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A therapy session in progress.
__________________________
3 December is World Disability Day. Thanks to the Spastics Society of India, there
is no longer the question of survival of the disabled. The marvellous work done by the SSI should encourage not only disabled and backward children to attend school, but also all those teachers, principals and, above all, mothers who strive to improve
the future of such children.
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PUTTING “SPASTIC?
ON THE INDIAN MAP

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
But one strong mother named Mithu Alur, who surmounted this tragedy, made all the difference. Following the birth of her daughter Malini in 1966, diagnosed with cerebral palsy, Mithu found that there were no proper schools for children with disabilities. After training as a teacher in the field of Special Education at the Institute of Education, University of London in 1968, she returned to India and decided to start a school for disabled children on the same pattern as the ones in London, the aim being to alert the nation to the needs of children with cerebral palsy and to educate and treat such children.

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.


Participating at a conference held at the Taj Mahal Hotel, Mumbai, to address issues of access and to increase awareness of the problems created as a result of barriers to access, are (standing, from left) Mithu Alur, Founder-Chairperson, the Spastics Society of India, Anita Prabhu, Co-Chair, ADAPT, V. Ranganathan, Chief Secretary, Government of Maharashtra, Jo-Lynn Sutherland, D.R. Mehta, former Chairman, SEBI, Arvind Jolly, President, Indian Merchants Chamber, with (seated) Malini Chib, daughter of Mithu Alur and Chairperson, ADAPT.

THERAPY DEPARTMENT
The services of the Therapy Department involve children attending regular school and the ones attending the Outpatient Department.

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
In 1987 the SSI received the National Award from the Government of India for the “Best Voluntary Agency? Mithu was awarded the Padma Shri in 1989 by the President of India for the work she had done over the past 17 years. But Mithu’s struggles were far from over. She still wanted to change the mindset of the people and the Government. Disability was considered a curse in Indian society, and was discriminated against. Mithu had to educate the Indian public about the word “spastic? Even the Government’s own statistics for disability reported that 98 per cent of disabled people and children were out of the ambit of services. Voluntary agencies functioning in the metropolitan areas couldn’t reach them.


Adult trainees learn about employment opportunities at the National Job Development Centre, Chembur.

FORMING THE NATIONAL RESOURCE CENTRE FOR INCLUSION
This made it even more crucial for the SSI to improve the quality of education for all children. Mithu went back to the Institute of Education, University of London in 1998 to do her Ph.D. on “Invisible Children ?/i> A Study of Policy Exclusion? She realised that children in India (particularly the girl child and street and slum children) needed education rather than welfare. This meant a change in policy, the aim being to create demonstration models which would include normal and disabled children together, regardless of gender, class, religion or caste and within the framework of human rights and social justice. The National Resource Centre for Inclusion (NRCI), an Indo-Canadian project, a partnership initiative between the Spastics Society of India and the Roeher Institute in Canada that believes in the inclusion of all children, was formed.

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.

SECURING EMPLOYMENT
The SSI also boasts of a vocational wing called the National Job Development Centre at its Chembur Branch. The Centre offers a range of services, facilities, and most importantly, job-skill training programmes to all sections of the community, exemplifying the concept of inclusion. However, central to its focus is the promotion of employment opportunities for its trainees through intensive job skills and social skills training.

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
Just as a playschool is like a pre-school for tiny tots, Ugam (meaning “beginning? is SSI’s pre-school in Dharavi. Five Anganwadis or pre-school centres, namely Asha, Prerana, Maitri, Jyoti and Shanti, have been started in pockets of Dharavi where both normal and disabled children (older than five years, but who have had no access to educational services earlier) are encouraged to join. “I’m going to go to a big school from June. I’m going to study to become a teacher,?says nine-year-old Shital, who suffers from cerebral palsy and was attending Ugam ?Prerana. Shital was denied admission to the ICDS Anganwadi and also in the BMC school because she cannot walk, talk clearly or write. She was not given any opportunities to interact with other children nor for education or development. At Ugam, Shital attended regularly, received nutrition supplements and had friends who helped her come to school. Today, she has been integrated into a municipal primary school.

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.


(R-L): Mithu Alur explains the SSI’s educational activities to Canadian visitors Judith Manley, the Hon. John Manley, Deputy Prime Minister of Canada, and His Excellency Peter Sutherland, High Commissioner of Canada, at the Colaba Centre for Special Education. Also seen are children of the Transition class.

TOWARDS A SUSTAINABLE EXISTENCE
The Society initially operated on a charity model where, besides education and therapeutic services, all other facilities, including nutrition, uniforms, transport, books, resource materials and aids and appliances were provided at no cost to the beneficiaries. The funds came through ad-hoc grants from the Government and from donations and other fund-raising programmes.

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
There are three different categories of costs allocated to the Society’s services ?/i> staff costs, operating costs and property related costs. Once the cost per service is worked out, an attempt is made to work out the cost per annum per beneficiary. For example, at the school service level, the cost per beneficiary reflects the cost of education, therapy, nutrition, uniforms, books, resource material?that the SSI incurs per child per annum. The SSI subsidises these costs per beneficiary, and it is this subsidised amount which is funded by fund-raising on a macro level.

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
Keeping Richard Nixon’s words in mind, yes, there is a great deal of pain when a child is born disabled. But thanks to the Spastics Society of India, there is no longer the question of survival of the disabled and the rewards surely outweigh the pain. The marvellous work done by the SSI should encourage not only disabled and backward children to attend school, but also all those teachers, principals and, above all, mothers who strive to improve the future of such children. Manju Chatterjee’s son, Toshan (meaning “satisfaction?, a Standard IX student of SSI, is today like any other normal child ?/i> in fact with a higher IQ than a normal child. With a special interest in computers, math and science, Toshan wants to become a computer engineer.


Children of the Spastics Society of India enjoy an art and craft workshop.

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!’”

Rashna Ardesher

* (More on ADAPT in a later issure.)

 

Heaven's Sp

A meeting was held quite far from the earth,
It’s time again for another birth,
Said the Angels to the Lord above,
This special child will need much love,

Her progress may seem very slow,
Accomplishments she may not know,
And she’ll require extra care,
From folks that she will meet down there,

She may not run or walk or play,
Her thoughts might seem quite far away,
In many ways she won’t adapt,
And she will be known as handicapped,

ecial Child

So let’s be careful where she’s sent,
We want her life to be content;
Please Lord find the parents who
Will do a special job for you.

They will not realise right away,
The leading role they are asked to play,
But with this child sent from above,
Comes stronger faith and richer love,

And soon they’ll know the privilege given,
In caring for this gift from heaven,
Their precious charge so meek and mild,
Is heaven’s very special child.