Valued Roles Matter
Keystone Human Services (KHS) is a non-profit organization that is a part of a global movement to provide support and expertise to people with disabilities.
Valued Roles Matter
The famous singer Bob Marley once said, “You never know how strong you are until being strong is your only choice.”
This sentiment is something that will resonate with any parent who is bringing up a child or an adult who is differently abled with significant developmental or cognitive challenges. In India parents are more often than not reluctant to disclose a diagnosis even to their close family owing to the social stigma prevailing in society. It is quite common that in social gatherings people with disabilities are recognized primarily by their disability. The devaluation of the person with disability and the regular wounding by society is a given.
If you are a family member of a person with a disability you are either looked at with pity or with awe: “you brave soul how do you manage!”
My son Dhruv is a 13 year old friendly autistic boy who loves meeting people and playing with children. The last few months the two of us have been going for walks in our community here. I would do my walking and he would try to tag along with other children. Since he doesn’t talk much, stims vocally (makes sounds), and doesn’t get social cues and rules of the game like the other children, he is ignored and many a time made to feel invisible.
Yet to his credit he would persist in going out to meet “friends” and follow them in the hope that someday he would be recognized and included in the gang. On one of my walks a 5-year-old came and asked me: “Aunty, does Dhruv have a disease?” I was horrified but it is not easy to explain Autism and get into semantics with a little kid so I just smiled and said, “No, he does not have a disease, but he is different, and he loves to play with you so can you play with him?”
Then came a day when Dhruv found the strength and confidence to step out alone to play. As a parent I rejoiced thinking he had found his tribe and was finally being valued as a friend. However, my joy was short lived when one day in a burst of candour, he announced sadly, “Friends bad, friends don’t play with Dhruv, they say they will complain to mama!” I asked him how it made him feel. He said, “sad” with a crestfallen face. I looked at him and could feel his pain but had no words to comfort him except to say, “It’s ok, Dhruv, sometimes friends don’t play.”
Then came an incident of great significance. We attended a lunch organized by Dhruv’s music teacher, Manasa, and it included many of her friends and family. What made it unique was the fact people wanted to meet Dhruv not because he is autistic but because he is her student and she had talked to everyone about how well he sings and practices his music. For a change, Dhruv was made to feel valued for being a good student, for his musicality, and what he brings to the table, and not looked at as an object of pity.
I feel eternally grateful to his teacher Manasa for recognizing Dhruv’s love for music and for treating him with respect as a human being. This is truly an example of the principles of SRV being used in real life and I hope Dhruv has more such valued experiences to look forward to in the future.