Volume 2 Issue 24 - December 15, 2004
"If you do not move fast enough, you will be run over"
C. Antony Samy talks about his life-long passion in the rehabilitation of persons with disabilities.
Having completed your engineering from the USA, what made you gravitate towards the disability sector in India?
My interest in disabilities is from an early age. Maybe it is because in my family there were many disabled people with whom I grew up and admired. Perhaps it is the guidance my parents provided, of looking at disabilities not as a negative point, but as a positive element.
While doing my Engineering degree in India, I was very impressed by Late Kamala Nimkar, who was an American married to an Indian industrialist and very much involved in the rehabilitation movement in India. She was an Occupational Therapist and was very deeply involved in motivating persons with disabilities.
In the U.S.A., the subject I choose for my Masters term paper was on how to alter equipment for disabled people, so that disabled people can work on machines, and what kind of adaptations could be done to buildings to make them accessible. So, although I graduated with an M.S. in Industrial Engineering, my interest remained in the rehabilitation of persons with disabilities.
When I returned to India, on a holiday, I met Robert Bruce, now Lord Balfour of Burleigh, who was then the General Manager of English Electric Company. He told me that he and some friends, including the famous hand surgeon, Paul Brand, had plans to set up a workshop for disabled people. But for the moment, that was all: plans. They had no facilities or funds.
In the meantime, the Swedish Red Cross (SRC) had set up the domiciliary treatment programme for leprosy affected people. Leprosy then was endemic in North Arcot district of Tamil Nadu. Dr. Brand convinced the SRC to finance a training cum production workshop for people affected by leprosy. This came into existence in Katpadi.
The SRC insisted that the industry must be entirely self supporting and that it must be an integrated unit, which would provide vocational training and employment to not only leprosy affected people, but also to all categories of persons with disabilities. It foresaw that this workshop would become self-supporting and formulated the purpose in which this workshop would become a model.
Having seen the unit reach self-sufficiency, SRC quietly withdrew after forming the WORTH Trust and handing over the responsibilities to selected Trustees in India.
The WORTH Trust handles work in many diverse fields – training, education, agriculture, etc. Tell us something about your work.
The sequence of the different activities was a natural phenomenon. When WORTH started doing rehabilitation activities, it employed leprosy affected and other disabled people, most of whom have had no education at all and have never seen any production machines in their lives. They were attracted by the opportunity and “hope in a world of hopelessness”.
As the production activities grew, more and more machines were added and more and more people were employed. But there was a limit to this growth.
It was then realised that the unit cannot grow any more if it has to retain its efficiency. It had to limit its employees to a certain optimum size. However, the demand for employment was so much that it was decided to establish a separate Technical Training Centre.
The state government encouraged this Technical Training Centre to come under the Government of India’s NCVT (National Council for Vocational Trades) programme. So, a separate Technical Training Centre was established.
The NCVT training stipulated a minimum educational level for the trainees and unfortunately most of the disabled persons had very little education. It was realised that children affected by leprosy or polio were generally abandoned. Having spent money in visiting pilgrimage centres, expecting miracles and not finding any and being unable to spend the time and money for the expensive and prolonged medical treatment, disabled children were cared for in their homes and grow up without any education or rehabilitation efforts.
To counteract this problem, a Residential Transitional School for Children with Orthopaedic Disabilities was started and children in the age group of four to 10 were brought to this school. They were given the needed physiotherapy and medical treatment in the Christian Medical College and Hospital and, if necessary, fitted with calipers, bracers or just provided with crutches, thus enabling them to walk.
During the two to three years of stay in the school, children who came crawling were made to walk and also get education, so that they reach the level which they should have, had they been attending school like other children. Most children with disabilities, who had missed schooling, were very talented and made use of the opportunity. They were integrated into regular schools nearer their homes and were encouraged to come back to the school if they needed any facilities regarding assistive devices.
A small orthotic centre, attached to the school, was able to repair and return the equipment mostly on the same day, even as the children waited. These children attending regular schools along with other children have now reached a certain level in society. Some of them achieved distinction in their fields; they are auditors, engineers, etc.
This particular school, after 24 years of operation and rehabilitating nearly 800 children, has now been converted into a Transitional School for children with Speech and Hearing Disabilities. This is mainly because polio is now under control. So, the number of children with physical disabilities has come down and a number of small centres have cropped up, which can very easily take care of the few children who have disabilities.
About 80 acres of land belonging to St. Joseph’s College, Tiruchirapalli, was made available to us. A poultry, dairy and agricultural training programme was started in this. From 3 acres of arable land, this farm was converted into flourishing agricultural land of 40 acres and more than 100 hybrid cows were kept, as well as about 3000 chickens. Disabled persons were trained in agriculture, horticulture and poultry keeping and dairy. This particular scheme came to an end because the owners of the land wanted the land to be returned to them. The Trust now runs with no agriculture or dairy programmes.
The successful experiment in Katpadi was duplicated in two other places – in Tiruchirapalli and Pondicherry, where production workshops as well as a Technical Training Centre have been established in each place. The basic idea is that the production workshop, which employs a majority of persons with disabilities, generate a surplus to take care of the cost of the residential training centres, where training is provided free of cost to persons with disabilities.
We also repair and service Energy Meters produced by BHEL, which have been in use by the Tamil Nadu Electricity Board. This is being tried so that people with severe disabilities, including those who are using wheelchairs, can be trained in repairing them.
In collaboration with Christian Medical College and Hospital, Vellore, and IIT, Bombay, WORTH is producing motorised electric hands. The advantage is that they are produced by persons with disabilities and are cost only Rs 5,000 for ‘Below Elbow’ and about Rs 10,000 for ‘Above Elbow’ amputees. The alternatives -- imported ones -- cost at least Rs 2 lakh. The electric hands that we produce are easy to maintain and can withstand rough use.
What is the Brailler Project?
The world’s best Braillers are made by the Perkins School for the Blind – Howe Press in Watertown, USA. For more than 40 years, these Braillers were imported to India and to other countries of the world.
About five years ago, a Brailler cost Rs. 35,000 (US$ 660) each. To import a Brailler, it had to be paid for by a donor abroad and one had to get permission from the Government of India to import, for which one needed the recommendation of the Social Welfare Department.
You can imagine the problems of individuals and schools which needed these Braillers. Where would they find a donor to pay for them? To get the import licence was another Herculean task.
In this situation, Gnanadurai Michael, the then in-charge of the South Asia office of the Christoffel Blindenmission, Germany and Nagarajan, the representative of Sight Savers International, U.K., two of the world’s biggest rehabilitation organisations in the area of blindness, contacted WORTH Trust. They offered the technical ability to produce these Braillers in India, so that they are easily available at a reasonable price in India.
CBM, Germany, supported this idea; so did the Perkins School for the Blind. So, disabled persons from WORTH Trust were sent to the Perkins School for training in the assembly of these Braillers. Technicians from the Howe Press of the Perkins School came to India and trained the technicians at WORTH. The Brailler Unit was then established.
WORTH assembles the Perkins Braillers and not only sells them in India and Asia, but also re-exports them to the Perkins School; thus earning foreign exchange. With this money and the subsidy provided through the Perkins School, the Braillers which cost more than Rs. 35,000 are readily available, on request, at less than Rs.10,000 in India.
In addition to this Brailler project, WORTH also runs two other facilities. In the Mobility Aids unit, wheelchairs, tricycles and walkers are produced. Rather than mass produce these, very often they are made to fit the individual needs of the patients who come to the Christian Medical College and Hospital. Various models of wheelchairs and tricycles, in various finishes are available. This unit does not generate a profit, but WORTH runs it as a service to persons with disabilities.
Industries of WORTH traditionally were making machined components out of metal. Some years ago, it was found out that plastic was replacing metal components, because they are cheaper and for some purpose better suited. So, it had set up a Plastic injection moulding unit and this makes industrial products for a number of industries. This is one more area where persons with disabilities are being trained and employed to demonstrate that they can be productive in that area also.
Since facilities are available, the Plastic Unit also produces a number of assistive devices for persons with visual disabilities, such as abacus, geometry sets, Braille slates, word building kits, etc. These are made to world quality standards and sold at a reasonable price.
Recently, working with Vidya Vrikshah, a non-profit Trust based in Chennai, WORTH has developed a Universal Braille Kit, which can be given to children with visual disabilities in schools, which contains all assistive devices needed for educating them.
You have worked with persons with disabilities around the globe. How do you apply your experience to the Indian context and condition?
My experience in other countries has allowed me to work both ways – to carry my experience in India to other countries, where I worked and to bring the knowledge I gained from other countries, back to India.
In Indonesia, where I worked for a year, many years ago, I was part of the team which tried community-based rehabilitation to provide vocational training and employment to persons with disabilities. It was a pioneering experience from which I learnt that it is not necessary to have an expensive sophisticated scheme to provide vocational rehabilitation and brought this experience to India.
Sudan was a very tragic case. The Sharia Law was applied and those who were convicted of theft and crimes were amputated. International NGOs were attempting to provide artificial limbs to those who were artificially made disabled.
I was also deputed to Vietnam to advice the Government on deciding policies on rehabilitation. With a bitter experience of the fight for independence from French, they considered every person, who fought for independence, even with a minor disability, as a disabled person, whereas, those who fought for the French or the Americans and were severely disabled, were denied the disability benefits. But working closely with the Government, I was able to encourage the introduction of uniform consideration of all disabled persons.
My experience from Kenya was used to advice the Government of Vietnam on providing a scheme for self-employment of disabled persons.
In Kenya, I worked for five years on the United Nation’s biggest project in providing vocational training and rehabilitation of persons with disabilities. A new scheme costing more than a million dollars was used to provide entrepreneurship training and capital for disabled persons to become self-employed. The experience I gained in WORTH Trust was used in establishing a vocational training centre and to encourage small production workshops including persons who are mentally challenged.
As a member of Workability International, an international association of organisations providing work for disabled persons in the world, I am aware of the facilities and the services provided by organisations for the disabled in Europe, the Americas, Australia and elsewhere. Many of these countries have workshops which provide employment for thousands of people, such as Remploy in the U.K., Samhalls in Sweden and NOSW in the Netherlands. There are many other organisations in France and other places.
In most countries now there is a pressure on the Government, which has been providing full financial support to these organizations, to re-evaluate their performance and encourage them to integrate disabled persons in open industry and thus reducing their dependency on the Government.
In India, except for some officials, in general, NGOs who work for disabled persons are not seen as partners in providing services for the disabled.
Thus my experience in other countries has enabled me to not only to share my experience from the country where I worked, but also gain from whatever advantage they had and benefit from it.
What is the situation in India vis-à-vis other countries that you have worked in?
In most developed countries, the Government sees the organizations that provide employment to persons with disabilities, as something that has to be supported and regulated only when necessary.
In India, the different Government departments do not apply the different good schemes that are being implemented. For example, under the ADIP scheme, the response from the Ministry is not very encouraging. As an NGO, we can understand the difficulty the Government faces in implementing programmes and, more importantly, in monitoring it. But there must be some system of evaluation of organisations which have served for a number of years, have been maintaining proper accounts and have been responding to needs more promptly and efficiently.
Those who have access to the corridors of power are able to reach the coffers of the Government, but not others, however hard they are working. The Labour and other Acts are to be amended, if there should be an encouragement. It took many years to have the Disability Act enacted, but it is not being implemented efficiently.
The SSA Scheme is supposed to be implemented in all states. In my own state, funds are not available for educating disabled persons or making assistive devices available to them. Even the Disability Scholarship that was earlier available to many persons with disabilities, is now not available. When we approach the Central Government, we are told that education is a State subject and when we ask the State Government we are told that funds are very limited. There are many difficulties. There is no forum through which these problems of organisations working for disabled people can be addressed.
In most countries of the world, both developing and developed, the Government is well aware that NGOs can provide service to persons with disabilities at a lesser cost than the Government and encourage them to be involved in this area as a social activity.
In India, our Government seems to feel that it has to control even in this area, even in the case of organisations which do not depend on grants from the Government. There is a general suspicion on the part of Government officials that all NGOs are to be looked at as “beggars” from the Government, someone who would misuse the funds.
On the other hand, it must also be said that very few countries, even in the developing world, has as many NGOs as we have in India, which are bogus and exist only for the benefit of those who run the organisation.
As regards providing services for disabled people, India has a long tradition when compared to other developing countries. Schools and rehabilitation centres for the disabled people have existed for more than a century and India can also be rightly proud of many institutions that have done yeomen service for the cause of disabled people.
In the area of community-based rehabilitation, we have very successful programmes run in India and we have many experts who have established their names even in the international sphere.
While India can be proud of its achievements, it has the potential to do much more, both in providing services for persons with disabilities and for being a field for providing training opportunities for those from other developing countries.
Why don’t you take donations or grants from the Government or even other people?
It is not true that we do not accept donations. WORTH was established by money donated by individuals and others in Sweden. It has received a number of grants from the state and central Governments. But now we have stopped applying for the grants for the simple reason that we do not agree with some of the ways these grants are made available.
i) Some years ago, the Ministry of Social Justice and Empowerment was giving grants to support organisations for disabled people, but we were told that these grants will not apply for us, since we generate a surplus.
The criteria should not be on whether a surplus is generated or not, but how this surplus is applied. As a matter of fact, if an organisation working for disabled persons generates a surplus, it must be supported by the Government, so that the assistance reaches more and more people. So, in effect, if an organisation is running inefficiently and makes a deficit, the Government will support it. This does not seem to be a right policy.
ii) We applied for funds from the NHFDC. It took more than one year to have a response from them and that too asking us to give a list of beneficiaries and the amounts that are to be distributed under that scheme. It took us one more year to get the amount granted, under protest.
If only the recipients were chosen and this delay had occurred, the clients would have blamed the NGO to have swallowed the money granted by the Government. The inefficient implementation of good schemes made by the Government causes problems.
Above all, we think that if an organisation which predominantly employs persons with disabilities is able to generate a surplus and spends this surplus to other rehabilitation activities that the Government is supposed to spend, it is a good model.
Since we are able to generate a surplus and spend the whole surplus for the welfare of disabled people in our outreach programme, education, Technical Training Centre, provision of assistive devices, etc, we would like to remain so.
Although we do not seek donations, if people do donate funds, we use it to provide facilities for disabled people using the entire finds without even using a part of it for our administrative expenses.
You are probably the first person to have established a replicable model of production workshops. Please give our readers some pointers on how they could themselves start something similar of their own.
I am not the first person to have established replicable models of workshops. Certainly there are some workshops in India, started by pioneers.
In Mumbai, even before the ’60s, Late Fatima Ismail established a good workshop, Fellowship for the Physically Handicapped. Late Vijay Merchant established and managed a workshop for the Blind. Late N.D. Diwan and Hema organised and managed one of the best Association for the Physically Handicapped in Bangalore. There were many others in Ahmedabad, Poona and other places. Unfortunately, they did not grow.
Establishing a production workshop for disabled persons is not difficult. The fear is because of our mental make up. Most workshops employ “persons without disabilities”, just after an interview, lasting a few minutes, sometimes even without that. However, as soon as we talk about employment of disabled persons, they will want all kinds of tests to be done, including psychology test, mobility test, dexterity test, etc -- and every one thinks of a reason as to why disabled persons CANNOT be employed.
Setting up a production workshop using persons with disabilities is no more difficult than establishing a production workshop using non-disabled persons. The venture should be based on an assured market for products, availability of raw material, availability of working capital, etc.
What should a company, which wants to employ disabled people, do to make the working environment disabled friendly?
A firm which wants to employ disabled persons must really open its eyes and have a deep desire to solve the problems and not just a vague interest. Its “wanting” should be impelled by conviction. It must learn from others. Rather than being discouraged by “obstacles” it must look at the “positive” aspects of employing persons with disabilities.
There are very good models of big organisations which provide employment to disabled persons. It might need some simple arrangements, such as accessibility using ramps instead of steps, or doors which are wider and more easily opened and closed. These are simple matters if one wants to employ persons with mobility disabilities.
Probably the easiest way is for those organisations who want to employ persons with disabilities is to contact an organisation which is working for disabled people and ask how this can be done. Maybe together they can look at the facilities and find out as to what kind of people with what kind of disabilities can best perform the assigned tasks.
Similarly, alterations to the equipment or physical facilities can be suggested. It is better to do some little preparatory work before one employs disabled persons. These persons with disabilities themselves would be able to suggest simple and effective ways of improving the work situation. Preparation of other employees is also important. It can make the atmosphere much friendlier.
They can perhaps start by placing people from their own organisation, who have become disabled due to some reason, rather than casting them away with some terminal benefits.
What are your sentiments on receiving the Helen Keller Award?
Frankly, I was embarrassed to receive this award. I was not aware when I was nominated and was informed of it by the colleague who had nominated me. The reason why I felt embarrassed is that I have been one of the Trustees of NCPEDP from its inception and I felt it was not fair that I receive it.
However, on thinking deeply, I feel I must be humble enough to receive this, since I will be honouring those like Rajiv Gandhi, whose vision and ideas were behind the establishment of NCPEDP. I was touched and elated and felt humble to receive this award.
What are your future plans for the WORTH Trust?
The future plans for WORTH Trust are always decided by the Board. Our Board feels that we have grown enough and that we must encourage others to grow. To this effect, we have always kept our facilities open to others to learn what we are doing and discuss their plans for development and take lessons from the mistakes that we have made.
WORTH has established, some years ago, a RETREC (Rehabilitation Training Resource Centre), but the facilities are not being used because of the lack of demand. It had provided training facilities for a group of people drawn from different NGOs of India on how to manage Technical Training Centres, production workshops, outreach programmes, etc, for persons with disabilities. This was run many years ago, but has not been followed since.
Of course, individuals from different organisations have come for training in their chosen areas, depending upon their own needs. These facilities have been used by a group of twelve trainees, who were deputed by ILO/UNESCAP, from Vietnam.
During this year, trainees from Kenya, Uganda, Malawi and Ethiopia were sponsored by Workability International for a capacity-building training programme. They not only attended the theory classes held at WORTH Trust at the RETREC, but also visited other rehabilitation centres in Tamil Nadu and Karnataka.
WORTH will probably increase its activities in providing training to other people.
WORTH Trust is changing with time. As it is wisely said, “Even if you are in the right track, if you do not move fast enough, you will be run over”.
For details, contact: C. Antony Samy, Managing Director, WORTH Trust, 48 New Thiruvalam Road, Katpadi 632 007, Vellore District, Tamil Nadu. Phone: 91-416-2242739; Email: email@example.com
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