Neni Devi takes a deep breath as we ask her about her childhood in Satur, a nondescript village in Rajashthan. “I thought I was the only vikalanga (disabled) in the world. My brother and mother had to drop me to the government school where I studied. My memories are filled with disappointments - of classmates walking away to play leaving me alone in the classroom, holding my urge to use the toilet and waiting for someone to lift me if I fell,” says 26-year-old Devi, who came to Sucheta Kriplani Shiksha Niketan (SKSN), a boarding school (see box) for differently-abled children in Manaklao, on the outskirts of Jodhpur, nine years ago. Today she is a hostel warden at SKSN, a proud worker and not embarrassed about her condition any more.
As she begins work for the day, which involves looking after 100 girls, Devi remembers the first day she walked into SKSN as a student. “My life changed. I met people whose physical condition was worse than mine, and who understood my pain. In the village, I was helped me out of pity. But at the boarding school, they never came to our help when we fell or needed assistance of any kind. They encouraged us to help ourselves. I found my confidence here,” says Devi, who has studied geography, social studies and political science.
Twenty-year-old Janak Singh, too, saw a tough life in his village in Rajasthan. For him, the ignorance of friends and the poor standard of sanitation didn’t hurt as much as watching other children play cricket. “I was wheelchair-bound, but how did that take away my right to play? No one included me in their games,” says Singh, who passed Class XII this year, and is now a full-time employee at the charity organisation Indiability Foundation’s IMAGE programme, which has been using sport as a social vaccine to bridge the gap between the disabled and able-bodied communities in rural areas since 2005. Like Devi and Singh, there are many others who are paving their own way on many fronts in a country that has failed to provide a differently-abled environment, even though the United Nations says it is mandatory that all roads, transport facilities and public spaces be accessible to the physically challenged.
Fighting for basic rights
Not surprisingly, the Indian government has done precious little to implement this UN mandate of 2009. Says Sneh Gupta, an activist with SKSN, “When you compare the amenities for disabled people in India and the West, there is a vast difference.” So a year ago, Gupta founded the Indiability Foundation, which works to change our attitude towards people with physical disabilities and empower them to live independent lives. By the end of 2013, she hopes to kick-start a project for 1,000 public toilets in a thousand villages. “While we were working to improve the sanitation system at SKSN, we never realised what problems children and women face in villages. Open loos in the middle of a field are usually the only choice for people in much of rural India. These areas are at least a kilometre away from the main village. “Imagine someone with bilateral paralysis doing that every day,” she says. Gupta’s project is currently trying to find the best design for a water-free waste solution.
While foundations such as Gupta’s are working to improve infrastructure for the differently-abled, some others are trying to help in various other ways.In 2011, between September 28 and December 20, Neenu Kewlani, Arvind Prabhoo, Nishant Khade and Sunita Sancheti - four friends who met at a centre for the rehabilitation of differently-abled people - travelled across 28 states in India, covered a journey of 19,000 kilometres, in 84 days. Their aim was to highlight the lack of infrastucture for differently-abled people in India. They released a coffee table book called, Beyond Barriers: The Incredible India Tour that documents their journey. “We met at Dr Ketna Mehta’s Nina Foundation, a rehabilitation centre for people with spinal cord injuries,” says Kewlani, who moves around in a wheelchair and has been fighting the cause for disability for the past 13 years.
“As a child, public spaces were inaccessible and that had a huge impact on my life. I grew up in a flat on the fourth floor of a building in Mahim that had no elevator. I had to be carried up and down the stairs to go to school, and during all the surgeries I underwent. With age, it became more and more difficult,” says Kewlani, adding that in school, though the authorities were kind, the infrastructure was inaccessible. “The toilets were not disable-friendly, and I could not go to the laboratory, the library or the auditorium. My helper placed me on my bench in the morning and returned to pick me up in the evening. It broke my heart not to take part in activities and miss school trips,” she recalls.
Under Sarva Shiksha Abhiyan (SSA), Government of India’s flagship programme for achievement of Universalisation of Elementary Education (UEE), every individual, able or disabled, has the right to education. So, argues Kewlani, it is mandatory for government schools to make their schools accessible for students with disabilities. "But most of the time all we have is a ramp. What about the toilets? The classrooms? The auditoriums?” says Kewlani.
Of course there is a rulebook. The Central Public Works Department (CPWD) has a manual on how to make a structure disable-friendly. It mentions that all ramps should have railings for people with crutches and senior citizens. The flooring should be non-slippery and there should be signages for the deaf and dumb to read and tactile markings as well. It is our right. We are educated professionals and the tax payers,”
Last year, Ketna Mehta launched a daylong check-up camp in Mumbai, conducted by doctors. “We hosted 25 spinal cord injury (SCI) patients from all over the country for a complete check-up. Each patient was taken through a round of tests including pathology, sonography, spine evaluation, physio and occupational therapy. We even had a urologist examine their bladder and bowel conditions, a major concern for SCI patients,” says Mehta, who will conduct a similar camp on August 15 this year. The patients were recommended exercises and daily activities. “Some patients had no support in their home states, and had never used crutches to walk,” she recalls. The efforts of people like Gupta, Mehta and Manaklao may be like droplets in an ocean, but it’s a start. And if their work inspires, embarrasses and finally galvanises many others to take a step in the same direction, their lion-hearted efforts would have achieved desired results.
A class apart
1991, Jodhpur: As family members stood outside the groom’s home, ready to go to the marriage venue, they spotted an old man dragging his body up the road. The groom’s father walked up to the man and asked him to go away. Dejected, the disabled man turned back and slowly disappeared round the corner. In the crowd, stood social worker Dr Narayan Singh Manaklao followed the old man. “I asked him why had he been shooed away. It turned out that the man was the groom’s uncle. Fearing that his condition would spoil the family’s name, his younger brother has asked him to go away,” narrates Manaklao, a Padma Bhushan and Padma Shri awardee. It left Manaklao disturbed. “There was not much I could do for the old man, but I could change the destiny of children with physical disabilities,” says Manaklao, founded the Sucheta Kriplani Shiksha Niketan (SKSN), a hostel for disabled children. In the first year, 18 children were given boarding and lodging at the hostel. For studies, they were taken to a government school nearby. “But, the students were not treated well. Thus, I added a primary schooling facility in the hostel itself,” says Manaklao. Today, SKSN offers education till Class XII. And this year, it has also added commerce as an option as well.
In 2005, my friends Arvind and Nishant decided to go on an all-India road trip to highlight the rights of disabled people. During that time, I had fractured my knee and was confined to bed. To make myself useful, I asked Arvind whether he had any work I could take up.
That’s when he involved me in his trip and asked me to help him map the route. Though I had never worked with maps, Arvind offered to guide me, and I immersed myself in the country’s topography.
Once, I happened to tell my friend Neenu Kewlani about it over a cup of coffee and she suggested with join the tour. While charting out the journey, we decided to visit the capitals of all 28 states.
The most impressive stop was at Tejpur University in Assam. It is 80 per cent disabled-friendly, including the auditorium and the rooms in men’s hostels! We put up at government guesthouses at all our stops. Unfortunately none of them were disabled-friendly.
We visited the government offices in the capitals of every state - Gandhinagar in Gujarat and Bhopal in Madhya Pradesh for instance. Before we set off, we had written to all the state governments but received no reply. So, we just barged in to government offices and met ministers and bureaucrats with the help of local NGOs.
Our question to them was simple: When the central government has allocated funds for the disabled, why are they not being put to good use? Do you know that there are 17 universities in India that are accessible to disabled people, but the names have not been announced? How would one know?
The roads in Lucknow impressed us with their perfectly levelled pavements, ramps and railings in place.
In Veli Village, Trivandrum, we took a boat ride. The boats were not disabled-friendly, but we had a staff of 17 to help us. In Ladakh, we trekked to a height of 18,000 feet and touched the snow. It was a dream come true. While we even dipped our feet in the sea at Pondicherry’s thanks to the ramp leading right till the water, we watched the sunrise in Kanyakumari.
But the most adventurous incident took place in Majuli, Assam. To cross the Brahmaputra, one must take a boat that also transports your car. We crossed the river with our Innova on board. Owing to the size of the boat, the Innova was parked perpendicular to the length of the boat. While alighting, our driver panicked, and our car could have fallen into the river. They pulled Neenu and me to safety. We travelled to show the world that just because one is whee-chair bound, it doesn’t mean one cannot travel and see beautiful places.
Director, Disability Rights Initiative of Human Rights Law Network (DRI-HRLN)
What is HRLN?
We are a group of lawyers and social activists that work out of 22 offices across the country to provide marginalised communities access to the justice system. Disability Rights is one of our initiatives started in 2003. According to the 1995 Act, disabled person have social and economic rights to employment, and right to education. We help people with disabilities gain knowledge about their rights and provide legal aid if there is a violation of their rights.
Has there been any progress for the disabled in India?
In the past three years, since the ratification of the UN Convention of rights of persons with disabilities, there has been much debate around the country on rights of persons with disabilities. Grassroots DPOs, which are unregistered disabled persons organisations, have become alive in the country. Physically challenged people are coming together to help each other and spread awareness. They challenge discriminations at the spot itself and fight for entitlements of poor and rural disabled persons.
What initiatives is the Is the government taking?
India has ratified the UN Convention on the Rights of Persons with Disabilities (UNCRPD) and is now obligated to bring all its laws and policies in harmony with the convention. The government initiated a law reform process in 2009 but is sitting with the draft of the revised disability law even today.