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Book on SMRC A-PDF Merger DEMO : Purchase from www.A-PDF.com to remove the watermark My Life I was born in Gwalior on 20th Oct’ 1950 into a refugee family from West devastating for our family as our mother had passed away only a year Pakistan. A year later we moved to Bhubaneswar where I spent my early ago with leukemia (cancer). childhood & underwent schooling. Later I was sent to a school in Dehra Doon as I was handful for my parents who were struggling to survive Life, they say, must go on and soon I under went rehabilitation training under economically after having lost every thing during the partition. I completed Dr. Mary Verghese who was a pioneer in spinal cord injuries management my schooling from Sainik School and Graduated from St.Xavier’s College, and a paraplegic herself. This empowered me and the family to face the Calcutta. world as it was. On returning home I began my quest for socio-economic independence and acceptance. I was confident that, the position we enjoyed in society, it would be a matter of time that I would be back to active living. It was not to be. The same society would sympathise and assure, but, During school, I took active part in debating, elocution, dramatics and all a look at my wheel chair was enough for them to ignore my abilities. This round sporting activities. Won several continued over the next nine years and I was depressed yet looking for an prizes and was selected as School Captain. opportunity that, would give me a full and a productive life. During the intervening period between school and college, took up flying, rock I was very young and knew that this was very important to my future. climbing, trekking and traveled to After knocking at different doors - banks, government offices, corporate and different parts of the country. I led business houses, I found each door shutting and no response. Finally I the NCC contingent at Republic Parade managed to get a petrol pump of the Indian Oil Company for management in Delhi and was selected for the by persons with disabilities. Running it, was tough, but I was prepared to Himalayan Mountaineering Institution. face the challenge. I was a new tetraplaegic and could not sit more that During college I pursued cricket and few hours a day. The oil company provided me with a kiosk, which was was selected to play for the college & inaccessible. The company personnel finally decided that a person who did later for the University. In 1971 I not sit in an office 17 hours- 6 am to 11 p.m. a day could not run it, took part in the Second Asian Motor though owners with no disability were running it from their homes and Car Rally from Tehran to Dhaka. other offices. Education over in 1972, I took up a job as Sales Executive in Avery India In 1984, the first support came from a sister’s friend Neena Kapoor who Ltd. I think the enriching experience from the variety of schools and a helped me get air tickets to the United States. I visited innumerable institutes range of other activities laid a strong foundation for the future. My hard dealing with disabilities and met a large number of activists. It was for working parents saw in me as one who would take up the household’s me a visit which deeply impacted my very being and I was convinced that, future responsibilities. This was not to be as on a cool October afternoon such were the initiatives that, I would pursue for the rest of my life. of 1974 while riding home on a motorbike I was hit from behind by a Marcellino Heurta Jr. of the J. Clifford MacDonald Centre (USA), Carol Anne car driven by a fourteen year old. Witnesses later told me that, I was flung Robersone of the New York’s Mayor’s Office impacted me with their dedication, over the car headlong into the open drain. Later in hospital I learnt that the latter in her work in getting the American Disabilities Act passed. a few vertebras behind my neck had being crushed and my spinal cord had been severely damaged. I was irreversibly paralyzed below my neck While visiting the MacDonald center for the adult with developmental for life after a lamenectomy was carried out a month later. This was disabilities in Tampa, Florida during my visit to the US, a young person came to me with a potted Christmas plant and said, “I have created this”. I was extremely moved and at that moment I decided to spend rest of life to work for with persons with disabilities. SMRC would be a creation of persons with disabilities. Another fascinating visit was to the Kessler Institute for Rehabilitation where later Christopher Reeves (Superman) was to undergo rehabilitation after a spinal injury. It was a fascinating world where people like me regained not only physical but also mental strength. A group of young Oriya and American students and the famous writer Dominique Lappeire who invited me to France to the St. Vivien’s Institute for Congenital disabilities showed what Cricket Captain (Front Row) civil society could do. 3 Starting SMRC On 18th July 1985, Shanta Memorial Rehabilitation Centre (SMRC) was a handful of us worked, going from village to village assisting persons with registered under the Societies Act 1860 as a non profit NGO in Bhubaneswar, disabilities whichever way we could. the temple and capital city of Orissa. This society would work and advocate the mainstreaming of people with disabilities in all walks of life on equal terms in society with dignity. I took this up as a mission of life Fighting for Our Rights to fight discrimination, change attitudes and work with people with disabilities in a manner, we could achieve our aspirations, destinies and Once while traveling from Madras, to Bhubaneswar at the Madras Central, freedom to make informed choices like any other person. the railway superintendent said that, my wheel chair be weighed along with my luggage. When I told him I needed it to be able to board the train I have been very lucky to get the support of many organizations and and when getting down he finally allowed it after a prolonged argument institutions. The most encouraging being International Medical Society of and sit down strike. While traveling in the train a senior railway official Paraplegia (IMSOP), Global Forum for Health Research and Rehabilitation again asked me as to why my wheel chair was in the compartment and International, Offices of the Persons with Disabilities in India and abroad. not in the luggage van and at the next station it should be removed. We Their consistent support has guided us through the many years. had to take up the issue at the highest government level for this small Shanta Memorial Rehabilitation Centre always had visions much before their time and maybe that is why it was difficult to get funding. Funding agencies were not prepared for us and it took decades to make government and organizations to recognize disabilities issues as being important. The journey in the process of setting up the centre over the last twenty years or more has thus been challenging. Money was not the only problem which most DPOs face. There were other problems, most important getting society and the government to accept our ideas and programmes- WHO, for instance, in the early eighties, wrote to me that Spinal Cord Injury was not a health priority. Except OXFAM and later Action Aid, no one else was willing to support, a non-medical approach to disability rehabilitation. For a decade, Taking forward the Disability Movement 4 Collaborating for the Asia Pacific Solidarity matter but enclosed the larger one of accessibility in trains and special Act. In 1995 when it was passed, we launched a programme for its berths for us. Since then we have come a long way now in the new implementation. This was carried out in each District of the State. While millennium and there is greater awareness and understanding. Though there we took the issue forward in Delhi, the Joint District Forum was formed are miles to go. to work at the State level to create awareness among the government officials, DPOs and persons with disabilities. This incident in 1985 prompted me to set up an Advocacy Programme in Orissa for the Rights of the Persons with disabilities and a Joint Forum of In coordination with the National Movement a programme was launched Persons with disabilities was formed. One major campaign which again for the implementation of the Disability Act with its notification in Orissa merged into the National one was the push for a National Act. It was not in 1997. Many branches soon were formed - some like SHARE: (Shared easy and for nearly a decade many of us in India jointly and sometimes Adventure, Recreation, and Entertainment) which SMRC set up under the on our own promoted the cause. From 1985 to 1995 I fought at each leadership of Gourang Sinha, our physiotherapist, in 1996, had a number level joining hand with many activists across India for a National Disability of latter day disability activists who began working on disability issues, Shruti Mahapatra, Innu Singh, Nilmadhav and Indira Pattnaik started with SHARE. The forum spread to all Districts and carried out many Campaigns till DPI came into the State and decided they would charter their own course. So we wound up the Forum as duplication of scarce resources is never good.
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