A Beautiful Mind

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, motivational 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 Hospital. It said: “This boy is incapable of doing anything productive in the mainstream. We recommend he be exclusively 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 instead. 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 broken. 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 balance. And there was my dad, trying to convince the school that I was perfectly 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 concept. 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 happen 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 outclassed 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 corridors of the school 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 Mushriff Park, tip the guard so would 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 disability 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 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 beautiful medium because it equalises a lot of things you can’t do on the ground. It’s not necessary to become good at multiple things. You just have to find one — and pursue it with extraordinary purpose. 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 realised I was a nice guy. Things started picking up. But I was also having surgeries every 1.5 years and, after every one, I’d come with a new apparatus 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 practically necessary. There is nothing worse than giving up when you can do it.

Bold new worlds

My dad was just 45, 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 Management 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 because 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 numerical 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 feeding 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] Toastmasters International in 2006 and became the youngest distinguished Toastmaster in the Middle East (a feat hardly 3 per cent 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 received… 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 triumph 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, alternate 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 contacts 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 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 and a counseling 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 parents

You 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 ingrain 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 difficult to find a job in open competition. I’ve been asked some very weird questions 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 because disabled kids are hardly asked their opinion — what they really want to do. The first job is always very difficult 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 again

There 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 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 instructed. “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 continued, “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 discriminated 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