India's understanding of a disabled-friendly environment seems to begin and end with wheelchairs ramps. And the attitude of most governments and private players regressive enough to embarrass us all. But there are some large-hearted individuals who are striving to make sure people with special needs can now go to school, have access to public toilets and even take road trips. This then is a story, not of gloom, but one of conquering the odds.
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.
Janak Singh bowls during a friendly match in a village in Rajasthan for the IMAGE project.
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.
Students aged between six and 25 are enrolled in Sucheta Kriplani Shiksha Niketan (SKSN) boarding school in Jodhpur
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.
Neenu Kewlani with the book of their 84-day journey across India, Beyond Barriers.
Beyond barriers
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.
Ketna Mehta, founder of Nina Foundation, will organise a health camp for spinal cord injury patients in August
“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,” Kewlani says.
Self help
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.
Sunita Sancheti on the way to Leh, Ladakh
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.
3 questions ?
Rajive Raturi :
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.
Source : Mid Day , 2nd June 2013
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