Author: Eva Cunningham, Tate Soller
At the age of 25, a dive
into a shallow pool altered Nikhil's life irrevocably. After falling
unconscious and subsequently awakening to a loss of feeling in his legs he
immediately knew something was wrong. Nikhil, now in his quadriplegic state,
was shifted to Delhi for rehabilitation. Here, he remained bed-ridden for three
and a half years, dependent on attendants on a permanent basis. This allowed
Nikhil no freedom or independence, only fueling the fire of his frustration.
Nikhil was not only in physical but also mental distress, where, as he
reflects, this dependence was “making life a complete pain”. This stifling
environment and lack of physical independence ignited Nikhil's depression. His
persistence and relentless motivation was something that remain with him though
and kindled his drive for independence. It was upon meeting a fellow
quadriplegic, Jonathan, that his desire for independence intensified, realising
that there was a better life than what he had been living. Independence now
seemed tangible. Nikhil dismissed his attendants, saying “now your duty is
over, you're free and i'm also free”.
From this point on
through his discussions with Jonathan, the idea of a
house to empower others with spinal cord injuries slowly became bigger and
bigger. This concept was powered by the lack of activity rehabilitation in
India. The way Nikhil saw it, the quality of rehabilitation in India was not
sufficient and there was an apparent need for a space for these people to
achieve independence in their own way. Independence was possible, there just
needed to be a supported avenue in which to achieve this. This space would
constitute not only a physical independence, but also a mental one. In seeing
how others with similar disabilities across the world were engaging in
wheelchair rugby, Nikhil became inspired, deciding that from then on wheelchair
rugby could be a rewarding form of building independence. This provides them
with an alternative form of rehabilitation where they are able to dictate and
guide their own activities. As Nikhil notes, wheelchair rugby makes them more
physically and mentally strong, instilling a drive to want to get even better
so that they can play even better.
Despite their active
creation of independence, people with physical disabilities are plagued with
one overriding societal obstacle: perception. Such disabilities like Nikhil's
are perceived as a curse. There is continual rhetoric and discourse surrounding
him, suggesting that what has happened to him is somehow his own fault, somewhat
karmic in nature, that somehow he deserved this. This societal perception is
damaging enough in itself, adding extra stigma, pain and isolation to those
with physical disabilities. This perception then carries on through society,
influencing the lack of access for such people in everyday life. This then
works as a paradox, as the limited visibility of people in wheelchairs - due to
restrictions and lack of access - then fosters further stigmatization,
especially of young people. Nikhil and his friends are actively deconstructing
this. They purposefully visit everyday places, such as malls, and to make their
presence normalised. By demonstrating this presence they are shifting this
notion of the 'curse' surrounding people in wheelchairs, replacing it with a
conceptualisation of such people engaging in society and, most importantly,
that they are happy despite their disabilities.
Despite the passion and
motivation exhibited at ESCIP Trust (Empowering Spinal Cord Injured Persons)
home, Nikhil and his colleagues have been hindered by funding. At the moment
the organisation is US funded & they haven't been
able to get any funding at home in
India. But yet another struggle has been, reaching other people with spinal cord injuries or other disabilities.
Where, they've encountered difficulties facilitating the transition for people
to their home. This can be due to a lack of funds, mental trauma and alike.
Burdening them yet further is that lack of government recognition. Positioning
them in constant conflict with hospital, as they are providing an alternative
to the traditional means of rehabilitation. Nikhil contends that the government
is at fault for the lack of support and access. This, he suggests, requires a
change in mind set. “Open your arms, welcome us”, he proposes.
The Changelooms program
has granted Nikhil some of this support and the platform he desired though. He
has been gifted greater visibility, funding and promotion which have supported
venture such as running camps, expanding their reach and national network. All
of this contributing to their overarching goal of facilitating the independence
of wheelchair users, as well as having fun in the process!
Nikhil's advice to
someone hoping to follow in similar footsteps is to be a good listener. One has
to listen in order to deliver, he propagates. Changelooms, he reflects, made
him realise the need to work on his own personality, and through analysing and
making changes to himself he was able to create changes in the things around
him. “You have to start thinking of society in perspective”, he emphasises,
“first think of community with whom you have to work with, think
of their mind set”.
His ultimate vision is to
make wheelchair users mentors for others, and to thereby create greater
independence. In addition to this, he also dreams of
participating in wheelchair rugby tournaments on a national and international
level, as well as extending their ESCIP Trust house and establishing several
branches of it to carry out Nikhil's fundamental vision.
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