‘People shouldn’t be considered disabled; the environment’s disabling’

On the eve of her 80th birthday, Padma Shri Mithu Alur reflects on almost six decades of campaigning for disability rights: how far India has come, and the work that remains to be done

MUMBAI: Earlier this year, it shocked many – disability rights activists, most of all – to learn that Dr Manmohan Singh, who has long had a front row seat in Rajya Sabha, was moved to the last row because the 90-year-old former Prime Minister now uses a wheelchair. While the public reacted to the news with anger and sadness, many probably missed the sad irony: that through his term as PM, Dr Singh had pushed for a more inclusive society. Padma Shri Mithu Alur remembers that it was with Dr Singh’s support that she was able to ensure that students with disabilities came to be included under the Right to Education Act (RTE) in 2010.

Mumbai, India - March 24, 2023: Mithu Alur, founder chairperson of The Spastic Society of India, poses for the photos, at Colaba, in Mumbai, India, on Friday, March 24, 2023. (Photo by Satish Bate/ Hindustan Times) (Satish Bate/HT PHOTO)

“It was a historical legislation,” Alur recalls. Days before her 80th birthday, as she reflects on such landmark moments in a lifetime dedicated to campaigning for the rights of persons with disabilities, Dr Alur is grateful for the support she received through the years – from luminaries like Dr Singh, Ratan Tata, Harish Mahindra (Anand Mahindra’s father), and late actors Nargis and Sunil Dutt as well as from the state and Centre. She’s grateful, moreover, that people with disabilities are now less likely to confront the problems that her daughter Malini faced decades ago.

Malini – Dr Alur’s daughter with Ranjit Chib – was diagnosed with cerebral palsy (CP) when she was born, in 1966. So little was known about CP back then that Dr Alur recalls, “I was once asked to pull her out of a swimming pool at a prominent south Mumbai sports club because someone felt that CP was infectious.”

Decades later, there’s a lot more awareness about neuro-muscular, intellectual and developmental disabilities, thanks largely to Dr Alur’s work. But as India had no infrastructure to support the development of children with disabilities back in the late 1960s, Dr Alur decided to train to be a special needs educator in the UK.

Her Wikipedia page makes the journey from there sound simple: “She wanted to open a school in Mumbai and contacted the then Prime Minister of India, Indira Gandhi. Gandhi asked her to get in touch with actress Nargis Dutt. Dutt became the first patron of The Spastics Society of India (SSI), which formally started on 2 October, 1972.” Embedded somewhere within those three sentences is the story of a 23-year-old mother’s trauma, countless sleepless nights, a fiery determination to see that her daughter has the best possible quality of life, and the endless support of family and friends who quickly rallied around.

Dr Alur admits it helped a great deal that many of the SSI (still located at Colaba, it is now known as ADAPT – Able Disabled All People Together) supporters happened to be people who wielded considerable influence. There were young civil servants who had graduated from Dr Alur’s Alma Mater, Miranda House, and others who had the country’s eyes on them and who were therefore well-placed to advocate for the cause. The list included NDTV founders Radhika and Prannoy Roy; feminist, lawyer and educator Lotika Sarkar; Padma Bhushan recipients Anita and Arun Shourie (whose son Aditya has cerebral palsy); and Dr Alur’s sister, Mita Nundy – who spearheaded the society and frequently spoke at conferences in India and around the world about the rights of the differently-abled.

“Nargis Dutt was fantastic,” Dr Alur says, “She went door to door [to rope in sponsors].” The combined efforts of Dr Alur and her supporters brought in much-needed funds for the society – including from the British Council. Dr Alur remembers thanking King Charles – the Prince of Wales at the time – for his support. “With typical British modesty, he said, ‘Thank me when it happens’,” she says.

Over the years, the ADAPT Rights Group has pushed for accessibility in the design of public spaces and transport systems including buses, airports, malls, banks, hotels and offices. A national chapter was formed to inform and empower persons with disabilities in rural, urban, slum and tribal areas. In 1989, ADAPT Skills Development Centre was set up in Chembur to help young adults with disabilities become employable, and a decade later, Dr Alur established The National Resource Centre for Inclusion (NRCI) to bring down barriers to learning.

“Worldwide, there is a shift from the medical model to the social model, where no person is considered disabled,” says Dr Alur, “It is the environment which is considered disabling.”

The instance with Dr Manmohan Singh in parliament this year, for instance, was a case in point. Another example is the 2015 case of a high-functioning nine-year-old who had autism and was denied admission in Pune schools, RTE notwithstanding. A year before that, Malini Chib – founder and co-chairperson of ADAPT Rights Group and now diversity and inclusion officer at Tata Sons – had to wait at Heathrow airport for two hours as her wheelchair had been dismantled.

“The wheelchair has a dry battery cell, which doesn’t pose a risk on flights, but the staff clearly weren’t aware of the difference between this and a wet battery cell,” says Dr Alur, highlighting the need for manufacturers to play their part to create awareness, too.

Public apathy, she says, is a huge roadblock to change. Dr Alur also believes disabled persons should do more to push for their cause. Rather than rallying together, typically, battles are fought by single-issue groups that focus exclusively on specific disabilities. “There is still a lot of work to be done,” says Dr Alur, pointing to estimates that suggest almost 15 per cent of the Indian population has some disability, “But there is also a lot of hope on the horizon.” And tomorrow, surrounded by her powerful support system, she will celebrate battles won and the possibilities the future holds.