I don’t care being called differently abled, physically challenged, or whatever … I know I am handicapped and I don’t mind being called thus.” Justin Vijay Jesudas is an executive in a leading software major in Chennai. Somebody so brilliant at work that he got a promotion almost every year, he was sidelined when he returned to work after battling with a spinal cord injury incurred in a car accident in Hyderabad six years ago.
“I was driving a Honda City rather fast, hit a pothole and then the road divider. The car toppled and nothing much happened except for a fracture here … (pointing to his upper back).” But that fractured bone poked his spinal cord, “which supplies messages from the brain to the body and vice versa.”
Justin , along with S Vaidyanathan, an IIM Bangalore graduate and brilliant financial analyst; Naveen Iyer, a team leader at Accenture and Manoj Kumar, a vivacious boy of 11, have all come to the Rotary News Trust for the interview. They are all on wheelchairs and exude a cheer, camaraderie and positive energy that is infectious. Over the next 90 minutes, we discuss spinal cord injury, the harm done in shoddy handling during transportation from the accident spot to hospital, callous doctors, inadequate rehabilitation facilities across India and what positive “mental stamina” can do!
Vaidyanathan quit his corporate job 30 months ago and is now helping and guiding, through The Spinal Foundation of India, set up last year, the rehabilitation of scores of people who suffer spinal cord injuries.
Justin, a tetraplegic, reiterates that spinal cord injury is often confused with orthopaedic disability. “Not a single joint or bone in any of us has a problem, but we are paralysed below our levels of injury; for me neck down, which means my hands, wrists and fingers are also affected.”
He says after the accident, during which his phone and wallet were stolen, “I was sitting up and called my wife from a borrowed phone. I held the phone, so my finger function was fine. I was sitting, so my thoracic region was fine.”
But what happened next was a nightmare and shouldn’t happen in any accident. While being transported to the hospital “even as I complained of neck pain the paramedic was flexing my neck.” This, he suspects, triggered his extreme disability. “In any neck level injury, it is very important to secure the neck with a hard collar.”
“Two things make a difference; focus on your ability, not disability, and have mental stamina. If you want to be independent move away your caregivers … making them live your life is terrible.”
Justin realised that the paramedics had really messed up his case when he heard the Emergency doctor yelling at the paramedic that “he is complaining of neck pain and you are flexing his neck. He was screaming, but it was too late … that same day they told me you’re paralysed neck downwards, we have to do surgery.”
The Spinal Foundation
The Spinal Foundation (TSF) at Vellore was set up last year to guide people with spinal cord injuries. “Unlike other physically challenged people who have pan Indian organisations for decades — the National Association for the Blind exists from 1948 — there was no such thing for persons with spinal cord injury.” Apart from guiding the injured on the importance of rehabilitation, TSF does advocacy with government as spinal cord injury is classified as “orthopaedic disability” though it imposes multiple disabilities at one stroke.”
“We’ve come across several cases where people are paralysed after the accident because of mishandling when transported to the hospital,” says Vaidyanathan. He recalls that when he had a freak fall from the parapet wall while in second year at IIM, Bangalore, luckily his friends said be careful of the spinal cord, and ensured he remained flat while being transported to hospital.
Also, the injured person should not be given any fluids as this will delay any surgery that may be required. “So no sitting, no fluids to drink or sprinkle on the face, securing the neck with a collar or any other material make it immobile and treating the person like a log — these are basic essentials in any accident. Every ambulance must have a collar and a full-length stretcher.”
“Rotarians, who took up the battle against polio on such a war footing, should take up spinal cord injury as their next challenge.”
Vaidyanathan’s story is fascinating too. The same night he asked the doctor if he could be mobile using a wheelchair and got affirmation. The third day he was in Christian Medical College (CMC) Vellore, the oldest and best for spinal cord injury rehab services in India. After six months at CMC he went straight back to IIM, Bangalore.
Mother-son duo in college
But it wasn’t easy; at first they refused to take him back; there was no access to classrooms “and they had no idea how to deal with a case like mine. But after a beautiful 343-word summary by my doctor on how India needs to deal with people like me, some phone calls and my mother deciding to go with me, I was back!”
At the age of 67, “she had amazing hostel life, enjoying all the cakes and ice creams distributed during birthdays, even though being a diabetic!”
On attending lectures, he smiles: “Thankfully there was no access to classes so I didn’t have to attend any lectures; I studied on my own,” he laughs.
But getting a job was no laughing matter. In 1992, after passing out, came the campus interviews. Those days the corporates weren’t too happy to employ disabled and he attended interviews with the ICICI Bank, Hindustan Lever, JM Financial, Bank of America, Citibank; you name it, I cleared the interview.”
But none of them would have him, the moment they saw him on the wheelchair, they said sorry. His earlier employer (before he joined IIM) refused to take him after a round of interviews because the owner wasn’t happy employing a handicapped person. One bank, in the second round, asked him atrociously and insensitively why his scrotal area was “so big. Normally I keep a towel around the area to absorb any urine leak, as most of us have partial or no bladder management control.”
“This is not an ortho disability. Not a single joint or bone in any of us has a problem, but we are paralysed below our levels of injury with multiple disabilities.”
The Hindu group of newspapers in Chennai had just started their business daily — The Hindu Business Line — and “to the immense credit of the then Executive Editor K Venugopal and senior editor R Vijayaraghavan, they didn’t ask a single question on my disability or wheelchair. Venu simply said go and check out the rest room.”
Later, a special toilet was constructed near his workspot.
An amazing employer
The third story is of Naveen Iyer, a team leader with Accenture in Chennai. Riding a two wheeler near a construction site, and suddenly finding a heavy sewage truck headed for him from the wrong side, he jumped but ended up with a spinal cord injury that has paralysed him waist downwards. He passed out and can’t vouch for it but his friend swears he saw him moving his legs in the hospital. “Perhaps later, in the ICU, they did something after which I lost the movement. A lot of mishandling and mismanagement happens in hospitals,” says Iyer.
But his employer has been amazing. “My superiors were very co-operative, held my position while I was in hospital and ensured I return to the same team. And my workplace was already accessible for handicapped.”
But Justin was not so lucky. His IT employer first said they’d reduce his team. When he threatened to quit, “they said they’d move me to bench, which meant that after a month I’d lose my job. I told them why wait for a month, I’m ready to quit now.” This zapped them, and they allowed him to work from home. So he moved to Chennai “where my support systems were.”
I watch all of them rising and lowering themselves on their wheelchairs at regular intervals. Vaidyanathan explains these “wheelchair push-ups” are necessary to avoid skin breakage. Because such injuries result in loss of touch and pain sensation, it is easy to get skin problems referred to as bedsores. “You people automatically twitch and turn every now and then, but because we have no pain sensation, and the blood circulation is greatly reduced to the lower half of the body due to lack of activity, every 10 minutes we have to do push-ups on the wheel chair.”
“Manoj has sent 16 children with spinal cord injury to schools; at 11, he should be the youngest such counsellor in India.”
Coming to bladder and bowel management, what is taken for granted by us is a struggle for them. They are taught different methods of catheter management; Justin needs it all the time and carries a bag which has to be emptied regularly. Adult nappies are an option but the cost is huge. Both procreation and sex are difficult but can be managed with external inducement.
Coming to wheelchairs, use of motorised wheelchairs is not advised because it denies the users their much-needed exercise. “Had Justin been using one, his hand and finger movement wouldn’t have improved so much. He used one for some time, but gave it up; all over India not even 10 will be using motorised wheel chairs. Manual wheelchairs keep us healthy.”
A feisty little counsellor
Eleven-year-old V Manoj Kumar’s story is heart rending, frustrating but also empowering. He was five and while playing near his home, where Chennai’s New Secretariat building was coming up, the child slipped and fell into a huge pit which was dug for laying power cables. I hear in disbelief his father Vijay Kumar, an auto rickshaw driver, relate the horror story of how Manoj moved from hospital to hospital, getting near-nil treatment. First he was taken to the Institute of Child Health, next to the Government General Hospital, here he lay in the Emergency section for five days, with a doctor seeing him for the first time on the fifth night.”
Diagnosed with a fracture, he was shifted to the orthopaedic ward, where a towel was tied around his injury! Kept thus for 10 days, he was discharged on the 11th day. But at least a CT scan and later an MRI screening were done.
After hopping around more hospitals, one in Bengaluru, finally Manoj ended up at CMC where Kumar was told his child wouldn’t be able to walk and would have to use a wheelchair for mobility.
Kumar has so far spent Rs 7 lakh on Manoj’s treatment — Rs 2.5 lakh alone on nappies. He is very happy at the Anitha Matriculation School, and has “46 best friends!” Kumar drops him to school, goes once to change his nappy, once again to give him lunch and then to pick him up. “But now a new sword hangs over their heads; the Government has threatened to demolish his house — all of 80 sq ft — and move them far away,” says Vaidyanathan. This means Manoj will lose his school as not too many schools are willing to take in handicapped children. “And this when Manoj has already motivated 16 such children to go back to school. He and his parents visit children with spinal cord injuries admitted to the CMC rehab centre, give them hope and motivate them to send their children back to school by counselling them. Yesterday he counseled two children; at 11 Manoj should be the youngest such counsellor in India.”
We visit Manoj’s tiny home in a Chennai slum and are amazed at the smiling faces that greet us; mother Muthulakshmi says dealing with Manoj’s disability “is no problem at all.” Divya, his younger sister is all smiles and hovers affectionately around her brother as pictures are clicked.
“Ask him how many times he’s fallen off his wheelchair,” prompts Vaidyanathan; “45 times,” is the reply from Manoj, who has learnt to play cricket from his wheelchair.
The accident happened at a government site, but despite many applications and an Assistant Collector’s visit, Manoj has received no help from the Government. Will any Rotarians come forward to give Manoj a home for at least 8 years so he can finish his schooling, asks Vaidyanathan.
A saga of grit and determination
As part of his rehabilitation, initially major effort was made to make Justin Jesudas to stand. But 18 months down the line, he realised that with spinal cord injury one couldn’t walk unless the injury is partial. “I thought why am I trying to do something beyond my control. Instead of focusing on my disability, I should focus on something I can do,” he recalls.
This dramatically changed everything; and instead of allowing his wife or parents to do things for him, he set goals and executed them. He bought a small gym from OLX and did weights to strengthen his shoulder muscles. During his second rehab stint at CMC he met Vaidyanathan, and learnt “many new tricks.”
One daywhen his driver failed to turn up “when I needed him the most,” he decided to drive himself and bought a car with automatic transmission. Watching YouTube he did adaptations, but found that while the accelerator and brakes were easy to operate, to steer with the special knob was extremely difficult, and he couldn’t manage sharp turns. First he despaired, then calmed down and asked his father to make him a tri-pin (see picture) to move the steering wheel. “I can now drive from Chennai to Kerala at one shot and have done 27,000 km. This was the gateway to my independence. I could take my parents and wife out for the first time, can go to malls, ask the security to take out my wheelchair and do my shopping. It is important to set goals or objectives and meet them.”
Having conquered driving, next he decided to play basketball, but with fellow players not turning up regularly, he moved from a team game to swimming. Despite skepticism from life guards he took baby strokes into the pool, picked up swimming, moved from the first lane to the central lane and slowly started increasing the distance. When he could swim for 600–700 metres, he entered the State Championship, won a few golds, found his speed better than that of paraplegics — he is a tetraplegic, paralysed below the neck. Next came the national championship and the international meet in Canada this March where he won three golds. “No coach was willing to coach me because I was paralysed below the neck, so I trained myself,” he grins.
But how does he manage on flights? “It is very difficult but I constantly do push-ups and keep myself hydrated; when the bag is full, my wife empties it in the bathroom. I can manage the visas, the flights, everything. The biggest hassle is our corrupt sports bodies.”
I want to hug him, as he smiles: “So this has been my journey so far. Two things make a difference; focus on your ability, not disability, and have the mental stamina to do so. Two, if you want to be independent move away your caregivers … making them live your life is terrible.”
Vaidyanathan adds that Justin asked both his parents to leave the house because they kept trying to help him. “He makes it sound easy to you now but his restoration was much more challenging than he makes it out to be. Very few people in this situation lead as independent a life as he does.”
What Rotary can do
The two major causes of spinal cord injury are road accidents and falls at construction sites. “You can’t drastically reduce road accidents but harnessing can be made compulsory at all construction sites,” says Vaidyanathan, estimating that about 20 per cent of all spinal cord injury is caused here.
“If Rotarians, who took up the battle against polio on such a war footing, can take up spinal cord injury as their next challenge, they would help immensely to prevent such injuries sustained during construction or through mishandling the injured being moved to hospital.” Unlike polio, this is a multiple disability, is irreversible and has no treatment. All you can do is good rehabilitation, he adds.
He wants more help from Rotarians. “Some Rotary club should adopt Manoj and ensure he completes high school. And there are so many disabled people confined to their wheelchairs at home, with zero income. Transcription work from Rotarians or other organisations will help them get some income. For someone who is at Rs 0, even Rs 1,000 is a big jump.”
Vaidyanathan quit his corporate job 30 months ago, and now helps and guides those with spinal cord injury. Says Justin: “He is a Victorian gentleman; the original ones take an early retirement, play golf, look after their cats and drop their kids to school. In his case the kids are spinal cord injury patients.”
It is this kind of banter with absolutely no whining or self pity that endears these spinal cord injury warriors to you.
All of them regularly participate in The Wipro Chennai Marathon; while in 2012 there were only two wheelchair participants, “in 2013 we had 8, last year 62; and the cumulative distance we did was 904 km,” says Vaidyanathan. This year, at India’s first marathon organised by TSF for the physically challenged (The Kotak Wheelchair Marathon) held in Chennai last fortnight, 100 of them participated in wheelchairs with about 1,000 regular marathoners joining them.