Fighting for the rights of children with autism or any other learning or physical disability can be a challenge. With little or no help coming from the authorities, many parents are forced to quit their careers and opt to fight for the rights of their children, full time.
Dr Mithu Alur with her daughter, Malini Chib
“My fight for my daughter started more than 40 years ago. She really suffered in this country, and so I chose to leave for a place where she could be educated. The policy paralysis here had not changed even five years later, when I returned,” said Dr Mithu Alur, founder and chairperson of ADAPT Foundation.
At 28, Dr Alur decided she would be working towards creating awareness about the issues and problems she had faced, and other parents like her were bound to have experienced as well.
“While there was very little political will, I got help from many other quarters and individuals to set up ADAPT. While people are much more aware now, the system still needs to be shaken in order to ensure inclusion in the education system,” added Dr Alur. She added that she started out by studying the problem herself and taking a course in special education.
A similar need led to the formation of the Forum For Autism (FFA), a parent support group that started more than 20 years ago, when even doctors and developmental paediatricians in the city were not aware of autism. “We started from scratch and first tried to understand the issue ourselves.
Slowly, other parents got together and we shared our experiences and didn’t feel alone,” said Bina Modak, founder and president of FFA. FFA was the force behind Maharashtra state board’s decision to finally acknowledge and allow concessions to autistic children during board exams.
“Over the years, fighting to get basic rights for our children became so difficult that many parents chose to quit their careers and joined FFA full time. None of us regret doing so because we realised we had to help ourselves. This decision has today helped in saving many lives,” added Modak.
Manasi Tambe, a gifted musician, quit her growing career to stand by her son. “I chose my son over my career because no one in his school was aware about learning disabilities - not even his teachers. His classmates always mocked him and teachers thought he was being lazy in class. I had to study about learning disabilities myself before I could help him,” she said.
Tambe had to not only understand the issue, but also explain the same to her son and the rest of the world. “Today there are many children with learning disabilities who study in my son’s school and I’m glad they don’t have to face so much trouble in convincing the authorities,” she added.
“I have drained all my strength in ensuring inclusion in education, and while some work is happening in this process with RTE in place, it is very disheartening to see very slow or no implementation of the rules in place,” said Dr Alur.