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here can be no greater tragedy than an innocent child being born disabled. There are many children with mental or physical disabilities, who do not even know the meaning of the word “disability? But they survive. And they survive with courage ?/i> their willpower getting stronger as time passes. How does this happen? According to former U.S. President Richard M. Nixon, “Once one determines that he or she has a mission in life that is not going to be accomplished without a great deal of pain, and that the rewards in the end may not outweigh the pain ?/i> if you recognise historically that always happens, then when it comes, you survive it.?/font>
The will to survive is not confined to the disabled alone, but extends to the parents of the disabled child. Imagine the feelings of a mother who discovers that her newly born child is disabled! A report entitled “Charting the Inclusion of the Disabled?in The Indian Express dated 22 November, 2000 states: “‘Whenever a child is born with problems it is a mother’s challenge to see he survives, and I was determined that my baby would,?recalls an emotional Manju Chatterjee whose son was born prematurely and lurched from health crisis to crisis while she was shuttled between insensitive doctors. After months, she was finally told at the Holy Cross Hospital that he had Cerebral Palsy, a term she had never heard before. ‘He’s a vegetable,?they stated and I screamed and sobbed, while my heart cried out, ‘will he never call me ma???‘Doctors need to be more careful and gentle in their diagnosis. I shall never forget how they broke my heart with their hard words,?she adds.?Like Manju, there must be many mothers in similar circumstances ?/i> heartbroken and lost.
FORMING THE SPASTICS SOCIETY OF INDIA
The Spastics Society of India (SSI) was founded in Mumbai on 2 October, 1972 by Mithu Alur. The first ever special school in India for children with cerebral palsy was set up at Colaba in 1973. The school provided education and treatment facilities under one roof, and commenced with just three children ?/i> Malini, Farhan and Imtiaz. Since then, the Society has, through its national-level training programmes, helped to spread its services for the multiple disabled to 16 Indian States. Each of these is based on the original Colaba model and is independent, doing innovative work. The SSI in Mumbai now runs centres in Colaba, Dharavi, Bandra and Chembur, which have grown both in their capacity to accommodate the increasing number of students as well as improve the services offered.
Students attending the school services receive therapy on a priority basis. All young children receive individual sessions once a week and are part of Conductive Education sessions held thrice a week. Students who have undergone any form of intervention receive individual therapy thrice a week. The focus is on improving activities of daily living. Some group therapy sessions have also been introduced. Within a set timescale each child is assessed to identify his/her strengths and needs. Individual programmes are then devised for the child and support, counselling and advice offered to parents, if required. It is at this stage that the Centre for Special Education at Colaba, the founder-centre of the SSI, emphasizes to parents how important their role is in the further development of their child. This includes their involvement in the therapy programme; helping them understand that therapy is an ongoing daily process, not just confined to the therapy department.
AFTER AWARDS, MORE STRUGGLE
FORMING THE NATIONAL RESOURCE CENTRE FOR INCLUSION
An additional Kindergarten class was set up at the Resource Centre for Inclusion, the Bandra Branch of the SSI, to facilitate future inclusion of students (of 5 years and above) without disabilities into Standard I of regular schools. The Therapy Department works in close partnership with the Centre.
The Centre also concentrates on income generation through work experience. The department undertakes jobs for various reputed companies. The Computer Department has undertaken job-work for designing and DTP from reputed organisations such as the Confederation of Indian Industry, Godrej & Boyce Mfg. Co. Ltd., Bombay Gymkhana, etc. The Catering Department of the Centre executes orders for spices from well-known organisations. Reputed corporations also offer valuable work experience to the Centre’s trainers. A number of trainees have secured competitive employment in both private and public sector jobs.
UGAM - THE BEGINNING
Through thick and thin, the Ugam team has always stayed together. Some time ago a huge fire in Rajiv Gandhi Nagar destroyed Ugam - Asha and Ugam ? Prerana completely, along with 4,500 huts in the area. The next month was an exercise in crisis management. All the Ugam teachers volunteered to rebuild the Anganwadis: identifying the sites for relocation of the Anganwadis, making educational aids and providing assistance for upgrading lost records.
TOWARDS A SUSTAINABLE EXISTENCE
Over a period of time the Society grew and reached a stage when a choice had to be made either to discontinue providing services at the current scale or to change its path from a charity mould towards a more sustainable existence. Choosing the latter, the Society roped in various stakeholders viz. the beneficiary-child/student trainee, the family of the beneficiary, the staff and the service unit who provide the service, the organisation, the community and the Government to take on financial responsibility. The contribution of each stakeholder varies individually.
DIRECTION OF FUNDS
The remaining costs are directed to beneficiaries as fees. Since all parents and guardians are not able to pay the full fees, an amount is fixed per child based on the parents?ability to pay. The difference between what is charged as fees and the actual fees payable is met by raising sponsorships for the child from individuals and corporations at the micro school service level. Certain costs such as school vehicles, therapy equipment, etc. are met by approaching donors for specific funding.
REACHING NEW HEIGHTS
But Manju herself has reached new heights. For over 17 years she was a teacher and coordinator in various army schools. In the year 2000 Dr. Mithu Alur invited her to become Principal of the SSI. Moreover, she invited the mother of a disabled child, who would understand the feelings of other disabled children and their parents, to run the school.
Mithu Alur’s daughter, Malini, has obtained her Master’s degree in Women’s Studies at the Institute of Education, London and is a trustee of the SSI. What’s more, she has founded her own organisation, a Citizen Action Group called ADAPT (Able Disabled All People Together), the seeds of which were sown during a conference she attended on “Citizenship and Barriers?in November 2000*.
ADAPT, which is attached to the NRCI, was possible only because Malini’s mother, Mithu Alur, did not take her daughter’s cerebral palsy condition for granted. In Mahatma Gandhi’s words: “What is faith if it is not translated into action??Mithu did exactly that on the day of Gandhi Jayanti. By founding the Spastics Society of India on 2 October, she translated her faith into action. She virtually put the word “spastic?on the map of India, which not only helped Malini but millions of other children in similar circumstances. And, today, Mithu is a strong part of a national movement on fundamental rights and education, successful in including disability in the Census of 2001!
December 3 is World Disability Day. Let us all join hands and support Dr. Mithu Alur, for it is high time we disallow disability to become an impediment to the development and transformation of society. Rahul, a former student of the Spastics Society of India who started attending a normal school in Standard VIII at the age of 13 and is now in Welham Boys boarding school, has a message: “It will be tough but never lose hope, always go on, and you should look up to yourself and never forget that ‘I Can!’”