Inspiration
This 16-year-old can teach you a lesson or two in grit and determination.
Here is an inspiring tale of a 16-year-old boy who is 85% disabled and bound to a wheelchair and yet doesn’t question “Why me?” is attending college, wants to pursue data analytics and is a Game of Thrones fan.
July 21 was the first day of junior college in Mumbai and like lakhs of other Mumbai students; Dhruv Shirpurkar also went to college. He has chosen the science stream at the reputed Vaze College in the city's northern suburb of Mulund.
Vaze College was chosen for its ranking (among the top 10 Science colleges in the city rated according to a 2014 India Today survey), but not so much as it was for the reason that it is one of the only disabled-friendly suburban colleges.
For you see that 16-year-old Dhruv is 85% disabled, bound to a wheelchair, since 2007.
He is suffering from Duchenne Muscular Dystrophy, which causes muscle degeneration and progressively gets worse, beginning from the feet and working its way up to the neck. Due to progressive muscle deterioration, the person experiences loss of movement, eventually leading to paralysis and premature death.
His muscles are completely wasted waist down and he can just about use his fingers; waist above he has a 40% disability; he cannot raise his hand. He needs to be fed, bathed, helped to the loo and into his clothes; he can just about turn the pages of a book, but only if it is a paperback.
He also has a Scoliotic (curved) spine, needs often to be nebulised since he is prone to chest infections, which if ignored can put him on a ventilator. He has diabetes and is on insulin. If reading this has not already punctured your spirit, then you are cut from a different cloth. For those who are despairing, fret not, these conditions have not even managed a small dent in Dhruv's spirit.
His physical condition belies a brilliant mind, proof being the 92.2% he scored in the Central Board of Secondary Education (CBSE) examination. His next aim is the Indian Institute of Technology — computer or mechanical engineering.
"My condition does not preoccupy me. I don't think of it as something big. It's just a part of me," he says. His actions also show that – he did not use a minute of the extra 45 minutes given to special students appearing for exams.
Due to his diminished strength he had to use a writer as allotted by the board. But he says, writing with the help of another person is actually more difficult as you have to compose your answer in your head and then dictate it.
Dhruv deeply acknowledges his parents and his school — the Nalanda Public School, in Thane – for his success.
"The school was very good, there were elevators which allowed me access to almost all areas and there were ramps everywhere. I was the only child in a wheelchair, but there were other children with learning disabilities and a child with visual impairment," he says.
Reminiscing about securing an admission for Dhruv in a school, his father Mangesh, an engineer says, "One school told us to take his IQ test and even after he scored very high they refused admission, saying they wanted a caretaker right from the beginning which was not needed. It's as if physical impairment equals mental impairment."
"Actually kids with Duchenne's are advised against going to regular schools because more the stress faster the muscular deterioration. That is why neurologists advise against it," Mangesh adds.
Dhruv pipes up, "My father's explanation is not valid. It will in fact cut down on our capability. If you have no learning disability, if the person can manage physically, why should the child have to go to a special school?"
With the easy availability of information on the internet, he has read up extensively and is aware of every aspect of Duchenne.
The family credits the school for being very supportive at every step. Teachers went out of their way to give printed notes when his hands couldn't keep up with writing in class. They also helped find him a qualified write. Even his classmates assist him in everyday chores like taking text books out of his bag, or just helping him adjust in his wheelchair. However, an attendant employed by his parents wheeled him around school and helped him to the washroom.
Fighting fate
It is but natural to question “Why me?” but the family brushes it aside saying that phase is long gone. You cannot fight this, you have to accept it and make the best of a bad situation. We are optimistic that in the years to come there may be a solution said the father.
"We are taught not to discriminate over caste, community, and colour, to believe in women's empowerment, but what about not discriminating against the handicapped? It should be part of the curriculum," says Dhruv.
He also feels there is a lot of prejudice against the differently abled. "We are always underestimated; if I can't walk it doesn't mean I can't think. People treat us like we are some alien species to be gawked at."
Dhruv moves around in a motorised wheelchair, which he has been using since 2007, when he was just seven, he barely remembers what it was to walk.
"We moved to our present apartment during Ganpati. He was walking, but he was very unsteady and he kept falling and hurting himself, so the doctor told us to get a wheelchair. We bought him this one and he has never got up from it ever since," says Rupa.
Rupa says each time they are in a public place people come up to them ask what the wheelchair cost.
Adds Dhruv, "They think the wheelchair is like a gadget or a car! They want to sit in it and drive it around. They don't see it as medical equipment and the challenges that a person using the wheelchair faces. I just normally ignore such people."
But the wheelchair at affords some degree of independence to Dhruv since it only needs the use of his fingertips to get around.
"But not everyone can afford it," points out Rupa. "Seven years ago it cost me Rs 1.5 lakh; today it costs Rs 3.25 lakh. It is made in Germany and there are no service centres in India. You know, we have made at least 25 changes to it ourselves."
Says Dhruv, "The prices of TVs, phones, computers go down, why not wheelchairs? It's because we are not mainstream."
Finances
Any severely debilitating condition can take its toll financially. Here too it has not been exactly smooth sailing.
"If Mangesh had not gone abroad, it would have been very difficult. Family members have been supportive and have lent us money which we have always returned," says Rupa.
Has it been easier dealing with his disability over the years?
"Well, yes and no. No, because we are getting older. He is getting heavier. For instance, making him wear his trousers is very difficult; or taking him to the bathroom. It is very difficult for me to pick him up now," says Mangesh.
"You know, when it was first detected, it was like a bolt from the blue. We were completely unprepared. We had never even heard of Duchenne. Since it is a genetic disorder, we went back five generations in both families to see if anybody had anything similar, may be they did not diagnose it, but there may have been someone with a disability. But we found nothing," says Rupa.
"What really pulls us through is our faith in God. That phase of 'why us' is long gone. You cannot fight this, you have to accept it and make the best of a bad situation. We are optimistic that in the years to come there may be a solution," says Rupa.
Dhruv nods his head in agreement.
They take each day at a time, each goal at a time. Class 10 done, Class 12 next.
Like all parents, Mangesh and Rupa worry about his future and whether he will be able to secure financial independence some day. Like other parents, Mangesh too has decided on a career for Dhruv – an engineer. But he respects the fact that Dhruv wants to do data analytics. However, Mangesh feels Dhruv may not be able to physically cope with the demands of engineering, but wants him to give it a go. He even has notes ready for his son.
Dhruv believes he can and will.
" …am a positive person, but I am also a rebel. I do not always accept situations the way they are. If I am not happy with the way things are, I will fight it and change it or at least improve it. By situations I mean my skills, my academics, not my physical abilities. I do not focus on my disability at all," he says