Immersed in our busy lives, we take our abilities for granted. To see and hear and speak coherently, to sprint across busy roads or dash up a flight of stairs, to think clearly and grasp what we read; we do it all without a second thought. Yet there are millions among us for whom these activities are impossible dreams. I recently fractured my knee, and experienced life in a wheelchair.
Taking even a few steps became excruciatingly painful. During the long process of recovery, routine daily tasks seemed as challenging as climbing the Himalayas. Taking a bath; crossing roads jammed with Bengaluru’s legendary traffic; balancing painful steps on uneven and often non-existent footpaths; ordinary tasks posed stiff challenges.
How do people muster the courage and determination to contend with such handicaps lifelong? How have severely disabled persons like Stephen Hawking and Helen Keller overcome impossible odds to become iconic inspirational figures for all of humanity?
Crippled by a rare disease, British theoretical physicist Stephen Hawking lost control over his body and gradually became completely paralysed. He is celebrated as one of the most brilliant living scientists. American author and activist Helen Keller became deaf and blind in infancy from scarlet fever.
She was a terrified little child imprisoned in dark, silent and complete isolation. Her dedicated teacher Anne Sullivan painstakingly taught her to speak, communicate in sign language, and read books in Braille. Helen Keller travelled to many countries. She campaigned for the rights of women, workers and disabled persons, and other social causes.
The brilliant scientist Albert Einstein had learning disabilities as a child. In his early years, he was slow in school. Today he is celebrated as one of the world’s greatest scientific minds. They demonstrate the immense talent and potential of disabled people, and the importance of assisting them to integrate into mainstream life.
Disabilities in seeing, hearing, speech and movement have long been recognised. But problems of the mind are only recently emerging from under the carpet. Mental retardation, mental illness, learning disabilities such as dyslexia, and issues such as autism and depression are only recently being acknowledged and tackled. New advanced treatments and therapies are being formulated. Growing public awareness is slowly lifting the veil of secrecy and stigma in which mental issues are shrouded.
India’s official Census 2011 shows 2.68 crore people in India as suffering from some form of disability. Disabled persons comprise 2.21% of the total population of our country. That huge number is larger than the entire population of many countries! Government’s efforts to generate employment and enhance skills are bearing fruit.
However, there’s a long way to go before all persons with disabilities (PWDs), rich and poor, from urban and rural areas, enjoy universal accessibility to essential facilities. Access to equal opportunities in education, transport, employment and a non-discriminating and disabled-friendly workspace and living environment is vital.
Only then will our society become fully inclusive. This is critical for enabling them to gain equal opportunity, live independently with dignity and participate fully in all aspects of life. Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995 provides for non-discrimination in transport, non-discrimination on the road and non-discrimination in built environment respectively.
United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), to which India is a signatory, casts obligations on the governments for ensuring to PWDs accessibility to information, transportation, physical environment, communication technology and accessibility to services as well as emergency services.
Individuals and associations are also pitching in to make this world a more comfortable place for our disabled fellow citizens. Several years ago, I was invited to a special camp organised by the Rotary Club in Bangalore. Doctors, paramedics and technicians had been brought all the way from Rajasthan to fit needy amputees with the miraculous Jaipur Foot.
Wheelchairs and other vital items were being distributed to grateful recipients. After some speeches, three men leapt up on the dais to dance and sing. Neither slickly dressed nor noticeably good-looking, they danced surprisingly well to Bollywood tunes. Their verve and enthusiasm was infectious. And then, the dancers transformed into magicians. They rolled up their trousers as they danced, revealing artificial legs strapped below their knee stumps.
Dancing on a single leg, the men then unbuckled their prosthetic legs and twirled them in the air to overwhelming applause. After the dance, they got down to work as technicians of prosthetic legs for other PWDs like themselves! This was the miracle of the affordable and easy-to-fit Jaipur Foot. Designed in India by Dr Ram Chander Sharma in 1968, it is benefitting countless people. A famous beneficiary is the brilliant dancer and actress Sudha Chandran.
Compelled to have her foot amputated at the age of 16, Sudha Chandran continued her career with tremendous effort and the help of the Jaipur Foot.
People with disabilities, both mental and physical, are now doing well not just in their jobs but also in life.
Thanks to improved health services and other support, PWDs are now emerging from seclusion to live longer and more fulfilling lives, and enriching the society with positive contributions. Famous inspirational disabled persons are many. There are also remarkable PWDs all around us.
Former Army officer Navin Gulia was a fighting-fit young man of 22 when an accident during military training forced him into a wheelchair for life. Spending another 22 years paralysed below the shoulders with restricted arm and hand movement, he continues to glow with infectious enthusiasm.
“I’ve never felt sad in my life,” he says. “Definitely not for myself. People tend to sink into depression, brooding ‘Why me?’ I say, ‘Why not me? Even Jesus Christ and Gandhiji suffered. Am I so special that I should be spared? What will I gain by being sad?”
Self-pity and negativity are not an option for this lifelong fighter. “The miracle is in being alive. If I ever meet god, I will thank him for what I have. The right attitude helps you deal with life. My self-esteem is high. I consider myself equal to others. After my accident, my sense of humour kept me going. I focused upon what to do with the rest of my life. I went on to earn my Master’s degree and studied Gandhian philosophy.” He has also authored a book, In Quest of the Last Victory, an inspirational story of his perseverance, fighting spirit and persistent efforts to achieve higher goals by stretching beyond his limitations.
Taking up the mantle of Directing Worker of ADAA (APNI DUNIYA APNA ASHIANA) came naturally to Navin Gulia. ADAA is an effort aimed at helping, assisting and guiding the lives of underprivileged, orphaned, abandoned and differently abled children in the weaker sections of society. “I wanted to give back something to society,” Navin Gulia says. “I connect very well with children and believe in doing the right thing, not to get attention and popularity, but because I want to be true to what I do.”
“Writing is such a powerful way to release emotions,” says Arundhati Nath of Guwahati, Assam, whose articles on travel, culture, parenting, current affairs and women’s and children’s issues are published worldwide. She’s even penned a book for children and trained in Hindustani classical vocal music while attending to her duties as an employee of State Bank of India. The first time I met her, it took me a while to accept that this charming young girl had just 25% residual vision, had been through multiple eye surgeries, and will need another one in 2018. She, along with her dignified and gently concerned parents, embodied courage and positivity.
Integrating productively into mainstream life wasn’t easy. “Apart from insensitive or sympathetic remarks about my eyes from people, I initially felt I was inadequate when I couldn’t even read the blackboard from the first bench in school. I never had a proper ‘aim in life’ like my classmates who wanted to be doctors or astronauts. I wasn’t confident of my abilities and loved music, science and literature equally, which is still a contradictory mix for higher education in India. In spite of scoring 98% — the highest marks in science in my Class 10 boards, I was discouraged from choosing the science stream because of my visual impairment. I still feel frustrated, but I’m thankful that there are plenty of wonderful books, websites, journals and videos which can take me back to the marvellous world of science. I do not have a degree in science or literature (as I’m a commerce graduate), but I’ll continue to learn more about both of these disciplines.”
“The incidents at school looked like trifles as I grew older,” Arundhati Nath shares. “Depression often reached its peak; and I went back to listening to music and Tedx talks on YouTube, and taking writing courses. I’ve been able to overcome my negative feelings because my parents have relentlessly supported and believed in me, introduced me to books and music very early, and have allowed me to take my decisions independently. I’m indebted to my school teachers: Aparajita Dutta, Ajit Kumar Misra, Rashmi Borkakoty, Mahua Das, Geeta Dutta and Bipasha Deka. In the growing up years, I took solace in music, reading children’s books, and writing stories and poetry.”
It’s all in the mind
Mental health issues have traditionally been treated with silence and denial in Indian society. Trouble and tensions smoulder under the surface. Many silently suffer or see others suffering in isolation, and would benefit from open discussions. Government and voluntary agencies as well as dedicated doctors and hospitals are providing valuable services to sufferers and their loved ones. They strive to bridge the practical and objective gaps regarding treatments and care facilities.
Meanwhile, Indian writers are trying to shed light and spread awareness on the subjective experience of mental illness. Authors Jerry Pinto in his book Em and the Big Hoom, and Amandeep Sandhu in Sepia Leaves, have artistically rendered the emotional alternate realities they have personally faced with their own suffering near and dear ones. Jerry Pinto has also edited A Book of Light, with pieces written by various authors, offering fictionalised or autobiographical accounts of dear ones with mental illness. These stories shed “light on the dark areas of pain and guilt and utter helplessness.” The family is our shelter from the pain, dangers and heartbreaks of the world outside. “But what if it is your mother who is wounding you and then soothing you by turns? What if it is your father who seems distant or desolate, living in a dark tower that you cannot enter?”
In his story in A Book of Light, Madhusudan Srinivas writes of the pressures to appear ‘normal’ regarding his own differently abled son. “Most of our children haven’t demanded anything of us, ever. It’s we who end up demanding a hell of a lot of them in our endeavour to meet society’s norms. To make the differently abled as non-different and as indistinguishable as we can” for the sake of gaining social acceptance.
Annabelle Furtado says, “There is no shame in telling my story. If it can help others understand that a breakdown doesn’t mean you are dysfunctional, I stand to be heard.” She points out something we all need to understand. “No one is merely crazy. We just don’t know how to describe or treat the illness. The lines between normal and abnormal are often so personal. What may seem normal to one may be abnormal to another.”
Such books help all of us understand the pain of coping, of suffering in isolation, the helplessness and lack of peace faced by the sufferers among us, and their caregivers. They spread awareness and sensitivity, and can enable us to better support and appreciate those around us of ‘a different mind’.
PWDs are shining and inspiring us in every sphere of life. Shekar Naik is a T20 Blind Cricket World Champion and has 32 centuries to his name. Arunima Sinha lost her leg when miscreants pushed her out of a moving train. She became the first woman amputee to climb Mount Everest. PWDs have the potential to excel despite odds. They do not want pity and to be looked down upon because of their handicaps. They can overcome their physical limitations with the help of a strong will. It is up to each of us to support them by boosting their morale and determination.
Motivation and optimism are the key. “If I had a choice to go back in time,” Arundhati Nath adds, “I would change my attitude and belief in myself. That would have eased so much heartache much earlier. It’s our own attitude that ultimately matters.”
Amandeep Sandhu has the final word on disability — “Life can sometimes be hard, but we can resist being crushed.”