Disability in India: The Struggles of Infrastructure, Prejudice and Karma
Of this number, as many
as 40-80 million live in India,
though the underdeveloped infrastructure across much of this vast country makes
it difficult for them to get around.
But it's not just the
land that can be harsh and unwelcoming; prejudice and the karmic belief that
disabled people are at fault for their incapacity can affect their ability to
lead a normal life.
Devender Pal Singh, 39,
lost his leg during the Kargil War between India and Pakistan in 1999 when a
bomb exploded just meters away from him, piercing his body with shrapnel.
After a subsequent
operation, his right leg became infected and had to be amputated. At one point
doctors didn't think he'd pull through. "This is my second life," he
says from his home in Noida outside Delhi, "because I was pronounced dead.
I am one of the chosen ones."
Blade
runner
Refusing to be overcome by the physical or
mental challenges of losing a limb, he became a marathon runner, eventually
being dubbed India's blade runner owing to the blade-style prosthetic he uses.
He says his mindset is born out of a desire for
people to see him in the competent way that he sees himself. "What I'm
trying to pass on is attitude," he says.
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Pope Francis stops to bless disabled
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A former major in the Indian army, Singh formed a support group
for people like him called the "Challenging Ones." He says he prefers
to feel like he has a challenge to overcome rather than a disability.
By taking part in half marathons since 2009, he says the fellow
amputees in his group, which has 450 members across India and over 1,900 likes on Facebook, have been encouraged to do the same.
His acceptance of who he has become clearly shows. "This is
the positive side of being an amputee," he laughs, effortlessly using his
crutch to press a distant button that operates the ceiling fan.
Long
way to go
But while he has learned to live with his
disability, or challenge, India still has a long way to go before the needs of
the disabled are sufficiently met, or even recognized.
Take a short wander around virtually anywhere in
the country's capital and you are faced with stairs or steep, uneven pavements
with stalls intruding on their spaces, running alongside unruly traffic.
If you have a disability and behave ordinarily, people
take you as extraordinary.
"The population of India (over 1.2. billion) is the biggest challenge," says Singh. "Everyone
expects all buildings and landmarks to be 'disabled-friendly,' but it's not
possible overnight. You must adjust yourself."
Awanish Awasthi, joint secretary for the Indian government's
department of disability affairs, says most new buildings are disabled-friendly
and the government provides financial support to those states wanting to take
up the arduous task of upgrading their existing infrastructure.
But these physical obstacles do little to hold Singh back. Once he
has dealt with a current injury to his thigh, he's planning to run a half
marathon every day for 21 days in 21 different cities of India in 2014.
Inspired by British Paralympic gold medalist Paul Whitehead's feat of
completing 40 marathons in 40 days, his aim is to promote his campaign and
motivate others.
Poverty
barrier
However, it's a different scenario for those who
are physically or mentally disabled and burdened with poverty and excluded from
mainstream society.
The Anchal Charitable Trust in Delhi, supported
by the NGO Handicap International, works with eight slums in the east of the
city, providing disabled children and their families with rehabilitation,
education, counseling and information about their rights.
Manish Singh is a seven-year-old boy from one of
the slums with cerebral palsy, who is usually not able to sit or stand. But in
a rehabilitation room of the trust's center, he sits on the floor supported by
an aid.
His mother says special exercises provided by
professional occupational therapists employed by Anchal have slowly improved
his condition.
"The issue is how to change the mindset;
people think disabled people cannot perform well," says Awasthi.
"Gradually people are recognizing the fact that, given the right
conditions, everyone can become empowered."
Disability
at school
Overcoming disability to serve others
But those with intellectual or learning
disabilities face the added struggle of even being identified.
Aartee Gupta, Handicap International's country
program monitoring manager and a former government schoolteacher, says:
"In the general school curriculum, there is nothing about education for
children with special needs."
Through the charity's work in the central state
of Chattisgarh, they have come across teachers unwilling to accept pupils with
learning difficulties because they believe they are incapable.
Awasthi says the government is developing a
separate curriculum, special schools and trained teachers for the mentally
impaired, which will also enable monitoring their progress. He hopes this will
be in place by March 2014.
Change
of attitude
Gradually people are recognizing the fact that, given the
right conditions, everyone can become empowered.
However, the factor that hinders the acceptance
of disabled people in Indian society is attitude, says Catherine Novi, regional
coordinator for the rehabilitation projects of Handicap International.
In her work with various communities, she has
found many believe disability is caused by black magic or bad karma, as a
result of wrongdoing in the disabled person's former or current life.
At the trust, the mother of Shweta, a
nine-year-old girl with spina bifida -- a condition at birth that involves the
incomplete development of the spinal cord or its coverings -- says:
"Something happened in her former life to make her disabled."
When asked whether the disability may purely be
the result of a physical disorder, she holds steadfast to her belief that karma
is the cause.
However, evidence shows that proper counseling
can transform these attitudes. The trust recruits community volunteers from the
slum, including parents of disabled children, who are given training in areas
such as rehabilitation or therapy.
Radesham is one such volunteer who is trained to
inform the community of their rights. Before joining Anchal, he says he had
strong beliefs about karma being the root of disability.
"After receiving training, I now believe in
the practical causes of disability, such as injury and infection," he
says.
Ironically, Singh says he believes in karma:
"But it is not something just associated with your past life but also
[what you do in] your present life.
"It means 'action' and is an ongoing
process that can be turned around."
Signs
of improvement
There is much to be said about disability in
such a densely populated country. But Awasthi assures that the situation is
improving: "The definition of disability itself has seen a lot of
change," he says.
He adds that a new Persons with Disability bill,
which is at the final stages of being enacted, accounts for 18 disability
types, up from just six in the current 1995 act. These include autism and
haemophilia.
India has also adopted the United Nation's
development agenda for disabled people. And in September, the Supreme Court
ruled that central and state governments must enforce an 18-year-old law to
reserve 3% of government jobs for the disabled within three months.
But do the handicapped have to be extraordinary,
like Singh and other respected disabled athletes such as paraplegic Deepa
Malik, in order to be noticed and accepted by wider society?
"They are role models that inspire
others," says Novi.
Singh adds: "If you have a disability and
behave ordinarily, people take you as extraordinary."
He says others may see him as special because he
is running with one less limb, but that is his driving force: "Sometimes I
feel I'm able to do this because I have less."
