Exclusive ideas for an inclusive India

Carnatic vocalist TM Krishna and the Jogappas, a transgender musical community, come together today evening for a concert titled Aikya, or unity. The Jogappas, from north Karnataka, south Maharashtra and parts of Telangana, who traditionally sing folk devotional songs in praise of Goddess Yellamma, will draw from their vast repertoire in Kannada and Marathi to perform with Krishna and his co-musicians Akkarai Subhalakshmi (violin), Praveen Kumar (mridangam) and Chandrasekara Sharma (ghatam). There will be nine musicians simultaneously on stage today from two diverse musical traditions for a concert that will make a point about exclusion.

Mithu Alur, founder chairperson of Able Disable All People Together (ADAPT), educator and activist known for pioneering care, education and inclusion of people with neuro-muscular and developmental disabilities like cerebral palsy and autism, is readying the last-minute arrangements for the release of her book, A Birth that Changed a Nation – A New Model of Care and Inclusion. What began as a mother’s struggle to help her daughter Malini Chib (diagnosed with cerebral palsy after suffering lack of oxygen at birth) cope with challenges has grown into a movement benefiting thousands of children and parents. A Birth… maps her journey with her daughter and discusses the challenges and the struggle for inclusion of children with special needs has faced over the years.

Bonita Thakur juggles being mom to four children and a job as a helper in one of Mumbai’s toniest parlours. Nine years ago, she learnt she was HIV positive. Yet, the 38-year-old exudes a zest for life. Her laugh is so infectious that soon the self-help group of positive women she is working with in a Kamathipura bylane are chuckling too. Bonita meets them over the weekends to discuss knowledge, attitude, behaviour and how to practice change and care. “The world is not going to include us on its own. If that happens, it will be out of pity. We need to seize the initiative, jump into the mainstream and own it. Let’s see who talks exclusion then?” 

After her daughter Malini was diagnosed with cerebral palsy, Mithu Alur gradually transitioned from a mother to an acitivst. Alur’s book A Birth That Changed a Nation – A New Model of Care and Inclusion, released on Saturday.

As individuals from a broad spectrum make an effort to include the excluded in a world riven by biases, is the dream of a changed, inclusive world a chimera or really achievable? Sociologist and cultural historian Mukul Joshi feels the system is interested in status quo and continues to find newer top down approaches despite its failures and downfalls. “Any real change will have come to from the lowest rung of the marginalised among the marginalised. Though that can seem a very slow and daunting process, that effort cannot be given up because it is the only way to go in the interest of humanity.”

Exclusion and discrimination, he adds, have been part of the subcontinent for thousands of years. “It is not part of some historical wrong, which we learn about from its documentation, but a lived reality of stratification and dominance that runs along the axes of gender, caste, race, ethnicity and class,” Joshi explains.

“Whether in the bowl or the plate, it’ll finally find its way to the belly. So why bicker over how food is served?” asks Siddappa G Algonda of Bijapur, using a rural Kannada proverb. Fellow Jogappas Laxman Nivrutti Bhosale, Mahadev Satish Pasare and Davalsaab smile at the deeper point about hatred and bigotry being made through a mundane routine.

They are taking a coffee break from a practice session with Magsaysay awardee TM Krishna before their unique collaborative concert in central Mumbai’s Sitara Studio.

How did the idea come about? “Shubha Chacko from the Solidarity Foundation wanted to hold an event in Bangalore highlighting issues related to transgender communities, especially the Jogappas… We discussed the possibility of presenting a collaborative concert that allowed people to experience the two different musical forms on the same stage…” Krishna says. “We looked at ways in which we could share the stage. The idea was to allow each form to listen to the other on an equal footing. We’ve tried to retain the Jogappas own musical sound in this conversation,” he says.

Across the city, in Colaba, Mithu Alur’s phone rings off the hook in the run-up to her book release. “I remember when I met a Maharashtra politician in the mid-70s, asking for help in working with spastics, he had turned around to ask, ‘Plastics?’ If his face wasn’t deadpan serious, I might have thought of it as some cruel joke but he just didn’t know any better,” she says. There has been some progress from there. “Even Mumbai’s Asiatic Library is setting up a lift for access. Metropolises are beginning to willy-nilly get around to the idea of inclusion and access, but the condition not only in rural India but even in smaller towns continues to be bad. And given that most of the 80 million challenged population lives here, we cannot rest thinking our work is done.”

Alur speaks from knowledge. After all, it is her research work, which has been instrumental in guiding government policy for people with disabilities. Her PhD thesis Invisible Children - A Study of Policy Exclusion in 1998 examined the government’s policy for the disabled. While following the evolution of educational policy for disabled children with specific reference to the government’s Integrated Child Development Services (ICDS), her research found massive exclusion of children and people with disabilities from services and even from government programmes targeted at the vulnerable. “We had found that over 90 per cent people with disabilities are excluded from services of any kind,” she says.

After her repeated demands, the government accepted that children with special needs be educated under the  Right to Education (RTE) Act. However, implementation has hit several roadblocks. “We want to empower the existing system, where differently-abled kids can study with other children. This doesn’t mean schools should just have ramps and special toilets, but a curriculum, textbooks and examinations made accessible to different kinds of disabilities.”

Her main grouse is with the pedagogy. “There are six million teachers across India, but none are trained to deal with special kids. During teacher training carried out by UGC, IGNOU, NCERT and others, they should be trained to also handle children with special needs in a class of regular kids. That will mean integration and inclusion in the truest sense.”

In the heart of Mumbai’s red light district, Kamathipura, Bonita Thakur is running late for her meeting with the self-help group of HIV positive women. Sex workers here have largely looked out for each other in this neighbourhood. “This is more than that. There is so much ignorance and fear about AIDS/HIV that the moment someone tests positive, she blocks it and feels it’s best to live in denial,” she says.

Born to an impoverished family with five children in Murshidabad on the India-Bangladesh border, Bonita’s parents were lured into sending her off when she was only 11 “to work as a maid” in Kolkata. She was trafficked and sold to a brothel keeper who shifted her to Bombay and pushed her into prostitution. “Unlike other girls who came at an older age, I grew up thinking this is my life. I hardly speak Bangla, my mother tongue. I speak Hindi and Marathi better.”

The latter came through Vishal Thakur, a cab-driver client she fell in love with. “He took me out of the brothel as he had promised, married me and we started a family. He never told me he was HIV positive. I have four children. During my youngest daughter’s delivery, we both tested positive. But my husband tried to brush it off saying the doctor is lying to make money from us. Now he’s down with TB and I have to run the house.” Bonita doesn’t feel embittered or angry as she did when she first found out. “I cannot discount that if it weren’t for him, I’d still be stuck in the brothel. He gave me respectability and his name.” 

From sweeping and swabbing the floors of a beauty parlour to learning the basics of pedicure, and finding employment at a parlour, Bonita has come a long way. She now cares for others facing exclusion after their brothel owners and colleagues have discovered their HIV positive status. “I first began meeting some women informally every Friday. But when I heard of how one woman had been thrown out by her brothel owner, we created a ruckus till she was given her clothes and money.” That set off the sorority and the women began looking out for each other. “I tell them about regular visits to the hospital for check-ups, taking their medication regularly and also the importance of good nutrition,” she says.

Wonder what sociologists like Mukul Joshi would make of these efforts at inclusion.