A Beautiful Mind€¦ · A Beautiful Mind Disability can often be crippling because we refuse to...

2
29 MARCH 2013 17 khaleejtimes.com/wknd W hen Sujit Sukumaran was born, he was given only 14 days to live; today, 27 years later, he has beaten every odd to become a successful HR professional, motivation- al speaker, advocate for the disabled… Here is a man who believes disability is nothing more than discoverable ability. Sujit — in his own words, on his life he chose to live his way. MOM ALWAYS SAYS I’m in hurry — probably because I started that way from birth. I was born premature… out in the seventh month. I weighed 1 kilo and 160 grams, about the size of a broiler chicken, and had to be put in the Special Baby Care Unit — which is sort of like roulette. You have four babies in a cubicle and every day three babies change; one survives. My parents used to pray that I’d be the one that stayed because one of the other three meant you went home in a body bag. “SOMETHING WAS WRONG” They put me on ventilator for 14 days and said they didn’t think I’d make it. I did. But they soon diagnosed me with cerebral palsy — specifically diplegia, which affects the legs. All my motor skills and milestones were delayed. I couldn’t stand or walk without support till I was eight. I didn’t have much trouble with my brains — though it was cerebral palsy — but I had trouble with studies due to certain developmental delays. I liked certain subjects, couldn’t follow anything in others. I still have the initial report from the diagnosis done by Rashid Hos- pital. It said: “This boy is incapable of doing anything productive in the main- stream. We recommend he be exclu- sively schooled in a special needs school and not think of venturing beyond as it could be harmful for his condition.” My father put me in a special needs school for four weeks but then decided to homeschool me for two years in- stead. In 1991, I applied for grade one to Indian High School, Dubai. I didn’t get through the lucky dip — which is the essence of my life to date. I’ve never been ‘lucky’ or had things happen just by sitting around. I’ve always had to work really, really hard for it. GETTING IN THE DOOR I wasn’t always the way I look now. I used to have one squint eye, my neck used to tilt to one side, I used to have a slight drool, and my spine was half bro- ken. Both my hands used to be kept between my legs and I had to be carried and placed from place to place because I couldn’t move. Every 20 minutes, I’d fall off the chair because I had no bal- ance. And there was my dad, trying to convince the school that I was perfect- ly normal and could study. The school said that according to their policy, if I came in the merit list — in the top three out of those applying for the entrance exam — they couldn’t refuse me a seat. My dad really knew how to sell a con- cept. He sold it to me that school was my ticket to liberty and freedom. When the results came out, I placed second in the top three in the merit list. We had to sign declarations clearing the school of responsibility should anything hap- pen to me while there. Also, if I failed a subject or couldn’t cope, it would be the door. We had to work our way around. But that’s what disability is about: many times you’re not given variables that are the best for you in life. You have to make it work with what you’re given. If you don’t have colours in your palette but only black and white, you better be the best black-and-white painter around. Dad used to drum it into my head that education was my only salvation — and that I had to do it in a way that far out- classed everyone around. I was a very stubborn kid. I was intelligent and wouldn’t take a normal explanation for an answer. I had calipers from my toes to my hips, 2.5 kg on each leg. I’d walk like a bonded prisoner in the school corridors and kids would laugh. I remember, during every games class, watching other kids play through the window and begging God for a chance to kick the ball just a few inches. During picnics, Dad would fill my pockets with change but the teachers were too scared to let me on the rides so I’d always sit it out on the grass. I’d get home and abuse dad. Finally, he’d ask me: “What do you want?” And then, he’d drive us all the way to Mushrif Park, tip the guard so he’d open the gates, and both of us would do endless rounds on the rides till I said I was done. He was very particular that your dis- ability is in your own head. If you don’t want to enjoy something, it’s because you yourself are telling you in your mind that you can’t. Of course, there are some things you can’t do, but there A Beautiful Mind Disability can often be crippling because we refuse to free up our minds. Sujit Sukumaran beat the odds by choosing to not feel disabled. In the process, he discovered something called ‘Discoverable Ability’ Overcoming Disability WALKING TALL 29 MARCH 2013 16 khaleejtimes.com/wknd

Transcript of A Beautiful Mind€¦ · A Beautiful Mind Disability can often be crippling because we refuse to...

Page 1: A Beautiful Mind€¦ · A Beautiful Mind Disability can often be crippling because we refuse to free up our minds. Sujit Sukumaran beat the odds by choosing to not feel disabled.

29 march 2013 17khaleejtimes.com/wknd

When Sujit Sukumaran was born, he was given only 14 days to live; today, 27 years later, he has beaten every odd to become a

successful HR professional, motivation-al speaker, advocate for the disabled… Here is a man who believes disability is nothing more than discoverable ability.

Sujit — in his own words, on his life he chose to live his way.

MoM always says I’m in hurry — probably because I started that way from birth. I was born premature… out in the seventh month. I weighed 1 kilo and 160 grams, about the size of a broiler chicken, and had to be put in the special Baby Care Unit — which is sort of like roulette. you have four babies in a cubicle and every day three babies change; one survives. My parents used to pray that I’d be the one that stayed because one of the other three meant you went home in a body bag.

“Something waS wrong”They put me on ventilator for 14 days and said they didn’t think I’d make it. I did. But they soon diagnosed me with cerebral palsy — specifically diplegia, which affects the legs. all my motor skills and milestones were delayed. I couldn’t stand or walk without support till I was eight. I didn’t have much trouble with my brains — though it was cerebral palsy — but I had trouble with studies due to certain developmental delays. I liked certain subjects, couldn’t follow anything in others. I still have the initial report from the diagnosis done by Rashid Hos-

pital. It said: “This boy is incapable of doing anything productive in the main-stream. we recommend he be exclu-sively schooled in a special needs school and not think of venturing beyond as it could be harmful for his condition.”

My father put me in a special needs school for four weeks but then decided to homeschool me for two years in-stead. In 1991, I applied for grade one to Indian High school, Dubai. I didn’t get through the lucky dip — which is the essence of my life to date. I’ve never been ‘lucky’ or had things happen just by sitting around. I’ve always had to work really, really hard for it.

getting in the doorI wasn’t always the way I look now. I used to have one squint eye, my neck used to tilt to one side, I used to have a slight drool, and my spine was half bro-ken. Both my hands used to be kept between my legs and I had to be carried and placed from place to place because I couldn’t move. Every 20 minutes, I’d fall off the chair because I had no bal-ance. and there was my dad, trying to convince the school that I was perfect-ly normal and could study.

The school said that according to their policy, if I came in the merit list — in the top three out of those applying for the entrance exam — they couldn’t refuse me a seat.

My dad really knew how to sell a con-cept. He sold it to me that school was my ticket to liberty and freedom. when the results came out, I placed second in the top three in the merit list. we had to sign declarations clearing the school

of responsibility should anything hap-pen to me while there. also, if I failed a subject or couldn’t cope, it would be the door. we had to work our way around. But that’s what disability is about: many times you’re not given variables that are the best for you in life. you have to make it work with what you’re given. If you don’t have colours in your palette but only black and white, you better be the best black-and-white painter around.

Dad used to drum it into my head that education was my only salvation — and that I had to do it in a way that far out-classed everyone around. I was a very stubborn kid. I was intelligent and wouldn’t take a normal explanation for an answer.

I had calipers from my toes to my hips, 2.5 kg on each leg. I’d walk like a bonded prisoner in the school corridors and kids would laugh. I remember, during every games class, watching other kids play through the window and begging God for a chance to kick the ball just a few inches. During picnics, Dad would fill my pockets with change but the teachers were too scared to let me on the rides so I’d always sit it out on the grass.

I’d get home and abuse dad. Finally, he’d ask me: “what do you want?” and then, he’d drive us all the way to Mushrif Park, tip the guard so he’d open the gates, and both of us would do endless rounds on the rides till I said I was done.

He was very particular that your dis-ability is in your own head. If you don’t want to enjoy something, it’s because you yourself are telling you in your mind that you can’t. of course, there are some things you can’t do, but there

A Beautiful MindDisability can often be crippling because we refuse to free up our minds. Sujit Sukumaran beat the odds by choosing to not feel disabled. In the process, he discovered something called ‘Discoverable Ability’

Overcoming DisabilityWaLKING TaLL

29 march 201316 khaleejtimes.com/wknd

Page 2: A Beautiful Mind€¦ · A Beautiful Mind Disability can often be crippling because we refuse to free up our minds. Sujit Sukumaran beat the odds by choosing to not feel disabled.

29 march 201318 khaleejtimes.com/wknd 29 march 2013 19khaleejtimes.com/wknd

Overcoming Disability WaLKING TaLL

are a lot more that you limit yourself from doing because you believe what others are saying about what you can and cannot do… I learnt to swim before I could walk. For me, water is a beauti-ful medium because it equalises a lot of things you can’t do on the ground. It’s not necessary to become good at mul-tiple things. you just have to find one — and pursue it with extraordinary pur-pose. If you’re a cobbler, become the best shoe-shiner there is so that over time it’ll be unconscious competence.

I used to ask dad why people stared at me when I walk. He said, “People stare at aishwarya Rai also when she walks. what is your problem?” after the initial period of teasing at school though, the kids got sensitised and rea-lised I was a nice guy. Things started picking up. But I was also having surger-ies every 1.5 years and, after every one, I’d come back to school with a new ap-paratus on my body. Excruciating pain apart, from the age of five till 12, I was consistently in and out of therapy and surgery — till after a point, my sense of pain disappeared. The greatest gift my dad gave me is that he never showed me mercy beyond that which was prac-tically necessary. There is nothing worse than giving up when you can do it.

Bold new worldSMy dad was just 45 when he passed away of a silent cardiac arrest. I was 15. when it was time to go to college, I told mom I wanted to stay in a hostel, take a line bus, wash my own clothes… so I did my Bachelors in Business Manage-ment from GRD College of science in Coimbatore. I started as a sub-editor for the New Indian Express and was also briefly with The Hindu, before working

with all India Radio. I started travelling around India doing fieldwork and that experience broke a lot of barriers for me. People stopped seeing me as disabled after the first five minutes…

Disability is nothing but discoverable ability. If my father had believed I wouldn’t get admission in school be-cause the doctor’s report said I had no numerical or verbal cognition abilities whatsoever, I’d be nowhere. I’ve never had a problem with any of my numeri-cal papers all my life and I can speak a couple of languages today. The power of the mind is infinite.

when I came back to Dubai, I started working in insurance before switching to HR. Though I put down the pen, the good thing was I started speaking a lot as a motivational speaker… How did that happen? when you’re on the bed in stitches, you literally cannot move. all those times, after surgery, I’d stare for hours at the ceiling till my dad mounted a frame at an incline on my hospital bed one day and started feed-ing me books. I read so voraciously that I finished 2-3 books in a day. The doc

then decided to give me his medical books. I learnt a lot about my condition and today, I can talk authoritatively about cerebral palsy — at least diplegia — as much as an orthopaedic surgeon can. I can read a report and tell you what’s wrong. My vocabulary and knowledge soared. I got introduced to [educational organisation] Toastmas-ters International in 2006 and became the youngest distinguished Toastmas-ter in the Middle East (a feat hardly 3% of the total membership worldwide achieve). I was also a TED speaker last year and was invited back again this year after the response that talk re-ceived… People ultimately learnt to ignore my disability and listen to the magic of my words. Perhaps that’s why I was chosen: as an example of the tri-umph of the human spirit. For certain people, ‘no’ means game over. For me, it means next opportunity — because not trying is inexcusable.

where iS the community?with the resources available today, amazing things can happen. But people don’t ask. The moment they learn their child has a disability, they put him/her away, out of the public eye. I’ve been blessed but I make sure I don’t forget where I came from. so every week, al-ternate days, for 2.5 hours, if they call in advance and let me know, my house is open for dinner to those who wish to come home and talk. It’s mostly parents of kids with disabilities who come with their reports. I do whatever I can by forwarding them on to the right con-tacts and the parents find solace by listening to our experiences. we’ve been doing this for more than five years. There are very few organisations in the

Apart from working full-time as an asso-ciate with Ideal Man-agement Consul-tants, Sujit is also a tireless advocate for the disabled in soci-ety and is involved with Saathi, a local community initiative aimed at bettering the lives of people with different abili-ties in the UAE

CRUSADER

I used to ask dad why people stared at me when I walk. He said, “People stare at Aishwarya Rai also when she walks. So what is your problem?”

UaE that provide that sort of support system. what aggrieves me is that a lot of the people on the boards of these organisations are there because they have a child with a disability. where is the rest of the community? we need to have an information resource network, an ‘angel investor’ scheme, an early detection centre, a counselling centre... But there is no initiative in this direction — and it’s not because we don’t have the resources to make it happen.

to the parentSyou have to take each disability as it is. The success rate and early recovery a patient can have depends primarily on early diagnosis. Think about what your will is for these kids and don’t shield your child. There’s no way they will learn anything without exposure and self-awareness. Educate them and in-grain a sense of competition in them. Unless they have that internal self-drive to be better than the best, they won’t go anywhere.

with disabled kids, it’s very diffi-cult to find a job in open competition. I’ve been asked some very weird ques-tions during my interviews. But when you’re being interviewed as a disabled candidate for a normal job, you have to know your interviewer is not going to be very gracious. you’ll be lucky to find a boss that’s sensitive. The point is to be utterly practical of the skills of your child. Then you need to ask the child — which rarely happens be-cause disabled kids are hardly asked their opinion — what they really want to do. The first job is always very dif-ficult but it can be done. For disabled people, there are only two options: either you level the playing field or you change the rules.

prejudice? never againThere was a blind gentleman who I was once asked to be a scribe for, in 2005. He was writing the CaT exam, which is a very tough exam. I was sceptical. It’s difficult enough to crack without being blind. shiva walked in, glasses on and stick in hand — typical, I thought. and then he literally blitzed through the entire exam. If he didn’t score 100 per cent in the math section, it was because I wasn’t reading the questions fast enough. He broke my every perception of him.

later, at the canteen, even though it was politically incorrect, I asked him what it was like to be blind. Didn’t he feel deprived? shiva finished his dosa and took me outside. we walked, with my left hand on his shoulder. suddenly, he switched to my right; halfway down the road, he stopped, asked me to find a soft

pebble, walk ten steps away and turn to face him. “Drop the stone,” he instruct-ed. “ok, now pick it up.” we did this thrice and by now, people had gathered. Then shiva said, “Throw it at me.”

I refused. But shiva was adamant. so I finally threw it, and a few seconds later, shiva put out his hand. The stone hit his hand, and he caught it on second bounce. He later explained, “while walking together, I judged you to be about 5 feet 7. I switched to your right and found out, by the pressure of your hand on my shoulder, your right hand was not your dominant hand. By the echo of the stone when you dropped it, I could roughly make out its weight. we were at a uniform distance. simple physics told me, in around 8-9 seconds, it should fall on my right.” shiva contin-ued, “The problem with people like you, sukumar, is that you sometimes see darkness even in light. we have to see light even in darkness. so next time you think your thoughts might prejudice yourself into judgment, think that for

every disability you have, you might have some supreme ability.”

since that incident, I’ve never dis-criminated someone for the way they looked on the outside. The mind is like a parachute. It only works when it’s open. Keep an open mind because you may find inspiration in the people you least expect it from.

— As told to Karen Ann Monsy

Do you know anyone who

refuses to let his/her disability get

in the way of their routines and

dreams? Write to us at karen@

khaleejtimes.com

CONNECT

Perhaps I was chosen as an example of the triumph of the human spirit. For me, ‘no’ means next opportunity — because not trying is inexcusable

Phot

os: M

ukes

h Ka

mal