Resolutely Towards An Adarsh

By K Neelakantan

The story of the growth of a rehabilitation center for children with developmental delays, the problems arising from ignorance, lack of proper facilities, inadequate financial resources and how these were overcome.

• Language: English
• Publisher: One Point Six Technologies Pvt Ltd
• Release date: Dec 16, 2019
• ISBN: 9789389759105

K Neelakantan

K Neelakantan joined the Indian Railway Traffic Service in February 1959 and worked in Kerala, Tamilnadu, Andhra Pradesh, Odisha, West Bengal, Jharkhand, and Delhi. After 30 years, he worked for 10 years with Steel Authority of India, Rashtriya Ispat Nigam Ltd. Now lives in Bengaluru

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Preface

A few words about this book…

This is the story of the growth of a charitable trust, Adarsh, in the Ernakulam district of Kerala, and of the rehabilitation training centre it runs for children affected by cerebral palsy, autism, learning disorders and Down syndrome. It is based on the experience of a layman, who had the good fortune to be associated with the trust and its activities for its first 20 formative years.

This book explains in detail the efforts of Adarsh to avail of medical and surgical facilities of various disciplines to ameliorate the problems of those affected by these conditions. It explores the therapeutic methods adopted in the training of children and the optimum staff requirement, arrived at on an empirical basis. In addition, it discusses the financial constraints at each stage of development in great detail, as well as how they were overcome. Government initiatives in this field -- not merely by way of grants, but also in regard to guarding their future inheritance, concessions in travel and getting access to places of public congregation -- have been touched upon.

This book tells the stories of children who underwent training in Adarsh and achieved different degrees of ability to become independent. It explores, in great detail, activities in the community around Adarsh, in hospitals’ neo-natological units as well within the homes of children who are unable to attend a school, whether mainstream or special.

This book, however, suffers from the infirmities of a layman handling at least partly a technical subject. It has, therefore, very elementary details about these disabilities and how they are caused, but no explanation of why they are caused to some children and not others. The book does not deal with the following aspects:

•The latest developments in the medical field concerning these subjects.

•The latest developments in therapeutic methods and equipment available anywhere in the world.

I hope that this book will be of some use to the parents of children with severe developmental delays, who might not know where to go and whom to approach for support. It may also be of some interest to teachers, therapists and other staff working in rehabilitation centres, as well as those who manage such facilities.

Chapter I

Introduction

It had been suggested to me from time to time by a few friends that I should write my memoirs, recounting my experience in the railways and lately, with Adarsh. The one person who repeatedly made this request was the late Shri N. Gopalakrishnan, my colleague on the South Eastern Railways for over two decades. Even after we retired and settled down -- he at Kozhikkode and I at Ernakulam --we remained in very close touch. He was a dear friend and delightful companion, always ready with a joke or witticism appropriate to the occasion. He was of a literary bent too, and after retirement made a name for himself as a Malayalam author. A few others had put forth this suggestion after hearing me recall interesting anecdotes from my railway days. One of these was C. Balagopal, who started his career as an officer in the Indian Administrative Service in Manipur and later moved to Kerala. After leaving the government quite prematurely, he started a company in Thiruvananthapuram that manufactured blood bags. The company soon became the largest such unit in Asia (excluding Japan), employing over 1200 people, and today has the capacity to produce 22 million bags per annum. These bags are exported to over 64 countries.

Suggestions from such people, I had to take seriously. I knew that both of them were achievers and therefore, I felt that their suggestions had emanated only from their affection for me, overlooking my limited ability, particularly in the literary field. Shri Balagopal offered the suggestion after asking me about Adarsh and my experience there. This was during a casual conversation sometime in 2000, a year after I had started my association with the school. I mentioned that it seemed to me that all I had learned on the railways about dealing with people and getting things done seemed to be of no use in managing Adarsh. I meant this seriously, as the Indian Railways is a vertically-arranged organization, with different layers of authority giving orders to subordinate layers who carry them out -- though not always fully or in the manner intended. Adarsh, at least in the beginning, looked absolutely horizontal and no orders could be given to anyone, nor was there anyone willing to take them. After I had taken over as the director -- the original designation of the chief-- I was forced to suggest at one of the monthly meetings of the Executive Committee that we have a system of rotating the post of director every month among the 11 members. This was because there used to be a diarrhoea of suggestions, often ill-thought out, impractical, and put forth for the sake of saying something during the discussion. I think Balagopal and I had a fairly detailed chat on this issue and that is when he suggested that I should write a book on the management principles relevant to such organisations.

From time to time, I kept mulling this idea over in my mind. But diffidence overpowered whatever fleeting enthusiasm I felt for putting down on paper my experiences with Adarsh. A few years ago, when I happened to read Fali Nariman’s autobiography, ‘Before Memory Fades,’ the urge to write was felt again. But Nariman has such a delightful and engaging style, as well as a great story to tell, covering the entire span of his illustrious legal career and the realisation came to me that, perhaps, the only common factor between us was the worry that memory was fading. In his case, the apprehension seems to have been premature. Very recently, the Chief Justice of India, while seeking Nariman’s advice on a legal matter, described him as the most respected member of the bar. And with that realisation, the urge to write was immediately extinguished.

A couple of years ago, my dear friend Ramesh Grover got me a copy of Susmita Bagchi’s ‘Children of a Better God.’ When I started reading it, I felt that though I could not compare myself with the narrator of her story -- who is a well-known writer in Oriya -- there was one thing in common between us: neither of us had any background knowledge about the problem of disability when we decided to get involved with the field in a serious manner. Therefore, when the author wrote about her diffidence in getting fully engaged in this field, I could easily understand her feelings.

For over 40 years -- three decades working for the Railways and 10 years with the Steel Authority of India Ltd -- I had come across a few people with problems of locomotion, of vision or hearing and speech. In the office of the Divisional Railway Manager in Palakkad, where I worked between 1982 and 1984, I remember two brothers, both with severe muscular problems who used to come to the office on tricycles fitted with seats at an unusual height. They used to cycle from their house in the Railway colony to the office. At the office, they had to be helped to get down and to reach their seats on the first floor. I was told by the personnel officer in whose office they worked that they were diligent and sincere in their work. After the day’s work, they had to repeat the same operation in the reverse direction. Fortunately, traffic was limited on the road connecting the colony and the office and so they faced no difficulty. Looking back now, I wonder why it did not occur to me to find them an office on the ground floor. That shows how little attention I paid to the problems of persons with disability.

Another employee was visually challenged (a phrase which I take care to use now but in those days, I would have referred to him as a blind person). He used to be at the reception desk at Palakkad Junction station, making announcements about the arrival and departure of trains and the corresponding platforms. He used to do this in a peculiar sing-song, nasal voice, not unpleasant at all. That he had been transferred to another station on the adjacent Trivandrum division I realised only a few months later, when during one of my early morning walks, I saw a young lady in an advanced stage of pregnancy guiding a visually-challenged person to the trains. I recognised the announcer upon coming closer, and learnt that the lady was his wife -- she also worked in the divisional office -- and that he had been transferred to Trichur a few months earlier. Repeated appeals to avoid this transfer fell on deaf ears, perhaps including mine. I was able to intercede and get him back to Palakkad. I used to take pride in this great act of kindness on my part, but now feel that it was a relatively trivial effort.

On the Southern Railway then was a gentleman named Shri A.V. Subramanian, Chief Personnel Officer, who was unique in that he realised that rules were meant to protect and help members of staff and this realisation was reflected in all his actions and orders. During his tenure, the Southern Railway received an award from the Government of India for fulfilling a quota of disabled persons in employment. When the general manager, the head of the Railway, congratulated him on this at a meeting of the heads of departments, one of them -- known for his flippant and acerbic comments -- sneered at this achievement with an under-the-breath remark: As it is, efficiency has gone down so much thanks to the reservation policy. Now we are going to fill our offices with deaf, dumb, blind and lame fellows. God help us. This remark did not elicit any great protest. Most of us who attended the meeting did not, perhaps, think differently.

A few months after I retired to Kochi in 1998, and the inevitable problems of a shift in residence were all smoothened out, I felt I had the time and energy to do something more than read the newspapers or a few pages of a book which had caught my fancy, to do something more meaningful. I then recalled a chance remark by my daughter a few months earlier that I could, perhaps, work with what was then called the Spastic Society. Neither she nor I then knew if one existed in Kochi. She had a friend who volunteered her services to the one in Chennai and enjoyed the work. That idea led me to a rehabilitation centre in Kochi for children affected by mental disabilities and Down syndrome. It is run by the Sisters of Sacred Heart and had over 150 children, as well as some adults who had joined as children. I found it to be exceedingly well run with a team of dedicated and efficient teachers. A very well-equipped vocational training section, particularly the carpentry section, was a noteworthy feature of Snehanilayam. After a few weeks of getting to know the general layout and the problems faced by children with special needs, I started teaching a few children on a one-on-one basis. That was not only a novel and enjoyable experience for me, wallowing in the affection of the children I was teaching, but it also opened my eyes to the numerous problems of the disabled, a term no longer used in polite conversation. I came to realise that a person with problems like cerebral palsy or autism does not necessarily lack in intelligence or in other emotions like love, affection, anger, jealousy, etc.

Talking of polite conversation, a generation or two ago it was quite common to hear crude and hurtful remarks aimed at persons with disability like that blind fellow or lame fellow. In fact, it was not considered indecent or impolite to even call a person with impaired hearing eda potta in Malayalam. But with refinement in our societal manners, such crude and often cruel language was replaced by sophisticated usage. Perhaps a stage might soon be reached when we hear reference to vertically challenged and ethically challenged people. While this is a welcome development, often I wonder if it has not been carried too far. Any normal society consists of a vast majority of people of ordinary ability who go about their lives in a very ordinary way and this they are able to do because they do not have any problems in locomotion, eyesight, hearing or smell. If there is a deficiency in any of these, their normal life would be affected, the degree of such deprivation depending on the degree of impairment. Yet, in informed and even in ordinary conversations, we hear of persons with problems being referred to as differently abled. Those who are gifted with an artistic talent can become good or great artists, notwithstanding a disability, but a disability does affect any person to the extent of her disability. A rose, called by any other name, would smell as sweet, said the Bard of Avon. Disability, on the other hand, even with any extent of refinement in its name, would still be a problem. Unless it is detected in time and scientific remedial action is taken to lessen its impact, it will always remain a problem.

I digress. Eighteen months of association with Snehanilayam opened my eyes, as it were, to a field where so much needed to be done and to the fact that anybody with common sense (perhaps not so common) and a lot of patience could make a difference in the lives of children with special needs. This belief got reinforced by observing a number of parents and the differences in the development of children similarly placed in the matter of their problems. My association with Adarsh in later years convinced me that the most essential prerequisites for development of children with disabilities is an approach suffused with common sense, patience and understanding. Specialised training in special education definitely helps to improve these characteristics. Adarsh had followed, right from the beginning, a policy of permitting -- in fact, asking -- mothers of children who attended the rehabilitation centre to be present during the sessions. This is essential in the case of tiny tots who need their mothers’ presence during the sessions, but it is being encouraged even for older children, except in the very few instances when a parent or caretaker was seen to be interfering with the sessions and whose presence was, therefore, objected to by the teachers, therapists or other parents. A very novel and new development in Adarsh in the last few years is that of the father instead of the mother bringing the child to the school and remaining with him or her during the rehabilitation training sessions. This would, obviously, mean attending to the toilet needs of the child and feeding, normally considered to be the sole job of the mother. A significant change indeed for a rural and largely patriarchal society!

Just as a chance remark from my daughter led me to Snehanilayam, another innocuous suggestion from