Disabled activist Naseema Hurzuk’s story is representative of the trials and victories of millions of disabled people in India. In these excerpts from her book Naseema, The Incredible Story
Disabled activist Naseema Hurzuk’s story is representative of the trials and victories of millions of disabled people in India. In these excerpts from her book Naseema, The Incredible Story, she writes about Mohammed who has no hands but can hit a four in a cricket match, about wheelchair basketball matches in England, and more
Naseema is the touching personal narrative of a wheelchair-bound paraplegic woman who led a normal and healthy life till the age of 16. From bewilderment at first and then suicidal depression, to coping and then rising from the ashes, her story is primarily one of transcendence – how she transcended her own disability by taking on the pain of other disabled people. This truthful story reveals her own grinding personal struggle, her fights against societal apathy towards disability, unbelievable bureaucratic hurdles, lack of simple physical access and inclusivity, and finally her grit and determination that propelled her to be a pillar of strength for other disabled people.
Naseema is the founder of Helpers of the Handicapped in Kolhapur, Maharashtra , and won numerous awards for her outstanding work. Naseema, The Incredible Story was originally written in Marathi. It has been translated into English by Aasha Deodhar and published by Viveka Foundation, New Delhi .
Do you know what it feels like to be a paraplegic? As a small girl, I had read a story about a king who had been cursed by someone. Half his body turned to stone, rendering him immobile, pinning him down in a particular place for years. Then someone came and removed the curse and he became a whole man again. Half my body, from the waist to the tips of my toes, had turned to stone. The only difference was that the king in the story was standing whereas I had to lie down all the while. Half my body was going to be listless for the rest of my life. I had no control over my urine or bowels, neither was I aware of when I passed them. When there was an odour I was turned on my side and the sheets would be changed. It required four people to do this. Powder, perfume and even incense sticks were used to keep the odour at bay. The radio was switched on to cheer me up and a storybook kept next to me. But the tears flowed and kept wetting my pillow. Only a sleeping pill would finally put an end to my tears.
I was sixteen and begging Allah Miyan to give me death. My death would also free those who love me. Either that or my legs should be restored to me, I bargained. At the very least, give me enough strength to manage my own toilet needs so that Ma was not troubled. I'd heard that God punished people in strange ways for doing bad things. But what wrong did I do? I'd never harmed anyone in school or during the one year in college. I'd always been happy helping others. I'd shared my books and notes with anyone who needed them. At Aaji's place, I washed utensils and clothes, carried water from the well, cleaned the courtyard and strung mogra garlands. And I enjoyed their affection in return. So why me? I just couldn't understand.
***
Over the years, we have had to face many such challenging situations, which I believe, must have shaped my character and personality. Let's say they trained me to keep my cool in trying circumstances. This training stands me in good stead today as I try to manage our institution, Helpers of the Handicapped. When I see people panic, I find I can stay calm. I believe, now more than ever, that every problem gives us an opportunity to learn and solving it takes us a step forward in life. I'm not easily fazed by problems, especially because I have the faith that God has a plan and will help me along.
I always remember Baba's words which he often repeated, “Khudhi ko kar buland itna ki har taqdeer se pehle khuda bande se khud pooche, beta teri raza kya hai?” It meant -- “Make yourself so strong that God himself will ask you, ‘Son, what is your wish?'” But how could I ever become so strong? I would sit in the courtyard and gaze at the stars till late at night thinking, thinking. It was during this time that Aruna's father became “my Baba”. He would take me out in his car to eat out. My friends, brothers and sisters would take me to the movies and to the park. Going out in the sun, breathing the fresh air, mingling with crowds in public places -- these are blessings you will count when you have been doing nothing but staring at the beams on the ceiling for a whole year.
It was 1970. One day, Aruna's father took me to meet Babu Kaka Diwan at Rama Kaki's house. Rama Kaki was a blind woman. Babu Kaka arrived in an imported red car and I noticed that he was at the wheel. The car stopped in front of the house and out came a wheelchair. Babu Kaka had a pleasant smile as he wheeled himself towards me. I don't remember exactly what he said, but I do remember being overwhelmed at seeing a man on a wheelchair smile so happily and talk about things like big industry and air travel. I had a strange feeling that I had indeed found my buland man in Baba's khudi ko kar buland poem! He told me how I should complete my education and participate in sports competitions for the disabled. He also told me that I should not only get self-reliant but help other disabled people in Kolhapur . It was a day I could never forget because for the first time I felt I had control over my own disability. And as I sat listening to him I almost forgot that I was in a wheelchair. I read the book, Manoos Motha Jiddicha (Such a Determined Fellow), based on Babu Kaka's life. What impressed me most then was a photograph of Babu Kaka with Prime Minister Jawaharlal Nehru whose good wishes were written in his own hand!
***
England at last! The aircraft door opened on to a platform. I was gently put into a wheelchair and taken down an escalator to a taxi. The organisers were there to receive us. At London airport, I emptied my urine bag and washed my face with very cold water. And then I had a long drink of water. Now I was ready for our taxi ride. We were headed for Elsbury near London .
I noticed how clean and grand London was! I'd been thinking all the while that I was about to set foot on the land of those who ruled India for such a long time. Though I felt a little queasy recalling our complex history, the uneasiness vanished as I began to interact with the English people and was treated with the utmost politeness and affection. I loosened up and decided to make the most of the opportunity that I was lucky enough to have got. I tried to take in as much as I could. It was beautiful outside; I saw mostly cars on the road, no auto rickshaws like in India . We passed beautiful green pastures and I saw some cars parked by the road and people enjoying a picnic. It was the month of August. By the time we reached Elsbury it was dark. I asked Reena for help to go to the toilet. As usual she was rude, “All my patients are self-reliant. You should learn to manage on your own”. She ordered me to come to the dining hall when I was ready and then left me alone to fend for myself.
I fought back my tears and decided that it was best not to eat. My body was aching after the long flight and it was freezing cold. I was exhausted and went to my room to sleep. But the bed was at a much higher level and I couldn't have climbed up on my own. There were girls from Japan and other countries. They had their helpers with them, so with their help I lay down. Tired and without food, I covered my head and fell into a deep sleep.
It was snowing when I woke up. I brushed my teeth, washed up and went to the dining hall to see what was on offer. Everything was cold. The tea was hot but the milk cold, so when I added the milk, the tea became a cold drink. Finally I had some ice cream in spite of the cold weather.
I got introduced to the other competitors. There were teams from forty-eight countries speaking as many languages. Since everyone spoke broken English I didn't feel too out of place. Still I didn't speak much, and when I wanted to be understood, I used gestures. My sari was a hit, with many people wanting to be photographed with me. I didn't have a camera then as I do now.
Everybody was getting ready for the wheelchair race. Among all those shining, lightweight wheelchairs on the track, there was my old, heavy one which I'd been using for the last six years. The rubber tyre of the small front wheel had the habit of slipping out occasionally. I was in two minds whether I should participate. Just then the race started and as luck would have it, the tyre did slip out. The other wheelchairs raced ahead but mine stopped right in the middle. I was heartbroken because I would never know where I stood in comparison to the other nations.
The secretary of the British organising body saw me stop and came over to where I sat helplessly. She placed a gentle kiss on my cheek. Something warmed up within me and I immediately took a liking to this kind, grey-haired lady. She saw the broken wheel but didn't mention it. She merely asked me where I wanted to go. She pushed my wheelchair using the two rear wheels to the basketball court where I wanted to go to nurse my grief in silence. She left me sitting there.
But the basketball court was hardly a place to be silent or sorrowful. I was stunned by what I saw. I forgot all about the wheelchair race as I watched young players playing basketball on wheelchairs with such amazing skill. My eyes darted from D to D, all over the court, wherever they went, everywhere. When they were near the basket they would let go of the wheel and zoom in at great speed to basket the ball! There would be great cheering and clapping. Sometimes the wheelchairs crashed into each other. When they fell, helpers would rush in and seat them back, but never once did the ball leave their hands! The javelin, discus, and shotput -- events I'd trained for, were going on, but I couldn't participate because of my wheelchair. But for the time being, I was so taken up with the basketball game that it didn't matter. The energy and happiness on the smiling faces of the players was mesmerising. I knew then that I wanted to wipe away forever the black mark of misery that was stamped on the disabled people of India and replace it with the same bright confidence that I saw on this court.
I was still watching the game when the elderly lady, whose name I now forget, came to me with a beautiful wheelchair. She said, “This is our gift to you”. She helped me into it. She didn't use the words “donation” or “free distribution”, instead she used the sweet word “gift”.
“Are you happy now?” she asked kindly. “Every year we give away three or four wheelchairs as gifts.” She gave me the sweetest smile, touched my cheek and started to leave. I took her hands in mine with gratitude and could only say, “Thank you”.
The game ended. My new wheelchair flew like the wind on the smooth court and I wheeled around deliriously. The players packed up their stuff and were going to get a bite to eat. They urged me to join them. But everything was just boiled and my stomach churned at the idea. So I made do with just a few spoons of ice cream, though it was funny to have ice cream in that cold weather. I rested for a while and went for a table tennis game.
I spun around in my brand new wheelchair and won the first round. I was ecstatic! I was to play the next day again.
***
One day I received a letter from the Department of Social Welfare. There were some vacancies for posts of lower division clerks in the central excise and toll tax departments. The written exam was to be held in Pune. This time I had a place to stay with my friend Usha who had shifted to Pune after her marriage. Aziz was no longer around to take me around since he'd recently taken up a job abroad. So Parab, who used to work with Baba, accompanied me. I got through the written test and was called for the interview. At the back of my mind was the memory of my most unpleasant experience with the Bank of India. My dear friend and sole companion, the wheelchair, may once again turn out to be my enemy. I was mortally afraid of rejection, so why spend all that money to go all the way to Pune only to be rejected again? I sought out Patil Kaka for his advice. He goaded me to meet the Collector of the Excise Department in Pune, a friend of Baba's. I hated the idea of pulling strings but I was fighting for justice here. I was perfectly capable of working at a desk job with my eyes, hands and intellect. Why should I be debarred from it just because I had no strength in my legs and couldn't walk? I mustered up every bit of courage I had and went with Parab to meet the Collector. I introduced myself and told him about what happened at the Bank of India.
“I need a chance to prove myself. Please give me this opportunity. If I find I'm incapable, I'll resign, I promise,” I pleaded.
The Collector's tone suddenly turned serious, “You are a brave girl. I would like to have someone like you in my department. Why did you take so much trouble? A phone call would have been enough.” Turning to Parab he said, “Why did you have to bother her? You could have come yourself.”
There were good people in the world too, I thought, as I headed back to Kolhapur . Very soon I got an appointment letter saying, “Report to duty with a physical fitness certificate”.
During my working days at the training centre, I'd kept a bed behind the partition wall. I rested there every afternoon for about an hour-and-a-half to reduce the swelling in my legs. But here, at my new office, I was expected to work for about eight hours continuously. Besides, I had urine and bowel problems. Would the civil surgeon stamp me “unfit” for work? I had serious apprehensions. But, as it turned out, he had read about me and my work for the sports event. He said, “Why did you bother to come? I would have given you a certificate anyway. Congratulations on your new job!”
I couldn't believe my ears! A fitness certificate without a physical examination! I was on!
The first thing I noticed the next morning were the five steps that loomed before me at the entrance to the building. Steps were a disabled person's biggest enemy. How would I negotiate them? But as luck would have it I saw some familiar faces, faces of peons who were there since Baba's time. They hauled me up on my wheelchair. I started work that very afternoon.
***
In May 1985, there was a camp in Belgaum , a training programme for young children. We sent five of our students. Then, during another camp in Ichalkaranji for the hearing and vision impaired, where free hearing aids were being distributed, we again sent some of our kids. Dr Dilip Deshmukh and Mr Sudhakar Chandekar noticed that our children used to have fun chatting and singing but they were also disciplined. They were pleased with this and wanted us to send a group again for another camp which they were organising in November 1986. This was a training camp for young adults, where their stay, food, and events would be taken care of.
On the last day of the camp the children were desperate to play cricket. In fact, for a long time, our children had been urging me to form a team and ask NASEOH to hold a cricket match in Mumbai. I dared not do something like this without consulting specialists. But Dr Deshmukh and Chandekar Saheb gave the kids the go-ahead and the match was on! It was an amazing performance. There was Maruti, bowling, batting and taking catches with one hand, a boy with one leg, on crutches, was batting away. Winning or losing was the last priority, what was important was that they seemed to have totally forgotten their disability. Neither those on the pitch nor the spectators seemed to mind the sun beating down on them. It was pure joy for the kids.
After the match, we got an appointment with Vijay Merchant. Deshbhratar, Pramod Shah (a new entrant whose one leg was very short) and I went to see him. We requested him to float the idea of a cricket meet for disabled people at the next NASEOH meeting. The members of NASEOH didn't warm up to the idea, but Vijay Merchant, being a cricketer himself, was ready to hold it personally. We fixed the date and then made special rules keeping disability factors in mind -- the boundary line would be a little closer, more players would field, what degree of disability would be allowed in the team and so on. The match would be held at the Brabourne Stadium in Mumbai and the responsibility was given to Arundhati Ghosh, the well-known woman cricketer.
The match took place as scheduled. On one occasion, Imran Khan, the famous cricketer from Pakistan , happened to be present. We wanted to be photographed with him, but we felt a little shy about asking him. But he agreed easily much to our delight. Our photographer was so excited and confused by Imran's presence that the poor fellow took the picture without removing the lens cap of his camera! Fortunately for him, the team didn't beat him up! But we made up for it by getting frequently photographed with the likes of Sunil Gavaskar and Ajit Wadekar on many occasions.
***
A few years ago under the aegis of the Maharashtra Cricket Association, Helpers organised a state-level cricket meet in Kolhapur . We made arrangements for stay and food at the Chandvani Hall. The matches, which were played at the Khasbagh Stadium, were reported widely by the press. The people of Kolhapur rose to the occasion, leaving no stone unturned. They helped us with breakfast, lunch, prizes, arrangements on the grounds, transport, commentaries -- everything.
Before the state-level meet, we held one-day district-level matches in Kolhapur at the Shahupuri Gymkhana. When the Kolhapur team won, there was wild jubilation with children dancing and singing to the rhythm of dhols and tashas , smearing gulal on people's faces. They walked in a procession all the way to our home. Watching disabled people playing cricket was a novel experience and attracted a large crowd.
Mohammad has no hands, so he wielded the bat from under his armpit and hit a four; yet others were on crutches. But why should I go on like this, I can hardly describe it well enough. If you want to see them play, you can come on a Sunday and see for yourselves. We call Mohammad our Mohammad because a government-run home for disabled children, fearing that they would have to engage a helper just for him, refused admission since he has no hands! The same applies with regard to inclusion in mainstream schools even today with many of our children being turned away at the door.
Excerpted with permission from Naseema: The Incredible Story , by Naseema Hurzuk, published by Viveka Foundation, 2005. Price Rs 250. To order copies, write to Viveka Foundation, 25C DDA Flats, Shahpurjat, New Delhi 110049. Telephone: 91-11-26492473/26492439. Email: India@vivekafoundation.org
InfoChange News and Features, May 2005