, though, there was no stopping him.

There were some interesting points that were highlighted by the speakers.

Around 70 million people in India are disabled or differently abled- these include the whole range from mild to moderate to severe to profound disability. Demographics are changing due to better health care and better awareness. Less than 1 lakh of these are employed.

Families and society often overestimate or underestimate abilities. There is a need for a more realistic appraisal. It is also necessary for self-help groups and respite for care-givers, who are those most affected emotionally. Most of the caregivers, close to 95%, are the affected person’s mother. This makes inclusion of care for the care-givers even more important. In our society, the mother is mostly blamed for the child’s condition, and it is considered her duty to give care, and respite for her is not considered a necessity.

Focus on the ability, not the disability. The problem is in how we as a society think about disability. A lack of awareness about the normalcy of a differently-abled person leads to discrimination and marginalisation. At the same time, lack of information about their own disability leads to the differently-abled not being aware of what they can do.

Awareness on disability can be spread by people in a position of maximum influence. These could be the health care professionals, media and religious heads. Of these, the potential of the media is immense- more people have become aware of disabilities after they have been portrayed in movies like Taare Zameen Par, however glamourized the version may be. I personally know of at least a handful of families who have gone from awareness of the special needs to acceptance of their child’s behavioural problems after this movie has been made. It is the right way to remedial action. Other mediums like music, sports, books, spirituality, etc. are just as effective platforms that can be used to this end, as also as therapy tools.

Do check out this impassioned blog-post about the summit by Sangitha at  Life and Times in Bangalore.