institution builders in the disability sector

Institution Buildersin the

Disability Sector

Vedabhyas Kundu

Rehabilitation Council of India(A Statutory Body Under the

Ministry of Social Justice and Empowerment)23-A, Shivaji Marg, New Delhi - 110015

© RCI, New Delhi.

Published : 2003

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Contents

Foreword v

Preface vii

Introduction xi

Lal Advani 1

Beroz Vacha 13

Bhadraben and late Jagdishbhai Patel 25

Dr Bimalendu Narayan Roy 39

Dhun Adenwalla 47

Dr Edward Martin Johnson 53

Father Thomas Felix 65

Dr Leelavathy Patrick 79

Major H P S Ahluwalia 91

Madhukar Vishwanath Shirdhonkar 99

Dr P Hanumantha Rao 111

Prof P Jeyachandran 125

Dr Pramod Karan Sethi 135

Dr Rajendra T Vyas 149

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Rekha Roy 159

Dr Sharda Fatehpuria 169

Sudha Kaul 181

Sister Rita Mary 191

T D Shroff 199

Dr Thakur Hari Prasad 211

Dr Uma Tuli 225

ForewordKeeping in mind the endeavor of

the Rehabilitation Council of India topromote standardized training andservices for the persons with

disability, it was felt that a book profiling indvidualswho have been working for decades to provide qualityservices was the need of the hour.

In this backdrop, this book, “Institution Buildersin the Disability Sector” is an attempt to take forwardthe Council’s objectives and I hope many of theseinitiatives could be replicated in different parts of thecountry so as to reach the unreached. It is not possibleto feature all the institution builders in one volume andthe Council hopes to shortly start the process of bringingout the next volume which would feature moreinstitution builders in the disability sector in India.

It gives me immense pleasure in writing theforeword of this book, which has been written by ayoung writer, Vedabhyas Kundu, who has specialinterests in the disability sector and has been writingon it for the last several years. I hope the book will beuseful for not only those involved in the disabilitysector, but also journalists, researchers and in general

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those who are interested to know about the innovativework being done in the sector.

Major H P S AhluwaliaChairman,

Rehabilitation Council of India

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PrefaceThe Rehabilitation Council of

India through its focussed approachto improving the quality of life of thepersons with disability has beenevolving programs and schemes in

this direction. It is making an intensive and concertedeffort to promote a holistic approach to therehabilitation of all people regardless of the nature andextent of their disability.

While systematically reinforcing the Council’sobjectives of regulation and standardization of trainingprograms in disability, it is conscious of the need tohighlight commendable work being done in thedisability sector. For reaching the unreached withstandardized training programs it is important thatsuccessful training models are replicated. Variouschannels of communication will have to be used to makepeople aware of these successful models. In fact it goeswith the emerging need of putting in place an effectiveinformation dissemination process so that a largenumber of people are sensitized and educated on thework being done for the persons with disability in thecountry.

It is in this backdrop that the Council decided tobring out this book on Institution Builders in the DisabilitySector which specifically focuses on people who havebeen assiduously working to evolve institutions in thefield of disability. It highlights the work of thosepioneers who have inspired institutions that are

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imparting commendable service to the persons withdisability in the country. All these institutions have beenpromoting training and have a major role instandardization of services in the rehabilitation of thepersons with disability. They are the harbingers oftransforming the lives of persons with disability.

The Council felt that compiling the work of thestalwarts in the field of disability would give anopportunity not only to those in the sector, but alsomany others like journalists, researchers and otherprofessionals on the magnitude of the work being done.This is just the first volume of the book. It is not possibleto include all the stalwarts in one volume and theremay be quite a few whom we may have missed out. Itwould be the endeavor of the Council to include theirwork in the next volume.

The book is a special tribute to Mr Lal Advani, oneof the pioneering figures in the disability sector in India.Mr Advani has been responsible for initiating a largenumber of institutions, schemes and policies related todisability in the country. It is in this context, we aredevoting the first chapter to the commendable workdone by Mr Advani for more than six decades.

The book has been written by Vedabhyas Kundu,a journalist and activist who has been writing on theissue of disability for the last several years. He travelledaround the institutions and interviewed the pioneersin the field. His previous book, India’s Living Legends:Savants of Voluntary Action was an attempt to profile theleading voluntary activists of the country and this is acontinuation to it though focussing on those working

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for the persons with disability. I hope he continues inhis endeavor to write on the work being done byvolunteers in the country.

We hope the book would serve the purpose withwhich it has been brought out.

Lastly, I would like to quote GurudevRabindranath Tagore:

Where mind is without fearand the head is held high;Where knowledge is free;Where the world has not been broken up into

fragments by narrow domestic walls;Where words come out from the depth of truth;Where tireless striving stretches its arms towardsperfection;Where the clear stream of reason has not lost its way intothe dreary desert sand of dead habit;Where the mind is led forward by THEE into ever-widening thoughts and action;Into that heaven of freedom,My father, let my country awake.

Dr J P Singh,Member Secretary,

Rehabilitation Council of India

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Introduction

“Go ye forth,O Bhikhus, on your journey,for the welfare of the many,for the happiness of the many,out of compassion of the many, for the good,the benefit,the bliss of Gods and men.”

This is what Buddha said at the time of sendinghis first group of disciples to propagate the Doctrine inthe second year of his preaching. It is in fact thecompassion and the desire from the heart to do seva(work for welfare of others) that forms the guidingprinciples of many who dedicate themselves tovolunteer efforts.

For those whom I interviewed for this book, servicefor the persons with disability has been the mission. AsAlbert Schweitzer had said, “there is no higher religionthan human service”, these karmayogis have been workingfor decades with shear dedication. They have been ableto inspire institutions of excellence providingstandardized services to the persons with disability.Over the decades these institutions have becomeimportant centers for the total development of thepersons with disability, a section of the population thathas always been excluded from the mainstream.

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The models that I came across during the visits tothe institutions gave an insight into the efforts of thoseinterviewed to empower the persons with disability andfacilitate mainstreaming. Many of these endeavors needto be replicated in other parts of the country especiallyin rural areas where services for the persons withdisability are abysmal. One important lesson has beenthat issues related to disability need to be looked atholistically and not in piecemeal manner.

Also it is important that in order to providestandardized services to the persons with disability,training plays an important role. This aspect has beenan important component of the work of all those whomI interviewed.

I thank the Rehabilitation Council of India forgiving me this opportunity to write this book on theinstitution builders in the disability sector. Especially,I would like to thank the Member Secretary, Dr J P Singhfor giving constant guidance and inputs while writingthe book. Also I would like to thank Dr S K Mishra,Assistant Director in the Council who facilitated theinterviews in different parts of the country. Besides Iwould like to thank Mr S P Parasher who facilitated theprinting of the book.

I am grateful to all the institutions where I visitedand all those whom I interviewed during the course ofwriting the book for not only giving their precious timein helping me to understand the work they are doingbut also the hospitality they offered.

And of course there was active help from my friend,

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K Kannan, Principal Correspondent, The Hindu, whodid the editing of the book and Mr. S K Ghuna, whodid the proof reading.

Finally, as I try to assimilate and understand thework done by the institution builders who feature inthis book; their struggle and perseverance, I amreminded of a famous quote of Swami Vivekanandawho aptly said, “Great work requires great and persistenteffort for a long time. Neither need we trouble ourselves, if afew fail. It is in the nature of things that many should fall, thattroubles should come, that tremendous difficulties should arise,that selfishness and all the other devils in the human heartshould struggle hard, when they are about to be driven out bythe fire of spirituality.”

Vedabhyas Kundu

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About the BookAbout the BookAbout the BookAbout the BookAbout the Book

The Rehabilitation Councilof India has been ever since itsinception systematicallyreinforcing its obejctives ofregulation and standardizationof training programs in thedisability sector in the country.The Council is conscious of thefact that for reaching theunreached with standardizedtraining programs it is importantthat successful training modelsare replicated. Various channelsof communication will have to beused to make people aware ofthese successful models. It is inthis backdrop that the Coucildecided to bring out this bookon Institution Builders in theDisability Sector which focuseson people who have beenassiduously working to evolveinstitutions in the field ofdisability. It highlights the workof pioneers who have inspiredinstitutions that are impartingcommendable service to thepersons with disability in thecountry. All these institutionshave been promoting trainingand have important role instandardization of services forrehabilitation of persons withdisability.

About the Author

The author,VedabhyasKundu, iscurrentlyworking asProgrammeOfficer, GandhiSmriti andDarshan

Samiti, the national memorial ofMahatma Gandhi. A journalist byprofession, he has been writing ondisability issues for several years.As a volunteer with Samatvam–thedevelopment communicationgroup (an initiative of theInternational Year of VolunteersTeam, United Nations Volunteers),he is part of a media volunteersteam working on media anddisability. One of his previousbook, India’s Living Legends :Savants of Voluntary Action was anattempt to profile the leadingvoluntary activists of the countryand this book, for him as a writer,is a continuation though focusesspecifically on those working forthe persons with disability.

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Lal AdvaniLal AdvaniLal AdvaniLal AdvaniLal Advani

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Lal AdvaniWhen at a time a person of his age would prefer to

sit back and relax, he continues in his mission to workfor the persons with disability. A pioneering figure inthe disability sector in India, Mr Lal Advani has beenan inspiration and force behind many a program orinstitutions for the persons with disability.

Having started his work at a time when there werehardly any services available for the persons withdisability, Mr Advani’s efforts have not been withoutany challenges. Truly his endeavor for the last sixdecades can be described as what Swami Vivekanandahad said, “Great work requires great and persistent effort fora long time. Neither need we trouble ourselves, if a few fail.”

Born on April 26, 1923 in Hyderabad, Sindh (nowin Pakistan) an unfortunate incident happened duringhis birth. The doctor reached late and had no time tosterilize the instruments used during child-birth.Though there was no brain damage, his eyes becamered. As a child, he did not have any problem with hisvision.

However, by the time Mr Advani was in Class II,he started having problems seeing the black board andused to stumble around desks. He was taken to a localdoctor and was told that he had developed glaucoma.To ensure better treatment, he was taken to Quetta to aBritish eye-surgeon, Sir Henry Holland. He wasoperated upon for the first time when he was about 10years of age. The operation was successful and he could

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see well for a while. But unfortunately glaucoma thatis intractable returned. Over the period of next twoyears, Mr Advani underwent 12 operations. Hiseyesight began diminishing after every operation.

In his final attempt to ensure that Mr Advani didnot completely lose his sight, his father took him to aBritish Faith-Heeler who had come to Karachi. “Fatherhad read in newspapers that this Faith-Heeler couldcure incurable diseases,” he reminisces, “Hoping thatshe could do something, I was taken to her.“ But whenshe looked at Mr Advani, she said nothing could bedone. It was a traumatic blow to the young Advani, hisworld seemed falling apart. He lost his visioncompletely by the age of 12. Following this, Mr Advaniwent to a local blind school to get training in Braille.The first story he read in Braille was Romeo and Juliet,he recollects.

“In those days loss of vision was considered a totaldisaster”, says Mr Advani, “A person with visualimpairment had no other option but to either beg,become a religious preacher, music teacher or do chaircanning.” ‘Denouncement from society’ was the destinyof a person with visual impairment. Even for MrAdvani, his mother would say that she had only oneson and refused to consider him as one.

Recollecting his school days before he lost hisvision, Mr Advani says he was mischievous. Sharingan anecdote he says, “Once in the class, a girl did notrespond to my ‘namaste’. So when a friend told me thatshe was wearing a new sari, I squeezed an orange andspread it on her chair. Her sari got spoiled and she

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complained to the teacher. No one came forward toname me. From next day onward she always said‘namaste’ to me first.”

By the time he was 15 years of age his father tookhim to a saint who suggested that he be sent to Kashi orBenaras so that he could master the Vedas. But youngAdvani revolted against this. He then decided to do acourse in music following which he started teachingmusic.

In 1942, Mr Advani was nominated to do a coursein Physiotherapy in Karachi. There was an agreementthat he would be sent to the Middle-East at the war frontafter he completed the course. “As part of my practical,I was given a boy with quadriplegia to attend to. Theboy was considered lazy and British officials told meto put iron rods in his legs if he did not respond. I hadbeen interested in child psychology and was opposedto such a treatment.” he says.

“The doctor was agitated and complained to MajorMaxell, the head of the British Military Hospital,” hecontinues, “The Major threatened to put me in jail andasked for my resignation. I resigned. Besides I did notwant to go to the Middle East.”

Mr Advani then decided to pursue his studies andwent on to do General Certificate of Education. “TheLondon University then used to conduct exams indifferent centers where students with visualimpairment were allowed to appear. I took the examsin 1943 in Karachi,” he says, “In those days all Braillebooks, Braille watches and other materials for the

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visually impaired used to come from England.”

The turning point in Mr Advani’s career came in1944 when he got an offer to join as an Instructor in anew Institution in Dehradun to train people who losttheir sight in World War II. “At the St. Dunstan’s Hostelfor the Indian War Blinded, many of the inmates hadlost their self-confidence. They said they no longer werecapable of doing anything after they lost their sight. Soit was a challenge of not only training them but alsoboosting their self-confidence.”

During this time, the Viceroy Lord Webelappointed a Committee to investigate into the causesof visual impairment in India and also recommendmeasures for the welfare of the visually impaired. MrAdvani’s boss Mr Clutha Mackenzie, was the Secretaryof the Committee. He was put to a grinding schedule—right from assisting Mr Mackenzie to taking classes. Heused to work from 7 a.m. to 9 p.m.

“The Committee made two majorrecommendations. It said that the Ministry of Educationshould set up a separate unit on blindness to deal witheducation for the visually impaired and similarly theHealth Ministry should set up a separate unit.” MrAdvani says. Besides the report talked in details aboutpre-nursery education, school education and trainingof adult visually impaired. It also noted on the need oflibrary services for the visually impaired, preventionof blindness, enactment for the visually impaired,production of Braille literature and rehabilitationprograms of disabled other than that of the visuallyimpaired.

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Mr Advani became the first person with visualimpairment to be selected to the Union Public ServiceCommission in April 1947. He joined as the head ofthe unit for the visually impaired in the Ministry ofEducation. “Initially my immediate boss told me thatthere was no work for a visually impaired person. Hetold me to come to the office, wish him good morning,sit the whole day and then in the evening bid him good-bye.” he reminisces.

But Mr Advani was not one to be cowed down.Shortly, he put up a note that blindness was not theonly form of disability. “I wrote that the unit shouldnot just deal with education of the visually impairedbut with the education in other areas of disability likehearing impairment, mental retardation, orthopedicdisability.” he says. This was Mr Advani’s first majorintervention in the disability sector in India.

“The then Union Education Minister MaulanaAzad agreed to my proposal and the unit wastransformed to deal with education for all areas ofdisability.” he continues.

In 1951, Mr Advani along with Prof Suniti KumarChatterjee, a distinguished linguist, went on to developthe India Braille Code, Bharati Braille. “In 1949,UNESCO felt there was need to develop an uniformBraille Code. In this regard, a conference was organizedin 1950 in Paris. Prof Chatterjee and I attended theconference which laid down principles for devisinguniform Braille Code for Indian languages.” he says.

“After coming back, we worked to develop anuniform Braille Code and finally in February 1951, the

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Bharati Braille was formally accepted as the code of thecountry,” he continues, “All Indian languages can beread by the code.” The country celebrated the GoldenJubilee of Bharti Braille in 2001.

Again in 1951 itself, when the First Plan was beingformulated, Mr Advani requested the PlanningCommission to allocate some budget for education ofthe disabled. “They were reluctant and it needed lot ofpersuasion to get Rs 11 lakh sanctioned,” he says.

Meanwhile, in December 31, 1947, the thenEducation Minister Maulana Azad called an importantmeeting and decided that the Ministry would take overthe St. Dunstan’s Hostel. It was renamed as the TrainingCentre for the Adult Blind (TCAB) on January 1, 1950.From an institution catering only to military personnel,the Centre was now opened for rehabilitation of all. In1951, it was decided to set up the country’s first BraillePrinting Press in Dehradun. The Press was independentfrom TCAB.

Mr Advani was instrumental in developing variousprograms and schemes for the visually impaired. In1954, a workshop was set-up as part of TCAB to produceBraille slates and Arithmetic frames. Again in 1957, hepushed the Finance Ministry to approve a scheme forwomen with visual impairment. Through this scheme,a separate training section for women was started atDehradun. On January 4, 1959, a model school forchildren with visual impairment was started atDehradun to cater to the educational needs of childrenwith visual impairment while in 1962 a National Libraryfor the Blind was set up. All activities of TCAB

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including the model school and women’s trainingprogram were integrated in 1967 and was renamed asthe National Centre for the Blind.

Meanwhile Mr Advani who firmly believeseducation is the only panacea for empowering thepersons with disability was instrumental in starting aCentral Scholarship Scheme for the disabled in 1952. In1974 this scheme was transferred to the states.

Again in 1957, Mr Advani mooted efforts to initiatea Special Employment Exchange. The higher authoritiesinitially rejected the idea. Then the International LabourOrganisation was approached and an expert came whorecommended the need to set up Special EmploymentExchanges. On March 6, 1959 the first SpecialEmployment Exchange was set up in Delhi.

According to Dr S R Mittal, a close associate of MrAdvani, in 1961, representatives from the InternationalLabour Organization(ILO) came to India to explorepossibilities for starting various vocational trainingcourses for the visually impaired. Mr Advani wasactively involved in this process to explore new avenuesand with the help of the ILO representatives lightengineering courses were started in Dehradun andDelhi.

In 1973 it was felt that services at the NationalCentre for the Blind needed to be expanded and madequality based. The then Education Minister Mr NurulHassan constituted a committee under the chairmanshipof the Education Secretary to review the functioning ofthe National Centre for the Blind and in general to

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explore the ways and means to improve the servicesfor persons with disability. Mr Advani was the membersecretary of this committee.

Mr Mittal points out that this committee made far-reaching recommendations for initiating services for thepersons with disability in the country. The committeesuggested the setting up of national institutes to coverall disabilities. The objectives of the national instituteswere outlined as follows : to develop model educationaland training services which could be given forreplication to voluntary organizations later on; thruston humanpower training; and to undertake meaningfuland practical research related to various aspects relatedto disability.

On July 2, 1979, the National Centre for the Blindwas renamed as National Institute for the VisuallyHandicapped. Mr Advani was appointed the firstDirector of the Institute. Mr Advani was alsoinstrumental in initiating the National Institute for theMentally Handicapped, the National Institute for theHearing Handicapped and the National Institute for theOrthopaedically Handicapped.

While Mr Advani was working to initiate programsand policies for the persons with disability in thecountry, he completed his post-graduation inPhilosophy from Punjab University in 1951. Then in1952, due to the support of the then Education SecretaryHumayun Kabir, Mr Advani went on to do post-graduation in special education from the LondonInstitute of Education. Taking study leave in 1964, hedid post-graduation in special education with a

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specialization in mental retardation from BostonUniversity, USA. Later on he took a diploma in specialeducation for visually impaired students from thePerkins School for the Blind, USA.

Even after retirement in 1982, Mr Advani has beenactive in working for the persons with disability andfurthering their cause. On April 1, 1985, he took over asthe Director (Research), the National Society for EqualOpportunity for the Handicapped. He continued towork till December 31, 1996, and was responsible forinitiating various research projects and studies. Since1996, he has been working as an honorary consultant tothe Rehabilitation Council of India.

Besides Mr Advani was the President of the AsianChapter of the World Blind Union from 1984-1992. Hehas also been the editor and publisher of the journal,“Braille International” from 1972-1992. He was alsoinstrumental in facilitating merger of two Internationalbodies—the International Federation of the Blind andthe World Council for the Welfare of Blind.

Mr Advani’s contribution to the disability sectorin India was recognized when he won the 1997President’s Award for the Best Disabled Individual. Stillworking assiduously, Mr Advani recollects hismarriage. He shares some interesting anecdotes: In late1950s, one of Mr Advani’s friends advertised in thematrimonial column of a newspaper. The fact that hewas visually impaired had been inadvertently left out.In response, he got 93 applications. He then wrote backabout his impairment. None responded back.

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While concluding, Mr Advani talks at length of thecontribution of his wife in his remarkable efforts for thepersons with disabilities. She has been the pillar ofstrength behind all his endeavor. He reminisces, “In1962, two ladies came to me for help as they wanted topublish a brochure. One was a lawyer and the other alibrarian. After some interactions, both wanted to marryme. Finally I got married to Nalini in January 1964. Shewas librarian at the Maulana Azad Medical Collegelibrary.”

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Beroz VachaBeroz VachaBeroz VachaBeroz VachaBeroz Vacha

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Beroz VachaZameer Dhale, 24, has a dream—to have his own

independent business someday. The vocational traininghe has received has bolstered his self-confidence. Hisdetermination can be described by what SwamiVivekananda had said, “We are responsible for whatwe are, and whatever we wish ourselves to be, we havethe power to make ourselves.”

Zameer is also enthusiastic and is good in makingfriends. He is not the only one whose life has beentransformed after he came to the Helen Keller Institutefor Deaf and Deaf-blind, Mumbai.

The Institute has brought hope to the lives of manydeaf-blind children. They have now become usefulmembers of the society and are a living proof of whatHelen Keller had said, “A person who is severelyhandicapped never knows his own hidden source ofstrength until he is treated like a normal human beingand allowed to shape his own life—or life is either achallenge or an adventure or nothing at all.”

One of the pioneering Institutes in the country, theHelen Keller Institute for Deaf and Deaf-blind has beenworking for more than two decades in the field ofrehabilitation of the deaf-blind. The pillar behind thisendeavor is Mrs Beroz Vacha who inherited the valueof service to others by reading Florence Nightingale,Tagore, Helen Keller, Albert Schweitzer and MadamCurie.

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Born on December 8, 1928, Ms Vacha went to aMunicipal School in Valshad, Gujarat. “During mystudent days, I was moved by the plight of a hearingimpaired child in our school. Students and people usedto make fun of him.”

Years later, when she went back to Valshad, shesaw a grave in front of the school. It was that of the sameboy with hearing impairment. “To me this grave was asymbol of muted spirit that was denied the right toeducation for no fault of his own.” Ms Vacha says.

After passing out from college, Ms Vacha gotmarried and for the next few years, she concentrated onher family life. For sometime, however, she worked asa volunteer at the Oral School for the Deaf in Kolkata.When she came back to Mumbai, she made up her mindto work for the hearing impaired.

In 1965, Ms Beroz Vacha met 17-year old ShyamaMehta. She was born deaf and had progressively losther eyesight. By the age of 16, she lost her sightcompletely. Shyama’s father, Shantilal Mehta, requestedMs Vacha to be with her for an hour everyday as a tutorcompanion. “My interaction with Shyama propelled meto work for the deaf-blind,” Ms Vacha recollects,“Shyama’s courage, her sense of humor and her sharpmemory amazed me. She personified the true spirit ofcourage.”

In 1970, Ms Vacha got an opportunity to receiveoverseas training in educating the hearing impairedfrom the University of Manchester and later from theInternational Center on Deafness at Gallaudet College,Washington DC. In 1974, she took training at the Perkins

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School for the Blind and Deafblind in Boston,Massachusetts.

Between 1970 and 1977, Ms Vacha prepared herselffor life-long service to the cause of the deaf-blind. Finallyin July 1977, she started the Helen Keller Institute forDeaf and Deafblind with just two deaf-blind childrenand one deaf aphasic child. There were just threeteachers including Ms Vacha. The Institute started fromthe residence of one teacher. “We started with a meagerRs 150, but I was confident that I would get help. Ialways believe that people have a lot of goodness inthem and it was important for us to tap it.”

“Right from day one, we worked on the premisethat no one was incapable of being taught. We believedthat none could develop his/her personality withouteducation. It was the fundamental birthright of a childto be educated and loved.” she adds.

“The Total Communications approach is beingfollowed from the beginning,” Ms Vacha points out.The philosophy of Total Communications encompassesoral/aural, manual, print (reading, writing, drawing).Mime, dance drama and spontaneous body languagehelp to quickly develop cognitive levels.

“Total Communications is important in the earlyyears of a child’s development,” Ms Vacha says, “It isin fact a communications philosophy and not a teachingmethod.”

According to Ms Vacha, the Total Communicationsprogram hinges on two factors:

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a) Faith in the ability of teachers and children:Teachers needed to believe in the TotalCommunications approach and be willing topractice it in the classroom setting.

b) To bring out a manual of finger spelling and signlanguage suitable for local languages.

Quoting Helen Keller, Ms Vacha says, “EffectiveCommunication is the gateway to knowledge.Knowledge is power. Rather, knowledge is happinessbecause to have knowledge is to know the truth fromthe false and the lofty things from the low. To know thethoughts and deeds that have marked a man’s progressis to feel the great heart—throb of humanity throughthe centuries; and if one does not feel inside thepulsation of a heavenward striving, one must indeedbe deaf to the harmony of life.”

To meet the needs of the increasing number ofchildren, the Helen Keller Institute moved to aMunicipal School in Byculla in 1979 and was housed intwo rooms. At that time, there were six deaf-blind and15 children with hearing impairment.

In tandem with its approach to its TotalCommunications philosophy, the Institute publishedthe first dictionary on manual communication, ‘TalkingHands’ in 1979-80. It comprised 3000 signs.

A deaf-blind child is bereft of any language,communication, speech, and awareness of his familyor the world outside. According to Ms Vacha, to bringsuch a child out from his shell, the education and

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rehabilitation program needs to be tailor-made to suithim. “All teachings should be rooted in a child’sindividual experience,” she emphasizes,” And thisshould be done right from an early stage.”

To develop personalized programs of a deaf-blindchild, several factors need to be considered includingthe child’s current abilities and strengths and also theseverity of disability, Ms Vacha points out. In the initialyears, the child-teacher ratio should be 1:1 to achievedesired results, she adds.

“We have to look at the child holistically. Detailedobservations, documentation and a knowledge of howour sensory processes function within the nervoussystem at an unconscious level are required,” shecontinues.

At the Institute, intervention begins as soon as thechild’s disability is diagnosed. “A major constraint,however, is the lack of adequate services available inIndia. So most deaf-blind children do not have accessto specialized rehabilitation. Early interventionprograms fail due to lack of information, dearth ofprofessional expertise, woefully inadequate servicesand absence of referrals,” Ms Vacha avers.

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Children at the Helen Keller Institute

According to Ms Rina Bhandari, Principal of thedeaf-blind section, the early intervention program hasto be dovetailed to parental guidance and parentcounseling. “We give a lot of thrust to interactions withparents,” she continues, “The mother is usually the focalpoint who understands the child best. Her observationsand inputs are critical for developing an individualizedprogram.”

The Institute has initiated a Parents Associationwhere such interactions are encouraged. “We organizefamily weekends and also camps once in a year. Thisenables parents to come together and share theirexperiences,” Ms Bhandari says.

The systematic involvement of parents has ensuredthat many of them are actually volunteering for theInstitute from time to time. “When there is a meeting or

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shortage of staff, many of them come to help teachersto look after the children. They also encourage andrender emotional support to a new parent,” Ms Vachapoints out.

The Institute addresses various areas of students’health care too. Due to inability of the deaf-blind toaccess information, all areas of their development areaffected. “Our goal is to make the children as muchindependent as possible so that their self esteemdevelops,” Ms Vacha says.

“With appropriate diagnostic procedures and agood educational curriculum, a deaf-blind child can sit,concentrate and perform useful tasks. They can betrained in different productive work and in daily lifeskills like dressing, toilet, mobility, etc.” she adds.

Since its inception, the Institute has grown fromstrength to strength. By 1982, there were 50 children, 10deaf-blind and 40 deaf. Around this time, the Institutereceived its first adhoc grant from the Social WelfareDepartment, Government of Maharashtra. Besides, MrShantilal Mehta, the father of Ms Vacha’s first student,sponsored two teachers, one-maid attendant andtransport facilities for seven years.

The Institute was able to put in place the firstresidential facilities in India for deaf-blind children inApril 1985. The facilities were meant for childrencoming from outside Mumbai. The very same year, theSingapore Association for the Blind invited the Instituteto start a program for deaf-blind children in theircountry.

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“Our emphasis has been on curriculumdevelopment for the deaf blind child,” says Ms Vacha,“It is a guideline in developing skills, involving senses,motor functions and coaxing the child.” Communicationskills, cognitive development skills, sensorydevelopment, motor and self-care skills, and social andemotional development skills are all in focus.

The Helen Keller Institute has pioneered a gradedfunctional and academic curriculum leading to pre-vocational training and vocational rehabilitation. Aseries of co-curricular activities like swimming,camping, mobility, domestic science, mime dance andfine arts has also been instituted. Besides providingregular counseling services for parents, children andstaff, the Institute has also started a short-term in-serviceteacher training for the deaf-blind.

In pursuit of its goal to make the deaf-blindindependent, the Institute started the Vocational andRehabilitation Unit in 1998. Here the main thrust is onimparting training in production of jewelry from semi-precious stones and making decorative candles.

On July 1, 2000, the Institute started a teachers’training diploma course for the deaf-blind for the wholeof South Asia and the same is recognized by theRehabilitation Council of India. According to MsSampada Sherwade, Coordinator, Teacher TrainingProgram, the emphasis of the 10-month diploma courseis to give lots of hands-on experience including a three-month internship period. “We encourage the teachersto develop a relationship with the child. The aim is tomake a child learn what we want them to learn.” she

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says.

Ms Beroz Vacha has won several national andinternational awards including the prestigious AnSullivan Medal in 1991, the National Presidential Awardfor the Welfare of People with Disabilities in 1997 andthe Deaf-blind International Distinguished ServiceAward in February 2000. Taking a leaf from HelenKeller, her contribution and achievements can besummed up as: ”We can do anything we want as longas we stick to it long enough.”

However, she feels education and rehabilitationtherapy need to be developed alongside existingservices for the deaf-blind in different parts of thecountry. “As the incidence of deaf-blindness is lowerthan other disabilities, in-service or on-the-job trainingshould be given to staff as and when such children areidentified. Schools and professionals havingprofessional expertise must be prepared to assist inproviding services and making staff available fortraining. The training provided must be practicallyoriented with theoretical knowledge so thatprofessionals, parents and clients can understand anduse the knowledge imparted to them.”

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BhadrabenBhadrabenBhadrabenBhadrabenBhadraben

27

Bhadraben & late JagdishbhaiPatel

The devastating killer earthquake that hit Gujaraton January 26, 2001 rendered many people disabled. Itwas a personal setback to Mr Laljibhai Prajapati as hisNavchetan Blind Men Association in Bachau, Kutch wasrazed to the ground and 16 inmates lost their lives.However, the incident has only redoubled his resolveto ensure facilities for all affected.

Working in Kutch since 1978, Mr Prajapati was astudent of the Blind People’s Association (BPA),Ahmedabad. “Many of us were inspired by our almamater to go out to areas where there are no facilities,”he says, “BPA is still a constant source of encouragementand support.”

“BPA’s name is a misnomer,“ points out MrsBhadraben Satia, the moving spirit behind theorganization, “Though we started it, focussing to workfor the visually impaired, we now work for all categoriesof persons with disability. But since we are alreadyknown as the Blind People’s Association, we have noteffected any change in its name.”

Going down memory lane, Mrs Bhadraben Satiatraces the growth and contribution of BPA, which is nowone of the leading organization for persons withdisability in the country. Albert Schweitzer had rightlysaid, “There is no higher religion than human service.To work for the common good is the greatest creed.” It

28

was with this ingenuity and dedication that she andher late husband Jagdishbhai Patel worked to providea wide gamut of services to all categories of thedisabled.

Giving an account of Jagdishbhai’s early life, MrsBhadraben Satia says he was born on September 5, 1928.At the age of eight he suffered from meningitis and losthis vision. He was sent to the Calcutta Blind School atBehala, one of the oldest school for the visuallyimpaired in India in 1938. He went on to join the VictoriaMemorial School for the Blind, Mumbai, in 1941. Afterpassing his vernacular final examination in 1944, hetook admission for a three-year course in physiotherapyat the same school. At that time, it was the only schoolin the country offering a course in physiotherapy to thepersons with visual impairment.

Immediately after acquiring diploma, Jagdishbhaistarted working in the Massage Clinic of the School.Soon family pressures forced him to return toAhmedabad where he was without work for six months.Finally on January 1, 1948, Jagdishbhai set up his ownPhysiotherapy Clinic with support from his father.

“I met Jagdishbhai at his Physiotherapy Clinic in1950,” Mrs Bhadraben recalls, “My younger sister hadhurt herself so I had to go to the Clinic. One day heasked me if I would work for a blind association hewas in the process of setting up. I agreed to volunteereveryday after 4 p.m. as I was then teaching at theAhmedabad Women’s College.” That was thebeginning of a life long partnership—not only as lifepartners but also as joint partners in their endeavor todevelop a pioneering institution.

29

“There was lot of opposition when we decided toget married,” Mrs Bhadraben says, “My familymembers were shocked when I told them about mydecision to marry a man with visual impairment andthat too from a different caste.” The two got married in1958.

The Blind Men’s Association (prior to 1998 theBlind People’s Association was called so) which wasestablished in 1947 at a meeting of few leading blindpersons in Surat, has a long history. In 1950, Blind Men’sAssociation got fragmented into three independentorganizations at Ahmedabad, Pune and Mumbai.Jagdishbhai started the Ahmedabad Blind Men’sAssociation.

“A few blind boys used to come to Jagdishbhai’sClinic in the initial stages and we used to teach them,”Mrs Bhadraben continues, “Later, a house was donatedby Mr Ambalal Sarabhai for use as office by the BlindMen’s Association.”

“We then started a hostel with just three boys,” shecontinues, “Within two years there were 30 boys.”Meanwhile in 1954, a center exclusively for girls withvisual impairment was started at Memnagar villagenear Ahmedabad.

Jagdishbhai has been the force behind importantendeavors initiated for the visually impaired in thecountry. He was one of the prime movers behind themeeting held in 1952 in Mumbai where the NationalAssociation for the Blind was established. Over theyears, the National Association for the Blind has

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emerged as a leading organization for the visuallyimpaired having branches in other parts of the country.

Braille books were in short supply in those days.To meet this shortfall, Jagdishbhai approached theSuperintendent of the Sabarmati Central Jail atAhmedabad in 1958 for involving prisoners in theembossing of Braille books. The Superintendent wasexcited about this unique idea. Initially 10 prisonerswere taught Braille. Within a few weeks, some Braillebooks were brought out. Soon jail authorities allotted aroom and the Blind Men’s Association deputed a staffmember for teaching Braille and coordinate Braille bookproduction. This room is known as ‘Braille Barrack’.

Dwelling further on the expanding work of theAssociation, Mrs Bhadraben talks about the AdultTraining Centre for the Blind established in 1960.“Jagdishbhai had come in touch with Kanubhai Thakarin 1958. After losing his vision in 1952, while preparingfor his MSc, Kanubhai had gone into a state ofdepression. However, after a series of discussions andmeetings, he regained self-confidence and becamedetermined to render service for persons withdisability.”

“Jagdishbhai encouraged Kanubhai to establish theAdult Training Centre and a sheltered workshop,” shecontinues, “I was actively involved in the setting up ofthis Center. Handloom weaving and Braille writingwere introduced as the first activities of the Center.”

A circulating Braille Library was started in the sameyear. At that time not many books were available. Withthe setting up of the library, a large number of visually

31

impaired people benefited. Textbooks, novels,periodicals and often reading materials that those withvisual impairment did not have access to earlier weremade available.

“1962 was a landmark year for us as we wereallotted land by the Gujarat Government for constructingour own building. This now serves as ourheadquarters,” Mrs Bhadraben says.

“During those days, it was a desolate place. Therewas no proper approach road to the campus. We hadto pass through muddy roads and shrubs to reachthere,” she adds.

The first building of the Blind Men’s Associationcame up in 1963. Jagdishbhai had by then initiatedefforts for promoting education of the persons withvisual impairment in a big way. “There was noprovision for secondary or higher education for childrenwith visual impairment in Gujarat in those days,” MrsBhadraben points out, “So Jagdishbhai took up theissue of recognition of a School up to class XI to be runby the Association with the Education Department. Itwas the first such school to be recognized in Gujarat.The first final exam for the secondary level was heldduring 1967 and we achieved cent per cent result inthat year itself.”

In 1976, the School managed to get recognition as aHigher Secondary School. A science stream for the

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visually impaired students was also started. This servedas a catalyst and several other schools followed suit.With a firm belief that visually impaired persons canbe trained in almost all trades with some modifications,a Vocational Stream at the higher secondary level wasstarted in 1989. By then the organization hadstandardized the Gujarati Braille Shorthand system withthe collaboration of the National Institute for theVisually Handicapped.

“Simultaneously, we established a Music Schoolfor the visually impaired in 1967. There were 66 blindstudents in the first batch,” Mrs Bhadraben says. TheMusic School got affiliation to the GandharvaMahavidhayalaya Mandal in 1971.

To meet the objective of holistic rehabilitation ofthe visually impaired, the Technical School for the Blindwas also set up. The Technical School has beenimparting one-year training in various trades, viz.,general mechanics, electric motor rewinding, carpentrypractices, hand and powerloom weaving, cane-work,coir-work and card-board work.

According to Mr Harish M Panchal, Director,Training of the Blind People’s Association, it wasrealized in early 1970s that just giving technicaleducation was not enough. “So we decided to initiatean on-the-job training program,” he says, “With handson experience, it was easier to facilitate jobs for studentsonce they passed out. The primary objective has beento expedite economic rehabilitation of the disabled. TheAdult Training Centre (workshop) for the Blind hasbeen an important component of the on-the-job training

33

program.”

The skillsets they have acquired at BPA havehelped

in their rehabilitation process

“This effort at providing on-the-job trainingenabled us to start production of different products.

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But this meant we now needed sighted people too,”Mr Panchal continues, “So in 1976 we initiated a multi-category training program for the disabled. Weintroduced several new trades like light engineering,printing press, commercial design, tailoring, composingand printing.”

To start with, the BPA approached the Governmentfor work and was given repair work of some of itsdepartment’s furniture. “When I joined BPA in 1975, Iwas given a turnover target of Rs 10 lakh per month,”he adds, “I could achieve the target in 1977-78.” In 1979,the workshop went semi-automatic and so the turnoverrate increased.

“Previously most aids and appliances used by thevisually impaired like the Braille Slate, Pocket Taylor’sFrame etc. had to be imported,” says Mrs Bhadraben,“But with new facilities at the BPA we decided to startproduction of these aids and appliances.”

To further this aim, Jagdishbhai established theBraille Aids Workshop in 1980. In 1981, the organizationstarted manufacturing and distribution of various ortho-prosthetic aids and appliances for the orthopaedicallyhandicapped. The Workshop was renamed in 1982 asNational Rehabilitation Engineering Institute (NREI).

“Innovation has been the hallmark of our Institute,”says Dr Bhushan Punani, Executive Director, BPA,“Ranging from tricycles for those with paraplegia, lowcost nylotic calipers, new prosthetic aids, batteryoperated tricycle, Braille micrometer to low visiondevice, we are constantly working on new aids andappliances. In fact, BPA encourages innovation in

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various devices used by persons with disability.”

For instance, BPA has supported innovation madeby Mr Bhaghirath Mankad, a father of a low vision child,who has made a device, which is benefiting many withlow vision. In fact, BPA is now producing this devicein a big way. The most significant aspect of the DhairyaLow Vision Device (Mr Mankad has named the deviceafter his daughter) is its simplicity. A small simplewooden box is fitted with an ordinary tube-light withwhite acrylic sheet on the top. When the board isilluminated, a person with low vision can read and evenwrite with a marker or a sketch pen due to a contrastthat is created.

Meanwhile as the sales turnover of the Workshopsgrew and the number of products also registered anincrease, a marketing outlet, Handika, was set up in1983. “Sustainability has been the philosophy behindthese efforts,“ Dr Punani says.

“In order to provide quality services andrehabilitation, we strongly felt the need forprofessionalism,” Mrs Bhadraben says, “This is thereason we encouraged professionals like Dr Punani,Mrs Nandini Rawal, Mr Harish Panchal and others.Besides we were always conscious of the need todevelop a second line of leadership at BPA.”

“Jagdishbhai had always emphasized on the needto promote integrated education for comprehensiverehabilitation of the visually impaired,” she points out,“We launched the first project under integratededucation in 1981. In fact the Mehsana District branch

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of the National Association of the Blind took up a pilotexperiment. Several projects on integrated educationare now going on in other districts like Valsad,Banaskantha, Junagadh, Kaira, Rajkot, etc. This schemehas also been adopted by the Department of PrimaryEducation, Gujarat Government.”

The NAB Gujarat State Branch started a CommunityBased Rehabilitation project at Dholka in 1983.Jagdhishbhai was directly monitoring this project. Infact, it has been his staunch belief that the only way toreach millions of unreached visually impaired personsin rural areas is by initiating Community BasedRehabilitation (CBR) programs. “If we are to liberatevisually impaired persons, we must go to them in theirvillages, convince the community and enlist the supportof the families,” he had said.

The CBR Program has been successfullyimplemented in various parts of Gujarat. In a similarway, in 1989, an Urban Community BasedRehabilitation Project for aged and disabled wasinitiated.

Convinced that only education and technology canfacilitate the visually impaired to go ahead in thecompetitive market, the Blind People’s Associationstarted the Cama Computer Training Center for theBlind in 1984. Besides providing computer training tovisually impaired students, the Center also helps inproviding placement services as computer operatorsand computer programmers. The very next year, BPAstarted an electronics training center project inpartnership with the Industrial Development Bank of

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India. Presently, the Center is imparting training to thevisually impaired and other differently abled in theassembly of antennae, production of communicationcomponents and other electronic items.

The computer center for the visually impaired atBPA

In an endeavor to provide services to the deaf-blind and others, a Centre for Multihandicapped hasstarted functioning from 1993. BPA also started aDiploma Course for the Secondary School teachers ofthe visually impaired in 1994. Besides it has beenorganizing training program for parents of visuallyimpaired children.

On 31 March, 1999, Jagdishbhai died. But BPAcontinues its journey in its endeavor to reach out to moreand more persons with disability. “We are trying toensure that the growth and sustainability of our effortsincrease simultaneously,” says Dr Punani, “Besides we

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are also increasingly focussing on the family instead ofonly the individual.”

3939

Dr Bimalendu Narayan RoyDr Bimalendu Narayan RoyDr Bimalendu Narayan RoyDr Bimalendu Narayan RoyDr Bimalendu Narayan Roy

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Dr Bimalendu Narayan RoySukanto Banerjee has an astonishing ability to

remember dates as far as 10 years back. While not manyhave such a unique talent, he carries a stigma with himas a person with mental retardation. Tapas Chatterjeedespite being a singer is also labeled as such by thesociety.

“If nurtured properly, there is nothing that personswith mental retardation can’t do,” says Ms ChinmayeeManna, music therapist at the Alokendu Bodh Niketan,Jemo unit, Murshidabad. Echoing, Francis Bacon, shesays “Natural abilities are like natural plants that needpruning by study.”

Making persons with mental retardation self-sufficient has been the avowed motto of Dr BimalenduNarayan Roy who had been working for them since thesixties. His institution, Alokendu Bodh Niketan, hasbeen endeavoring to transform the lives of persons withmental retardation in West Bengal.

Hailing from a royal family in Murshidabad, DrRoy, born in 1920, moved to Kolkata after passing outfrom school in 1938 and started a small business tosustain himself. Simultaneously, he did a LMF tobecome a medical practitioner, besides involvinghimself in social work and theatre.

Inclined to study further, Dr Roy enrolled himselfin MBBS which he completed in 1951. However, by thenhe had already made a name for himself as a doctorand social worker. On August 15, 1947, he set up aJemo Medical Hall to serve the poor.

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“One fine day in 1951, a man came to me andsuggested I should go in for a higher degree to helpand serve people,” Dr Roy reminisces.

“This served as a catalyst for me to go to Londonand take a diploma in tropical medicine,” he says. Healso briefly joined the Middlesex Hospital in 1954. Aftercoming back to Kolkata in 1955, Dr Roy started thinkingon the need for proper care and treatment of childrenwith mental retardation. He again went to London in1959 to do specialization in this subject.

After coming back to India in 1960, Dr Royestablished a ‘Society for Child and CommunityWelfare’. He also ran a polyclinic for sustenance. “Inthose days, I used to charge Re one from my patients,”he says.

“In recognition of his efforts, the then chief ministerof West Bengal, Dr B C Roy gifted me an X-ray machine.I decided to charge Rs three for an X-ray as no one givesvalue to altruism,” he adds.

With the help of volunteers Dr Roy started amedicine bank for the poor. “At the same time, I wasmoved by the plight of children and persons withmental retardation and so I decided to start a center forthem.”

“Lack of trained professionals in the area of mentalretardation was a major hiccup,” Dr Roy continues, “Itwas a challenge to provide services to persons withmental retardation. I felt there was need to start a coursefor those working for persons with mental retardation.”

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In 1965, Dr Roy went back to London and a fewother cities of Europe to get further training inrehabilitation of persons with mental retardation.Besides he started working on a module for aprofessional training course and with the help ofprofessionals he formulated the ‘Professional Diplomain Mental Retardation.’ Initially, it had no takers andthe Government too did not recognize it.

To get Government recognition for the course, DrRoy sought an appointment with the then PrimeMinister, Mrs Indira Gandhi. “I took seven boys withmental retardation along with me and told Mrs Gandhithat rehabilitation of children like these can happen onlyif a cadre of professionally trained care-givers wascreated,” he says.

Dr Roy followed up the meeting with Mrs Gandhiby organizing a seminar on mental retardation onDecember 30, 1966. “Besides proposing a separatedepartment for persons with disability, I pleaded formore facilities for children with mental retardation,”he recalls.

The meeting with Mrs Gandhi and the subsequentseminar yielded immediate results. “When I came backto Kolkata and met the Governor, he not only extendedrecognition to the course but also sanctioned Rs 5,000,“Dr Roy says. In the first year itself, there were 12students. The Professional Diploma in MentalRetardation was one of the first such courses to bestarted in India.

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1978 was another landmark year for Dr Roy. Duringthis year, the Alokendu Bodh Niketan Residential wasformally established with the aim of rehabilitating thosewith mental retardation and cerebral palsy throughcurative teaching, training and other processes. Since itwas started with residential facilities, many childrenfrom far off places started staying in the complex. “Lackof trained teachers was not a problem any more as wealready had some who had taken our teacher trainingcourse.”

With the aim of reaching out to a larger public, DrRoy decided to start branches in Sanada, Darjeeling in1982 and at Jemo-Kandi, Murshidabad in 1987.

Inmates at the Murshidabad Branch

In 1993, the Alokendu Bodh Niketan started yetanother branch, ‘Anuradha’ in Kolkata exclusively forwomen with mental retardation. “Slowly as these unitsgrew, we realized that many with profound mental

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retardation were generally confined to the four wallsof their house,” Dr Roy continues, “We decided to starta home-based training program.”

Inmates at Anuradha, Kolkata

“Our special educators go to homes of childrenwith severe mental retardation and chalk-out anIndividual Training Program for them,” he says, “Thewhole focus is on developing the potential of thesechildren to their optimum capacity.”

Vocational training has been an integral part ofAlokendu Bodh Niketan’s rehabilitation program.Bakery, tailoring, weaving, printing press, bookbinding,leather, woodwork, picture painting, screen printing aresome of the vocations taught at the Institute. “Many ofour students have been gainfully employed and nolonger are a burden on their parents,” Dr Roy says.

Besides, the Institute has been making efforts to

46

promote integration and mainstreaming of persons withmental retardation. According to Dr Subrata Ganguly,doctor-in-charge at the Anuradha unit, ”After a properrehabilitation program, those who are borderline casesare rehabilitated within their family environment andare sent to general schools. Also within the residentialcomplex, those with mild, moderate and severeretardation stay together.”

Postscript

Walter Scott had said:Like the dew on the mountains,Like the foam on the river,Like the bubble on the fountain,Thou art gone, and forever!

Dr B N Roy is no more. But his contribution to thecause of persons with mental retardation shall definitelyremain engraved in the history of disability movementin the country.

A visionary, he was always worried that personswith mental retardation will be left in the lurch aftertheir parents pass away. “We need to create facilitiesthat shall take care of our elderly mental retardedpopulace,” he used to say. His dream was to start anold age home for those with mental retardation in hisancestral home at Jemo, Murshidabad. A dream whichis now in the hands of his successors…………..

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Dhun AdenwallaI am deafSometimes I am happy,And sometimes I am sad;I knowI am like other peopleBecause I can do everything like themBut I am surePeople don’t get this feelingBecause I am deaf so people thinkThat I am different.

Bubla Ganguly, 14 years– Courtesy, brochure of The Oral School

for Deaf Children, Kolkata

This is the story of a School that sprang out of adesire of a mother to provide the best education to herdaughter. One of the earliest schools for the hearingimpaired in the country to impart education up tosecondary level, the Oral School for Deaf Children,Kolkata, has been following the academic-centeredcurriculum of general schools since 1964.

Tracing the history of the school, Mrs DhunAdenwalla, its founder says, “It all began when Iwanted to give my eldest daughter, Dinaz, qualityeducation that was the privilege of any other child in ageneral school.“

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“There was only one school for the hearingimpaired in Kolkata at that time and it would not admitchildren until they were eight years old. Besides thethrust was on vocational training,” she says.

Born on November 6, 1927, Mrs Adenwalla did herschooling and college from Mumbai. “I never had theinclination to work in the field of education for thehearing impaired,” she recollects. After her marriageto Dorab Adenwalla in 1958, she settled in Kolkata.

“Dinaz was born in 1959,” Mrs Adenwallacontinues, “Soon after, we realized that she was notresponding to my voice or any other sound. Wesuspected she was deaf.”

“It was shocking and we were confused,” she says,“We knew nothing about deafness nor anyone who hada child with hearing impairment. This compounded ourproblem. We had no idea where to go for guidance.We were, however, determined to make Dinaz a happyand well-adjusted child.”

In those days there was not a single teacher, doctoror parent either in Kolkata or Mumbai who coulddemonstrate a feasible way of training a child withhearing impairment. By then, she and her husband hadaccepted Dinaz’s handicap and the need for giving herspecialized instruction and training. They were alsoconvinced that this could happen only if theythemselves got some exposure in the field.

“We taught Dinaz survival skills by being her ears,

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telling her what we heard and overheard and bypatterning our language,” Mrs Adenwalla says,“Through play, Dinaz acquired stimulating and relevantlearning experiences.”

In 1963, the Manchester University announced thefirst course for training teachers of the hearing impairedat the EAR Center in Mumbai. “My husbandencouraged me to take up the course,” she says, “Iwanted to get trained as a teacher in order to overcomethe feeling of inadequacy in dealing with a growingchild who was hearing impaired.”

“After qualifying and returning home to Kolkata, Iencountered a frustrating problem.” she continues, “Toget Dinaz admitted in a general school was a tough task.We were left with only one option—to start a school forchildren with hearing impairment ourselves,” she says.

Thus started the Oral School with just two children,Dinaz being one of them. “I knew very little aboutrunning such a school,” Ms Adenwalla says, “Initiallyour enthusiasm was the only guiding factor.” Dunlop,where her husband was the Aviation Manager, madeavailable their premises for running the School. Withinfour months, the number of children went up to 20. Allwere aged between three and nine years.

“It was indeed quite a challenge,” says MsAdenwalla, “We had to produce material for teachinglanguage to the children since it was not readilyavailable.”

“Soon Ms Adenwalla realized that it was pure funteaching children through play, dramatization and

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language. Although I was anxious to see the childrenspeak, I did not insist on it, nor did I disallow gestures,”Ms Adenwalla informs, “Teachers always talked tochildren using finger-spelling and gestures to helpsustain more fluent comprehension patterns wheneverconsidered necessary.”

In just five years, students of the Oral Schoolattempted to take the Indian Certificate of SecondaryEducation examination. In fact it was one of the firstschools in the country to do so. “Dinaz secured 88 percent marks while another student got 72 per centaggregate,” says Mrs Adenwalla.

Being a mother as well as a teacher to Dinaz wasnot easy for her. “By about the age of 10, Dinaz too beganto find the two roles difficult to accept. She beganreferring to me as ‘Mrs A’. On one occasion, when herclass and mine were going on a visit to a tea garden,she objected to my coming because I was ‘mummy’.When I told her that I would have to go as I was alsothe class teacher, she first decided to opt out, buteventually agreed to come. Nevertheless, she insistedshe would refer to me as Mrs Adenwalla throughoutthe trip. “

“From the very beginning, our school was involvedin a mainstreaming program and started taking childrento a regular school,” Mrs Adenwalla says, “However,students did not derive much benefit from the program,so we discontinued these efforts except for sciencepracticals.”

The Oral School has always laid stress on the Total

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Communications approach. “This is the best way ofteaching the child with hearing impairment,” MrsAdenwala says.

The student-teacher ratio at the Oral School is 5:1and the stress is on development of communicationskills through play and other focussed activities at thepre-school and nursery level.

“Children learn new concepts at the primary, juniorand secondary levels. There is greater stress on readingfor meaning and writing for self expression,” MrsAdenwalla adds.

“Most students have become independent and thisis the barometer of our success,” says Mrs Adenwalla,“They are in varied professions. Some have becomecommercial artists, information technologists, fashiondesigners, prosthetic makers, etc. The School has evenintroduced a computer course now.”

The School has also set-up a well-equippedaudiology center and has trained personnel forprescribing and fitting hearing aids and ear-moulds. Itis also running a clinic to counsel and guide childrenand adult hearing impaired persons. Besides, itconducts regular testing of hearing aids and has initiatedan outreach program to provide audiological supportto patients from outside Kolkata.

Underlying the importance of basic education, MrsAmrita Banerjee, Vice-Principal of the School says, “TheOral School is one of the few schools for the childrenwith hearing impairment in the country which laysmajor stress on academics. Besides, ICSE students canalso take the Open School and Central Board of

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Secondary Examinations.”Now settled in Pune, Mrs Adenwalla has started a

“Family Learning Center” to involve parents andsiblings in teaching persons with hearing impairment.To cite an example, Mrs Armin Ghyara, a mother of two-hearing impaired children, feels the Center has helpedin integrating children right from the beginning.

“It is difficult to get trained teachers. Therefore thereis need for a new holistic approach in training teachersof the hearing impaired,” says Mrs Adenwalla.

“Teachers who are most effective are the ones wholearn new methods of reaching the child, who can sketchor provide the right visual stimulation, and maketeaching as lively and dramatic as possible.” she adds.

Referring to the role of mothers in managing theirchild with hearing impairment, Mrs Adenwalla sayseach mother’s experience is unique and the supportgiven to the child depends largely on the attitudes andpriorities within the family.

“Early management and training of a hearingimpaired child is dependent on the mother. However,in India, a majority of them are not able to extend thesupport that is actually required due to factors beyondtheir control,” concludes Mrs Adenwalla.

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Dr Edward Martin JohnsonDr Edward Martin JohnsonDr Edward Martin JohnsonDr Edward Martin JohnsonDr Edward Martin Johnson

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Dr Edward Martin JohnsonIt all started as a program for the war disabled in

1964 in Ludhiana, Punjab. Now after almost fourdecades, the Vocational Training and RehabilitationCentre (VRTC) has grown into a pioneering scientificrehabilitation institution for persons with disability inPunjab. The brainchild behind VRTC is Dr EdwardMartin Johnson.

It has indeed been an eventful journey for this manwho lost his eyesight when young but who has beengifted with tremendous vision. Born sighted, DrJohnson did his Masters in Social Work from the MadrasChristian College after which he joined the Government-approved school and the Seva Samajam Home for thedestitute and delinquents as the Superintendent.

“I was inspired to do service for others right fromchildhood,” Dr Johnson recalls,” I was initiallyassociated with Mr John Mathai, the first FinanceMinister of India and Mrs Clubwala Jadhav, the firstPresident of Indian Council of Child Welfare whofuelled my passion for social work.”

Dr Johnson’s work for the destitute and thedelinquents took a turn when the then Information andBroadcasting Minister Mrs Indira Gandhi was invitedto inaugurate the building for children in 1962. But asthey say, ways of Providence are strange and destinyplayed a cruel joke on him.

“The day Mrs Gandhi was scheduled to arrive, I

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developed a severe flu. Even in such a condition, Iworked to make the program a success. I continued tohave high fever and headache even after the program,”Dr Johnson recalls that fateful day of 1962, “I asked oneof the inmates to apply Eucalyptus Oil on my head.Unfortunately, when he picked up the bottle, it slippedfrom his hand and fell on my eyes. Instantly my eyesbecame red like tomatoes and bulged. Though the painsubsided after nine days of medication, I lost myeyesight.”

It was indeed a severe blow to the young Johnsonwho had nurtured an ambition to become a socialscientist. “I was shocked beyond words as I was in theprime of my age. I had already become a Superintendentat the age of 23, but life seemed to come to a stop in justone single blow,” Dr Johnson recalls.

“When they came to know about the situation, myparents were shocked and my mother suffered a heartattack. While she was taken to a hospital, I was taken tothe Madurai Eye Hospital where the eminent eyesurgeon, Dr Venkataswamy, tried his best to help me.But nothing much could be done as the optic nerve hadalready been damaged.”

He would remain visually impaired throughouthis life, he realized. This changed Dr Johnson’s lifecompletely. Reconciling with his condition, he tooktraining in the field of rehabilitation under an AmericanProject Grant. Later he organized the pilotdemonstration of the rehabilitation project for the blind

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at Madurai Medical College.

As part of the Project, he got a fellowship to go toBoston University, USA, where he studied rehabilitationcounseling, management and administration for thenext two-and-a-half years.

After returning back to India, Dr Johnson wantedto join the Madurai Medical Centre. However, he wasposted to the Christian Medical College, Ludhiana ashead of a two-year research and rehabilitation projectunder the PL-480 grant. “I landed in Punjab in 1964.The project was aimed at rehabilitating the war-disabledpeople and I had to look after both the ophthalmic andorthopedic side,” he recalls.

The American grant stopped in 1974. “However,by then, I had started exploring avenues for continuingthe program I was involved in,” he says, “I went toGermany and established contact with the ChristoffelBlinden Mission. Their officials came to Ludhiana,examined the work of the project and decided tosupport it.”

Determined not to let down the persons withdisability with whom he was working, Dr Johnsonstarted the Vocational Rehabilitation Training Centrein 1974. There were initial hiccups due to paucity offunds despite support from the German organization.

After two years of struggle during which besidesconcentrating on providing rehabilitation services, DrJohnson had to raise funds, a full-fledged rehabilitationcenter came up. Both the Christoffel Blinden Missionand the Union Welfare Ministry supported his project.

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The Centre was established in the land given by thePunjab Government in 1976.

The main aim of the Centre was to continue theprogram of rehabilitation and resettlement started atthe Christian Medical College besides providingvocational guidance and training to those who had lostvision suddenly. It decided to work in close co-operation with all hospitals in and around Ludhianaand offer training in mobility and travelling tacticsincluding cane techniques to the visually impaired.

By establishing training-cum-production centersand sheltered workshops, the Center sought to instillin the disabled a sense of achievement. It also aimed atproviding employment to the visually impaired andother disabled in the remote villages under the home-teaching and rehabilitation program.

Dr Johnson’s effort in involving the local people,lions club and other organizations also proved to bequite successful. In the very first decade of its existence,the VRTC was able to meet immediate needs of thepersons with disability including vocational training,special education, medical and relief servicesresettlement and placement services.

In 1976, VRTC conducted a survey to identify jobsthat were available for the disabled. It has beenconducting similar surveys from time to time so as toensure employment opportunities for the persons withdisability.

“The factories were very reluctant to hire ourstudents initially,” says Dr Johnson, “We had to visit

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them personally and try to persuade them. Now thereare about 40-50 factories that employ our students. Anumber of them have been employed in banks, stockexchanges and the Kapurthala Coach Factory.”

For quite a large number of students, life haschanged after they joined the VRTC. For instance, Ms.Nimita Sharma is a lecturer in vocal music at theGovernment College, Ludhiana. She is of the firmopinion that persons with visual impairment shouldbe given training in courses like information technologyand beauticians course so that they can find meaningfuljobs.

Emphasizing the role of the VocationalRehabilitation Training Centre (VRTC) in shaping hercareer, Ms Sharma adds that there should be moreconfidence building courses for the visually impaired.“Such persons lack self confidence, so there is need toencourage mainstreaming so as to develop theirconfidence levels.”

Similar views are expressed by Ms SandipikaMalhotra, who was Ms Sharma’s classmate, at VRTC.She is a music teacher at the Government Girls’ SeniorSecondary School, Kapurthala. She points out that theservices available to the visually impaired areinadequate. Besides she feels there is need to concentratea lot in the rural areas.

Both Ms Sharma and Ms Malhotra have beenstudents of the first batch of the education departmentof VRTC which started functioning in 1975. “What weare today is because of uncle and aunty,” they sayreferring to Dr Johnson and his wife.

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A student at VRTC who has got an UniversityDegree

is working on the computer with the help oftalking software system

“We were one of the earliest Institute in the countryto start computer training for the visually impaired,”Dr Johnson points out, underscoring the importance ofexposing persons with disability to the InformationTechnology revolution.

The systematic growth of VRTC has led to theevolution of 18 full-fledged departments. Theseinclude: departments of social service counseling;medical and relief services; guidance and counseling;special education; mobility and orientation; low visionaid for the partially sighted; vocational training;transcription unit-cum-mini Braille press-cum-recording library; community-based rehabilitation;resettlement-cum-placement; sheltered workshop forvisually impaired/differently abled women; integrated

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workshop for the visually impaired; modernequipment bank for the visually impaired; multi-purpose mini workshops for the visually impaired anddifferently abled in the rural areas; public relations andfund raising; consultative services and religious andcultural activities.

“All these departments have been playing animportant role,” says Dr Johnson. For instance, theDepartment of Special Education has been providingeducation up to the plus Two level and is approved bythe Punjab School Education Board. Presently about 160visually impaired and differently abled children areprovided education. Similarly, the Social Servicedepartment functions as a bridge between the VRTCand patients both in rural areas and in remote villages.Counseling services are also provided to parents andmembers of families of patients.

The VRTC has also adopted about 50 villages inLudhiana-Pakhowal area. As many as 250 physicallyand visually impaired persons have been identified andrehabilitated under the Community basedRehabilitation program. For instance the MultipurposeMini Workshop in Bhanohar village imparts trainingin weaving, knitting, chair caning, candle making,tailoring, dairy farming and poultry to persons withdisability in as many as 10 villages. Around 25 peopleare trained annually according to their aptitude andcapacity. There are 15 such multipurpose workshopsworking in the area.

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A view of one of the six Multi PurposeRehabilitation

Units established in the rural areas each covering10 villages.

The results of these concentrated efforts are therefor all to see. Harpreet Kaur of Chaminda village isseverely polio-afflicted. She underwent a six-monthtraining feeding cattle, taking buffaloes to grazing fieldsand milking them. Then she was given Rs 6000 asfinancial assistance to buy buffaloes. “I sell milk at Rs10 per kg and am able to earn about Rs 60 everyday. Ifeel good as I am no longer a burden on others,” shesays.

Prof Arin Chatterjee, Chairman, VRTC says theCentre, with the advancements in technology, wouldhave to keep pace. “New training methods would haveto be devised so that our students can compete withothers,” he says.

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“The quality of eye sight is directly related to thequality of life,” continues Prof Chatterjee, “It isimportant that we take all steps to prevent blindness.This is the reason VRTC’s Mobile Eye Service goes doorto door creating awareness about eye care.”

A view of the Transcription Unit-cum-Braille Presswhere

the visually impaired transcribe books andbiographies.

“The days of visually impaired persons not havingenough opportunities are over,” Prof Chatterjee says,“VRTC strives to upgrade the technology available andimpart latest training to ensure that our studentscompete with the rest.”

Going down memory lane, Dr Johnsonacknowledges his gratitude to his wife who has beenhis constant support and has been the force behind his

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efforts to transform the lives of persons with disability.

“I had hardly met any visually impaired personbefore my marriage in 1967 and was of the view thatsuch persons were totally dependent. I was simplyamazed to see how independent Dr Johnson was,” MrsSara Johnson says.

However, Dr Johnson feels it was impossible toovercome one’s disability completely. “I do not knowhow my wife or daughter looks like,” he rues.

“Probably I lost my sight only to work for thevisually impaired and render services to them,” heconcludes.

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Father Thomas FelixFather Thomas FelixFather Thomas FelixFather Thomas FelixFather Thomas Felix

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Father Thomas FelixTrained in agriculture, they can be described as

being truly ‘differently abled’. Yes, Milton, Clinto,Aji and Omar not only look after cows and the rubberplantation, but they also adroitly lend their hands incultivation too.

They are the products of probably one of the fewagricultural universities for the mentally retarded.Set up by the Central Institute on Mental Retardation(CIMR) at Kuttichal, about 30 km away fromThiruvananthapuram, Kerala, the Agricultural-Horticultural Rehabilitation-cum-Training Centeraims to develop living skills in them and make themself-sufficient through total development.

This agricultural university for the persons withmental retardation takes up a wide range of activitiesto give maximum exposure to the differently abledstudents. The 8.75 acres of land has an animalhusbandry unit and produces spice, tubers, foddergrass, vegetables and coconut. It also has agreenhouse.

“We are now planning to set up a plantmuseum,“ says Mitilda, who is in charge of theCenter, “We are also planning to go in for massproduction of medicinal plants. Besides a ThriftSociety would be launched soon.”

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CIMR’s Agricultural-HorticulturalRehabilitation-cum-Training Centre

“Transforming the lives of the persons with mentalretardation and their families is our endeavor,” aversFather Felix, a pioneering worker in the field of mentalretardation. The agricultural university for the personswith mental retardation is his brainchild and he firmlybelieves that training in agriculture is important as alarge number of them live in rural areas.

Born on August 31, 1936 at Kaduthuruthy, nearKottayam, Kerala, Father Thomas Felix was the fourthson of his parents. “My mother had a strong influenceon me to accept the disabled as complete humanbeings,” Father Felix, who has been championing thiscause for the last 30 years, reminisces, “She set anexample by treating a child with mental retardationwho lived next door with love and affection.”

After completing high school Father Felixrenounced family life and joined the Carmelites of Mary

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Immaculate congregation. For most part of the nextdecade, he prepared for priesthood, learning languagessuch as Latin and Syriac as also subjects as varied asPhilosophy, Theology, Logic, Literature andEducational Psychology. He was a student of theDharmaram College, Bangalore for seven years.

In 1964, he was ordained as Father Thomas FelixKurichiaparambil. Devoting himself to social work atChanganassery in Kottayam district, he organized manyconstructive activities for the poor in the area likebuilding houses for the homeless.

“My visits to the poor households brought me indirect contact with many children whose developmentwas delayed,” recollects Father Felix, “These childrenwere condemned to dark corners of their homes andwere given no opportunity to develop into full humanbeings. Seeing their condition, I was reminded of thecare and affection my mother used to give to the retardedchild next door.”

“At that time, no religious priest was workingsolely for the persons with mental retardation,” hecontinues,” I went to the Diocesan Committee and askedwhether I could start working for the mentally retarded.The Committee agreed.”

In order to have the right understanding of theproblems of persons with mental retardation, FatherFelix undertook three months extensive training inGujarat besides travelling to different institutions acrossthe country.

Finally in 1971, he started work for the mentally

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retarded by setting up a center - Asha Bhavan - atChanganasserry with just five children. Funds were amajor problem in the early days and Father Felixapproached many religious bodies for support.However, he always believed that where there is will,lack of money cannot be a hurdle. Undeterred hecontinued his work.

In 1975, a new building for boarding and lodginginmates of Asha Bhavan was constructed. In order toexpand his work, Father Felix enlisted the services ofnine nuns and trained them in special education.

In the same year, Father Felix attended the WorldCongress on Mental Retardation held in Dublin. Thisgave him the opportunity to visit several otherEuropean countries including Spain, Belgium,Germany, Holland, Sweden, France, Denmark,Switzerland, England and Italy. He did a comparativestudy of centers working on mental retardation. In St.Vincenzstift, Germany, he took a course on specialeducation.

Realizing that he should equip himselfacademically if he were to render better services for thementally retarded, Father Felix enrolled himself forgraduation and then post graduation in social scienceswith special reference to the plight of the mentallyretarded at the Duquene University in Pittsburg,Pennsylvania, USA. Subsequently he took three monthstraining at the Birmingham Albama Centre forManagement of the Mentally Retarded.

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“It was there that I realized that the existing threeR’s (reading, writing and arithmetic) was not suitablefor training the mentally retarded,” Father Felix says,”Instead I felt that the three C’s concept based on basicshapes and colors was more suitable.”

According to him, the three C’s are aimed atkindling creativity. They stand for Comprehension,Competence and Creativity, the three stages ofdevelopment. “The premise underlying this conceptis that the world around us can be reduced to basicshapes and everything else can be built up from theseshapes—square, circle, rectangle and triangle,” he says.

He emphasizes that a person with mentalretardation can be developed into a productive,versatile, creative and socially acceptable normalhuman being by training her/him to know the basicshapes. “Under the three C’s curriculum there are fourstages of development namely knowing shapes, makingshapes, selecting shapes and combining shapes,” hesays.

“Through these classes a student is able to cometo terms with the basic concept about the differentshapes, how to give form to the different shapes usingdifferent materials, how to select shapes from a groupand finally, how to combine shapes to produce newobjects.”

“Thus, it is possible to develop four functionsnamely motor, psycho-social, language and cognitive,”Father Felix points out, ”This leads to development ofmind and body and provides the requisite skills for an

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independent living.” More than 90 special schools inKerala are now following the three C’s concept.

After returning to India in 1980, Father Felix set upthe All Kerala Association for the Mentally Retarded. Itis an association of parents, relatives and well wishersof persons with mental retardation. Through thisassociation, he conducted a series of seminarsthroughout the state to create awareness on mentalretardation. Subsequently he also set up Asha Kendramat Karikkamuri, Cochin.

In the same year, Father Felix started the CentralInstitute on Mental Retardation in Thiruvananthapuramfor training teachers in Special Education. “The aim wasto produce competent teachers for total developmentof a special person,” Father Felix points out, “Nothingmuch can be achieved without trained teachers.”

In this backdrop, Father Felix prepared acomprehensive syllabus for training competent teachersfor the differently abled. “The focus is again on the threeC’s concept and the curriculum is in four phases: globalunderstanding, structured understanding, non-structured understanding and integrated totalunderstanding.”

In 1983, he started another school for those withmental retardation, the Development Centre for theMentally Retarded (DCMR), which trains about 200students every year. “With the belief that those whosedevelopment is delayed need ample opportunities tointeract so as to make them confident, DCMR has beeninitiating a large number of programs for its students,”

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says Sister Elise Mary, who was one of the earliest tojoin Father Felix in his mission.

An Academy of Performing Arts has also beenestablished to nurture the potential of students invarious art forms. “Performing arts like dance dramaserve as an effective therapy,” says Father Felix.

Students performing at the Academy ofPerforming Arts

For instance, Kiran, a student at DCMR, has evolvedinto a brilliant sitar player. He can play the violin, tabla,guitar and mridangam with equal ease. Students likehim are also able to perform dance dramas and havegiven performances in many parts of the country.

Sister Elise Mary informs that in 1989, somestudents of DCMR started managing a MILMA milkbooth, probably the first ever booth managedcompletely by persons with mental retardation. Some

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students have also been running a stationary shop andcycle workshop.

As part of his effort to make those with mentalretardation independent, an Independent Living Grouphome at Kovalam was set up in 1987. Groups of youthswith mental retardation trained by DCMR make use ofthe Independent Living facility at this Center. It formspart of their training to lead an independent life.

Since early diagnosis plays a vital role inpreventing life long disability in children, Father Felixinitiated the Jeevan Prakash Child Center in 1990 as awing of the Central Institute on Mental Retardation. TheCenter takes up Early Diagnosis, Early Therapy andEarly Intervention of abnormal motor functiondevelopment in newborn babies and children throughVojta’s Neukinesiological Examination andPhysiotherapy, Montessori therapy and Orofacialtherapy.

“The Center demonstrates Vojta Physiotherapy toparents,” says Sister Lucy, also working with FatherFelix since long, “It enables parents to make their childdo daily exercise at home, without using anyequipment.” For the benefit of rural people, anganwadiworkers are also being given training in identifyingmotor function retardation in newborn babies andchildren. Since 1995, the Center has extended its servicesto hospitals of Thiruvananthapuram so that maximumnumber of children could benefit.

In order to provide vocational training to thementally retarded, a program under the auspices of

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CIMR and Kerala State Nirmithi Kendra was initiatedin 1999. According to Sister Lucy, the major aim of theproject, conceived as part of the community-basedrehabilitation program, was to provide vocationaltraining to the mentally retarded persons above the ageof 17.

“From every Panchayat, a group of eight personsis selected for training. The group consists of threementally retarded persons above the age of 17 who canundergo the training, their mothers, a volunteer who isrelated to the families of the mentally retarded andanother person with a minimum of senior secondaryeducation,” she says.

“After completing the training, the group goes backto the Panchayat,” she continues, “They then searchother children with mental retardation in the Panchayatand integrate them and their mothers to the group withthe help of Nirmithi’s centres.”

1998 was a landmark year for the Central Instituteon Mental Retardation. During this year, a NationalPilot Project to integrate the mentally retarded withfamily and community was initiated. According toFather Felix, though the original target of the PilotProject was to reach only 7,500 families in six statesincluding Delhi, CIMR could reach as many as 10,000families. About 10,369 mentally retarded wereidentified and exercises initiated to integrate them withfamily and community.

“The Pilot Project provided many a valuableinsight into the mainstreaming of the mentally retarded

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in the Indian context. It also brought to the fore the long-standing need to start development centers for thementally retarded at the community level,” he adds.

After the successful coverage of the Pilot Project,CIMR implemented the Project in 23 states and unionterritories with special emphasis on the North EasternStates and Jammu and Kashmir. More than 30,000persons with mental retardation were covered and 54voluntary organizations were involved. Essentially theProject consisted of (a) identification; (b)assessment of the child along with the parents, andmaking them work independently as well as jointly indrawing books with a view to evaluate their levels ofretardation; (c) distribution of teaching materials andtraining mothers to get them involved in thedevelopmental and learning process; and (d) equippingthe mothers and the families with instruction materialslike ‘Home a School’ to make the home and thesurroundings provide a natural learning environment.

Father Felix continues his mission to transform thelives of the persons with mental retardation despitemany challenges. His perseverance can be summed upby what Joaquin Miller had written in ‘Columbus’:

“Brave admiral, say but one good word:

What shall we do when hope is gone?”

The words leapt like a leaping sword:

“Sail on! Sail on! Sail on! And on!”

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Dr Leelavathy PatrickDr Leelavathy PatrickDr Leelavathy PatrickDr Leelavathy PatrickDr Leelavathy Patrick

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Dr Leelavathy PatrickDr Vijaylaxmi, Vanaja , Kavita and Rosalyn are not

just parents of special children. They are volunteerteachers as well. It all began when the desire to ensurebetter services for their children brought them regularlyto the Clarke School for the Deaf and its Director, DrLeelavathy Patrick motivated them to volunteer. Nowinstead of just coming to the School regularly, theyvolunteer their time helping other children too.

“Here at the Clarke School, I try to motivate parentsto volunteer and teach children,” says Dr Patrick.“Training of parents is very important. Only then canthey handle their children and families better.Education, rehabilitation and closer co-ordinationbetween parent and child are like three sides of atriangle,” she continues, “We encourage parents ofchildren to attend school along with them to learnmethods followed here and to implement them at home.For those parents who come from far away places weimpart distance education once they go back.”

Born on May 25, 1939 in Kotagiri, Nilgiris, TamilNadu, Dr Leelavathy Patrick’s early inspiration was hermother who used to serve street children. This inducedher to volunteer from a very early age. Right from theage of 10, she used to work in the village dispensaryfrom 7 a.m. to 9 a.m.

Soon after passing out from college, Dr Patrick took

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up a job as a social worker in the rural developmentwing of the Tamil Nadu Government. She worked inNilgiris, Trichy and Coimbatore.

The urge to do something different made her quitthe Government job. Opting for further education, shewent on to do her Masters in Education. While pursuingher studies, she came across an advertisement on behalfof the Little Flowers Convent, Chennai. The challengewas to upgrade the School. She took it up.

While working at the Convent, Dr Patrick realizedthat total rehabilitation was an essential component ofeducation of persons with disability. “There was a girlwith hearing impairment at the Convent who wasslowly losing her sight as well,” she reminisces, “Shewas upset and one day asked me what she could doafter education. I had no answer. However, this changedmy whole perception towards such children.”

“To initiate the process of total rehabilitation, Idecided to introduce vocational training at the LittleFlower Convent,” she continues, “But then MotherSuperior did not give much support.”

Not one to be cowed down, she initiated a Societyfor Aiding the Handicapped at her own residence withsupport of friends like Dr S K Nagarajan. “The shelteredworkshop had people with all disabilities — visuallyimpaired, physically handicapped and hearingimpaired,“ she informs, “Within a short time, there wereabout 60 people. We started teaching cane work,needlework and tailoring. There was a blind boy,Ganesh, who would cook and also do shopping. Then

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there was a naughty boy with hearing impairment whowas trained to become a carpenter. It was all like afamily.”

In 1967, Dr Patrick got a Fullbright Scholarship tothe USA on a Cleveland International Program for youthleaders and social workers. From there she opted tostudy Masters in Special Education (for hearingimpaired) at Smith’s College, Massachuchetts.“Simultaneously I got the opportunity to work in theClarke School for the Deaf,“ she says, “HoweverI did not want to stay back in the US. I was keen tocome back.”

Back in Chennai, she was raring to implement hernew ideas at the Little Flower Convent. But to becomeits Principal, it was mandatory to be a nun. She was notand so she quit. Meanwhile, she took up a job at theAmerican Consulate.

“The turning point came in 1970,” Dr Patrick recalls,“A couple came from Madurai with their only child, agirl with hearing impairment. She was only one-and-a-half-years old. They had come to know about me froma newspaper article and wanted my help in dealing withthe child’s disability.”

“Apita’s disability had shaken her parents,“ shecontinues, “I realized that there were many like her whoneeded help and guidance. I made up my mind to starta school for the hearing impaired.”

Thus with three children—one hearing impairedand two with multiple disabilities—the Clarke Schoolfor the Deaf came into existence. “Apita, Kapali and

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Kamala were the actual founders of the School,” sheinforms.

Started as a speech and hearing center, the initialphase was full of challenges. “We had only one hearingaid appliance which I had brought from the USA,” DrPatrick reminisces, “The plywood boxes in which I hadbrought my things from USA were converted intodesks. The school was started at my residence and Itook permission from the Clarke School, Massachusettsto use its name for my school. In fact, I still get technicalinputs from there.”

Within a year, the number of students rose to 30.In order to provide a special thrust to the involvementof parents for educating and rehabilitating the students,an Association of Parents of the Deaf was initiated in1972.

According to Dr S K Nagarajan, the School’s co-founder, most teachers those days were not interestedin educating the hearing impaired. There was no properdiagnosis and even doctors did not have much ideaabout the importance of early identification and earlyintervention. “It was through several Parents’Associations meetings that we convinced people aboutthe need for early intervention. We told them that withproper rehabilitation, children with hearingimpairment could lead a normal life.”

Right from its inception, the objective of the ClarkeSchool has been to identify the disability as early aspossible and provide necessary corrective andrehabilitative training and aids. Developing the

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potential skills and abilities to the fullest possible extentand preparing them for integration into the mainstreamprovided an added thrust.

As the number of children grew steadily, the Schoolshifted from Dr Patrick’s residence and moved to itspresent building in 1976. Initially, it was on rent.

“Fund raising was a challenging task,” Dr Patricksays sharing an interesting anecdote, “In 1982 whilereturning from Hamburg to Frankfurt after attending aconference, a brochure of the School accidentally felldown in the train. A lady sitting besides me picked itup and asked me how I was running the School. Ireplied in a humorous tone, ‘by begging, borrowingand stealing.’ Imagine my surprise when she gave mea booklet of the Christoffel Blinden Mission and askedme to contact them. “

“The Christoffel Blinden Mission gave us timelysupport to put up a new block,” she says,“Unfortunately I did not note down the lady’s number,so I could not thank her.”

The Clarke School gives a lot of emphasis to overalldevelopment of a child’s personality. Children aregiven extensive training in dance and drama. Accordingto Dr Patrick, rhythm and body-posture needs to betaught to a child with hearing impairment so that theirlanguage and cognition develops. Keeping this in mind,the Sadhna Troupe for deaf artists was initiated in 1976.

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Students at Clarke School

Ms Dipti Karnad, Principal, Clarke School, informsthat students have been giving dance performances indifferent parts of the country. “Our children have wonawards in many competitions,“ she points out.

Another thrust area of the School has been to reachout to areas where there are less or no rehabilitationservices. “We have been conducting surveys andorganizing camps in remote villages and slums,” saysDr Nagarajan.

In 1988, the Clarke School’s first rural extensionproject was started in Kelambakkam’s Senganmmalvillage. “When we went to the Senganmmal village toorganize a camp, we found that a lot of children weresuffering from osteoscherosis and so, we decided toinitiate a project there,” Dr Patrick says.

“It was a dry summer and there was no drinking

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water facility. Realizing the need to do something, westarted our rural extension program,” she continues.Presently about 50 children are being trained here inagriculture and sericulture work. Right from a SpecialSchool to providing community-based rehabilitation,the rural extension project caters to 15 surroundingvillages. Majority of the students comes fromeconomically backward areas.

“Our holistic education and rehabilitation programhas ensured that a large number of students not onlygo for higher education but at least 10 of them areintegrated in general schools every year,” Dr Patrickinforms.

The School has two separate sections with Englishand Tamil as the medium of instruction. The classesfor the hearing impaired are grouped into Pre-primary,Pre-school, Lower School, Middle School, High Schooland Higher Secondary School. The teacher student ratiois about 1:12.

There is a separate section for the children withmental retardation, that is divided into Custodial,Trainable, Educable and Vocational Groups. Thesechildren are placed in respective grades according totheir mental and physical abilities. A curriculum, whichprepares the child for an independent life, is followedhere.

In order to cater to the special needs of the deaf-blind children, a separate section was started in 1998.“Though we had deaf-blind children right from the

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beginning, they were receiving education along withother children with hearing impairment,” Dr Patricksays, “In order to provide more specialized services,we started Sadhana, the Centre for the deaf-blind.”

The aim of Sadhana is to help the deaf-blind meetthe challenges at all levels including understanding,communication skills and self-care.

“Every deaf-blind child who comes here is firstexamined by specialists for the nature, type and degreeof sensory impairment,” informs Ms Karnad. “Besidestesting their residual level of hearing and vision, theyare also subject to various psycho-diagnostic tests,” sheadds.

Sadhana, which has a model school and therapyand training center, trains deaf-blind children with theco-operation and involvement of parents. Presentlythere are about 22 deaf-blind children. “Here, thechildren are trained according to their special needs andparents also learn the special methods and techniques,”Ms Patrick says.

The school has been trying to address the problemof shortage of trained humanpower for persons withdisability in the country. “Ever since we started theschool, we have been focussing on the need to havetrained teachers,” points out Dr Patrick, “We have nowstarted a one-year diploma course in education forhearing impaired. Besides another one-year teachertraining program in educating the mentally challengedhas also been initiated.”

“We are now in the process of starting a teachers’

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training program for the deaf-blind,” she continues.

Age has not caught up with Dr Patrick as shecontinues to pursue her mission of transforming thelives of the differently abled children. Going by thenumber of children coming from all parts of the countryand even from abroad the Clarke School has emergedas an important institution for hearing impaired in thecountry.

To conclude, Dr Leelavathy Patrick has a mantrafor development of personality of a child with hearingimpairment. “Parents should treat their child as anyother child. Only then can they help the child becomeas independent as possible,” she avers, ”However, overthe years, experience has shown that most parents areover-dependent on institutions. This is not a healthytrend.”

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Major H P S AhluwaliaMajor H P S AhluwaliaMajor H P S AhluwaliaMajor H P S AhluwaliaMajor H P S Ahluwalia

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Major H P S Ahluwalia“Each man carries within himself his own

mountain, which he must climb to attain a fullerknowledge of himself. The mind has its mountains andcliffs, fearful, sheer, unfathomed. The physical act ofclimbing a mountain has a kinship with the ascent ofthat inward, spiritual mountain which every man hasto climb sometime or the other. The kinship is shownmost clearly from the effects. Whether the mountain youclimb is physical or spiritual, the climb will change you.It will teach you much about yourself and about theworld.“

It has been a dream come true : The Indian SpinalInjuries Centre has emerged into a super speciality

hospital for spinal injuries.

This is the philosophy of the man who has inspiredSouth Asia’s most advanced speciality hospital forspinal injuries. The Indian Spinal Injuries Centre has

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been able to bring cheers to the life of hundreds ofpeople who have been living like vegetables. TheCentre which is the only one of its kind in India has notevolved in a day. It is the fulfillment of a vow of thesame person, Major H P S Ahluwalia, who whenadmitted at Stoke Mandeville Hospital, Englanddecided to start a similar centre in India.

“It was while at the Stoke Mandeville Hospital, Irealized that when a person with disability has to berehabilitated physically by means of exercise, his mentalrehabilitation is even more important,” says Major H PS Ahluwalia, ”There for the first time I understood whatmy disability was and how did one make the best useof what is left.”

“The restoration of my self-confidence was themost important element in the rehabilitation process,”he continues, “There was no such facilities available inIndia. Then and there I decided to work towards startinga Centre having world class facilities for treating spinalinjuries.”

Major Ahluwalia had his early childhood in Shimlaand Lahore. During partition in 1947, he was in Lahore.He and his sister had a tough time leaving Lahore. Herecalls the efforts of their tonga driver, a Muslim, whorisked to take him to his sister’s school. And then theirjourney from Lahore to Amritsar, a journey of about 35miles, was a nightmare. “The train halted frequentlyand at each halt we heard blood-curdling cries,” hereminisces the tragedy of partition.

After having passed the exams of the Indian

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Military Academy, he took two years’ training forpermanent commission in the Army. Later he took aone-year course on basic automobile engineering. Inthe beginning of 1961, he did a basic course onmountaineering, later he went on to do an advancecourse. In 1962, he was part of the all-army team to scalethe 20,000 feet high Mount Kokthang. Later he was partof the successful Indian expedition to Mount Everestin 1965.

It was during the Indo-Pak war of 1965 that MajorAhluwalia sustained bullet injuries. He recalls thatfateful evening of September 30, 1965 which changedthe course of life. “The war had just ended and a cease-fire had been declared. We were returning to our basewhen suddenly there was a crack of a bullet and I fell.The bullet had hit me in the neck.” For more than oneyear he struggled, his condition remaining unchanged,he underwent treatment without much success.Coupled with this condition was his low self-confidence; of his not able to do anything. This allchanged in Stoke Mandeville, England.

“Following the injury sustained in the war, I hadto make an unusual effort at adjusting myself to thenew condition of life. I think that my experience as anEverester has provided much of the inspiration to facelife’s ordeals resolutely. If climbing the mountain wasa worthwhile achievement, would it be an exaggerationto describe the conquest of the ‘internal summit’ assomething higher than Everest?” Major Ahluwaliaquips.

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“Initially, I approached the Ministry of Health forsupport to start a spinal injuries centre,“ MajorAhluwalia says, “However, I could not get any helpfrom them.”

Major Ahluwalia then mobilized a few friends toinitiate the Indian Spinal Injuries Centre in the early1980s. He recollects the day when he went forregistration of the Centre. “When I reached the office ofthe registrar, I was told the registration fee was Rs 250.I didn’t have the money. I borrowed the money frommy driver and deposited it for registration.

In the initial stages, fund raising was not easy. Somuch so, Major Ahluwalia started a lottery scheme toattract funds for the spinal injury centre. Friends andwell-wishers from all over the world came in supportfor his project. For instance, Sir Edmund Hillary, thefirst person to climb the Everest was constantly tryingto help Major Ahluwalia in his endeavor.

“While I was contemplating as to how to raisefunds for setting up the Centre, I met a person in Italywho was willing to help. I met him while giving lectureson mountaineering in Rome,” he continues, “Heinformed that the Department of Cooperation in theItalian Government’s Foreign Office could support theCentre.”

After a series of follow-ups, a memorandum ofunderstanding worth $ six million was signed with theItalian Government to set-up the Centre in the late 1980s.Support for the construction of civil work of the Centrecame from the Ministry of Social Justice and

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Empowerment, Government of India.

“However soon we realized that we needed morefunds in order to have the latest equipment,” MajorAhluwalia says, “Friends suggested that I meet thevisiting Italian Prime Minister Mr Androtti during thattime to take up this issue.”

“After great difficulty, I was given just threeminutes to meet Mr Androtti during breakfast time,”he continues,“ However, within three minutes I couldconvey to him the entire project.” Impressed, MrAndrotti asked Major Ahluwalia to reach Rome within15 days and get all the papers ready. He did meet himat the appointed time and $10 million were grantedinstead of $ six million which was agreed previously.

Mr Harbans Lal Tandon, a close associate of MajorAhluwalia, who has been with him all through,describes the struggle involved in the evolution of theCentre in its present state. “We had to run from pillarto post to get the required support and facilities. Butthe struggle was worth as now the Centre is able to reachout to thousand of people with spinal injuries.”

The Centre was inaugurated in 1997. Over theyears, the Centre has emerged as a comprehensive,specialized, general healthcare hospital. In fact it hasnow emerged as a pioneering institute of its kind inAsia. The Centre is now also advising and guiding othercentres in the country. Infact it has helped in the settingup of four more centres in the country. In order toprovide better services to the patients, the Centre hasnow started training programme for care givers.

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The Centre has emerged as a comprehensive,specialised, general healthcare hospital

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Madhukar Vishwanath ShirdhonkarMadhukar Vishwanath ShirdhonkarMadhukar Vishwanath ShirdhonkarMadhukar Vishwanath ShirdhonkarMadhukar Vishwanath Shirdhonkar

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Madhukar VishwanathShirdhonkar

“The onslaught of blindness is a tragedy as it hasmultiplier effects on the person blinded, on his familyand on his whole circle of friends and neighbors, lifeholds worse tragedies than this. And the first thing thatneeds to be done is to admit the reality and meet it faceto face,” philosophizes Mr Madhukar VishwanathShirdhonkar quoting from a book by Reverend ThomasJ Caroll.

Working for the persons with visual impairmentfor over four decades, Mr Shirdhonkar opines thatrehabilitation of a visually impaired person has fourphases: training the other senses to take over the role ofsight; training in skills and use of devices; restoringpsychological security; and changing attitudes ofsociety to the visually impaired and assisting them tomeet the prevailing attitude.

Born on October 10, 1932 in Jalon Urae, UttarPradesh, Mr Shirdhonkar had congenital blindness inleft eye ever since birth. Recollecting his early childhood,he says he went to a regular school in Ujjain securingtop positions.

“By the age of 14, I realized I was losing sight,“ hereminisces, “It was Shivaratri and I had gone to a temple.During prayers, a jar full of water accidentally fell onmy eyes. This started the process of detachment of the

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eyes. I was taken to Gwalior for treatment. However,unfortunately, during this period, father got hernia andsubsequently died. This delayed my treatment andwithin four months time, I lost the vision of my righteye.“

In those days there was no ophthalmologist inUjjain and awareness regarding facilities for the visuallyimpaired was also not much. As if the loss of hiseyesight was not enough, five relatives died during theperiod 1946-49.

Not knowing what to do, Mr Shirdhonkar took tostudying Sanskrit. “One of our tenants suggested thatI go to Mumbai as there was a school for the visuallyimpaired,” he recollects. There was life beyond visualimpairment, he was told. On July 7, 1949, MrShirdhonkar joined the Victoria Memorial School forthe Blind, Tardeo, Mumbai.

“The Principal, Mr KNK Jessawalla played a majorrole in shaping my career. There were very feweducationists for the visually impaired in those daysand Mr Jessawalla was one of them,” he says. A two-year advanced training in physiotherapy followedthree-year Physiotherapy training at the school. Theyoung Shirdhonkar also took active part in groupleadership, drama and sports.

The passion to do something different for personswith visual impairment took shape in 1955. “I had anopportunity to meet Helen Keller when she had cometo India,” he reminisces, “I experienced a strange energypassing over to me as I shook hands with her. There

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and then I took a decision to devote my life for thewelfare of the visually impaired.”

Another event, which served as a catalyst for futureactivities, was his participation in a textile exhibitionin Mumbai. “It was a month-long affair and a few of us,all visually impaired, were involved in the sales.During this period we realized that no one cheated us.This gave me a lot of confidence,” he says.

Mr Shirdhonkar came back to Indore and started aphysiotherapy clinic on August 15, 1955. “In thebeginning, there was a poor response. I thought I wouldbe forced to leave Indore. After more than 25 days ofstruggle, I was fortunate to treat a man with polio—myfirst patient,” he recalls.

While practicing physiotherapy, Mr Shirdhonkarwas simultaneously on the look out for a Governmentjob for which he met the Governor, Chief Minister, andothers. Finally in November 1957, he got a job atMaharaja Yeshwant Rao Hospital, Indore. Incidentally,he was the first physiotherapist with visual impairmentin Madhya Pradesh.

Mr Shirdhonkar cleared his class Xth in 1959. Bythis time he had motivated some people with visualimpairment, businessmen and others to start work forthe visually impaired. “There was hardly any awarenessin those days and so motivating people was a challenge.After one year of talks and discussions we formed theMP Welfare Association for Blind,” he says.

In those days facilities of education for the visuallyimpaired were far and few. Further there was no scope

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for vocational training or other employmentopportunities as well. It was a challenge to change allthat, he says.

One of the earliest rehabilitation services initiatedby the Welfare Association was training on chaircanning. The rehabilitation center was started in 1961in one room with four visually impaired persons.

Tracing the growth of the MP Welfare Association,Mr Shirdhonkar says, “It was tough to get work in theinitial stages. We ran from pillar to post. Governmentand private offices were approached for procuring chaircanning work.”

In less than a year, however, the WelfareAssociation started a hostel for those with visualimpairment. “Laxman Singh Pawar, a person withparaplegia whose house and properties had been takenaway by relatives needed shelter and became our firstinmate. Soon we had about eight inmates. The hostelstarted in November, 1961.”

New vocations were introduced as the number ofinmates increased. The focus was on need-basedtraining. “We could initiate non-formal education,besides training in handloom and weaving. However,in the first 7-8 years, we confined our activities toadults,” he says.

In order to bring organizations working for thevisually impaired in Madhya Pradesh together, MrShirdhonkar organized a state-level conference in 1965.The aim was to consolidate the activities of differentorganizations and to develop a common line of thinking

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for the cause. To commemorate one decade of servicefor the visually impaired, the M P Welfare Associationorganized an all-India Chess and Swimmingtournament in 1971. There were 24 entries in chess and45 in swimming. During this year, the Association gotits new building.

Mr Ishwari Prasad Patidar, Principal of the DrHelen Keller Dhrishtihin High School, and a closeassociate of Mr Shirdhonkar traces the growth of theschool. He himself lost his vision in class 8th due todetachment of the retina. “I firmly believe that thepersons with visual impairment be exposed to the bestof education. So when Mr Shirdhonkar wanted me totake up teaching in the school, I took it up withoutgiving a second thought.”

Mr Patidar got associated with the MP WelfareAssociation in 1964. He learnt Braille and with theassistance of a peon in the Association, Shiv Kumar,completed his class XII. He started teaching at the Schoolin 1974. At that time there were just two students.Presently there are about 100 students.

Mr Patidar, who has won the President’s nationalaward for best employee, emphasizes that the schoolkeeps a balance between spiritual development andphysical development. “We give 60 per cent time toeducation and 40 per cent to training and extra-curricular classes. Our philosophy is to provide a strongfoundation to children,” he says.

In 1972, the MP Welfare Association initiated aplacement service with support from Oxfam and Royal

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Commonwealth Society for Blind. Initially the trainedboys found placement in small-scale industries. Overthe years, a large number of boys got employment inBHEL, Itarsi Ordinance Factory, Bharat Aluminium,banks and in various departments of the stategovernment.

“Initially, our boys were not treated at par withothers,” Mr Shirdhonkar points out, “We established ablind labor association in 1980. The Association wentto court on the issue and finally won. The labor withvisual impairment then started getting equal andregular pay as the others.”

A number of students of the Association are nowwell settled. For instance, Sanjay Kumar Parasher tooktraining in special employment and started his ownglow sign business in 1995. His ‘Action Advertising’ isdoing well. “The M P Welfare Association for the Blindshowed me the path. Initially I had to struggle a lot butnow I get orders from companies like Daewoo andVideocon.” Children from the Association, he adds, nowcome to his place for internship.

Similarly Surinder Singh Chauhan is having aplastic molding business for the past one decade. Hehas two units and has eight employees on his roll. Heearns about Rs. 10,000 a month. He had approachedthe Welfare Association after his retina got detached.The Association trained him in plastic molding. Heworked in a private concern for sometime beforestarting his own venture. “I started with a manualmachine, and now have a fully automatic plant. WhileI handle one unit, my wife handles the other,” he says

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beaming with confidence. He wants to expand hisbusiness and avers that through sheer determinationand hard work, a person with visual impairment canachieve anything.

They are now self employed after getting trainingfrom the M P Welfare Association for Blind

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Mr Ramesh Tomar, one of the first visuallyimpaired to start a STD booth in Indore has initiated‘Swapnadeep Dhristiheen Sahkari Samiti’, a co-operative society for persons with visual impairment.“As the financial position of the persons with visualimpairment is generally weak, we aim to ensurefinancial self-dependence,” he says, “We have alreadymade a collection of Rs one lakh and we intend to dosomething really big.”

The Rehabilitation Counseling Camp set up by theAssociation in 1974 soon became very active in the state.The idea was to generate the idea of self-employmentamongst the persons with visual impairment. “Weinsisted right from the beginning that there should beno categorization of jobs which a person with visualimpairment could do and those who cannot do,” MrShirdhonkar asserts.

A school for girls with visual impairment wasstarted in Dewas in 1973 by the Association.Incidentally, it was the first such school in MadhyaPradesh. Mr Shirdhonkar established the MP Statebranch of the National Association of the Blind in 1979and became its founder secretary. In 1981, theAssociation started a Braille Press with support fromUNICEF. Till then there was no Braille Press in the state

Meanwhile in 1986-87, the Association establisheda school for tribals with visual impairment in Jhabuadistrict. Presently, more than 50 boys and girls arereceiving education there. “We are trying to expand the

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school and include more facilities,“ Mr Shirdhonkarsays.

Mr Shirdhonkar firmly believes that inclusiveeducation was the only panacea for the education ofchildren with disabilities. He avers that all vocationaltraining should be integrated in nature as a person withdisability can do anything with proper support services.

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Dr P Hanumantha RaoDr P Hanumantha RaoDr P Hanumantha RaoDr P Hanumantha RaoDr P Hanumantha Rao

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Dr P Hanumantha RaoThis is the story of an institution in Hyderabad

which attracts people from various parts of the country.For example, Samta has come from as far asMuzzafarnagar, Uttar Pradesh to ensure that her childimprove and becomes as normal as possible. She hasrented a house and has been staying for the past threemonths with her three-year old child whosedevelopment has been delayed.

Hoping that Raghav would someday go to anormal school, Samta is determined to make himindependent. Though she misses her family - Raghav’stwin brother and her husband, she is prepared to makethis small sacrifice.

“Never in these three months did I feel that I amalone here as the Sweekaar team has been very caring,”she says, “Raghav has now started crawling and canstand on his own legs. This provides me motivation tostay here.”

“I went to Delhi, Chandigarh and Hissar,” shecontinues, “But could not get suitable rehabilitationservices. I had lost all hope when a doctor in Delhi toldme not to give up. He asked me if we - my husbandand I - were to die what would happen to Raghav. Thismade us all the more determined to ensure that Raghavshould be independent.”

Her search ended when she came to Sweekaar-Upkaar. Another parent Mr Chawla comes from Delhievery three months for treatment and rehabilitation of

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his child. He too is a case of development delay. “InDelhi, one has to approach different institutions fortreatment,” he says, “There are no proper guidelines.”

The man behind Sweekaar-Upkaar, Dr PHanumantha Rao was born on September 16, 1945 inHyderabad. He comes from a family of doctors, whichused to run a 40-bedded nursing home.

In his school days, he led an aristocratic life. Butwhen he was doing his MBBS, the joint family brokedown. “Father’s practice dwindled,” he recollects, “Somuch so, I was chucked out of the medical college fornon-payment of fees. I implored the Principal to takeme back and with great difficulty, I finished my course.”

“I am a contributory product of friends and well-wishers. While doing MBBS, I decided to work for thesociety, to give back whatever I had taken,” he furtherrecalls.

After completing MD in medicine, Dr Rao went onto take training in rehabilitation medicine at the AllIndia Institute for Physical Medicine and Rehabilitation,Mumbai. “I wanted to take up the challenging task ofworking with specially challenged children and reachout to the unreached,” he says, recalling those earlydays.

With zeal to work for the specially challenged, hestarted the Hyderabad Special School for Children inNeed of Special Care in 1977 with just six children andtwo teachers.

“The School was started as part of my clinic in a

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garage,“ Dr Hanumantha Rao recalls, “There wasimmediate criticism from the inmates of the complexwho were opposed to housing the children with mentalretardation.” Undeterred, he set-up the SweekaarRehabilitation Institute for Handicapped to providecomplete rehabilitation services to the mentallyretarded. The Hyderabad Special School became a unitof Sweekaar.

“In those days, there was a lot of stigma attachedto mental retardation. They were looked down uponand treated with utter contempt,“ says Dr Rao, “In factone professor even asked me why I was wasting timeand resources on children with mental retardation.”

“I replied that there were so many people to helpthe abled but none to help the disabled,“ he continues,“I pointed out to him that all of us have one unseendisability or the other whether it was an emotionalproblem, short-temperedness, social maladjustment orintolerance. I told him that the disabled were actuallydifferently abled.”

Within no time, the number of children increasedand the School was shifted to a new place taken on rent.There was a realization that rehabilitation was notpossible till efforts were made to make them asindependent as possible. To make this a reality,Sweekaar launched a Vocational Training Center inSeptember, 1978. The Center was registered as a small-scale industry with the Department of Industry,Government of Andhra Pradesh. Initially, candlemaking, bookbinding, chalk piece, plastic doll making,envelope making etc were the trades that were

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introduced. Later embroidery, preparation of cloth bagsand wire bags and tailoring were introduced for girlstudents.

“As a result of our perseverance, many studentshave become productive members of the society. In fact,Mr Kishan Singh, one of our student was given theNational Award for the best Mentally Disabled Traineeand Employee,” says Dr Rao.

According to him, the first nine years was a periodof consolidation. A child specialist, he coupled hisprofessional work with the voluntary work at Sweekaarmanaging to ride two horses at the same time. “I workedalmost 18 hours a day,” he recalls, “By 1980, the numberof students increased to 41. The services of psychiatrist,psychologist, speech pathologist and other specialistswere enlisted.”

Finance was a problem in the beginning but thisdid not deter Dr Rao. “Never fear shadows, they simplymean there is light shining nearby. Only when patternsare broken, new worlds emerge”—this has been hisstrong belief.

The swelling number of students compelled DrHanumantha Rao to look out for new premises. Afterpersistent efforts, he managed to secure land forconstruction of a permanent building. The Instituteshifted to its own premises under tin roofed rooms in1981.

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Physical Medicine & Rehabilitation Centre

For the benefit of children with multiple disabilitiesand adults with physical disabilities, Dr Rao started adepartment of Physical Medicine and Rehabilitation in1986. This department mainly caters to the needs ofpeople from lower income groups. Besides a 24-hourOxygen Bank was also started by him to supply oxygencylinders to nursing homes in case of emergencies.

It was a time when not much facilities and servicesfor all categories of the disabled were available. “Justfacilitating services to one category of the disabled wasnot going to help the entire disabled population,” hesays, “So I decided to intervene in various othercategories of disability.”

Sweekaar started a Special School for the Deaf in1986. “A need-based approach was followed wheneverwe started something new,” he informs.

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Of the view that when an organization becomestoo big, it becomes unmanageable, Dr Rao startedUpkaar, a sister organization of Sweekaar, in 1987, tohelp the poor and needy children with their education.

“Since I had to suffer a lot during student days Ithought I should do something for needy students,” hesays, “Upkaar gives interest-free repayable loans foreducation besides awards and scholarships.”

While persons with disability in urban areas mayhave access to some services, those in rural areas donot have any. To bridge this gap, Dr Rao always nurturedthe ambition to start a rural project. Finally, tocommemorate 10 years of Sweekaar in 1988, a ruralproject was started in Upkaarpuram (Achaipally),Medak district, about 33 km from Hyderabad.

According to Ms Sunitha Shesadri, head of thedepartment, Early Intervention Center, MentalRetardation, the rural project is now providing wage-based employment training and rehabilitation inagriculture, horticulture and allied farm trade likedairy, nursery, bee keeping, poultry, pottery andcarpenters for adults with mental retardation hailingfrom rural areas.

Called Prakruti, Integrated Rural RehabilitationProject and Research Academy, it presently housesabout 60 inmates. “Our aim is to integrate them backwith their families,“ Ms Shesadri says.

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Early Intervention Centre for Development DelayAccording to Dr Hanumantha Rao if children at risk

and those with developmental delays are identifiedearly and services provided to them, the severerepercussions of the uncared or unattended problemscan be nipped in the bud. With this focus the EarlyIntervention Services Unit was established in 1990. TheUnit has Centers for both the mentally retarded and deaf.

“It is important to provide stimulation during thefirst six years of child development. Self-help, language,cognitive development, motor sensory developmentsare critical,” Dr Rao continues, “Any delay in these areaswill have an adverse effect in other areas as well.”

“The services in these Early Intervention Centersare extended through home-based training programs,center-based programs and out-patient managementprograms,” adds Ms Shesadri, “Through earlyidentification we help the child to become as

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independent as possible.”

For instance, Anil is suffering from CruznosSyndrome, a rare genetic disorder. When he first cameto Sweekaar, he could not speak a single word. Nowafter two years, he can speak a few words besideswriting a few alphabets. “This is the difference that earlyidentification and intervention can make,” Ms Shesadrisays.

In order to promote mainstreaming, publicawareness on various issues and problems of thepersons with disability is critical, says Dr Rao. “Withthis goal in mind, we have all along been conductingawareness drives by organizing rallies, essay writingcompetitions and debate competition.” For instance, in1991, Sweekaar organized an ‘Open House Week’.During the week, over 10,000 students from normalschools visited Institutions and attended orientationprograms focussing on the issues of disability.

In a similar way, a teachers’ conference was heldwhere teachers from normal schools were givenorientation on detecting the disabled children in theirown school settings. A Parents’ Association was formedin the same year to involve parents actively in the effortsof training and rehabilitation of their disabled children.

Awareness generation in slums is yet anothercomponent of the sensitization program. Publicity isbeing done through leaflets, banners, posters etc besidesconducting disability detection camps.

As a continuation of rural intervention project, anIntegrated Rural Rehabilitation Program was initiated

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in 1992. The Project involved screening andidentification of individuals with mental retardation inrural areas besides their integration and rehabilitationwithin rural settings. The project is still continuing.

Integrated Rural Rehabilitation Centre

“We give a lot of emphasis to research anddocumentation,” points out Ms Shesadri, “There is anacute shortage of documented data on various aspectsof disability.”

Started in 1992, the Research and DocumentationWing of Sweekaar has been able to initiate a lot ofresearch activities. “For instance we are doing researchon Early Intervention Services for the Mentally Retarded(0-5 years of age) - hope of the millenium,” she adds.

Dr Rao’s interventions are not just confined to thearea of disability. In 1993, he initiated a clean waterproject in the rural area where Sweekaar is working.

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The project involves sinking bore wells in the targetvillages.

During the same year, he also started a drug de-addiction center to screen, diagnose and detoxifyidentified persons on drug abuse and make attemptsto reform and rehabilitate them.

The year 1993 saw several other initiatives. A halfway home for mentally ill persons was started underthe aegis of the rural project, Prakruti. The home admitschronic mentally ill patients for a short stay. Also duringthe year, an Ideal Home for Senior Citizens was started.The program accommodates 100 senior citizens above65 years of age.

For scholastically backward children in generalschools, a special centre for slow learners was startedin 1994. Such children are identified and put under apersonalized intensive academic training program tocompete with the rest.

“Since 1998 Sweekaar-Upkaar has aComprehensive School Health Services program,”informs Dr Rao. The objective is to identify children innormal schools who have problems relating to scholasticbackwardness, learning disability, behavior disorders,problems related to physical health and malnutrition,identify speech and hearing problems.

“Once the problem is identified, it is tackled by ateam of experts comprising special educators,psychologists, developmental disability specialists,

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dental surgeon, medical officers, speech pathologistsand audiologists,” he adds.

“We have evolved two ways of helping thesechildren in normal schools,” adds Ms Sunitha Shesadri,“Our resource persons guide the normal school teacherson how to modify his/her teaching strategies for suchstudents. The children too come to our Institute to attendspecial classes.”

“Our target group for the Comprehensive SchoolHealth Services Program is Government schools as 90per cent of children in these schools belong to the lowsocio-economic strata and hence need special attention.”

In 1995 Dr Hanumantha Rao started the UpkaarComputer Training Centre for the Deaf, an exclusivetraining center for the adult deaf. “Since there is lack ofadequate trained humanpower in the country I starteda one-year diploma course in Special Education for Deafalong with a diploma in concurrent course.”

Not content with just a diploma course, Dr Raostarted Shruti Institute for Research and Training inHearing and Language, a degree college offering BSc(Hearing, Language and Speech) in 1999. The Collegeis affiliated to Osmania University.

His passion to build institutions made Dr Rao startAshray. With the philosophy of ‘picking up from Peterand passing it on to Paul’, Ashray aims at collectingold articles and distributing them to the needy.

“An article can be junk in some house but can bringglow in someone else’s house,” he points out.

“I want to create something like the Salvation

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Army abroad,” he says, “For instance books, once read,can be recycled and given to others. If we can have pointsin large supermarkets or public places where peoplecan deposit articles they no longer want to use, thesecan be given to the needy.”

A firm believer in networking, Dr Rao hascollaborated with the Government-run Nilofer Hospitaland revived the Physiotherapy department at thehospital. The department was not functioning for 15years. Besides the Speech and Audiology departmentat the Gandhi Hospital, which had been closed for thelast 10 years, has also been revived.

As part of the Early Identification drive, Dr Raohas started a separate Early Identification Centre for thepersons with hearing impairment this year.

“There is need for a close partnership betweenGovernment and voluntary organizations for improvingservices for the disabled in the country,” asserts Dr Rao.

Organizations providing rehabilitation services, hefeels, need to constantly upgrade their services andtraining facilities. “Here at Sweekaar-Upkaar, we aretrying to strengthen our services constantly,” he says,“We want to set new standards in rehabilitationservices.”

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Prof P JeyachandranProf P JeyachandranProf P JeyachandranProf P JeyachandranProf P Jeyachandran

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Prof P JeyachandranA staunch believer in the powerful impact of yoga

therapy in the lives of persons with mental retardation,Prof P Jeyachandran is an advocate of systematic yogapractice which, he says, helps prevent or arrestdeterioration and also brings about cures of manydebilitating conditions.

Studies indicate that yoga practice amongstpersons with mental retardation leads to improvementin motor skills, in posture, control in dribbling, reducedhyperactivity, improved appetite, sleep and thusfacilitates significant improvement in both physical andmental well being, Prof P Jeyachandran says.

Over the years, this genial professor has madepioneering efforts to standardize the right kind of yogatherapy and ‘asanas’ for persons with mentalretardation. His guidebook on teaching yogasana tothose with mental retardation has been translated inKorean, Japanese, French, Belgian and German.

It has been an eventful journey for ProfJeyachandran who has been working assiduously in thefield of mental retardation since 1966. He says he hashandled about 21,000 cases ever since and hasdeveloped a repository of these. Many of these caseshave left a deep impact on him and he hopes to writeon these someday.

There was, however, one particular case in theinitial stages of his work, which acted as a catalyst topropel him to work for the cause of the persons with

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mental retardation. It was way back in 1966, when hewas an honorary testing officer in the Juvenile GuidanceBureau.

“A girl, barely nine-years old, was brought to mefor tests,” Prof Jeyachandran reminisces. “She wasaffable and greeted me. She could recollect only theCharminar in Hyderabad and said her name wasAnandabai,” he says.

The girl used to get violent epileptic attacks andhad to be admitted in the neurology department of theGovernment Hospital. “When she was discharged aftersix months, she had forgotten whatever she had toldme,” Prof Jeyachandran continues, “She had now startedtalking about hospital routines like morning bread, tea,etc.”

“I wanted to try and trace her family down. So Isought permission from the Magistrate for the girl tobe taken to Charminar in Hyderabad with an escort,”he says.

“The escort took the girl to Hyderabad. The PoliceStation in Charminar did not have any record of such amissing girl. However, destiny intervened. One Policeconstable recollected that three years back when he wasposted in another Police Station, a parent had lodged acomplaint that their daughter, who was mentallychallenged, was missing. The respective Police Stationwas contacted and within 30 minutes, the girl’s parentsand brothers came.”

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“I was in tears when the escort came and told meabout the reunion,” Prof Jeyachandran recalls, “I waselated that I had become instrumental in thereunification of a girl with mental retardation with herfamily.”

Born on April 24, 1946 in a small village in Maduraidistrict of Tamil Nadu, Prof Jeyachandran had a brilliantacademic record. At the age of three and half years, hewas in class one. Within six months he was in class twoand while in class three, he again got a doublepromotion.

In 1966-68, he was doing Masters in Letters inPsychology and was placed in the Juvenile GuidanceBureau for his fieldwork. “Here I found that bothjuveniles and mentally challenged were being treatedin the same manner,” he says, “I thought it wasimproper. I devised a case history format for bothjuveniles and those with mental retardation.”

In 1968, he did a study for Bala Vihar, home fororphans with mental retardation, on ‘Feasibility ofTraining Mothers of Mentally Challenged Children ina Day Care Center’.

“There was no indigenous behavioral assessmentscale for persons with mental retardation in those days,”Prof Jeyachandran points out, “Only the western scalewas being used at that time. I took up the challenge ofdevising an indigenous one. This Project was fundedby the US Health, Education and Welfare Department.”

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The scale was christened as the MadrasDevelopmental Programming System and is stillpopular among those working for persons with mentalretardation. It was the only indigenous scale availabletill 1991 when the National Institute for MentalHandicapped developed two more scales. “ProfCruickshank, a leading US psychologist, guided theproject from the US side. After I developed the Scaleand sent it to him, he commended my efforts.”

In 1969, when Prof Cruickshank came to India for anational conference, it was decided that the Bala ViharHome would start a teachers’ training center.

On Prof Cruickshank’s suggestion, ProfJeyachandran developed the country’s first curriculumfor special educators in mental retardation in 1971. Hedid this with the help of students of the first batch atthe Bala Vihar Training Center, Chennai. “The presentday curriculum of the National Institute of the MentallyHandicapped is based on that curriculum,” he says, “Wehave trained more than 1000 special educators workingin different parts of the country.” During 1971 he alsodid a feasibility study of training mothers of childrenwith mental retardation in a day care center.

In 1972, Prof Jeyachandran decided to go to theUnited States of America for further studies. There hewas asked to work in the licensing department in thestate of Minnesota. “In 1974, the Federal Governmentsent a note to all state departments to evolve a scalewhich could certify institutions working for the personswith mental retardation in terms of fire safety,” he says.

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“My Director asked me to develop the Scale,” hecontinues, “I developed the first draft in 15 days. TheDirector was elated. He quipped that ‘I had actuallywasted a fortnight’ for preparing the Scale.”

Soon he was going all around Minnesota visitingvarious institutions working for persons with mentalretardation. In fact, Prof Jeyachandran became popularas the man who developed the Fire Safety Code. “I wastaken into a five-member team to develop a scale ofassessment and programming for children with mentalretardation.”

Another breakthrough came when ProfJeyachandran shared his research findings at the WorldCongress organized by the American Association forMental Deficiency. “This paper took me to Central andSouthern American countries and even Japan.Consequently, I was given a state dinner and was askedto stay back in the United States,” he says.

In fact, two US Senators, Hubert Humphrey andWalter Mondale took a keen interest in processing myimmigration. “The department of immigration wantedto know the uniqueness of my work,” he says. Thesenators wrote back to the department, “If a mandevelops a bomb which kills thousand of people, youconsider it to be unique. If a man develops a system,which would improve the quality of life of persons withmental retardation, that too should be seen as a uniquecontribution.“

“Within no time I was called by the immigrationdepartment and offered immigration. However, Ithanked them saying I was going back to India,“ he

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adds.

After coming back to India, Prof Jeyachandranrejoined the Bala Vihar Training School. He has beenthe Principal of the School since then. In 1976, the TamilNadu Government insisted on standardizing theteachers’ training curriculum on mental retardation. Tocarry its endeavor forward, the state government formeda high-level committee with Prof Jeyachandran as amember.

In 1983, UNICEF requested the Federation for theWelfare of the Mentally Retarded to prepare astandardized curriculum for Special Educators in India.The Federation nominated Prof Jeyachandran to be itsChairperson. In 1985, the National Institute for MentalHandicapped revised the curriculum.

As a member of the drafting committee of the StatePolicy on Disability, Tamil Nadu Government, in 1994,Prof Jeyachandran was instrumental in preparing rulesand regulations to run residential homes for personswith mental retardation in the state. He has also been apillar behind the activities of various institutions andorganizations not only in Tamil Nadu but in other partsof the country as well. For instance one of theinstitutions that Prof. Jeyachandran is spearheading isVijay Human Services. Besides initiating a large numberof activities for the persons with mental retardation,Vijay Human Services is playing a very important rolein evolving a systematic yoga therapy for persons withmental retardation.

Emphasizing the need to streamline services for

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persons with mental retardation right from preventionto development of vocational programs, ProfJeyachandran points out that though services haveimproved considerably, it probably reaches to onlyabout two per cent of the population with mentalretardation.

“Though right knowledge and skills are nowavailable, they have not permeated to service providersin all parts of the country,” Prof Jeyachandranconcludes, “There is need to evolve a proper system sothat the latest technology reaches the children.”

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Dr Pramod Karan SethiDr Pramod Karan SethiDr Pramod Karan SethiDr Pramod Karan SethiDr Pramod Karan Sethi

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Dr Pramod Karan SethiTechnology offers a real solution to the problems

of the persons with disability, feels Dr Pramod KaranSethi, the creator of Jaipur Foot. Equitable generationof technology, he adds, involves a learning curve thatshould be followed immaculately.

During the initial part of this learning process, thereshould be intense back and forth interactions betweenthe laboratory and the field, he says. The feedback fromusers in the field then leads to modifications andimprovements in the product processes.

“The relationship between technology generationand dissemination, and between technologists andpotential consumers results in market penetration. Itwas this philosophy of intense back-and-forthinteraction that has led to the success of Jaipur Foot,”Dr Sethi says.

Born on November 28, 1927 in Benaras, Dr Sethihad his initial schooling in Agra. “My father had a greatinfluence on my life. Mahatma Gandhi was a majorinfluence in our family,” he recalls.

“My father was very particular about myintellectual achievement and also that of my six sisters.My eldest sister was probably one of the first Jain girlsto pass the matriculation examination, while the sisterjust junior to me went on to become a doctor,” Dr Sethisays.

Dr Sethi completed his MBBS from Sarojini Naidu

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Medical College in Agra in 1949 and went on to doMasters in Surgery. Since the British Medical Councildid not recognize this degree he became a Fellow ofthe Royal College of Surgeon in Edinburgh, Scotlandin order to pursue a career in England. After this heapplied for FRCS at the Royal College of Surgeons.

“My outstanding record ensured that I did not haveto repeat my undergraduate examinations as wascustomary,“ Dr Sethi said. He received his FRCS fromEdinburgh in 1954. When he came back to India, he tookup a job as a lecturer at the Sawai Man Singh Hospitaland Medical College in Jaipur.

“In 1958, the Medical Council of India decided tohave specialized departments of Orthopedic andPediatrics,” recalls Dr Sethi, “In order to comply withthese regulations, our Hospital had to institute anorthopedic department which I was asked to start andhead.”

It turned out to be a blessing in disguise thoughhe did not have any training in orthopedics, he recalls.He had to learn a lot to start the department fromscratch. “In any other established department, I wouldhave followed the existing pattern but here I wasrequired to set the trend,” he says, “I also embarkedupon a learning process visiting centers at Delhi,Lucknow, Kanpur and Patna.”

In those days, there were no rehabilitation servicesavailable at the Hospital. “There was an immediateneed for a physiotherapy service. The only therapist,Mr C P Nair, was available only for supporting

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surgeons and that too for massaging purposes. MrNair’s equipment consisted of one case of talcumpowder that was issued monthly.”

“We did not have any equipment forPhysiotherapy and the Hospital authorities were moreinterested in procuring life saving equipment. Theadministration was also not interested in procuringsimple Physiotherapy equipment. So the only optionwas to get these made in the department itself.”

Determined to reverse the situation, Dr Sethi askedhis patients to get equipment for the Physiotherapysection. What he received was raw material componentslike wood and pipes. One patient donated the wagesof a carpenter while Dr Sethi himself went in search ofcraftsmen who could build parallel bars.

“Within no time we raised the physiotherapydepartment in the hospital. The massage room couldno longer hold it and we started using the opencourtyard as an exercise area,” he recalls. That was inthe early 1960s. During that time, he felt the need to setup a workshop in which patients could use materialsthat were designed to improve motor and coordinationskills while doing meaningful work.

“There was absolutely no space available to startthe workshop,” Dr Sethi says, ”However, destinyintervened. The lease of a teashop in the hospitalground expired. The authorities were not interested inrenewing the lease as shady characters frequented theshop. Instead we were offered the space. Withoutwasting any time we set up a workshop there and the

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staff moved in.”

During this time, Dr Sethi started carrying outcorrective surgery on polio patients. “I would conductsurgical operations to straighten their legs and limbs,”he points out, “A lot of appliances were needed toachieve results. At that time appliances for polio-affected patients were being made only at the All IndiaInstitute of Physical Medicine and RehabilitationWorkshop, Mumbai.”

“However, only the well-off could afford to maketrips to Mumbai to get the appliances,” he says, “Thepoor, after surgery, would generally go back to thevillages and the deformities would recur.” All his effortswere in vain, he felt, and this was the beginning of theefforts to have a local workshop in the hospital itself.

Dr Sethi had an eye for spotting talents.Mohammed Khan, a male nurse, who showed lot ofinterest in mechanical and technical matters, was askedby Dr Sethi to make splints and other simple aids. Healso facilitated Khan’s deputation to the MumbaiRehabilitation Workshop for a two-year trainingprogram in making appliances for persons withdisability.

Mohammed Khan came back within six months,fully trained. “It took me hardly six months to masterthe processes involved. There was no point in hangingaround, so I came back,” he recalls. Shortly after hisarrival, Dr Sethi expanded his workshop. An affluentpatient helped in adding two extra rooms toaccommodate the workshop and also added an

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occupational therapy department. Mohammed Khan’sworkshop was called the Fabrication Unit and its firstproducts were calipers and clubfoot for polio patientsand those with deformities.

“By 1963, I started toying with the idea of makingartificial limbs. We had some prototypes made at thePune Workshop and planned to make the same here,”Dr Sethi informs. The Fabrication Unit was finallystarted in 1965 and limbs were made based on Westernmodels using the “Solid Ankle Cushioned Heel(SACH)” footpiece.

Designed to be worn with a shoe that disguises itsartificiality and protects it, the SACH foot has a rigidkeel that does not allow freedom of movement. Thisled to a lot of problems in the Indian condition as manytend to squat.

“We took regular feedback on the SACH foot,” DrSethi avers, “Most users said SACH foot required shoesto be worn with it and was uncomfortable duringsummers. One could not move barefoot and this posedproblems for those who went to the fields. Besidesbeing expensive, it deteriorated rapidly when exposedto water and mud.”

To overcome these problems, Dr Sethi started workon an ideal footpiece. First, he developed the criteriafor such a piece. “The footpiece should not require ashoe to hide it and protect it. It should look like a normalfoot and be made of material, which is flexible, tough,abrasion-resistant and waterproof. The internal designshould provide adequate mobility to enable sitting on

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floor and walk on uneven ground where the foot isrequired to adapt to the rugged terrain of thecountryside. Yet the foot should offer a stable supportwhile walking.”

Dr Sethi then shared his idea with the workshoptechnicians. As the technicians grappled to make theideal footpiece, another master craftsperson joined theendeavor. Ram Chandra, affectionately called,“Masterji”, had been hired by the hospital to teachvocational skills to persons with paraplegia. Masterjiwas initially observing the experiments whichMohammed Khan and his helpers were conducting toevolve the ideal footpiece. Skilled at metalwork anddie making, he came up with suggestions and went onto make the prosthesis which later became the worldfamous Jaipur Foot.

Dr Sethi recollects the evolution of the Jaipur Foot.“We decided to use a solid rubber elastomer, due to itsunique properties combining flexibility, toughness,abrasion and tear resistance as the outer casing for ourfootpiece. Automobile tyre material was used for ourfootpiece as it was readily available. Then to reproducethe shape of the foot, a four-piece aluminium die wasprepared locally using the age-old sand castingmethods. By packing rubber into the die andvulcanizing it in the hospital autoclave, a footpieceresembling a natural foot was obtained.”

Mohammed Khan recounts how the foot wasvulcanized. “We had no knowledge about vulcanizingit. So, we approached Chuga Bhai, owner of a tyreretreading shop near the hospital. Excited, Chuga Bhai

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got involved and took no time to vulcanize the foot. Heeven refused to accept any money for the servicesrendered.”

“The first rubber foot, which was actually madeof solid rubber, was heavy and stiff. It was completelyunusable,” Dr Sethi recalls, “I was disheartened and Ispent the next year thinking what to do.”

“Finally, a solution emerged. In order to reducethe weight of the foot, we decided to place a westernfootpiece into our aluminium mould and then fill theremaining space with solid rubber. This encapsulationsubstituted for a built-in-shoe. The footpiece was nowsuited for barefoot walking.”

The problem of mobility, however, still remained.“The main obstacle was the wooden keel of westernfootpiece which prevented squatting. We tried to tinkerwith the keel by cutting wedges into it but we still failedto achieve adequate mobility. Our mind was weddedto the conventional design.”

The SACH foot assembly was finally shelved anda new design evolved. “For the ankle region a block ofwood was provided for securing a carriage bolt whichconnects the footpiece to the leg. The front portion ofthe forefoot also had a separate block of wood toprovide stiffness when this part of the foot is loadedand when the heel is off the ground. Between these tworigid wooden blocks, a large microcellular rubber blockwas juxtaposed and this behaved like a universal joint.”

It was definitely a major breakthrough. “We testedthese footpieces in engineering college laboratories and

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characterizing its behavior under different loadingconditions. Field trials on amputees revealed we couldmeet all design criteria. The foot seemed quite strong,breaking up only under a vertical loading strain of twotons,” Dr Sethi says.

Two other problems encountered were fatigue anddisaster failure. “Quite a number of amputees startedreturning with the external shell of rubber cracking openand the internal components virtually spilling out.”

In order to prevent these, use of reinforcement withrubberized tyres cord was suggested. After repeatedexperiments, a product, which had durability span of3-5 years under tough trials in rural areas, was evolved.

“But then amputees would still come back to uswith cracks in their footpiece. We started plotting thecracks in the damaged footpieces which were alwaysaround the ankle region.”

“The reason was encapsulation around thewooden blocks was immobile. The entire mobilityresided in the junction area which was in the hindfootregion and this was the place where all stress wasconcentrated,” Dr Sethi recalls.

What resulted was a new design revision, says DrSethi. The forefoot wooden block was replaced with adesign which ensured uniform distribution of stressspread over the entire hindfoot and forefoot.

The first scholarly paper on the Jaipur Foot waspresented by Dr Sethi at the Association of Surgeons ofIndia’s annual conference held in Bangalore in 1970. The

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following year he presented a paper on modificationfor amputees whose feet had been taken off at the ankle(symes amputation), an adaptation made possible byconstructing the foot with a boot top. The same year,Dr Sethi shared his work at a meeting of the BritishOrthopedic Association at Oxford, England. Again in1974, his work attracted international attention whenDr Sethi gave the lead talk at the First World Congresson Prosthetics and Orthotics held in Montreux,Switzerland.

All this led to the setting up of a RehabilitationCenter at the Hospital Grounds. “A patient from Bihar,Arjun Aggarwal, donated money for construction of thefive-storey rehabilitation department,” Dr Sethi says,“The Rajasthan Government provided us matchinggrant.”

The setting up of the new Rehabilitation Centercoincided with the 2500th anniversary of the attainmentof nirvana by Lord Mahavir. To commemorate theoccasion, a group of Jains formed the BhagwanMahaveer Viklang Sahayata Samiti and raised a largesum of money to establish another rehabilitation center.

Dr Sethi felt that instead of creating anotherinstitution, more services could be provided in therehabilitation center that was already constructed in thehospital premises. In March 1975, a RehabilitationCenter was formalized which is now focussing onproviding free lower limbs and other rehabilitative aidsand services. More artisans were hired for RamChander’s workshop to meet the increased demand forlimbs. The Mahaveer Society’s money was used for

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purchase of raw materials.

Dr Sethi recalls a study conducted at the Universityof Strathclyde, Glasgow, England, where in asophisticated gait analysis laboratory, a comparativeevaluation of the western foot and Jaipur Foot wascarried out. “A Scotish amputee was asked to returnthe Jaipur Foot after completion of the study. Theamputee refused to part with the foot on grounds thatit enabled him to climb the mountains much moreeasily.”

Constant upgradation and research to make theJaipur Foot better and lighter continues. Differentmaterials are being used now like polyurethane,polypropene and high density polyethylene.

As a major initiative, an artificial limb-fitting unithas been started at Kasturba Hospital, Gandhigram,Tamil Nadu with the support of a private company TVSRubbers Factory. According to Mr M R Rajagopalan,Secretary, Gandhigram, the program was started in 1988with the help and guidance of Dr Sethi.

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Measurement for Jaipur Foot being taken from apatient

“We have committed workers on our rolls,” saysMr Rajagopalan, “So far we have been able to fit about1,500 artificial limbs. Presently we are trying a new anklejoint with aluminium spring. Dr Sethi is helping us inthis new endeavor.”

For his path breaking work, Dr Sethi won theprestigious Magasaysay Award in 1981. In the sameyear, he also won the Padmashri. Presently a consultantwith the Santokhben Durlabji Memorial Hospital, heemphasizes on the need for quality training so thattrainees can set-up workshops in their respectivecommunities. “Only then we can spread the use of theJaipur Foot to every nook and corner of the country andelsewhere.”

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Dr Rajendra T VyasDr Rajendra T VyasDr Rajendra T VyasDr Rajendra T VyasDr Rajendra T Vyas

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Dr Rajendra T Vyas Time: Circa, October 1947. Place: banks of river

Tapti in Surat, Gujarat. The event: a meeting of personswith visual impairment. The aim: to initiate a movementfor providing services to the visually impaired. Theoutcome was of historical significance: The Blind Men’sAssociation was formed.

“Indeed, it was a meeting of great historicalsignificance to the persons with visual impairment,”says Dr Rajendra T Vyas recalling that eventful day, “Itwas from here that new programs for the visuallyimpaired evolved in the country.” Dr Vyas was one ofthose present at the meeting in Surat who went on tobecome one of the fulcrum behind the NationalAssociation of the Blind (NAB) which after 50 years hasemerged as a leading organization for the visuallyimpaired in the country.

“NAB India is definitely one of the largest voluntaryorganization in the disability sector in the country,” hesays, “We have got branches in 18 states and over 250institutions and associations for the visually impairedare associated with us.”

Dr Rajendra Tansukhram Vyas was born onDecember 27, 1930 in village Bhandaria in the Saurashtraregion of Gujarat. While studying in class VIIth in ageneral school, he lost his eyesight completely due tobilateral iritis.

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“My father was a well known doctor in Mumbaiand he made all efforts to ensure that I regained myeyesight,” he recalls, “However, two years ofconcentrated efforts failed to restore his eyesight.” Itwas a disaster and young Vyas was then forced to jointhe Dadar School for the Blind. He studied Braille fortwo months and later rejoined his old school.

“Initially I would just go and sit in the class,” hesays, “I used to feel bad. Only after six months, I wasformally admitted.” In those days the second world warwas on and the Braille writing and Arithmatic apparatuswhich used to come from the National Institute for theBlind in London stopped coming. In order to ensurethat his studies were not hampered, his father got thespecial apparatus manufactured locally. However, notextbooks were available in Braille and he had todepend upon his younger siblings and a teacher to readout the textbooks to him.

Following his graduation from the Ismail YusufCollege, he went on to do Masters in Economics whilesimultaneously pursuing a Bachelor Degree in Law.“My day started at 6.30 in the morning when I took alocal train to reach the Law College for the morningclasses,” he recalls, “After that I would go to attend theSchool of Economics.”

After completing his LLB, he started practicing inthe Mumbai High Court. In fact, he was the first lawyerwith visual impairment in Mumbai. Simultaneously hejoined the K C Law College as a lecturer and tookevening classes. He also completed his Ph.D., his thesisbeing “Visually Handicapped in Bombay State, Their

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Social Background and Present Status.”

While pursuing studies, he was actively involvedin working for the visually impaired. “After the BlindMen’s Association was formed, we started organizingpicnics and other recreation activities for the visuallyimpaired besides helping individuals with visualimpairment,” he says.

“We organized the first Provincial Conference inMumbai in 1948 which was a resounding success,” hecontinues, ”We then organized the first All IndiaConference on Work for the Visually Impaired inMumbai in 1952. A series of brainstorming sessionsresulted in a resolution to establish the NationalAssociation for the Blind (NAB) on January 19, 1952.”

In the initial stages, the NAB decided to concentrateonly on policies and programs related to the visuallyimpaired in India. Barrister Rustomji Alpaiwala, whohad lost his sight at the age of 35, became its firstPresident.

“Sir Dorabji Tata Trust gave a grant of Rs 12,000 toNAB in 1958 and we for the first time rented an officeand appointed an Executive Officer to consolidate ourwork,” Dr Vyas says.

“NAB was able to set up employment andplacement bureaus for the visually impaired way backin 1954,” he says, “Till date, we have been able toprovide employment to more than 10,000 people.”

Meanwhile in 1958, the NAB started the Col SirJamshedji Duggan Braille Press in Jogeshwari, Mumbai.

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According to Mr Ketan Kothari, the Press has growninto the largest Braille Press in the country andpublishes over 11 journals in English, Marathi andHindi. This includes ‘Varthaman’, the only fortnightlymagazine in Braille published in India.

In 1959, the Sir Dorabji Tata Trust gave a grantworth Rs two lakhs to NAB for purchasing an estate of200 acres at Phandsa in Gujarat. The NAB establishedthe Tata Agricultural and Rural Training Centre for theBlind. Persons with visual impairment from rural areasare given training in agriculture, horticulture, animalhusbandry, dairy farming. The trainees are thenrehabilitated in villages.

“We believe that working for the prevention ofvisual impairment is as important as working for thevisually impaired,” Dr Vyas says, “In this backdrop,the NAB established the National Society for Preventionand Cure of Blindness in 1959.” A NAB Prevention ofBlindness Committee has also been launched and hasbeen instrumental in setting up the All India Eye BankAssociation. The Association brings together about 125Eye Banks in India.

In 1964, NAB set up the MP Shah All India TalkingBook Centre. According to Dr Vyas, the Centre produceshundreds of talking books each year and is equippedwith three Talking Book Studios.

Aware of the fact that there are not enough schoolsand institutions for the visually impaired, NAB startedan Integrated Education Program. “Integrating childrenwith visual impairment with sighted children in their

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own village and community schools helps themovercome any feeling of inadequacy or inferiority thatthey may have otherwise experienced,” Dr Vyas says.

In 1967, NAB started the PNM Rehabilitation Centrefor the Blind in Mount Abu. It was the first full-fledgedrehabilitation centre to come up in the country for thosewho had just lost eyesight. The Centre aims at adjustingand orienting newly visually impaired. It impartstraining in orientation and adjustment, personalmanagement, personal grooming, orientation andmobility, various handicrafts and vocations. Similarlyto make the visually impaired more active and mobile,the NAB conducts physical training courses at itsMobility Training Centre for the Blind, Bangalore.

“As a very large percentage of visually impairedlive in small towns and remote villages, NAB felt it wasvery important to reach to the unreached,” says DrVyas, “In this backdrop, the NAB Rural ActivitiesCommittee was constituted in 1982. The CentralCoordinating Office of the Committee was set up inAhmedabad.” The community-based rehabilitationprojects undertaken by the Committee tried to addressproblems of the visually impaired like education, socialand economic rehabilitation and prevention ofblindness.

According to him, opportunities available towomen with visual impairment are much less and a lotneeds to be done in this regard. In order to promoteinitiatives for women with visual impairment, NABstarted a Committee for the Advancement of the Statusof Blind Women. It promotes the education and training

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of women with visual impairment in urban and ruralareas. It has also set up a training center for employmentof visually impaired women.

NAB’s Job Develoment Centre for Blind Women

The NAB has played a major role in transformingthe lives of many persons with visual impairment. MsNafiza Shikhari, for instance, attributes her confidenceand learning to the role played by NAB. Disillusionedwhen she was losing her sight, she came to NAB forguidance. After doing a course in telephone operationshe got a job at the Central Bank of India.

However, it was just a beginning. She wanted torise high in her career and so she started appearing forexams. She passed the All India Officers Examinationin 1986. Now she is a manager at the Corporate FinanceBranch of the Central Bank of India, Mumbai. She wonthe President’s award for the most efficient disabledemployee on December 3, 1999.

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Similarly, Dr Vishakha Mehta who has been one ofthe Executive Committee member of the NAB was thefirst woman with visual impairment to do B.Ed. fromMumbai University. When she came to Mumbai fromGujarat in 1960, she was confused as what to do. Aftershe came in touch with NAB, she was motivated to takeup higher studies. Ever since she has been working tomake a difference to the lives of persons with disability.While she worked in Raigarh district for 15 years tobring visually impaired women to the forefront, she alsoset-up a co-operative housing society for persons withdisability.

“We have to go a long way in meeting standardizedservice requirements of the visually impaired in thecountry,” avers Dr Vyas, “We need more people to comeand work in this area, especially in rural and far-flungplaces. NAB has been able to reach to a lot of areas butwe need to go further. All of us have to work togetherand not in isolation.”

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Rekha RoyRekha RoyRekha RoyRekha RoyRekha Roy

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Rekha RoyMadhumita Haksar never imagined that she would

be teaching one day. She is elated and feels that heralma mater, the Speech and Hearing Institute andResearch Centre (SHIRC), has been responsible fortransforming her life. After having passed class VIII ayear back, she took to teaching sewing in the SHIRCitself. She now wants to continue her studies furtherand is all set to appear for the State Open Schoolexaminations.

Similarly, Sushmita Das is no more a burden onher parents. She earns her living by knitting. It is notsympathy, which brings her respect, but the adroitnesswith which she knits sweaters. She had taken trainingin knitting at the Dhani Rural Center, Agarpara, run bySHIRC. Covering 34 villages, the Center not only impartstraining in both knitting and embroidery to the childrenwith hearing impairment of the area but also facilitatesthe marketing of the products made by them.

“The students themselves market the items theyproduce. We have initiated self-help groups which hasboosted their confidence and taught them to worktogether in a group,” says Mrs Rekha Roy, Director,SHIRC, “Being able to earn acts as a catalyst to theiroverall personality development.”

This is my first introduction to SHIRC, which istrying to bring cheer to the lives of the hearing impairednot just in Kolkata and Agarpara but in three other ruralcenters of West Bengal. It is now working to expand to

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other parts of the state as well.

Since its inception, SHIRC has come a long way inproviding services to the hearing impaired and has nowemerged as one of the premier Institutes in West Bengal.“The Institute was not set up by accident,” she says, “Ibelong to a family of educators and audiologists forthe hearing impaired. My father was a pioneer in thefield of education of the persons with hearingimpairment while mother was a headmistress of a deafschool. My uncle was a principal of a school for thosewith hearing impairment. As for my brother, he is alsoengaged in teaching the hearing impaired.”

Born on July 1, 1940, Mrs Roy had a different, liberaland flexible upbringing unlike girls of those days. Aftercompleting her graduation in psychology from DelhiUniversity, she took training as a teacher for the hearingimpaired and then briefly taught children from ruralareas at Suri Deaf School, Kolkata. “Since I wanted topursue higher studies, I went to Manchester Universityfor taking training in education for the hearing impairedin 1964-66,” she informs.

“After coming back, I took up lecturership in deafeducation and aural rehabilitation in the All IndiaInstitute of Speech and Hearing, Mysore,” she says, “Itaught and organized clinical work at the Institutebesides conducting practicals for the under-graduateand post-graduate classes.”

While teaching in Mysore, Mrs Roy realized that apost graduation in deaf education was not enough. She

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needed further training and education to facilitate betterservices for the persons with hearing impairment. Shethen applied for Fullbright Scholarship and went on todo her MS in Speech and Hearing from Central Institutefor the Deaf, Washington University.

Her marriage in 1968 did not come in the way ofher pursuit of academic excellence. “My husband andin-laws were very supportive and motivated me to takeup the Fullbright Scholarship,” she says.

After Mrs Roy came back in 1971, she joined theAll Indian Institute of Medical Sciences, New Delhi asan audiologist. But her stint in AIIMS was cut short bya heart problem. She quit her job and went back toKolkata. After the birth of her child in 1973, she took toprivate practice. Later she took up a job as a part timeconsultant at the Institute of Post Graduate MedicalEducation and Research, Kolkata.

“During this period, I realized that the socio-economic status of persons with disability was lowerthan the others,” she says, “Even parents were hesitantto spend time with their differently abled child andhence they were generally neglected. It was an eye-opener for me.”

In 1978, Mrs Roy went to Vellore for treatment ofher heart ailment and the doctor there encouraged herto start work for the hearing impaired. This acted as acatalyst. In the same year, Mrs Roy started the Speechand Hearing Institute and Research Centre (SHIRC) withsupport from her parents.

Over the years, SHIRC has been steered into areas

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of early assessment, creating awareness in the whole ofeastern and north-eastern region on issues relating tothe hearing impaired, multi-disciplinary investigations,diagnosis, differential diagnosis, therapy education,counseling, pre-vocational training, applied research,orientation and refresher training of teachers andparents.

Like many other organizations, SHIRC too had ahumble beginning. It started from Mrs Roy’s residence.In the beginning, there were just two children—one wasthe son of a rickshaw puller and the other, a sweeper’schild. There was one volunteer, Deepak D’ Costa to helpher.

“ Within two years, the number of children grewto 50,” Mrs Roy recalls, “We were now functioning fromthe garage downstairs. Simultaneously, we started theprocess of integrating these children with those of theadjacent nursery school.”

“Soon we felt the need for setting up a regionaldiagnostic center,“ she continues, ”We were now gettingpeople from different parts of West Bengal and evenfrom neighboring states. In order to provide services tothe ever-increasing number of people, we took up aplace in Kakoli Road in 1980.”

Thus started the outreach and extension programsof SHIRC. “Through this program, we expanded to therural areas. The Mohispata center was started in 1987,the Agarpara center in 1988 followed by Birbhum andBargachia. At all these centers, we trained parents forbetter home stimulation.”

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“Over the years we have been able to reach out toa wide range of population,” Mrs Roy informs, “Theeffort has been to reach the unreached especially in therural areas.”

Mrs Roy feels the provision of rehabilitation ofthose with hearing impairment is patchy throughoutthe country. The speech and hearing services are yet toreach atleast 80 per cent of the population, she says.The only way out is to establish district-wise ruralservice centers, she feels.

“At SHIRC, we have tried to work out newconcepts, field test them, develop them into a moduleand then replicate them in larger groups,” Mrs Roypoints out, ”The community-based rehabilitationproject, Shruti, started in collaboration with the localclubs. This ensures the active involvement of the localcommunity especially the youth.”

“To ensure the right to education of the child withhearing impairment, we must lay a solid foundation inthe pre-school education stage. This age is critical inthe overall development of a child,” Mrs Royemphasizes. It is with this philosophy SHIRC tries toensure a solid foundation at the pre-school stage.Besides SHIRC’s emphasis has been on providinghigher education including technical education to thehearing impaired. “Career development of studentswith hearing impairment is treated as a priority in oureducational programs,” she informs.

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Students at SHIRC, Kolkata

Besides being the pillar behind the growth ofSHIRC, Mrs Rekha Roy took up other work assignmentsfrom time to time in order to expand her efforts forimproving services for the persons with hearingimpairment. From 1985 to 1988, Mrs Roy was Principalof Deaf School and Teachers Training College, Kolkata.This helped SHIRC get more trained teachers. “Duringthis period, SHIRC could expand its pre-schoolprograms in a big way,” she points out, “Availabilityof properly trained teachers is of paramountimportance in the education of the hearing impaired.”

However, she was not able to effect changes in theworking of the Calcutta Deaf School the way she wanted.The desire to do something more concrete acted as acatalyst and she accepted the Directorship of the AliYavar Jung National Institute of Hearing Handicapped(AYJNIHH), Mumbai, an autonomous Institute under

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the Ministry of Social Justice and Empowerment in 1988.

At AYJNIHH, Mrs Roy tried to make pre-schooleducation of the hearing impaired a nationwidemovement. More than 25 pre-school programs wereinitiated during her tenure. She was also able to initiatethe outreach and extension program of NIHH in a bigway.

Efforts were also made to use the media in creatingawareness on the hearing impaired. “The mass mediahas a major role in changing the attitude of the commonmasses towards not only the hearing impaired but alsoother disabled,” she says.

After retirement from NIHH in 1999, Mrs Roy cameback to Kolkata and now once again devotes full timeto SHIRC. Inspired by Rabindranath Tagore, Mrs Roynow has dreams of starting a Vishwa Bharti Universityfor the hearing impaired. “To work for the rural hearingimpaired girl child is also my top priority,” she says,“One has to work with new vigor strengthening self-employment of the hearing impaired in today’schanging circumstances. “

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Dr Sharda FatehpuriaDr Sharda FatehpuriaDr Sharda FatehpuriaDr Sharda FatehpuriaDr Sharda Fatehpuria

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Dr Sharda FatehpuriaSwami Vivekananda had aptly said, “ Never say

no; never say I cannot; for you are infinite. Even timeand space are as nothing compared with your nature.You can do anything and everything, you are almighty.”Those who are fighting all odds to overcome theirdisability and are making determined efforts to maketheir lives meaningful are certainly following this greatseer’s footsteps.

Rupa Ghosh, a student of Manovikas KendraRehabilitation and Research Institute for theHandicapped, Kolkata, is one such fighter. She is likeany other child except for her low Intelligence Quotient(IQ). She has been taught Bengali alphabets and knowshow to count. As part of her vocational training, shehas been working on the loom for the past three years.She earns Rs 250 per month and dreams to beindependent. With tears in her eyes, her mother, MrsArchana Ghosh says, “I never thought my daughtercould work at the loom. She is now earning too.”

Hailing from a poor family, Jayashree Ghosh hasbeen trying hard to put her disability behind. She is agood singer and has won prizes in a number ofcompetitions. Besides she has passed class Xth fromthe National Open School and is now learning stitching.Aiming to do Diploma in Tailoring, Jayashree alsowants to learn computers.

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Rupa and Jayashree are not the only ones to havebenefited from the rehabilitation services rendered byManovikas Kendra. Ever since its inception in 1974,hundreds of children have been given training andeducation here.

Starting as a small institute, with just one classroomand two students, the Manovikas Kendra Rehabilitationand Research Institute for the Handicapped has growninto a premier institution for training, research,prevention and rehabilitation for the persons withmental retardation.

A brainchild of Dr Sharda Fatehpuria, a simpledown-to-earth lady, now in her mid-60s, the Institute isa result of her vision. It was created out of the need forproviding specialized training that according to her canmake a world of difference to the lives of people withmental retardation. “Through educational trainingdesigned to meet their special needs, we can try andhelp these children become economically independentand self-reliant,” she recalls how she plunged into thefield of mental retardation.

Born on July 1, 1936, Dr Fatehpuria hails from anorthodox Marwari family. Her father was a Gandhianand social worker. “Since I grew up in an environmentof social service, I always had the urge to do somethingfor society,” she recalls. Sitaram Saksaria and RamManohar Lohia also influenced her. Dr Fatehpuria wasinspired when Mr Sitaram Saksaria for the first timeopened the huge iron gate of Shikshyatan College, apremier institution for girls in Calcutta in 1951. Shevowed, then and there, to create an institution.

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At the age of 18, when she was doing hergraduation, Dr Fatehpuria got married. For any othergirl, this would have meant the end of her career. ButDr Fatehpuria was different. When her in-laws came tosee her, she laid down three conditions: that she mustbe allowed to continue her studies; no dowry wouldbe given; and she would be free to work after marriage.“Such conditions were unconceivable from a 18-yearold Marwari girl in the 1950’s,” she says.

After doing her graduation in Philosophy shedecided to pursue her Masters in Psychology. Whileworking on her dissertation, Dr Fatehpuria had firsthand experience of the plight of the persons with mentalretardation. The subject of her dissertation was probingthe difference in ‘interest patterns’ between Bengali andMarwari children in Kolkata schools. She chose threetypes of schools and in all 30 of them. “As I beganprobing the interest patterns in C-grade schools, I foundthat many 14-15 years old boys were still studying inclass 1 or 2. These boys were slow learners and theteachers called them ‘pagla’ (mad in Bengali).”

Dr Fatehpuria wanted to go deeper into this aspectof her research. She requested the University to write aletter to Corporation School Principals to lend supportto her survey. “I went to the homes of about 200 boysand girls of different age groups to test their IQ level,behavioral pattern etc.” she says.

“During the survey, I found that many childrenwere having low IQ level. Then and there I decided towork for them,” she recollects, “My heart and soul was

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now desperately seeking out solutions to bring abouta change in the lives of these children.”

Following her post-graduation, Dr Fatehpuria tookto teaching in Abhinav Bharti School for six monthsbefore registering herself for Ph.D. Her research themewas scholastic backwardness in Calcutta High Schools.She took students of class VIIIth as her subjects. At thattime, children with low IQ and behavioral problemswere clubbed along with slow learners.

While doing Ph.D., the social spirits within herevolved to the fullest. As part of her research, she wentto rural areas and slums where she noticed the completelack of awareness on health aspects. “The five years ofwork for the Ph.D. taught me a lot not only about mentalretardation but also about life. Earlier I didn’t havemuch idea about the problems of the poor and that ofchildren with disability.”

After completing her Ph.D., Dr Fatehpuria wentback to Abhinav Bharti School, Pretoria Street andrequested them to give space. In 1966, she startedcounseling. “The initial years were quite challenging,”she recollects, “I would visit dirty slums and poorlocalities to make people in these areas aware of theproblems of mental retardation. Then in the chamber, Iwould test IQs of specially challenged children andcounseled parents on the need for right kind of trainingfor these children.”

At that time the conditions in most homes of thementally retarded were worse than prisons. “A lot of

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parents didn’t know where to send their children,” shecontinues, “I realized that simply categorizing thechildren according to their IQ level and givingcounseling was not enough. Much more needed to bedone.”

This realization became the genesis of theManovikas Kendra. “I approached the President ofAbhinav Bharti, Mr Sitaram Saksaria for a bigger roomto open the school,” she says, “He promptly agreed andin 1974 I started Manovikas Kendra in a single roomwith just two students.”

Talking about the early challenges, Dr Fatehpuriasays: “Convincing parents to send their children toschool was a challenging task in the initial stages. Mostparents felt I was just fooling around.”

Getting trained teachers was another problem. “Icould get only those teachers who could not get anyother job. Moreover, there were no training institutesthen,” recalls Dr Fatehpuria.

Within one year, however, the situation changed.By now the Manovikas Kendra had 50 students. It wasa struggle every day. She hired a mini bus and pickedup children herself from their homes from 7 a.m.onwards. Later in the afternoon, she dropped thechildren, back at their homes.

Within a few years, Dr Fatehpuria realized thatlimiting the work to Kolkata was just not enough andthere was need to branch out to the rural areas. So in1986, Dr Fatehpuria started a school in Rajpur-

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Dhankhet, 24 Parganas. Since then the DhankhetManovikas Kendra has become a major extensionproject of the Institute. At present there are 65 studentsbetween the age group of 5 and 18 years at this centerwhere along with functional academics, social and self-help skills, the children are also trained in pre-vocational skills. They learn to make paper bags, jutemats, sewing and embroidery.

Since then, Manovikas Kendra has startedextension projects in other rural areas including Purulia(1988), Burtalla Slum Project (1990) and Balrampur(1993) .

As the school began to grow and had several units,there was need for an independent building to housethe various departments. Hence, the school shifted to6, Short Street in 1991. It was here that ManovikasKendra was registered as Manovikas KendraRehabilitation and Research Institute for theHandicapped. Almost six years later, ManovikasKendra reached a very important milestone as it movedinto its own premises at Eastern Metropolitan Bypass.

“We have clear aims and objectives for each of theunits at Manovikas Kendra like the pre-school, school,pre-vocational and vocational areas,” Dr Fatehpuriasays.

According to Ms Anamika Sinha, incharge of theSchool, the pre-school unit aptly called the “Earth” isthe junior most unit. ”Here, children come fromdifferent socio-economic backgrounds,” she says. The

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next higher unit, “Water” or school unit has childrenwho are more than 10 years of age. Here, they are taughtbasic functional skills.

Children of Manovikas Kendra

Children aged 13 or above go to pre-vocational unitcalled “Wind”. The Vocational unit or “Space” is forchildren above 16 years of age. Four major vocationsare taught at the Kendra, viz., weaving, tailoring andembroidery, baking and confectionery, cookery andcanteen management. The minor vocations include dyeand block printing, jute bag making, card making, toymaking, envelope and letter-pad making.

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Children of Manovikas Kendra

The children are imparted vocations according totheir abilities. For instance, Ramanuj Chowdhury hasbecome an expert in baking. He loves cooking as welland hopes to start a baking unit at his home someday.

Bakery Unit at Manovikas Kendra

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Priti Shah, an assistant at the Kendra has beenworking for the last seven years. Before that, she was astudent at the Kendra. She teaches simple English,Hindi, Mathematics and drawing to pre-vocationalstudents. She earns Rs 1100 per month.

The Kendra has also started a unit for providingeducation and training to children with hearingimpairment. This unit comprises of more than 55children with mild to profound speech and hearingproblems. Emphasis is mainly given on languagedevelopment through total communication procedurehere.

Recently, the Manovikas Kendra has initiatedComputer-aided learning program. As part of thisprogram, it provides a general working knowledge ofcomputers, word processing, data entry, simpledesigning, and calculation besides fun-learning games.According to Ms Sinha, the program has provedbeneficial to students of the hearing impaired sectionand to those appearing for National Open Schoolexams.

Ms Saptaparna Choudhury, Special Educator at theKendra talks of the therapeutic program. According toher, children and young adults with physicaldeformities are provided therapeutic treatment throughstructured activities and repetitive exercises. “Theentire program is designed to improve the child’sphysical and mental activities and agility,” she says.Hydrotherapy, multisensory unit, yoga therapy, musictherapy, dance and drama therapy, play therapy,psychotherapy and speech therapy are some of the

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therapeutic programs currently being undertaken.

Ms Anindita Chatterjee, Psychologist informs thatthe out-patient department of the Kendra has grownover the years and now patients not only come from allover West Bengal but even from Bangladesh. She pointsout that the objectives of counseling and training parentsare to provide home-based management program; toboost parent’s confidence levels as primary facilitatorsof their child’s development; and to provide a platformfor interactions between family members to encouragemutual feelings of competence and enjoyment.

Inspite of these achievements, Dr Fatehpuria feelsa lot remains to be done especially in rural areas andslums. More organizations, she feels, need to comeforward and provide services to the mentally retardedwith focus on integration. “We shall be happy to guidethese new units,” she says, “Voluntary organizationsneed to come under one platform and facilitatenetworking for creating an impact.”

Following Elbert Hubbard who said ‘the ability todiscover ability in others is the true test’, Dr Fatehpuriaand Manovikas Kendra have taken up the challenge tomake the lives of the persons with mental retardationmeaningful. “They should get the same opportunitieslike any other child,” concludes Dr Fatehpuria, “Weshould fight for the rights of these children.”

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Sudha KaulSudha KaulSudha KaulSudha KaulSudha Kaul

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Sudha KaulJeeja Ghosh, a social worker, is an epitome of

courage and determination. Despite her disability, shenot only completed her higher education but also wenton to train in self-advocacy and disability rights inEngland. She represents what Swami Vivekananda said,“To succeed, you must have tremendous will. I willdrink ocean says the persevering soul, at my will,mountains will crumble up. Have that sort of energy,that sort of will; work hard, and you will reach the goal.”

She asserts that empowerment bolsters the prideof people with disability. They and other powerlessgroups of society organize themselves into groupswhere they can validate their shared experiences, buildup skills, offer support to one another and synergisetheir efforts to get individual and collective messagesheard, she feels.

This ‘voice’ to fight for her rights is a gift of heralma mater, the Indian Institute of Cerebral Palsy,Kolkata.

Sumita Sahu, another ex-student of the Institutenow works as kitchen assistant in the Institute’s CateringUnit. Like Jeeja, she too feels that governmental facilitiesfor the differently abled are inadequate. Trained invarious fields of catering, Sumita has even baggedorders for the catering unit.

Jeeja and Sumita are not the only ones whose liveshave changed after coming to this Institute that startedin 1974. There are many more like them whose lives

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have been transformed through the training they havereceived here.

“We had a humble beginning,” says Mrs SudhaKaul, the pillar behind the Institute and its founder.Her perseverance has transformed it into one of theleading Centers for cerebral palsy in the country. TheInstitute started with just two children and two teachers.“Both of us were untrained,” continues Mrs Kaul, “Janiewas an actress working as an insurance agent and I wasan unemployed librarian. But both of us weredetermined to learn and make the center work.”

“It all evolved out of a need to give education tomy son, Arjun,” Mrs Kaul narrates, “There was hardlyany facility for those with cerebral palsy in the countryat that time. Since we knew very little, I started burningthe midnight oil reading books on special educationand psychology.”

The Army at Ballygunge Millitary camp made tworooms available and the Center was started under thebanner of West Bengal Spastic Society in November1974. Despite initial challenges, the offer of help wasreadily forthcoming. “Mithu Alur, who has pioneeredthe cerebral palsy movement in India, gave me a oneweek crash course on special education in her center inMumbai. Motivated by our efforts the tea industrypromised support. Within a few months, we had ourfirst trained staff.”

“Right from the beginning, we were very clear inour approach. Since there were problems involved inteaching children with cerebral palsy, it was essentialto have well qualified staff,” she continues, “With this

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in mind, we held our first in-service teachers trainingcourse way back in 1976.” The British Council theninvited two specialists to organize the first professionaltraining course for the Spastic Society.

Training for management of a child with cerebralpalsy is very important, says Mrs Ranu Bannerjee,Principal, Center for Special Education. A lot of time isotherwise wasted in managing the child. Besides, onemust know the child’s potential, she adds.

Going down memory lane, Mrs Kaul recalls aninteresting anecdote. “We had organized a workshopin 1975 and invited a senior official from the stategovernment as chief guest. Despite having received abrief on our activities, he in his inaugural addressreferred to our organization as one working on Plastic!”

By 1976-77, the Center had organized two seminarsat which specialists from different parts of the countryparticipated. “We sought help from England and atrained physiotherapist, Tessa Hamblin came over andestablished our physiotherapy department. The socialwork department was also set up a little later.”

Fund-raising receives a lot of attention at theInstitute. As early as 1978, the Calcutta Tea TradersAssociation held a special tea auction to raise funds forthe Center. Also, a special fund-raising event wasorganized and the first fund-raising brochure was alsobrought out. All these helped the Institute expand itsservices.

There was a major expansion of service programsby 1980. There were already more than 60 children at

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the Center for Special Education by this time. Also adiagnostic assessment and an outstation advisoryservice was formally established. After a survey wascarried out in Chetla in collaboration with All IndiaInstitute of Hygiene and Public Health, the Institutestepped into community work in the same year. Duringthis time the first publication, “What is a Spastic?” wasbrought out.

In 1981, the name of the society was changed fromWest Bengal Spastic Society to Spastic Society of EasternIndia. “The change of name signified not only expansionof services in the eastern region, but also meant morefacilities for people with cerebral palsy,” says Mrs Kaul,”We were now increasingly trying to help localorganizations in various districts of the eastern regionto start units for treatment and education of childrenwith cerebral palsy.“

Training maximum people so that they could starttheir own organization in their locality soon became amission. “We were able to start services in more or lessin all districts of West Bengal and also to branch out toother places in the North-East and elsewhere,” Mrs Kaulcontinues.

Finding regular funds and committed personnelbecame a major challenge for many of these programs.“We took it up as a challenge. By 1997-98, there were14-afffiliated groups in the country and 15 districtpartners in West Bengal,” she adds.

“In 1982-83, the support of the Army and theCalcutta Port Trust, secured for the society an acre of

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land. Here we raised our present premises,” Mrs Kaulsays. The teacher-training program was extended byfour months, assessment facilities were offered and acomprehensive system of referrals was also developed.

1984 was another landmark year as the JadavpurUniversity entered into collaboration with the SpasticSociety of Eastern India for its training courses.“Probably we were the first voluntary organization tobe recognized by an University,” says Mrs Kaul. Duringthis time, the outpatient department expanded itsservices to meet the needs of parents coming fromoutside Kolkata.

“Today we meet the needs of about 800 families,”says Mrs Reena Sen, Deputy Director, Indian Instituteof Cerebral Palsy, “Our endeavor has been to empowerthe community to help persons with cerebral palsy. Wealways prioritize the needs of families and emphasizeworking with them.”

An exhibition on “A Decade of Service” wasorganized at Birla Industrial and TechnologicalMuseum in 1984-85. “During this time, the publicationsdivision became more active and the VocationalTraining Unit expanded to include more vocationalskills,” informs Mrs Kaul, “The Research Division alsoexpanded and an audio-visual training kit for parentsand professionals was developed.”

The vocational training unit now offers trainingcourses in catering, silk screen-printing, computer dataentry and programming. The training programs varyfrom three-months to two-years and are open to adults

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over the age of 18. The objectives of these programs arefocussed to help trainees to get absorbed in the openmarket or go for self-employment.

Meanwhile the Department of Science andTechnology recognized the Spastic Society as a researchorganization in 1986. During this time, an organizationalstructure of the society was also evolved and a newdepartment, Institute of Cerebral Palsy was started.

The Institute building came up in 1987-88. Withinthe next few years, district services were started inCoochbehar, Nadia, Malda, West Dinajpur andBatanagar. “By the 1990s, we realised that on thethreshold of adulthood, our young adults needed abrighter future,” Mrs Kaul says, “The Indian MarketResearch Bureau was asked to conduct a market researchto identify potential areas for contract jobs.”

On the basis of the study, the Adult Training Centerwas established in 1992 with the objective ofrehabilitating young adults with multiple disability. Itsaim is total rehabilitation whereby the trainee canbecome a useful and contributory member of thesociety. Vocational Training and Placement Service aremajor components of the adult training program. Fourindependent units were created in the Center: computerunit, catering unit, leather and printing unit, and theadult leisure and learning unit.

According to Mrs Kaul, the aim is to bringrehabilitation to the doorstep of local communities. Inthis regard, an Integrated Education Department was

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set-up where students with specific learning problemsin mainstream schools are assessed for specific learningdifficulties. Both students and teachers in themainstream schools are given advice to cope up withthe problem.

Presently the Institute provides services underseveral divisions. Under Human ResourceDevelopment, it provides humanpower training;research; information, education and communication;therapy and rehabilitation services; social servicesguidance and counseling; P R advocacy informationcell. Amongst the courses run by the Institute are thepost-graduate diploma in special education, basicmanagement of cerebral palsy for medical practitioners,basic management of multiple disabilities in thecommunity; basic management of multiple disabilitiesin community-advanced; computer training courses foradults with physical and multiple disabilities.

Besides the Institute also provides a wide range ofservices including family services, school services, adultservices, community services and residential services.The family service include a diagnostic clinic, neurologyclinic, the out-patient department, infant screeningclinic, baby clinic and outstation service. The schoolservice includes the Center for Special Education. TheCenter is a day care center for education and treatmentfor children with cerebral palsy. There is even a pre-school playgroup for children aged 2-5 years. TheSpecial Learning Unit caters to the educational needsof students with profound and severe learningdifficulties.

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“In 2000, we decided to change our name fromSpastic Society of Eastern India to Indian Institute ofCerebral Palsy as we have now evolved into aninstitution of national importance and are serving over2000 families directly,” says Mrs Kaul.

“There is now a greater focus on a time-tested wayof reaching out to the children and persons withdisability who are deprived of services,” avers MrsKaul, “Our growth has been due to the collectivesharing of knowledge and networking.”

“We shall continue to give greater emphasis totraining, information dissemination andstandardization of services,“ avers Mrs Kaul. Sheconcludes with a feeling of elation, “A little more than25 years ago, as Junie, Om (my husband) and I sat andplanned Arjun’s future, we did not even, in our wildestdreams, imagine an organization of this stature,magnitude and appeal.”

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Sister Rita MarySister Rita MarySister Rita MarySister Rita MarySister Rita Mary

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Sister Rita MaryO S Marden had rightly said, “There is no medicine

like hope, no incentive so great, and no tonic so powerfulas expectation of something tomorrow.” It is with thishope, a dream that her son would become a computerengineer that Dr Mini Shibu quit her job.

It was not an easy decision for her to take as shewas working as an assistant professor at a medicalcollege in Gujarat. “Initially I was a bit sad to leave thejob and come to Chennai for Ashish’s education,” shesays, “But now I find the task of bringing up a childwith hearing impairment more satisfying andchallenging.”

She exudes confidence that some extra effort, a littleextra love, a little more training can really transformthe life of a child with disability. This is the duty of thechild’s parents, she feels.

In her bid to bring up her child, she gets supportand strength from the Little Flower Convent School,which caters to the educational requirement of childrenwith both hearing impairment and visual impairment.

Started in 1926 by Belgian sisters, the driving forcebehind the Little Flower Convent has been Sister RitaMary, formerly its Principal.

Born in 1937 in Uttamapalayam, Madurai, SisterRita Mary initially did not have any exposure to theproblems of the differently abled in her life. “I took uptraining to teach general children after I came in touch

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with the Belgian sisters who were running a school inSirivenliputhy near Madurai,” she recollects.

“In 1964, the Belgian sisters said I would be moresuitable to work for the differently abled and placedme here at the Little Convent,” she says, “At that time,it was called the School for the Blind and Deaf.”

Two years later, she resolved to dedicate her lifecompletely for the persons with disability. She decidedto become a nun. After completing her training in 1968-69, she came back and rejoined the School. “Soon thePrincipal, Sister Andreas fell ill. At that time, I was askedto go to Mumbai to take training for the deaf,” shereminisces, “Immediately after coming back I was askedto take over as Principal of the deaf school.”

Sister Rita Mary shares an interesting anecdote fromthe early days of her becoming the Principal. “A seniorteacher at the school was my teacher in school days. Soother teachers used to inquire about me – like whetherI was regular at school. She used to wonder how a personlike me who loved materialistic things could give upeverything to become a sister.”

After taking over as Principal, Sister Rita Marydecided to reorganize the school. Changes wereimperative to make the school an institution ofexcellence, she felt. She went to England to do aDiploma in Advanced Education for the Deaf toenhance her knowledge base. “I went to Germany,Denmark and France to get acquainted with the scenariothere,“ she continues, “One of the first things I did aftercoming back was to re-christen the School.”

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The vagueness in the name of the school—‘Schoolof the Deaf and Blind’ was actually pointed out by asmall girl. “We changed the name to Little FlowerConvent for the Deaf and Blind. Now the two schoolsare separately called Little Flower Convent for theHearing Impaired and Little Flower Convent for theVisually Impaired.”

Another major initiative that Sister Rita Mary tookimmediately after coming back was to start the processof involving parents. “Parents have to be made equalpartners in the development of a child. In this regard, alarge number of children at school were made dayscholars,” she says.

“Earlier all children were staying in the hostel. Weexplained to parents that home was the best place forthe development of a child and that their role wascritical,” she adds.

Besides, efforts were initiated to reach out todifferent sectors of the society. “As part of thisnetworking process, we started inviting people fromvarious sectors of the society to preside over differentschool programs. The tradition of having only priestspresiding over functions was thus broken.”

“In one such program, the chief of the Chennai’sPallavam Transport was invited. I requested him toprovide buses for the students. He agreedimmediately,” she recalls.

To further involve the parents in children’seducation, Sister Rita Mary initiated a process where

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parents could come, sit and observe on what was beingtaught in the class. “This innovative method whereparents can keep track of their child’s progress hascontributed in a big way to their education. A largenumber of our students have done really well and arenow well settled.“

Students of the Little Flower Conventfor the Hearing Impaired

Chitra, a former student, now works with theIncome Tax department. A President’s award winnerfor best employee (deaf category), Chitra says all shehas achieved in life is due to the Little Flower ConventSchool. Now she comes to her alma mater everyday asher daughter is also studying in the same school. She isconfident that her daughter would also be able to makeher career studying in the School.

The School’s Jubilee year in 1976 saw several newinitiatives. Conscious of the need to impart qualityeducation and services a teachers training program was

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started. “In the same year we sent our students toappear for class Xth exams. We were one of the firstschools in India to send students with hearingimpairment both for class Xth and class XIIth exams,”Sister Rita Mary says.

Besides, a Guidance Home for Adult Deaf Girlswas started. “Probably it is the only disabled girlshostel in the country. The Guidance Home aims atinstalling confidence, preparing the girls for integration,identifying and imparting training for jobs,” she adds.

In 1983, Sister Rita Mary went to Holland for a three-month training on ways of conversing with speechlesschildren in the classroom. Later more teachers were sentfor the same training. The objective was to understandand put into practice the maternal reflective method.

“We now use this method to teach pre-school goingdeaf children,” she informs, “The method involves heartto heart conversation among the children and betweenchildren and teachers in the classroom. This helps inmaking the classroom livelier. Besides, the methodhelps children to understand grammar rules bythemselves. It also helps in developing the reading skillsof the students”

Presently, Principal of the St. Louis College of theDeaf, Sister Rita Mary retired from the Little FlowersConvent in 1994. “Hearing impairment is an invisiblehandicap. People with such an impairment are thoughtof as normal,” she says, “That is why they are not givenproper concessions. Besides there are none to voicetheir rights.”

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Sister Rita Mary feels that for total rehabilitation,early intervention should be made a priority. Besides,she strongly advocates the need for inclusive education.“Implementation of various schemes of the hearingimpaired are very tardy and this needs to be reversed,”she concludes.

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T D ShroffT D ShroffT D ShroffT D ShroffT D Shroff

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T D ShroffTanaaz slowly reads the headlines of the morning’s

newspaper. Her classmates excitedly listen as she readsto them a news item pertaining to their favorite actorHrithik Roshan getting married to his sweetheartSuzanne Khan. What is in progress is the newscommunication session in the Jai Vakeel School forChildren in need of Special Care. The aim of the sessionis personality development.

Samir, Tanaaz’s classmate, loves to play theSolitaire, a game of cards while Clyde has learnt tomake bills and use calculators. They are no longerwithdrawn and are now able to relate to happeningsaround them.

A former student at the School, Dharmender Kelkar,profoundly retarded, is now earning Rs 500 everymonth. He is now employed in the School as a helperand teaches how to make folders and envelopes.

Barry Mohammed, 26, in the vocational group, haslearnt to make agarbatis and gets a stipend of Rs 30.Another student, Rafiq Kanchwalla came to the schoolat the age of six. Partially hearing impaired with lowintelligence quotient, Rafiq is now a brilliant painterand visualizer. He has even represented India in theInternational Special Olympics in football.

One of the oldest Institution of children withspecial needs in the country, the emphasis at the JaiVakeel School has been on holistic development of thechild. The aim is to make them as much self-dependent

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as possible besides enhancing their personality.

“The main reason for our success over the years isour emphasis on identifying the aptitude of ourchildren and developing them accordingly,” says MrsTehmi D Shroff, Secretary of the Research Society forthe Care, Treatment and Training of Children in Needof Special Care. The Society runs the School.

“The Research Society has evolved into one of thepioneering institution in the country engaged in totalrehabilitation of children with mental retardation, manyof whom are also afflicted by cerebral palsy, visual andauditory impairment and are physically challenged,”Mrs Shroff says. The Society has been able to spearheadthe setting up of several institutions including theSchool, a Vocational Training and Rehabilitation Center,a Research Center, Rural Outreach Programs,Residential Complexes for boys and girls and a Collegeof Special Education.

The Research Society or the School for the Childrenin Need of Special Care did not come out of the blue.“My sister, Dina was born in 1936,” recollects Mrs Shroff,“By the time she was two months old, my parentsrealized that her development was not quite normal.When she was six months, a family doctor diagnosedthat Dina was a victim of Down’s Syndrome.”

“My parents took the news with stoic resignation.They allowed Dina to grow at her own pace, facilitatedher participation in all family activities,” she continues.

“When she was four years old, we asked motherwhen Dina would go to school,” Mrs Shroff recalls,

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“Mother said Dina was a very special child and needsa special school. She said we would start a school forDina.”

On October 10, 1944 Mrs Shroff’s mother, Mrs JaiVakeel started the ‘School for Children in Need ofSpecial Care’. It was started in her drawing room withjust two students, Dina and Nargis Daruwala. The mainobjective was to offer children with mental retardationspecial understanding and individual attention.

“Being one of the first school of its kind in thecountry, there were no guidelines that mother couldrefer to,” Mrs Shroff says, “She had to do a great deal ofresearch on mental retardation. She correspondedregularly with Dr Johnstone and Ms Helen Hills ofVineland School besides several other doctors abroad.”

Mrs Vakeel had to innovatively construct all itemsfrom scratch, right from the equipment used to thesyllabus. Within a few months, there were 25 childrenin the school.

According to Mrs Shroff, the ultimate aim of theSchool is total rehabilitation and making a child withmental retardation into a productive member of thesociety. To achieve this a Vocational Training Sectionwas started in 1948 with the help of the Salvation Armyin the garage of Mrs Jai Vakeel with one handloom andtwo desk looms. The Section aimed at helping thestudents achieve as much independence as possiblebesides keeping them meaningfully occupied.

The local Government recognized the School in

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1949. By now it was imparting training in home science,embroidery, knitting, string work, weaving and basketmaking. Carpentry was introduced as a new activity in1951 and in the same year, the School got recognitionfrom the Government of India. In the same year, theResearch Society for the Care, Treatment and Trainingof Children in Need of Special Care was formallyregistered to provide a wide range of facilities for thetreatment and development of children with mentalretardation.

“Right from the beginning, mother concentrated onupgradation of the activities of the School andintroduction of trained teachers,” Mrs Shroff recollects,“As early as 1946, she started organizing lectures byrenowned doctors and professors. By 1952, we wereready to start a Special Education course, the first of itskind in India, to meet the shortfall of trained teachers.The course was recognized by the MaharashtraGovernment.”

From the two-storied bungalow of the Vakeel’s, theSchool moved to its present premises in Sewri Hills in1957. Here, the Vocational Training School was startedin a more organized way. The residential blocks werecompleted in 1959.

As part of its efforts to provide comprehensiveservices, the Research Society has been giving lot ofemphasis to research. The first research workundertaken by the Society was as early as 1948. TheParsi Panchayat and the Bombay Head Masters’Association wanted information on the number of

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children with mental retardation among the schoolgoing population of the city of Mumbai. The Societywas entrusted with the job of collecting data in thisregard.

By 1964, the Society had formed a proper researchpanel within the school itself and started investigatingthe root-causes of retardation and to suggest ways ofpreventing or alleviating them. For seven years, thelaboratory conducted tests in the school premises itself.In 1971, through a donation of Rs six lakh, a separatebuilding for research activities was constructed and wasnamed as Shrimati Motibai Thackersey Institute forResearch in the Field of Mental Retardation.

According to Dr Aparna Parikh of the Institute,there is a multi-disciplinary team comprising ofpediatricians, psychiatrists, clinical psychologists,speech therapists and audiologists, occupationaltherapists, cytogeneticists, biochemists,physiotherapists and social workers at the ResearchCenter. The Center has a cytogenetic laboratory,biochemical laboratory, audiometry and EDPDepartment. Over the past 25 years, more than 6000cases have been assessed at the center and suitabletraining and rehabilitation programs planned for them.

“The research team has developed programs forearly detection and intervention of developmentaldelay, developed therapy facilities for maladjustedchildren, parental counseling, genetic counseling, etc,”says Dr Parikh. The Center is also involved in researchwork including study of etiological factors in mentalretardation, detection of fragile X mental deficiency

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syndrome, study of chromosomal anomalies in mentalretardation and study of inherited metabolic disordersin mental retardation.

“Today there are more than 400 students at theSchool. In academics, there are pre-nursery, nursery,pre-primary and primary and higher education sections.The school provides pre-vocational training andpersonality development, arts and crafts, sports. Thepsychosocial activities include parent counseling, homevisits and gardening,” says Mrs Shroff.

Children of Jai Vakeel School performing dancedrama

“We lay special emphasis on dance dramas as theyhelp in cognitive development of a child and have agreater effect on a child than therapies,” says MsManisha Shastri, Project Coordinator.

“Since 1940 our students have been taking part in

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dance drama,” recollects Mrs Shroff, “My sister, Dinaperformed Cinderella with her teacher in 1949.”

Referring to the Vocational Training andRehabilitation Center, Mrs Shroff says there areapproximately 250 boys and girls for ‘open’, ‘sheltered’and ‘home’ employment. “When choosing anoccupation for students, care is taken to identify asuitable field in which the student is comfortable,” shesays, “Since 1992, pre-vocational training andpersonality development program have beenimplemented in a big way.”

Vocational Training being imparted at Jai VakeelSchool

As a continuation of the Special Education coursestarted in 1952, a Minds College of Special EducationB.Ed Special (MR) started with a B.Ed. course in 1991.The course is affiliated to the University of Mumbai

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and is also recognized by the Rehabilitation Council ofIndia. The College also runs a Diploma in SpecialEducation course which is affiliated to the NationalInstitute for the Mentally Handicapped.

As part of its expansion program, a rural branch ofJai Vakeel School was started on January 21, 1998 at SaiBaba Seva Dham, Kanhephatta Village, Mawal Taluka.A survey of 64 surrounding villages with a populationof approximately 1,00,000 persons was carried outbefore starting the school.

The Research Society has also set up a specialcenter—Sairam Autism Center for Children with Autismand Related Disorders. In this Center, comprehensiveassessment, therapeutic, dietary and other interventionservices are being provided for autistic children withthe help of a multi-disciplinary team of medical andpara-medical professionals.

In recognition to its commendable contribution inthe field of Mental Health, the Research Society has wonseveral awards. Its founder Mrs Jai Vakeel got thePadmashri in 1977. In 1990, the Research Society got anational award for its outstanding performance in thefield of Handicapped Welfare. Again in 1991, twomembers of the Vocational Training Center, A K Royand D P Nemane won the National Technology Awardfor the Welfare of the Mentally Handicapped forinventing ‘Jai Loom’, a one-hand operated weavingloom. This invention has helped students with severedisability to earn according to their capacity.

For more than 50 years the comprehensive center

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for children with special needs has been providing awide range of rehabilitation services. Taking leaf fromDag Hammarskjold: ‘You have not done enough, youhave never done enough, so long as it is still possiblethat you have something to contribute’, Mrs Shroff says,“We still have a long way to go.”

Talking of her next intervention, she adds, “Wewant to create a home where our elderly students whoare now over 50 can stay with their parents. It is part ofour Parents’ Association Project and we have alreadyacquired 12 acres of land for this. It would be called‘Dina’s Home’ and would consist of cottages, doctors’clinic, a small hospital and a workshop.”

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Dr Thakur Hari PrasadDr Thakur Hari PrasadDr Thakur Hari PrasadDr Thakur Hari PrasadDr Thakur Hari Prasad

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Dr Thakur Hari PrasadFor Ms Govindamma, it is not just the education

or vocational training that the children are exposed toat the foster care homes but equal emphasis is given onbasics like bedmaking, toiletries and changing dress.“This is almost a 24-hour job as we have to be alwaysconscious of the special needs of the children,” she says.She is the warden of the foster care homes.

Probably one of the few institutions in the countryto develop foster care homes for children with mentalretardation, the Thakur Hari Prasad Institute of Researchand Rehabilitation for the Mentally Handicapped(THPI) has come a long way since 1967 in providingcomprehensive services for the persons with mentalretardation.

“The children are in constant supervision of fostercare mothers,” Ms Govindamma continues, “Here wehave four children and one trained foster care motherin one cottage.”

“At THPI, we conceive empowerment as the totaldevelopment of persons with mental retardation. Itmeans not just the development of work skills, but alsothe development of the person on the whole,” pointsout Ms Anuradha Jegannathan, additional directoradding that child from different parts of the countrycome to the foster care homes.

The force behind the evolution of THPI as a leadingorganization for those with mental retardation has beenDr Thakur Hari Prasad. Born on July 1, 1935, Dr Prasad

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hailed from a family having a background inphilanthropy and social service. Even as a student hishobby was to collect funds for social causes as he hadan innate passion for child development activities.

To take forward his passion, he worked on a pilotproject on child development in 1959-60 that wasincidentally his first intervention on policy issues at thenational level.

He succinctly recalls how he made the intervention.“I was the Secretary of the Andhra Pradesh unit of theIndian Council of Child Welfare in 1959-60. During thistime we had an Executive Committee meeting in NewDelhi. Mrs Indira Gandhi was the President of theOrganization at that time. At the end of the second dayof the meeting, Prime Minister Nehru had invited us attea in Teen Murti Bhawan.”

On meeting Pandit Nehru, Thakur Hari Prasadsaid, “Sir, I am honored at having tea with the architectof modern India. I think you alone can understand ourconcern. We are working on child development, butunfortunately child development is not a priority in theNational Perspective Plan even though the second five-year plan is almost through.”

Pandit Nehru immediately called his secretary, MrIyengar who informed that Rs 64 lakh had already beenallocated for a pilot project on planning for childdevelopment. “Pandit Nehru said he would give us Rs64 lakh for 64 villages in Andhra Pradesh for five yearsto work on pre-natal, ante-natal and post-natal care.”

“We took this up as a challenge and the Pilot Project

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was a 100 per cent success,” Dr Prasad recalls, “Wefollowed it up with the first All India Seminar to framea national policy for child welfare. During this seminar,we evolved a framework and then presented it toPandit Nehru. It was accepted in toto and Rs three crorewas allocated in the Third Plan Period.”

While working for the Pilot Project, there weredevelopments in the personal front, which actuallypropelled Dr Prasad to work for the persons withdisability. “In 1960, I had my first son who was bornnormal. He got a severe diarrhea attack when he wasjust four years old. The doctors suspected he was losinghis eyesight. So they put clippings on his head. Thisinjured his head and he developed mental retardation.Then and there I dedicated myself to the service ofpersons with mental retardation.”

Destiny took Dr Hari Prasad to Stockholm for thefirst World Children’s Congress in 1967. “Sweden is theMecca of services for the persons with mentalretardation and I got a good exposure to the facilitiesthere. The Government there takes care of those withmental retardation with a philosophy of ‘womb totomb’,” he says.

After coming back from Sweden, Dr Hari Prasadmet the Andhra Pradesh Chief Minister and told himthat he wanted to start a rehabilitation institute for thepersons with mental retardation. He immediatelyhelped him in getting a palace called Sagar Nooma justnext to Raj Bhawan.

Thus was started the Thakur Hari Prasad Instituteof Research and Rehabilitation for the Mentally

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Handicapped in September 1968 with 30 staff members.“The only major qualification I had was that I was thefather of a child with mental retardation. This wasresponsible for my total commitment at the personallevel,” Dr Hari Prasad says.

“We were the first Institute in the country to evolvea multi-disciplinary approach towards rehabilitation ofthe persons with mental retardation,” he says, “Mentalretardation is a condition that causes heterogeneity inspecial needs of individuals affected. Henceintervention has to be need-based and should be madeby professionals and para-professionals from differentdisciplines.”

Right from the inception, THPI has had full timefaculty in neuro-paediatrics, psychiatry, clinicalpsychology, special education, speech pathology andaudiology, physiotherapy and occupational therapy.Besides the Institute also offers augmentativeinterventions to supplement clinical therapies throughdance therapy, music therapy, yoga, hydrotherapy, arttherapy, horticulture, etc.

According to Dr Thakur Hari Prasad, a multi-disciplinary approach ensures a holistic and integratedservice delivery resulting in optimum benefit ofpersons with mental retardation. Besides providingintra, inter and multi-disciplinary interactions andcollectivity in management decisions, the approachenables clinical intervention to become part and parcelof daily life as mid-level para-professionals areempowered to train grassroot workers and families.

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Vocational Training for Students at THPI

At THPI, the multi-disciplinary team meets everyweek to review the weekly programs and to plan forthe forthcoming week. An open forum of all the clinical,teaching and training team is held on the first Saturdayof every month to review the multi-disciplinary co-ordination of the previous month and formulate plansfor the ongoing month.

“The institution became popular within a year ofits existence,” reminisces Dr Thakur Hari Prasad, “Our

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philosophy has been ‘let us rewrite new standards inrehabilitation services and establish monitoring systemfor compliance’.” He constantly urges his team tointrospect, evaluate, consolidate, streamline andupgrade the standard in every avenue of operation ofthe organization through interactive and participatorymodalities.

“Till 1985 nothing substantial was taken up in thecountry as part of the International Decade of theDisabled,” Dr Prasad, underlying the contribution ofTHPI at national level says, “One fine day I wassurprised to see disability as the eighth point of RajivGandhi’s 20-point program for the nation.”

“Enthused, I sought an appointment with the PrimeMinister,” he continues, “I told him I would volunteerto prepare a national policy for the persons with mentalretardation. Without a moment’s hesitation he lent hissupport for the policy.”

“I went around the country and met almost all chiefministers and chief secretaries requesting them to sendrepresentatives for formulating a national policy onmental retardation,” he adds.

The THPI organized an all-India seminar for policyformulation for the mentally retarded in February 1987in Hyderabad. A document was prepared after theseminar and in January 1988, a 45-member delegatepresented it to Prime Minister Rajiv Gandhi. Withinseven days, the Government appointed the Behrul IslamCommittee as a follow-up to the presentation. Anexclusive working group was also constituted under

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the Eighth Plan for disability.

“Till the Seventh Plan, there was no mention ofdisability management in any Plan Period. Within 60days, the Behrul Islam Committee was asked to giveits report,“ Dr Hari Prasad says, “We could push theissue of disability in the Eighth Plan Period. Besidesthe Committee recommended the enactment of aDisability Act.”

“The Act was not immediately passed,” hecontinues, “It needed a sustained campaign on the partof the entire disability sector to force the enactment ofthe Persons with Disabilities (Equal Opportunities,Protection of Rights and Full Participation) Act, 1995. Itinfact coincided with the Asia-Pacific Decade of theDisabled Persons, 1991-2002. ”

The Policy Seminar of 1987 had recommended thesetting up of a National Trust for those with mentalretardation. The aim was to ensure security of thepersons with mental retardation after the death of theirparents. Extensive lobbying since then has ensured thesetting up of a National Trust for the Welfare of thePersons with Autism, Cerebral Palsy, MentalRetardation and Multiple Disabilities.

“I also initiated the campaign to convert theRehabilitation Council of India from being a society toa statutory body by an Act of Parliament,” Dr HariPrasad points out, “To improve the quality of services,we should have regulation. Besides we have to ensureequalization of services and opportunities for thedisabled.”

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The intervention of the THPI include rehabilitationof children and young persons with mental retardationunder judicial custody. Since 1985, THPI conductsannual screening of children at the Government JuvenileHome for Boys. Those identified as mentally retardedare brought to the Institute daily and put throughindividualized interventions apart from systematicallyplanned educational and training programs.

Meanwhile in 1987, the Institute initiated an earlydetection and intervention project, ‘Surya Jyothi’ incollaboration with German experts. Its main focus wason early detection, early intervention and early socialintegration of infants and children afflicted with orthreatened by mental, physical or multiple handicaps.Subsequent integration is done in the Montessorienvironment.

Another major project was ‘Anvenshana’.According to Dr Jegannathan, early detection andintegration was carried out in the neighboring ruralareas. The basic aim of the project is prevention, earlydetection and management of disability among 0-5 yearschildren within the existing infrastructure of thecommunity.

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Children learning skillsets at THPI

“Though 80 per cent of the persons with disabilitylives in rural areas, rehabilitation services for them arealmost non-existent,” rues Dr Hari Prasad. There is needfor humanpower development, devising local training

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methods and integration in the rural areas, he adds.According to him, community participativerehabilitation centers are the panacea for such needs inrural settings.

In this backdrop, the THPI initiated a ruralprogram in Lalacheruvu, near Rajahmundry, EastGodavari District of Andhra Pradesh in 1990. The mainfocus of this program is on convergence of services, localparticipation, local suitability, and available andaffordable rehabilitation measures. The Rural Centerhas developed viable and sustainable strategies to reachout to the whole of East Godavari District. “The objectiveof the project has been to evolve a replicablecomprehensive and integrated community approach tothe rehabilitation of the mentally retarded in thecountry,” he says.

A rural camp program involving detection,intervention and follow-up of services for persons withmental retardation is the highlight of the program.Individuals with other disabilities are also supportedand referred to appropriate agencies.

The Thakur Hari Prasad Institute had thedistinction of hosting the XI World Congress on MentalRetardation in 1994. It was the first time that the WorldCongress was organized in the country.

In 1998, Dr Thakur Hari Prasad assumed office asthe Chairman of the Rehabilitation Council of India.During his tenure, two important national programswere initiated— a Bridge Course of one-monthduration, in each major area of disability, for those who

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have been working in the field prior to 1993 and atraining program for doctors of Public Health Centersthroughout the country.

Dr Thakur Hari Prasad has often emphasized onthe need to enrich the creative life of a community.“Creativity is a part and parcel of life itself, giving lifelong learning opportunities to many people. Our roleis to reach out to people, raise awareness of what isaround us as a community, present opportunities forgrowth and involve disabled people in creative activitythat would influence all aspects of their lives,” heconcludes.

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Dr Uma TuliDr Uma TuliDr Uma TuliDr Uma TuliDr Uma Tuli

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Dr Uma TuliGod, give me strengthTo instill life in flowersTo show the right path to the world.Give me strengthTo spread the sweet fragrance all aroundTo welcome and bid adieu to the Sun.Give me strengthTo light the eternal flame of knowledgeTo dispel darknessAnd spread light everywhere!

It is a prayer that is being recited every morning atthe Amar Jyoti School for the past 17 years. A pioneeringinstitution promoting integration right from day one ofits inception, its major thrust has been economicindependence. This has been a vital component of itsrehabilitation program that makes mainstreamingstudents with disability more dynamic.

Probably that is one reason why Amar Jyoti has aunique ratio of 50:50 when it comes to children withdisability and general students in a class. Also its aimhas been to inculcate a better understanding of disabilityamong the general students while instilling confidenceamong children with disability.

“Here at Amar Jyoti, both disabled and non-disabled students compete on equal terms whether itis academics, sports, dance, music or vocational skills,”

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says Dr Uma Tuli, its progenitor.

Born on March 3, 1943, Dr Tuli had her educationin Gwalior, Madhya Pradesh. Both she and her brother,Mr Arun Kapoor were active in school in various fieldsincluding sports and cultural events.

A student of English, Dr Tuli had no prior exposureto persons with disability till a tragedy struck herfamily. Recalling that eventful day in 1965 that sowedthe seed for a life long commitment to work for thepersons with disability, she says, “I was at the collegemela having fun at the merry-go-round when I receiveda message that my brother had met with an accident. Irushed to the hospital and saw my brother, beingbrought inside the hospital in a car with his leg hangingout. Amputation was inevitable. It was the time of theIndo-Pak war and the hospital had received manyyoung men with their upper or lower limbs amputated.With one blow many of these active young menincluding my brother had been rendered handicapped.”

People with disability were a secluded lot thosedays, says Dr Uma Tuli. There was absence of an earnestdesire to look into the problem of persons withdisability, though there was no dearth of sympathy.“The orthopedic wards which I visited during thatperiod were full of people in deep despair. They knewthey faced a bleak future with meager treatmentfacilities and almost non-existent rehabilitativeservices,” she recalls.

“From these experiences I realized that the onlyway to tackle disability was to introduce integrated

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education, vocational training for self-employment andnecessary medical assistance for mobility andmeaningful existence. So, I decided to do somethingconstructive in the field of disability,” she continues.

At that time, Dr Uma Tuli was working as alecturer. In fact, she was one of the youngest lecturersto be appointed by the Union Public ServiceCommission, and taught at both Gwalior and DelhiUniversity. Her dream of setting up a rehabilitationcenter with a difference received overwhelming supportfrom her parents, relatives and friends. She wasdepositing her entire salary in the post office. Aftermarriage, she and her husband went around the countryand abroad to have an overview of the rehabilitationservices so that the best could be assimilated into theproposed center.

Finally in 1981, during the International Year of theDisabled, Dr Uma Tuli started the Amar Jyoti CharitableTrust. “Initially we decided to focus on theOrthopaedically disabled though with a goal toeventually offer cross-disability services,” she says. Theaim was to integrate people with disabilities in society,increase awareness about the holistic approach torehabilitation and provide an opportunity for integratedsports and cultural activities.

As most Institutions like this have a humblebeginning, so did Amar Jyoti. “In July 1981 we startedAmar Jyoti from the terrace of our house at GreaterKailash in New Delhi. We also started a workshop formanufacturing calipers and artificial limbs,” Dr Tulirecalls.

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“Initially we raised money through small donationsfrom friends and well-wishers,” she continues, “Besideswe had a lot of volunteers who were enthusiastic anddedicated. They helped to conduct surveys in the under-privileged colonies and also hold camps afteridentifying the cases. Measurements were taken at thesecamps and calipers, artificial limbs, wheelchairs andtricycles were provided free.”

Dr Tuli’s determination to effect a change in thelife of persons with disability can be gauged from apoem she wrote in the first publication of Amar Jyoti:

“Who listens to my cry,It has a feeling but no poetry,There is agony,But no tears.Give hearing aids,To those who have ears,But cannot hear……”

“To identify people with disabilities and to meettheir immediate need for artificial limbs was among thefirst programs we took up after starting Amar Jyoti,”Dr Uma Tuli says.

To evolve an integrated approach to rehabilitation,Dr Tuli planned to start a school. Since it could not bestarted at her residence, she began the search for a goodlocation. As luck would have it, Air Chief Marshall(retd.) P C Lal, a trustee of the Raja Ram Mohan RoyTrust offered a space under the shade of trees in theTrust premises at Rouse Avenue.

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“We started the school under the shade of trees inJuly 1982,” recalls Dr Tuli, “There were 30 students inall—15 disabled and 15 non-disabled students.Integration was the mantra right from day one.”

A major objective of the school has been to ensurethat students gain admission to mainstream schoolswhen they leave Amar Jyoti and become confident inundertaking further studies.

Says Ms Mini Bhandari, now vice-principal of theAmar Jyoti School: “I was doing my graduation whenDr Tuli, who was my lecturer in college, told me aboutthe school she had started. Initially, I used to go andteach students in my free period.” She formally joinedthe school in 1986 after completing her masters and B.Ed.

According to Dr Tuli, the Amar Jyoti School hasbeen able to strike a balance between the integrated andinclusive education systems. While ensuring equalnumbers of non-disabled and students with disabilityin the school, it also lays a major emphasis on co-curricular activities and sports. The school is till classVIII after which students are encouraged to join regularschools. Those with severe disability are motivated tojoin the National Open School to complete their class Xand XII. Besides, the school has also evolved anIndividual Education Program.

“The growth of the services using IndividualEducation Program made us realize that we neededsome facilities for those with mental retardation,” DrTuli says, “There were children who were unable to

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pass for two consecutive years and would generallyend-up as drop-outs. This could solve the problem ofthe school, but not resolve the child’s problem.” In thisbackdrop, a special section was started for them.Students in this section are integrated into mainstreamclasses wherever possible. They also participate in allco-curricular activities along with other school students.

Students of Amar Jyoti taking part in a march past

Help came from unexpected quarters in small butmeaningful ways. “There were some who donated filecovers and papers for office use, College studentsvolunteered to take classes. Kausalya, a volunteer fromthe community, with her team of supporters conducteda survey for identification and initially worked as aperipatetic teacher also. The most touching contributioncame from a 12-year boy living next door, who donated

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his pocket money of Rs 10 every month for severalyears.”

Fund raising has received a major thrust at theAmar Jyoti Charitable Trust. The first major campaignwas undertaken during the Asian Games in 1982. Andas early as 1983, the foundation stone of the Amar JyotiRehabilitation and Research Centre was laid atKarkadooma. Vocational training courses and medicalservices were started during the same year.

Students of Amar Jyoti at an Archery Contest

“At Amar Jyoti, students are provided vocationaltraining alongside academic studies. Those who showan inclination for higher studies are encouraged to doso. Others are trained in various vocations as per theirproficiency,” says Dr Tuli

The vocational training at the Centre includecomputers, watch repairing, crafts, tailoring, textile

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designing, weaving, secretarial work, electrical repairs,beauty culture, screen printing, candle making andcarpentry. According to Dr Tuli, holistic rehabilitationis the first major step towards empowerment. “It comesonly from increased mobility and augmented ability tocontrol body movements, but also most importantlythrough equipping a person with disability with lifeskills necessary to make integration into the mainstreama viable proposition,” she adds.

Another critical and vital component of the holisticrehabilitation process is taking services to the doorstepof those who require them. Towards this end, AmarJyoti has been following the Camp Approach. Presentlyrehabilitation services are being provided in 30 urbanslums through the Amar Jyoti Community BasedRehabilitation Project centres. The community workersand volunteers in these slums conduct door-to-doorsurveys and identify persons who require variousspecialized services. A team of doctors, therapists, para-medical staff, orthotists and prosthetists, psychologistsand counselors offer on-the-spot comprehensiveservices. Professionals do follow-up through visits.Many a time, the beneficiaries are themselves broughtto Amar Jyoti.

Innovation and ability to respond to newchallenges over the years has resulted in evolution ofnew programs at Amar Jyoti. One such innovation hasbeen the Child Guidance Centre started in 1990 as aresponse to parents’ need to solve their children’sproblems. The Centre has developed a home training

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program that has contributed to a greater understandingof the child within the home environment.

“To provide adequate services for persons withdisability, there is an important need to meet theincreasing demand for humanpower,” says Dr Tuli,“Accordingly, we started a multi-category teachertraining course in 1992, besides a diploma course inspecial education in mental retardation.” Anotherlandmark achievement was the starting of BScPhysiotherapy course recognized by Delhi University.

Comprehensive Medical Services has beendeveloped at Amar Jyoti. Over 30 leading doctorsvolunteer their time to augment the permanent medicaland para-medical team. Services include day hospital,operation theatre, radiology, pathology and therapeuticservices including physio, occupational and speechtherapy, audiology, prosthetic and orthoticsengineering.

Dr Tuli always had a dream to start rehabilitationservices at Gwalior, her place of birth. This dreambecame a reality in 1990 and the center there has beenrunning a holistic rehabilitation program. Her two-decade long contribution to the cause of persons withdisability got due recognition when she was appointedthe Chief Commissioner of Persons with Disability inApril, 2001.

institution builders in the disability sector

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