How Swabhiman Came into Being.
After the accident which left her spinal cord severely injured, Dr Sruti Mohapatra took to books. She was in a hurry to understand what had happened to her. Her first book was ‘Joni’ by Joni Eareckson. Joni Eareckson had broken her neck in a diving accident and was paralysed. After months in hospital and rehabilitation centres, Joni learnt to live with the fact that she could never lead a normal life again. For every act of daily living, she needed support. With the support of her family and her friends, Joni learnt to live an active life and accepted the help with dignity. She also read ‘Take my Hands’ by Dr Mary Verghese, the doctor on a wheelchair. After that, her next reading was about Stephen Hawking. Each of these stories infused her with the hope to start a new life, with a slower pace and often with assistance, back home in Odisha.
However, homecoming proved to be painful and perplexing. Shunned by society and humiliated at every step, she had become shy and soon she weaved a cocoon around her. She would interact just with her family, no one else was allowed in her cocoon. It was the Himalayan support of her parents and the love of her family which slowly gave her the strength to regain her confidence and look at life with a leonine zeal.
Her endeavour after that was a story of several pages, be it her going back to the University, earning a PhD, facing nth rejections while job hunting or starting a study circle. Long and short of the stories is that perseverance and hard work are the only two keys to reaching goals successfully. In 1989, Dr Mohapatra had started volunteering. Her sister, who got married the same year and left for the USA, sent her books and journals which fuelled her hunger for independent and dignified living. Every page she turned gave her new dreams of living with her rights respected and protected. She corresponded with many of the addresses and telephone numbers in the magazines learning more with every turning page.
Dr Mohapatra volunteered with the Odisha State Red Cross and visited Shanta Memorial Rehabilitation Centre. In 1995, she joined the disability movement in India with the protest for passage of the Disability Act in the Parliament. In 1996, with the formation of National Disability Network (NDN), India’s chapter of DPI, she travelled extensively around the world and visited many schools, attended many conferences, spoke in many meetings and enriched herself on the issue of disability.
What struck her was the stark difference in the quality of life of persons with disabilities in India and South-Asia as compared to other countries. She had already got a lot of knowledge from the magazines she was reading but the practical viewing was stupendous. Disabled people were considered as second class citizens in our country, who lived to die. Persons with disabilities had no place in the society. They were confined to rooms at homes in urban areas, special schools or vocational training centres, buildings of various associations for the disabled or to the beds in hospitals. Dr Mohapatra refused to yield to the society’s then norms. Disabled people were as much human as anyone else. Dr Mohapatra herself couldn’t walk, but she could think, speak, see and perceive like anyone else.
The 1999 Super cyclone in Odisha was her first and direct involvement in disability work at grassroots’ level. The death, the stench, the fear and the destruction so close to life, unsettled her. And in 2000, she had an opportunity to visit Erasama with team from Action Aid. The death, destruction and suffering of people devastated her. She couldn’t fathom the depth of suffering of those disabled by the cyclone and those who were earlier disabled and were now mutilated by the cyclone.
In 2000, the Action Aid team led by program officer Madhumita Ray suggested that Dr Mohapatra initiate an NGO to work for the cause of disability. She was then busy putting together a platform where children with disabilities and those without could spend a few days and enjoy hands-on activities. Her exposure in the USA of children studying and playing together had convinced her that children were the ambassadors of a cause. For visibility of the disabled, disabled and non-disabled children together had to have a meeting point. She had met 21 officers and important decision-makers in various organizations and the concept had been rejected.
The 22nd meeting was with Ms Sukanya Rath, the Child Rights and Information Officer of UNICEF, Orissa office in 2001. “Why not! How wonderful…”, was the response. Ms Sukanya Rath is a lady of immense vision and dynamism. Enthusiastic and active, she said “Let’s get doing!” Dr Mohapatra had known her since they were in college. They were a group of young, bubbly people, who had founded GLASH, an amateur music group which had become the talk of the town in the 1980s.
The 23rd meeting was with Mr R. Balakrishnan, the then Secretary, Culture and Tourism (GoO). Never before had Dr Mohapatra met a more sensitive and empathetic government officer. “Sruti, we should have a world-class event someday, can you promise me that?”, was all he said. And thus, Anjali was born in December 2001.
In 2001, we started an office of Swabhiman in Dr Mohapatra’s residence, and by 2002, Swabhiman was a registered non-profit with an identity of its own in terms of a Governing Body, a bank account and byelaws. Dr Mohapatra personally believes that more than a piddly disability pension, what people with disabilities need is information. With the right information, at the right time, each person with a disability is capable of taking care of his/her own life and living with dignity. And that is what Swabhiman strives for.