Life beyond wheels

In the months after the accident, he found himself thinking about the protagonist in Tolstoy’s novella Death of Ivan Ilyich, who wondered, “What if his whole life has been wrong?” Initial days of Jonathan Sigworth’s professional life had involved a case study of differently-abled people, and writing articles championing self-determination in dying, without knowing that he would end up being a quadriplegic, paralysed from the shoulders down.

Way back in 2007 when he was biking down a hill in Dehradun, Sigworth collided with a rock. The impact catapulted him down the mountain path where, in a horrific tumble, he broke his neck at the top of the spine.

In the absence of a sanitised culture and a compassionate approach towards the paraplegics/quadriplegics in our country, the community is forced to encounter discrimination at every step of their lives and Sigworth’s was also not exempted from that. 

To counter such approach, after getting discharged from the Indian Spinal Injuries Centre (ISIC), he decided to impart transitional training to other similar patients. In 2008 he founded Enabling Spinal Cord Injured Patient (ESCIP) in South Delhi’s Kailash Colony area.

“Rehabilitation is the key to live life with dignity,” explained Sigworth, adding: “What we need is a world class rehabilitation centre; not just physiotherapy but a complete approach for a person with spinal injury, to enable him/her to get full control of life.”

Wheelchair Rugby was not just a game that Sigworth wanted to play or watch, it was the means of a self-reliant life for more than 500 spinal cord injured patients. “Wheelchair Rugby was introduced to India by ESCIP in 2008 and has served as a catalyst for independent living and peer support among the spinal cord injured community in Delhi,” Sigworth said.

Any severe spinal cord injury can lead to a serious and permanent form of disability causing complete or partial paralysis waist-down (paraplegia) or neck-down (quadriplegia). “Spinal cord injury transforms the person’s life, as it affects the limbs as well as the bladder, bowel, skin, bones, along with other organs in the body.

 Accidents are the most common cause of spinal cord injuries; the number of cases falls between 2,000 to 4,000 annually. Young adults are thus the most commonly affected population (15-35 years old). The count stands more for a majority of male patients than female. Overall, the estimated number of paraplegic and quadriplegic individual accounts in lakhs.

The biggest difficulty paraplegics/quadriplegics face in today’s time is of attaining a self-reliant life. The community members are prone to diseases which multiplies their trauma. The health problems include urethral and anal sphincter disorders, sensory disorders, kidney problems, balancing issues, genital and sexual disorders, respiratory disorders are also very common. 

More than 70 per cent victims face a variety of these issues. Also, the one of the toughest challenges faced by a person on a wheelchair explains Neena Chadha, a doctor at the ISI centre, is that of accessibility. “When it comes to being disable-friendly, on a scale of one to 10, I would rank Delhi at number two,” she said, adding: “Access is difficult in most parts of the city, be it banks, ATMs, post offices, temples, railway stations or even parks and gardens. 

“We have a fleet of disabled-friendly buses, but they are very few in numbers and have fixed timings,” she explained further. 

The Paralympics games has received a humongous admiration across the world since its inception in early 20th century, when London Olympics came forward and organised Paralympics and named it the 1948 International Wheelchair Games.

Their disability shouldn’t be a barrier to their passion for sports. But it seems that the paraplegic/quadriplegics are not getting support from either the society or the government. Divided on a scale of one to eight, as eight levels of impairment, the community is not allowed to take part in the Paralympics.

To participate in any sports event, the paraplegics /quadriplegics need to rely on a classification system which varies from sport to sport. In the case of the spinal cord injured community the classification system, instead of being compassionate, adds more difficulties in their life. 

“For a person suddenly immobilised and bound to a wheelchair, to experience the world of participating in a team, travel to tournaments worldwide and be able to participate in a Paralympics sport – that is affectionately called “Murder ball” – is great but the government of India’s policies related to this are such which doesn’t allow us to take part in Paralympics,” said Gajendra Negi, a 30-year-old quadriplegic, who is learning transitional skills at the ESCIP trust.

Whether walking into the park or travelling in the bus it seems as if the city is still a little reluctant in accepting us,” Negi added. “The biggest challenge in the classification system depends on how to account for the wide variety and severity of disabilities,” a senior official at the Chief Commissioner for Persons with Disabilities (CCPD) office said. “Consequently, there is a range of impairment within most classifications making the system difficult”, he added.

 

To look after the differently-abled population in the city, an office of the CCPD was established as an independent statutory authority. The office started functioning in the capital from 2009, till then the Department of Social Welfare (DSW) was looking after the functions of the institution.

The CCPD is broadly responsible in taking up the matter relating to deprivation of rights of persons with disabilities. As a sporting team a bleak future scares the whole community and they are merely confined to determination and left with their courage.

“We are differently-abled, we play wheelchair rugby but the Paralympics Committee of India (PCI), time and again, has denied affiliation to paraplegic/quadriplegics to take part in any government funded international sports event,” Nurudin, a patient of paraplegia and  member of ESCIP house said. 

According to a PCI official, outside the Paralympics, Indian players in wheelchairs are allowed to play at many international club-based sports events, but that too on their personal capacity.

Talking about not being allowed to go to South Korea, to play Paralympics game Pawan Sharma said: “Our society and state are just not compassionate towards differently-abled citizens, whether walking in the park or travelling in the bus it seems as if the city is still a little reluctant in accepting us.” 

There are others like Sharma who have overcome their disability through sports but feel let down by the system. “I am sad that PCI is not allowing us to play at the international tournament,” said Guddu, a paraplegic intern at the ESCIP. “I wanted to be a sportsman and after my accident my hobby did not die, now I am playing wheelchair rugby which has given me a chance to live my dream,” Guddu added.

While talking about his experience as a victim of paraplegia, Sigworth, who is imparting transitional training amongst similar patients, said that the society must dwell with a similar dilemma like that of Ivan’s in Tolstoy’s novel. “Ivan dwells on the idea that he does not deserve his suffering because he has lived rightly. If he had not lived a good life, there could be a reason for his pain,” he added.