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.