As a young boy, Ravindra Kumar Barkhiya believed that if he wished hard enough, his right leg would untwist and grow strong again, that he’d no longer have to crawl or use crutches, and that he’d be able to play cricket with his friends in his village in Bulandshahr, Uttar Pradesh.
His grandfather took him to a ‘baba’ who chanted prayers and rubbed oils on his leg, his parents took him to doctors who prescribed everything from pills to electrical stimulation. But nothing made Barkhiya’s polio-paralysed leg better.
“Just getting to school 6 km away was an ordeal,” he says. “My schoolmates would walk, but I couldn’t make that distance on crutches. So I’d ride pillion on a bicycle that my father gifted my friend so that he could take me to school.” Axillary crutches both aided and circumscribed his movement — they took the weight off his legs, but restricted the use of his arms. “I was never free. Someone had to help me carry my school bag, serve food on my plate, open doors, use the bathroom, everything.”
Two years ago, Barkhiya, now 30 and a computer scientist with an atomic power station, decided to Google up hospitals that treat polio disabilities. “I wanted to be independent,” he says. When I meet Barkhiya, he is on a hospital bed, his legs in callipers. He is past the most painful part of his treatment, a ‘distraction’ or bone-lengthening procedure, and has never been more optimistic. “Doctor saheb told me if I keep up with the physiotherapy, I may soon be able to walk with just a single elbow crutch,” he says.
I am at Delhi’s oldest hospital, the 134-year-old St. Stephen’s hospital, where on the fourth floor are two wards, No. 4012 and No. 4013, possibly India’s only wards dedicated to treating men and women affected by polio. It has been five years since WHO declared the country polio-free, but the disease has left tens of thousands of people with severe disabilities. And at these polio wards, Mathew Varghese leads the orthopaedic team that performs reconstructive surgery to help patients walk again. They correct deformities of the hip, knee and foot, set right muscle imbalance, lengthen bones, and custom fit polypropylene callipers — all for free, thanks in part to the hospital’s welfare society and in part to donations.
An elevator is not working this morning and Dr. Varghese has been dashing up and down the stairs between the wards on the fourth floor and his office in the basement. His table is cluttered with journals and medical records but also with wedding invitations, letters and photographs that former patients have sent their doctor, informing him about milestones in their lives after surgery.
Varghese calls himself a ‘social orthopaedic surgeon’. “You have to see the disease in its full context in order to be able to treat it. While the disability can be acute, so is the stigma around it. Everyone who comes here just wants to stand on their feet, to walk on their own,” he says. “The paralysis will never go away — but what we try to do here is give patients more mobility and independence. This can be a game-changer for them.”
The poliovirus enters the body through contaminated water or food. When it reaches nerve cells on a section of the spinal column that controls quadriceps (muscles in the thighs that enable us to walk upright), these muscles are paralysed, and the limbs waste away from disuse and eventually deform. “It is a devastating disease and can affect everything from the cervical spine to the muscle in the foot,” says Dr. Varghese. It is also an ‘economic disease’, he says. “The worst affected are the poorest, people who live on the margins where sanitation hasn’t reached, where malnutrition is prevalent and immunity low.”
India’s ambitious Pulse Polio oral vaccination campaign launched nationwide in 1995 brought down polio cases from 50,000-100,000 each year in the 80s to zero in 2012. The last case of wild poliovirus was reported in 2011, when 18-month-old Rukhsar Khatoon from West Bengal’s Howrah district was diagnosed with the disease.
When the ward was set up in the 80s, this was a children’s ward — 7,000 children have been treated here since the ward was established in the late 80s. Now, Dr. Varghese’s patients are adults in their 20s and 30s who come from all across the country, Gujarat to Guwahati, Kerala to Kashmir.
Back at the ward, Dr. Varghese checks in on Puja Sharma, 24, whose leg is in a plaster and strung up in a traction unit to stretch her contracted joints. Sharma was less fortunate than Barkhiya — she had to drop out of school by Class VIII as it had become impossible to travel an hour sitting on the floor of the bus; her paralysis meant she couldn’t prop herself on a seat.
“It started with a fever when she was three years old,” recalls her mother Suman, who is at her bedside. “I noticed one leg had gone limp.” Her parents sought help everywhere, in Delhi where they lived to as far as a town in Uttar Pradesh where ‘doctors’ prescribed potions that peeled her skin off but did little else. Sharma heard about Dr. Varghese from her neighbour a couple of years ago. “All I want now is to be able to stand my own feet, without my brother or father holding my things, propping me up. Maybe I will even finish Class X and find a job,” she says.
Disability surgery is not a priority for anyone, says Dr. Varghese — “not for corporate hospitals, because it is not money-making or glamorous, and not for government hospitals because the beds are occupied by trauma patients admitted for emergency surgeries.” In the absence of access to treatment, families do what they can: they lean on homoeopathy, go to faith healers, or untrained surgeons who make things much worse. Often, the doctor finds that he is righting surgeries that have gone wrong.
“The government has coined a new word for people with disability,” says Dr. Varghese. “It calls them divyang . “What it really needs to do instead is to better train healthcare professionals who treat people with disability, and create an inclusive and barrier-free environment.”
A month after I meet Barkhiya, I receive a message from him on WhatsApp. He has posted a picture of himself captioned: ‘Started standing on my feet without support’. For the first time that he can remember, Barkhiya is on his feet, hands in pockets. “Hopefully I should be able to walk soon too,” he says.