Gayatri Sahasrabuddhe chats up with the mother-daughter duo of Padma Shri recipient Dr. Mithu Alur and authoress Malini Chib who have been at the forefront of a four decade long journey to bring the disabled into the Indian mainstream. The two strong-willed women have been empowering the differently abled through their organisation ADAPT.
“Around 60-70 million disabled children, i.e. over 80 per cent of disabled children in India, are left out of government programs and policies,” says Dr. Mithu Alur, Padma Shri recipient and Founder Chairperson, ADAPT (Able Disabled All People Together) as we chatted with her and daughter Malini Chib. The latter is Founder Chairperson, ADAPT Rights Group, and both mother and daughter have been on a long and arduous journey over the last 40 years, working towards empowering and uplifting the disabled through their organisation.
As we walked over to the home of Dr. Mithu Alur and Malini Chib in South Mumbai, we couldn’t help but notice that the road leading to it was completely dug up, making commuting even for the physically able difficult, we flinched as we wondered what it would be like for the disabled. As Malini, who suffers from Cerebral Palsy pointed out later during the course of the interview, life in India for her as well as numerous other differently able individuals is nothing less than being ‘imprisoned’, a fact that highlights and couldn’t describe better their life here. Nestled in a by lane of Colaba, Dr. Alur and Chib’s cosy home is filled with pictures of family and friends, who have been an integral support system for their journey through disability. A journey driven by the selfless commitment to better and improve the lives of the differently-abled and their families through their myriad services whilst fighting for their rights and ensuring that they receive the resources, education, lifestyle and dignity, which they very well deserve.
Today, both Alur and Chib have become the faces of the movement for the disabled, their names synonymous with the cause. Pioneers and crusaders in the field, both have been instrumental in bringing about awareness and policy change for the community through ADAPT. But the journey has been a long and tough one, and the recent humiliating case of Jeeja Ghosh is just one of the glaring indicators of India’s lack of progress when it comes to disability.
It all began when Malini was born with CP at a time when India was in the dark about disability. The family left for the UK, knowing that Malini would get a better chance at life there. They returned when she was six years old quickly realizing it was a big mistake as India lacked the necessary facilities to help their daughter. Dr. Alur was thrown into the cause and took matters in her own hands, educating herself further, determined to give her daughter a better chance at life.
She soon started the Spastics Society of India, now known as ADAPT. Originally started as a special school, their services now include inclusive education, assessment, treatment, counselling, skill training and job placement to children and families. They have also been working to bring about positive policy changes at the national level for marginalised groups in the country.
“The disabled in India are depoliticised. They are a large number of people with no representation in parliament. They are voiceless and scattered over the country,” says Dr. Alur as she talks about the plight of the disabled, most of who are confined to their homes and are invisible entities, not considered vote banks by politicians. They struggle to commute, get only certain kinds of jobs and remain isolated, with the conditions being worse in rural areas.
“There has been a systems’ failure. It has suited the Government’s financial budget to leave the responsibility of the disabled population to NGOs who can only contribute in an incremental way, so you have a huge number of disabled people out of services even out of the essential services allocated for the poor. The NGOs looking after the disabled are all fragmented in India, so there is no critical mass of opinion questioning the step motherly treatment the Government has meted out for years. There is an urgent need for convergence and systematic and structural changes.”
It isn’t just the state and political system that needs brushing up, society and the private sector too has a long way to go. “There is a complete lack of awareness. The disabled suffer from neglect, prejudice, indifference and apathy, yet they are the poorest of the poor,” causing Alur to question whether the Government is serious about the poor. She adds, “There is a critical need to address disability and poverty: to teach value education in schools and colleges, celebrate diversity and bring disabled people into decision making within policy frameworks.”
While Alur points out on a positive note that change is taking place, it’s no secret that it is a slow, long and heartbreakingly laborious process.
When asked about if she worries about her daughter Malini’s future she responds on a pensive note, “Yes, I do worry about her future. Everybody has just one lifetime; it saddens me to think that Malini and many others may not see the change in their lifetime.”
On a personal level, they are like any other mother and daughter, friendly and open with each other, spending time at the cinema and theatre among
other things. “Malini is a very friendly, sociable, happy, cheerful and organised person drawing people to her. But yes, I do nag her about nutrition, food and health,” Alur chuckles. While Malini states with the help of her mother who has been lovingly and patiently translating her words for us throughout the interview, “I like my mother’s determination. I would have never been able to do it if I was in her place. I think as a mother she is perfect.” Both have been each other’s biggest strength and inspiration, calling each other strong-willed. Malini, armed with a Masters degree in Womens’ Studies from the University of London and a second Masters in Management Technology from London Metropolitan University, hasn’t let her disability hold her down. She’s authored her own book (One little Finger) and is a consultant researcher and conducts empowerment and sensitisation courses for educational institutes as well as corporate companies. She also lectures nationally and internationally. She will soon be flying to London for her annual two month vacation in May where she is able to go for her walks, visit bookshops and libraries etc and socialise freely, and live a better quality of life in general, unlike the restricted one she leads here.
In a city which is getting desensitised owing to everything that it has and continues to be subjected to, however much it is hailed as the ‘Mumbai Spirit’, interactions like these are eye openers for us, forcing us to see what lies behind the blinkers. It is stories of courage and determination like that of Alur and Chib, who could have easily left it all to return to the UK, that are beacons of hope in our troubled times.