Differently abled: People who went beyond the labels
Humaira Ansari and Antara Sengupta, Hindustan Times
Updated: Dec 01, 2014 17:04 IST
Nidhi Goyal, 29, will never forget how she had to fight with Maharashtra state government officials just days before her final mass-media post-graduate exam, in 2010.
"They asked me to choose between a scribe and extra time," says the visually challenged activist. "What could I have done with the extra time if they did not give me a scribe? It took a lot of meetings, pleading and citing government rules before they agreed to give me both."
Goyal then made her way to the London School of Economics, where she is pursuing a Masters in development studies. "Here, I have been assigned a mobility instructor, a library buddy and volunteers to help make studying easier for me," she says.
"While in India, it took me four times as long to read reference books and prepare for exams as it takes sighted students, here they have supported me in all ways and by providing material in accessible formats."Goyal now co-authors a website called sexualityanddisability.org, an online portal dedicated to promoting sexual rights of women with disabilities.
Her brother Ashish, 34, also visually challenged, was the first blind student at the Wharton business school in the US and is now a portfolio manager with Blue Crest Capital, a hedge fund based in London.
The Goyals are among a growing number of young Indians beating the odds to craft full, meaningful lives in a country where disability of any kind is still seen as a life sentence.
These young adults include a blind stand-up comedian, a schizophrenic mime artist, a paraplegic adventure sports junkie, a polio survivor who loves to trek and a double amputee who has set a world swimming record.
"Thanks to the internet, technological advancements and the media, there is now a greater awareness of just how full a life you can lead as a person with disability. This is helping more youngsters push themselves and achieve new highs," says Javed Abidi, director of the National Centre for Promotion of Employment for Disabled People. "I believe that social media, more than anything else, is empowering the youth and changing their attitudes towards their disability."
Reshma Valliappan, a schizophrenic and professional mime artist, would agree.
"The word 'normal' is very relative," says the 34-year-old. "I have never bothered about what people say. I travelled and learnt from new cultures, and I believe this helped me identify my real self and step out into the world."
That can-do attitude is reflected in Masudur Rahman Baidya, 45, a double-amputee and record-setting swimmer from West Bengal. "The truth is, everyone has some disability - ours is just physical," he says.
Access to the necessary resources remains a determining factor, however.
"Not everybody is lucky enough to have access to financial as well as parental support in their endeavours," says Mithu Alur, founder chairperson of The Spastic Society of India (now called ADAPT or Able Disable All People Together). "Millions of disabled people in our country are still marginalised, neglected or victimised, their potential wasted as a result."
Alur set up Spastic Society after the birth of her daughter, Malini, who has cerebral palsy. Malini now works with Tata Consultancy Services in London.
SEEING THE FUNNY SIDE
Take this bar, for instance," says Sundeep Rao, taking a swig of his beer. "I can't see what you can. And you can't see what I can."
This 'default' filter, as Rao calls it, makes up the foundation of many of his jokes.
Rao has been a full-time stand-up comedian since 2012, when he gave up his job as a copywriter with an advertising firm to follow his passion: making people laugh.
"I love the attention and the rush of being on stage," he says, chuckling.
Always the clown in the group, Rao says he often used humour to 'fit in'. He became interested in stand-up after performing at an open-mic night at a friend's insistence. From his first show at a Bangalore pub, he has done more than 600 across the country already. But it was only in August 2013 that he 'came out' on stage about his disability, with a solo act called Out of Sight.
"Before that I felt like I was withholding something," he says. "When I first said I was blind, the audience didn't believe me. They thought it was all part of my act! Eventually, they didn't respond with extra laughter or an 'Awww'. That's exactly what I wanted. It was more like, 'This is my filter, now let's move on'."
Rao was eight when he was diagnosed with juvenile macular degeneration. He now has no central vision, and has lost 60% of the peripheral vision in his right eye and 40% in his left.
His reaction to his disability, Rao says, was to rebel. With encouragement from his family, particularly his mother, he continued in regular school, played cricket, football and golf, and eventually graduated in Sociology from Linfield College in the US.
"The two biggest hurdles in the fight for equal rights for disabled people in India are people's attitudes - usually it's either prejudice or utter indifference - and the government's apathy," says Rao. "The other day I asked for assistance at the airport, and the attendant offered me a wheelchair! I was aghast. I cannot see, but I can walk."
When Rao is not working on his next act, he listens to music, audio books and podcasts, hangs out at pubs, or spends time with his girlfriend of four years, a fashion entrepreneur.
Ask about his favourite joke and he grins. "I find it really funny that people think I'm a nice guy because I can't see. Because that's not true, I am a complete a***hole," he says, laughing. "That joke gets them every time."
A PARAPLEGIC WHO IS AN ADVENTURE-SPORTS JUNKIE
Since he was a boy, Navin Gulia had dreamed of joining the paramilitary forces. So, after school, he enrolled in the National Defence Academy and was then accepted into the Indian Military Academy (IMA). "I even knew what unit I wanted to be part of - the special forces," says Gulia, who comes from a family of Army officers.
In 1995, Gulia fell while participating in infantry obstacle training at the IMA, crushing his spine and leaving him paralysed from the shoulders down.
"In those initial days in hospital, all I could think about was all the things I would no longer be able to do," he says. So severe were his injuries that he spent two years in hospital, finally returning home in 1997, in a wheelchair.
Determined to use his mind if he could not use his body, Gulia completed a Masters in computer management and began teaching in a school. In 2000, he started a coaching centre in Gurgaon.
Gradually, he also rekindled his old passion for adventure sports. "I was determined to reclaim my life," he says. "I started with just driving. Then I joined a flying club."
In 2004, Gulia made it to the Limca Book of Records as the only person to drive non-stop from Delhi to Marsimik La in Leh, Jammu & Kashmir, the highest motorable pass in the world. It took him 55 hours.
Gulia also flies microlite aircraft, and paraglides. "I think because I was already into adventure sports, I could handle the tragedy better. Sport prepares you for the best and the worst," he says.
His world record got Gulia international recognition and helped him found an NGO that seeks to encourage underprivileged children to pursue their dreams. "The truth is, you become successful because of your difficulties, not despite them," he says.
Gulia is now married and lives with his wife in Gurgaon. She helps him run his NGO.
A POLIO SURVIVOR WHO LOVES TO TREK
Manish Shukla is wolfing down his breakfast of toast and tea so he can get to his client meeting on time. "With Mumbai traffic, it will take at least half an hour by cab," he says.
A train would have been quicker, but it's too difficult for Shukla to get on and off and make his way around the railway stations with crutches. A former stockbroker, problems with the public transport are one reason Shukla decided to set up his own business.
"I had been thinking about it for a long time. The turning point came in January, when I tripped on some stairs outside my home and fractured my left knee," he says. "Now I had to think of something that could be done sitting at home."
A travel enthusiast and avid trekker, Shukla set up a travel agency with his friend, Amit Pujari, 27, an MBA. In April, he also launched a bridal wear line called Fashion For U with another friend, Forum Jain, 25, a fashion design graduate.
Both businesses are promoted extensively online and operated out of Shukla's home.
His biggest struggle, he says, was convincing financers to invest. "When you are physically disabled, people immediately feel pity for you, and doubt your capabilities," he says. "I don't let it bother me. I turn to my friends and family for strength. But these attitudes need to change. Why not judge people based on talent, rather than disability?"
Shukla was a year old when he was struck by polio in both legs. Using crutches, he completed school and college and got an MBA. "I couldn't run and play like the other kids, but I did everything I was interested in," he says.
People are always surprised that he can trek, he adds, laughing. "But it's really not that hard with the crutches - and with a little help from fellow trekkers, whom I have found are always happy to lend a hand."
TALKING WITHOUT WORDS
Society needs a reality check even more than I do," says Reshma Valliappan, a professional mime artist diagnosed with schizophrenia at 22.
A bright, opinionated and rebellious youngster, Valliappan sometimes went through periods when she didn't want to talk. It was in one of those dark periods that she took to mime.
"I picked it up when I visited Canada and interacted with street artists. Most of them are self-taught and had many ideas to offer me," she says. "A theatre group in Pune called Orchestrated Q'works ran several events where I was given space to interact with people using mime. It was very therapeutic, since it was natural for me to talk to inanimate objects, imaginary beings and make random conversations - all of which would be considered 'mad' if not for my make-up and costume."
Valliappan now uploads her mime videos on YouTube. Through it all, her father has been her strongest support. "He kept me engaged with carpentry and target practice though people thought it dangerous for me to do such stuff," she says. "His attitude made it easier for me to identify with myself."
Valliappan is currently pursuing a double Masters in Philosophy and Science & Religion. In 2011, she also set up The Red Door, an online community for people with mental health conditions. The group now has over 800 members and Valliappan also uses the platform to advocate for better mental health care.
"The fight continues," she says. "People still say things to me like, 'I can't believe you're schizophrenic. You don't look and talk like one'. This needs to change. We need to see that there is a person behind the labels."
SPECIAL SWIM ACROSS ENGLISH CHANNEL
Masudur Rahman Baidya was nine when he was run over by a goods train. Both legs had to be amputated at the knee.
"I shuttled between hospitals for nearly two years. But I had always loved to swim and long hours in the water helped me get through the trauma, even as a child," he says.
In 1997, Baidya became the world's first double-amputee below the knee to swim across the English Channel. In 2001, he swam across the Straits of Gibraltar. His next mission: To swim across the Palk Strait. He has been seeking a sponsor for this feat since 2010.
"The truth is, everyone has some disability - ours is just physical," he says. "It is possible for people with physical disabilities to do things better than normal people. But you have to trust yourself."