Coffee Table Book 140 Years 140 Stories

8/21/2019 Coffee Table Book 140 Years 140 Stories

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140 years 140 stories

Incredible 140!

A compendium of stories from the eld(1874 - 2014)







All rights reserved. No part of this publication may be reproduced in any form or by electronic or mechanical

means, including information storage or retrieval systems, without prior permission.

All images in this book have been reproduced with the knowledge and prior consent of the individual

concerned.

Concept & Editorial: Nikita Sarah

Text & Layout Design: Nazia Erum

Technical Support: Nilima Monica Purti, Sarika Gulati & Sabyesachi Bharti

Photographs: Sarika Gulati, Peter Clayton, Georgina Cranston, Bhupinder Singh, Nihal Anand and TLMTI staff

Published By: Diana Princess of Wales Health Education and Media Centre



Incredible 140!140 years 140 stories

A compendium of stories from the eld





Foreword

Over one hundred and forty years ago one man’s spirit of adventure took him to India - Wellesley Bailey. This young Irishman found his calling here andthe future course of his life was totally altered when he saw the appalling living conditions and the social isolation of people living with leprosy.

The situation of people aected by leprosy today has, in many ways, changed from the days in which the pioneers of missionary leprosy work in thenineteenth century started their journey. They began with simple, uncalculating compassion to work towards countering the contempt and fear that was

associated with Leprosy. They met fear with love, contempt with compassion and avoidance with involvement.

With time, as the organization grew manifold it was realized that the ‘whole’ man called for holistic help in his terrible predicament. So a holistic approachtowards treatment and rehabilitation was adopted.

More recently Leprosy has been reported to have been eliminated as a public health threat but with India’s sheer magnitude the numbers of leprosyaected still continue to be big.

Leprosy is an age old prejudice that needs to be adequately addressed. This book encapsulates the work done by TLMTI in the last 140 years in addressingthis issue. While it is encouraging to see the many smiling faces that we have been able to reach out and perhaps lend a helping hand to bring themout of oblivion... there is still a long journey to be traversed. With our Lord’s help we shall labour on till the scourge of leprosy is completely eradicated.

Mr. George KoshiChairman, TLM Trust India Board





Introduction

The Leprosy Mission Trust India had its small beginnings in India in the year 1874 and this year, 2014, marks 140 years of our rich history and developmentas an organization working with and for people aected by leprosy and their communities. As the largest NGO in India working in the eld of Leprosy, weaddress Health, Education, Sustainable livelihoods, Community development, Advocacy and Research through our various programmemes and institutions(14 Hospitals, 6 Vocational Education Institutes, a Media Centre and Research Laboratory) in 9 states of the country (Chhattisgarh, Maharashtra, UttarPradesh, West Bengal, Delhi, Tamil Nadu, Bihar, Andhra Pradesh and Uttarakhand). We support the National Leprosy Eradication Programmeme in 4 of

these states. We work in partnership with the Government of India, national and international NGOs and local partners to bring to reality our vision ofpeople aected by leprosy living with dignity in transformed communities that have overcome leprosy.

It is my great pleasure and privilege to present this compendium that celebrates 140 years of our work in India through 140 stories that give the readerglimpses of our history, our work and the people who have been touched by the Mission and also to appreciate the many people who made thisdocumentation possible.

Dr. Sunil AnandDirector, TLM Trust India



Afroz loves doing embroidery work;a skill she hopes will bring back colours in her life and to many others.



Twenty-four year old Afroz Janana lives in Aruwaw village (District Faizabad) with her mother and 3 siblings. When she was eleven, her father died. It wasquite dicult for her mother to take care of the family. Initially, she took up few odd jobs and then started making beedi at home.

There are more than 10,000 beedi workers in Faizabad district where 95 percent women are beedi rollers and over 2,500 children are engaged in thebeedi industry. Later when the children grow up, they too get engaged in the trade.

Afroz was unlike her siblings, partially due to the fact that she was born with clubbed feet, a birth defect that twisted the feet inwards and downwards.She was always a conscientious child and wanted to be self-dependent.

In 2008, under one of TLMTI’s livelihood programmes, Afroz received hand-embroidery training from Wellesley Bailey Vocational Training Centre (VTC) atFaizabad. After the training, she worked for a year. The programme could not sustain itself and the work stopped, so did her earnings. Afroz was quitedisappointed but had no other option except beedi making.

On an average, the family makes 4 packets of beedi (20 beedis in each packet) earning Rs. 60 per day.

Her elder sister is married and her brother is taking training in a biscuit factory. He is a Class 7 dropout and not earning as yet. Since her young sister isstill studying in inter college, Afroz and her mother are the sole breadwinners of the family.

In 2014, TLMTI approached Afroz to engage her in a new Community Based Vocational Education Training livelihood initiative and oered her a job of atrainer. This time, TLMTI aimed to make it sustainable by setting up a Chikan embroidery unit that linked them to the local markets, Lucknow being thenearest always has huge demand for Chikan embroidery workers.

It was a challenge for Afroz to nd likeminded people who wanted to learn and work with her. The course started in July 2014 and at present there are12 girls and women learning Chikan embroidery. Two of her students come from leprosy-aected families. Afroz is hopeful that within 3-6 months,

her students will learn embroidery and they will be ready to take orders. As a trainer, Afroz is earning a salary of Rs. 5,000 per month. Afroz Janana is agraduate and wants to pursue Masters in future.

1. Colour of Empowerment

“We all are very excited by TLMTI’s new initiative. We want the

project to be sustainable so that all of us are benefited,”

says Afroz.



2. A man of little

means,

Satyanarayan Thakur and his

family have been ghting for theirbasic right to life since the lastthree decades. After a diagnosisin 1983 in Gorakhpur conrmingLeprosy, the Thakur family lefttheir farming to move to the Villageof Hope Colony in Delhi. Theirmainstay became begging andends became dicult to meet. Instepped the The Leprosy MissionTrust India Shahdara Hospital.Handcrafted walking shoes weredeveloped for Satyanarayan tohelp protect his soles from cutsthat may develop into ulcers if notcared for properly at the hugelysubsidized cost of Rs. 250. Also atricycle was made available to himthereby increasing his mobility,ensuring condence and openingup possibilities galore. Now

he can wish for his children tomove out into the world. TLMTI isnetworking through NGOs to helpthe Thakur family access fundingin order to improve their standardof living. Now he is a man ofbig dreams.



3.Catalyst for Change

Pooja Devi, takes her duty as the president of theCBO in Brahma Vihar Leprosy Colony in Bilaspurseriously. So far, through her eorts, 20 peoplehave got benets of Antyodaya Anna Yojana (AAY)scheme (a government-sponsored food securityscheme), 15 people have got old-age pension,and 30 people have got smart cards for accessinghealth benets.

4.Sreedhar Ratre

“Earlier I didn’t know about my rights andentitlements as a person aected by leprosy.Because of this, others exploited me. But afterhaving received training about my rights fromCALL (Challenging Anti-leprosy Legislation) Projectof TLMTI, I’m aware of my rights and entitlements.

Now I know whom to approach to access my rightsand I’m accessing them too.”

Mr Sreedhar Ratre, leader of the advocacy

group facilitated by CALL Project in Brahma

Vihar Kusht Ashram, Bilaspur, Chhattisgarh.

5.“But forTLMTI, I would

have beenbegging for foodon the streets of

Sultanpur”

Soa Bano hails from Murthi Purua village,in Sultanpur district, Uttar Pradesh.Diagnosed at 20 years with leprosy,

she underwent extensive treatment forcomplicated ulcer, reconstructive surgeryfor correcting foot drop and clawed hand.Thereafter she received tailoring trainingat TLMTI’s Wellesley Bailey VocationalTraining Centre, in Faizabad and under itsplacement programmeme, arranged for heremployment in a garment export house inChennai. She presently earns Rs 8,000 everymonth.



“Few patients (later) share their experience of teaching their children in the village, readingthe signboards while travelling, writing their names in English and keeping

an account of their money. It is then I feel that I am rewarded.”– Saira Bano, Volunteer teacher at TLMTI Hospital Naini



6. Reading the Signboards

Thirty-year old Saira Bano, has been associated with The Leprosy Mission Trust India (TLMTI) Community Hospital at Naini for the past four years. Earlier someof the sta members in the hospital took sewing classes from her. In 2011, she rst visited TLMTI Naini to accompany her cousin for child delivery. Little didshe know that it would change the course of her life when she was requested by the hospital sta to teach the patients Hindi, English and Maths.

Initially, she began with the children in the ward and gradually started teaching other patients. Given the environment, her rst few visits were full of fear andanxiety. She had taught before but never in a hospital surrounded by people with deformities. Most of the patients had suered rejection, abuse, loneliness,isolation and broken relationships - the stigma of being aected by leprosy.

Few brief and interactive sessions with James, TLMTI Community Programme Facilitator answered all her queries and put her at ease. She internalized the factthat once treated with Multi Drug Therapy (MDT), the disease is no longer communicable.

Saira volunteers 4 hours every day, six days a week in the hospital at Naini, teaching the patients and sometimes their children too. She visits the wards oneby one and teaches Hindi, English, Math and Drawing to those who are interested in learning from her. She has developed a course plan and it takes at least3 months for her students to read the newspaper. TLMTI Naini provides free stationery and books to the patients in the hospital.

‘She comes on in time and works hard with all of us’, ‘ says Zainudeen, a patient from the Male Ulcer Ward. Forty-year old Joginder is a class 2 dropout andwas inspired to see many others studying around him. He has started his studies again and his time ies in the hospital.

There are challenging times when patients are disheartened by their illness and do not want to learn. A lot of patients with clawed ngers nd it dicult towrite initially. Saira, with her patience and persistence has been able to motivate them to continue their studies and ignore the limitations.

TLMTI Community Hospital at Naini is among the larger leprosy referral hospitals in Uttar Pradesh with over 2,600 new leprosy registrations each year. Most of

the patients have low self esteem due to the stigma associated with leprosy. Saira’s eorts have given them a sense of self worth and a hope to look forwardin their lives.

‘I was surprised that so many people have never gone to school. Patients mainly from the rural areas have never seen a school in their life. Few patients, whovisit the hospital the second time always come and greet me. They share their experience of teaching their children, reading the signboards while traveling,writing their names in English and keeping an account of their money. It is then I feel that I am rewarded, ‘says Saira.



7. Many patients become family here. The treatment often stretches into years and many do nothave homes or jobs to return to. Putting a smile back on disheartened faces... thats also our job!



8. We do not have addresses, identity cards, voter rights, or any civic amenities. The LeprosyMission Trust India is all we have. It helps give us identity to be acknowledged, voice to be heard andrights to be demanded.



“My handicap emerged as a new purpose in life; to ght for my rightsand for many others who have been deprived of it.”

– Lalji Sah, Ulcer ward patient and a social worker, TLMTI Naini



9. New purpose of life

Lalji Sah, 55 years old, is a social worker and works for the rights of handicapped and marginalised community. He is the president of local wing of RashtriyaViklang Party (National Handicapped Party) Buxar district, Bihar.

At the age of fteen, Lalji Sah accidently stepped on a bunch of bamboo sticks while he was walking bare feet. For days, he was not aware that it had developedinto a wound, as he did not feel the pain. The wound became serious and he had to drop out of his school because he could no longer walk properly. He went toseveral doctors both private and government spending a lot of money but his foot condition kept on deteriorating. In 1985, seven years later he was diagnosedwith leprosy at BHU (Banaras Hindu University), Varanasi and referred to TLMTI hospital at Naini. It was already late and his right leg had to be amputated belowknee and he was given prosthesis for support.

He was already married to Tara Devi at that time. Lalji Sah was lucky to get support from his family and relatives with the exception of his in-laws. Tara Devi’sparents persuaded her to separate from her husband and get married again. She simply refused and since then has not gone to her parent’s house who livenearby in the same village.

With a prosthetic limb, Lalji Sah could not do much as an agricultural labour. He did not own any land. For years Lalj i has worked as a care taker in the elds andhis wife worked as an agricultural labour. With meagre earning it was dicult for him to support his children’s education. He regrets it till date.

Three years ago, Lalji Sah joined Rashtriya Viklang Party and became a member. He ghts for the right and entitlements of handicapped and marginalisedcommunity at a district level. There are 1,500 members in the party from 10 villages; mainly elderly, widows, handicapped and eunuchs. Widow pension,entitlements and facilities for handicapped people, old age pension are some of the issues that Lalji Shah works for. He has participated in several rallies/protests and even gone to the Block Development Ocer (BDO) and District Collector with his demands. Now at fty-ve, he has visited TLMTI hospital at Nainiagain for ulcer in his left foot. His four children have grown up and are now well settled. Financially they are much secure and living conditions have immenselyimproved.

“My handicap emerged as a new purpose in life; to ght for my rights and for many others who have been deprived of it “. Lalji Sah continues to mobilize people

locally and spread awareness on leprosy, refer leprosy patients to TLMTI hospital, Naini from remote villages and ght for their rights and entitlements.

“Today we have a wheel chair and a separate bench for physically challenged people at

Buxar Railway Station. The Station Master arranges a coolie if they see a handicap person,”

proudly says Lalji Sah.



The amounts borrowed through the Self Help Groups are small, but they can makea world of difference, especially to a family who lives so close to the poverty line.



10. Yes, We Can!!

In a remote village in the Faizabad district of India, the end of every month has 12 women eagerly looking forward to their meeting. Each of them brings Rs. 25with them, and this money is collected and deposited into the group’s bank account. Twenty ve rupees is a lot of money for these women, who have battledpoverty, stigma and disadvantage. Six of the women have either had leprosy themselves, or one of their parents had leprosy. The other group members aredesperately poor, living below the poverty line or coping with physical disability.

TLMTI gave the group a start-up loan of Rs.15,000; and the State Bank of India now matches the amount of their deposit four times over. A group memberwho needs to borrow the money repays the loan at 4% interest. The group members decide amongst themselves who needs the money and approves eachloan. The amounts borrowed seem small, but it can make a world of dierence, especially to a family who lives so close to the poverty line.

Moreover there are greater consequential benets of such groups. There is friendship and support for the lonely ones. There is acceptance from the widercommunity and a breaking down of stigma and community prejudice. And there is growth in condence and self-esteem as these women take hold of theirown destinies and nd space to make and voice their choices.

This story is not a solitary one but replicated by TLMTI in various villages dotting the remote interiors of India. TLMTI helps communities with socio-economicrehabilitation through SHGs (Self Help Groups), helping more than 3,700 households develop self reliance and scale up their livelihood initiatives.



11. Housewife toBread-Earner

Asha with a loan of Rs. 2,000 from the SHG tteda hand pump inside her house thereby drasticallysaving the time taken to walk miles every day to getwater for washing, cooking and cleaning. Now sheinvests the time saved in earning a supplementaryincome for her family.

12. Channelizing

Efficiency

Kismata borrowed Rs.15,000 and boughta machine to cut grass and leaves that shepreviously spent hours cutting with her hands.The bualo now has more food and Kismatahas more time and energy for other incomegenerating work to support her family.

13. Startup

Investments

Vedprakash, the only male member, used astartup loan of 10,000 rupees to establish agrocery and clothes outlet. He’s turned theshop into a success and is on the road tobecoming self sucient. One day he promisesto return the faith reposed in him by the SHGmembers.

14. Hansi Masih

She was 50 years old when The Leprosy Mission Trust India Hospital at Almora, Uttarakhand admitted her to the Snehalaya after more than a decade of battlingLeprosy, Paralysis and Tuberculosis. In the Snehalaya, the uneducated Hansi made friends with other patients and spent her time learning to read and writefrom them. In the year 1999, after having mastered her new skills, she expressed a desire to translate the Bible into the local Kumaoni language as there wasn’tany available. She was encouraged by the pastor and other local preachers and they helped her by providing appropriate reference books for her. After arigorous two years of concentrated work, Hansi was able to nish her translations. The Kumaoni Literature Society of Almora showed interest in her work andasked their proof reader for copy editing Hansi’s work. The Bible Society of India lent their support to this one woman’s initiative and about 2,000 copies of thismini-Bible (Selected works from Bible and stories) were printed. A big opening ceremony took place at the The Leprosy Mission Trust India Hospital at Almoraand the copies were distributed in the various local churches.This brave lady made a valiant eort to put the ghosts of her past behind and work for the benetof the people of her region. She thanks the Almighty for his grace and TLMTI for their support.



15. Ambassador

for Change

Abandoned due to leprosy at the young age of 23

years with two toddlers in her arms, Denkana Seethatoday has come a long way. Today she runs a smalltailoring unit of her own and holds sewing classes

for about ten students. All are girls between the

ages of fteen and twenty years. Seetha nurtures

aspirations to grow into a ready-made garments

supplier for big showrooms and to someday

employ some of her students. Much of this was

possible due to her early diagnosis and treatment at

TLMTI Hospital at Salur and subsequent training at

Vizianagaram VTC. She owns two machines–one for

general sewing / tailoring, the other for embroidery,both from loans by TLMTI. The training did not justchange her life but of so many others through her.She is TLMTI’s ambassador for change.

16. HeartfeltThank-you!

Pappathiammal’s dream was to have a properhouse rather than a shack which ooded in themonsoons. Through the support of TLMTI thisdream turned into a reality and last year the familymoved into their new home with a job for herdaughter, which puts food on the table. Beforeevery meal they pray and say a thank-you to theTLMTI - supporters in the UK who made her dreampossible.

17. Setting

Examples

A student at the Vocational Training Centre (VTC)

run by TLMTI in Faizabad, 22 year-old Neeraj hadto leave his job at a gas agency in Lucknow afterbeing diagnosed with Leprosy. After undergoingtreatment he was connected with the VTC wherehe joined the tailoring unit. He was trained indesigning, cutting, sewing, and embroidery. Hewas also given the basic skills of running his ownbusiness with account keeping and customerrelations. “This disease has changed my life andfate for good. Though I am still on medication,I am happy and sure that after completing mytraining I will be able to run my own work and

provide livelihood for others by giving them workin my shop. I want to be a successful tailor andbe an example for others as a leprosy aectedperson.”



18. The TLMTI

EDGE

Self stigma comes to haunt the leprosy aectedand impairs their power to reciprocate love.

With about 97% of the inpatients atTLMTI hospitals battling leprosy relatedcomplications, it becomes important to crossthis hurdle of self stigma. The hospital sta needs to make sure that leprosy patients notonly feel welcome but also accepted. Thismakes a big dierence in the attitude of thepatients towards themselves and aides in

better recovery.

At every level; whether it is the sweeper orthe warden, the nurse or the physiotherapist,they treat the patients with utmost respectand love. They touch them and talk to them.A gentle touch and a caring word goes a longway in instilling back some self condence.

A leprosy aected person comes to TLMTIafter being often abandoned from his homeand society. The hospitals become a second

home and the sta a second family. TheTLMTI edge lies in ensuring that this newfamily is able to help the person becomewhole and accepted again. The nurses arealways around serving with patience and care.Working tirelessly towards a society free fromthe stigma associated with leprosy starts atTLMTI’s own institutions.



19. Back to

school!

“I was aected with Polio since I was akid. Both my lower limbs were aected.When I was younger, my parents used tolift me and take me to school. Howeveras I grew older, I stopped going to schoolbecause it was dicult for my parents tocarry me to school every day and it wasembarrassing for me as well. Throughlocal networking my parents got to knowabout the local advocacy federationfacilitated by Disability Rights through

NGO networking, rights based projectin the district of Thiruvannamali (TamilNadu) and we became members of thatfederation. Since then, not only have Ireceived a mobility aid which enables meto go to school again but it has broughtmuch dignity in my life. As members ofthis advocacy federation, we are nowaware of our rights and also have beenable to access various benets for peoplewith disabilities.”

– Vallarasu, Thiruvannamali (Tamil Nadu)



20. LEPROSY TOOK MY EYES, my NOSE

“Because of severe deformities due to Leprosy I had to leave my family and FRIENDS behind in Nepal”, says 45 years old DhaniRam for whom the TLMTI’s Snehalaya at Faizabad. Snehalaya has been a home since 1984. “It totally shattered my world andall the hopes for my future were in ruins. The love and care I received from the doctors, nurses and other sta here at theCare home have helped me build up my broken self-esteem.” Although completely blind, Dhani remains independent and,sometimes with a little help, is perfectly able to take care of himself. “I’ve learnt to survive,” he says.



21. TLMTI’s fourteen Tertiary Leprosy Referral Hospitals aim at early diagnosesand management of leprosy and its complications through specialized care, functioningeectively within the referral system of the general health care services, so that peoplemay experience healing and continue to lead normal and productive lives.



Rizwana has faced hardships in her life but she is hopeful and looking forward to the daywhen her sister will lend a helping hand to share her responsibilities.



22. Resilience and Rizwana

Rizwana Khatoon is the sole earning member in her family. She matured at an early age since her mother expired. Her father took care of the family doing odd jobs. Twenty-two year old Rizwana dropped out after completing Class 8 because her father Ikramul Haq could no longer pay for her education.

During that time, Ikramul Haq contracted leprosy and underwent treatment. Rizwana is the fourth child among ve sisters. Her three elder sisters are nowmarried and she lives with her father and younger sister Farzana in Badegaon village (District Faizabad).

Rizwana has been stitching ever since she dropped schooling. She would get orders for stitching underwear and earned on an average Rs 70-100 per day.

In 2011, TLMTI’s rst batch of tailoring started under Community Based Vocational Education Training (CBVET) programme in Badegaon. Fifteen studentsattended the course, Rizwana being one of them. She learnt tailoring for 3 months paying a total fee of Rs 75. (CBVET programme oers concessions to thosecoming from leprosy background.).

Rizwana now stitches salwar kameez (Indian traditional dress for women) and is able to earn an extra income of Rs 250-300 per day. Although her earnings haveincreased three times, she is unable to save much.

Her younger sister Farzana is getting nancial assistance under TLMTI’s CTY scheme since Class 3 (CTY project works with families aected by leprosy to addressthe educational needs of children help them access mainstream education). Wellesley Bailey Vocational Training Centre (VTC) at Faizabad is planning to provideher vocational training once she nishes high school next year. Rizwana has faced hardships in her life but she is hopeful and looking forward to the day when

her sister will lend a helping hand to share her responsibilities.

Rizwana is the fourth child among five sisters. She has been stitching ever

since she dropped out of school.



“I do not miss anyone from home. My brother comes and sees me barely for ve minutes.The hospital is my only family and they have supported me through thick and thin.”

- Baiju Yadav, TLMTI Snehalaya, Faizabad



23. No Looking Back…

Originally from Atrolia Baazar village, District Azamgarh (Uttar Pradesh), fty-year-old Baiju, now lives in TLMTI’s Snehalaya at Faizabad. Baiju used to sell fruitsand vegetables in his village until he was diagnosed with ulcer in his right foot thirteen years ago. Three-years later he was advised to go to Faizabad and was

diagnosed with leprosy. A widower with no children and family, Baiju never returned home.

The superintendent at Faizabad, encouraged him to learn weaving at the Vocational Training Centre (VTC). He also taught weaving for few years at the VTC.According to Baiju, ‘Weaving is an intricate art form that requires immense patience. For example, seven hundred and fty threads are required to weave thirty-six inch fabric that is used for making handbags. The students nd it dicult and do not enroll for the course.’ He silently spends his day on the handloomworking from 9 to 5 and takes an hour break only during lunchtime. He is able to weave fabric for three bags in a day.

At night he works as a night guard near the VTC oce. Baiju earns around four hundred rupees a month that he feels is sucient to cater to his needs. “I donot miss anyone from home. My brother comes and sees me barely for ve minutes. Hospital is my only family and they have supported me through thick andthin,” says Baiju.

Weaving is an intricate art form that requires immense patience. Seven hundred and fifty

threads are required to weave a thirty-six inch fabric... Baiju silently spends entire day working

his threads on the handloom.



“The people, who come to us, come from the leprosy colonies. They are in rags . . . their parents havebeen living on charity . . . and then the transformation happens. At the end of the year when wehave our farewell, they are much stronger and look so condent. The transformation is amazing!! ”

- Shyla Francis, Principal Wellesley Bailey Vocational Training Centre (VTC) at Faizabad



24. Shaping Adolescence... Transforming Lives!

Adolescence is a period of signicant physical and emotional changes and the manifestation of leprosy during this period adds to that stress, especially withgirls. Their marriage and acceptance in the society is always a dilemma.

Savitri is just 18 and comes from a poor family, living in the slums of Holambikalan, Metro Vihar, Delhi. She is the second child among two brothers and foursisters. Savitri’s mother passed away when she was four and a half year old. Her youngest brother was 6 months old at that time. Her father worked as acontractor and had to leave his job to take care of his family. He started working part-time as a rickshaw puller. Few years later, he had a second marriage.

In 2009, Savitri developed wounds in her left toe and was treated for 6 months. However, her left foot did not heal. In 2010, she was admitted to TLMTI hospital,

Naini for an operation. One of her ngers was amputated. Physical deformity was a setback for Savitri. She avoided meeting people and went into self-pity. Herfamily motivated her to continue her studies and she completed Class 10 in 2012 through distance learning. Savitri has faced dicult times since her mother’sdeath. Her father no longer works due to poor health and her brother shoulders the responsibility of the family.

In 2013, Savitri enrolled for Wellesley Bailey Vocational Training Centre (VTC), Faizabad to pursue Computer Course (COPA). VTC Faizabad oered her theenvironment to think beyond the dicult times, learn and look forward in life. It’s been a year and she has completely moved out of her state of self-pity. She issocial, diligent with her training, wants to start earning and share her brother’s responsibilities.

Wellesley Bailey Vocational Training Centre (VTC), Faizabad was set up in 2002 to provide technical and life skills to adolescents from leprosy and disabilitybackgrounds. VTC is now taking regular students too, so that the leprosy aected students are familiar with everyday life when they go out to work. In theprocess, the students are also oriented on the myths surrounding the disease and the institution’s work.

For years the VTC has served both as a friend and mentor for adolescents, particularly girls.





25. If we can remove stigma from the mind of every child... then tomorrow we will be a nation free from stigma wherepeople are not denied their rights to life and dignity.



“I inform women on their rights. Women have the right to come and go, eat, drink, wearclothes of their choice, talk to every one, to sit, read and write; boys and girls have equal rights

on it.” - Kiran Devi, Volunteer, Gudian Purva Village (Fatehpur Block)



26. Equalizer of our Times

Kiran Devi is a local volunteer in Gudian Purva village. She has been associated with WEP Project (Women’s Empowerment Project that seeks to facilitate thesocio-economic and political empowerment of rural women) since it started in 2009. Kiran, twenty-eight, is a dropout after nishing high school. Like otherwomen in the village, she got married and was conned to the home, cooking and taking care of the family.

Kiran Devi stepped out of the house for rst time in 2009, to appear for an interview for the post of volunteer for TLMTI’s Women Empower Project in Barabanki.Her husband supported her decision and accompanied her to TLMTI Barabanki. However, her mother-in-law was quite upset and disowned her. “I appeared forthe interview and cooked food in a separate kitchen that night”, recalled Kiran Devi. Inspite of that, Kiran decided to take up ‘volunteer’ position.

TLMTI’s Women Empowerment Project (WEP) is running in 20 villages of Fatehpur Block. In each village, women volunteer plays an important role in creatingawareness on several issues like health and hygiene, rights and entitlements of women, accessing government schemes, vaccinations, ration card, givinginformation to pregnant women, awareness on leprosy disease (symptoms and myths), identifying new leprosy cases and leprosy aected families, providing

information on TLMTI’s new livelihood initiatives and vocational training programmes. She is the integral link to facilitate the programme smoothly.

Since 2009, Kiran has been able to identify 4 new leprosy cases and they have been treated at the Community Health Centre, Fatehpur. Two new members fromleprosy-aected families were sent to VTC Faizabad for vocational training in 2012-13. “I inform women on their rights. Women have the right to come and go,eat, drink, wear clothes of their choice, talk to every one, to sit, read and write; boys and girls have equal rights on it”, says Kiran Devi..

The nancial condition of her family has improved now. Kiran Devi is also engaged in envelope making business and earns an income of Rs. 1000 per month.She is nancially supporting her husband Ram Kishan’s education, who will be appearing for Inter School Exams this year.

“I want to do something for women in the village. Those living in mud houses should get pucca ghar (concrete house) under Government Scheme. I want allwomen to be independent like me.”

“I want to do something for women in the village. Those living in mud houses should get pucca ghar underGovernment Scheme. I want all women to be independent like me.”



“I always longed for a home and today I have it. I yearned for affection and today I got itall from doctors, nurses, staff and patients. I am happy and contented here.”

– Uma Devi, TLMTI Snehalaya, Naini



27. Uma’s Second Life

Uma Devi got married at an early age in a village of Unnao district, Uttar Pradesh. Four years after her marriage, she developed symptoms of leprosy. Initially,there was numbness in the foot and toes. She was taken to a doctor and was diagnosed with leprosy. Uma Devi took medicine for one year but it was alreadylate and the disease had aggravated. She developed clawed toes and hands.

Uma devi’s mother-in-law did not want her to stay with them and would often lie and complain about her. One day, she was beaten and thrown out of thehouse. She lived in her mother’s house for 2-3 months but had to leave because of ill behavior of her sister-in-law. He mother then took her to Varanasi. “Weused to get food from the Ashram in Varanasi and get money and clothing from foreigners. We lived on the ghats and at night we could not sleep and were

scared. Slowly we got used to it.”

In 2001, she was admitted to TLMTI Community Hospital, Naini due to a worsened physical condition. Uma Devi was treated for ulcer and she returned toVaranasi and lived there for twenty years.

Uma Devi had reached a stage in her life when she no longer cared. In 2010, she was admitted by the superintendent of TLMTI Naini into the Snehalaya withthirteen other residents.

Today Uma Devi is happy and contented with her life. TLMTI has given her a second chance to live her life with grace and dignity.

Today Uma Devi is happy and contented with her life. TLMTI has given her asecond chance to live her life with grace and dignity.



28. “It FeelsNice Having My

Own Rickshaw”Dipnarayan has achieved nancial security withTLMTI’s Community Based Rehabilitation Project.Working as a labourer for the Food Corporation ofIndia in Assam, Dipnarayan had started to noticethe telltale signs of Leposy on his foot. He becameweak, lost sensation in his foot and began dragging italong the ground. “The disease made me weak and Icouldn’t carry the boxes on my head”, he says

A traditional healer’s medicine further escalated hisproblems, burning the skin on his foot. Eventuallyhe made the decision to return to his home town ofMuzaarpur and visit TLMTI’s Muzaarpur Hospitalfor treatment. ‘Some village people told me aboutthe hospital. I got shoes and medicine; my woundhealed,’ he explains.

Having lost his earlier job, he took to pulling a rickshaw,but he had to pay money to the rickshaw owners soat the end of the day he wouldn’t have much left tobuy food for his family. TLMTI’s Community Based

Rehabilitation Project oered Dipnarayan a loan tobuy his own rickshaw. TLMTI’s Community BasedRehabilitation Projects help people improve theireconomic status through initiatives like savingsgroups, vocational training, or by providing smallloans. Today, Dipnarayan has more independence.“Now, I don’t need to pay out because it’s my ownrickshaw. It feels nice having my own rickshaw,” hesays happily.

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29. Puran Massi

He is a poor farmer from the village of Khajurawarin Faizabad. He was trained to be a tailor at TLMTI’sVTC at Faizabad. He supported his wife and vechildren by running a small tailoring business froma rented shop. This did not prove to be sucientto meet the expenses of the large family and thechildren had to discontinue their education.

In stepped the Community Rehabilitation Project.Puran Massi was provided two machines: a sewingmachine and an interlock machine. Two of hischildren who were of school going age werehelped with admissions and fees. Now the family isachieving self suciency and living a life of dignity.

30. Kisan Chawan

He underwent a year long treatment for MB forLeprosy in 2001. After being cured, he was givena loan of around Rs. 10,000 to purchase goodsand set up a general merchant shop of his own.The village had only three shops catering to its bigpopulation and setting up a shop proved to be agood investment. Initially, Chawan used to earnabout Rs. 30 per day but now with his new shophe earns around Rs. 70 per day. The work is lessstressful and gives him a chance to socially mixwith the community. Initially there had been astrong stigma in the village over Leprosy but dueto the consistency and hard work of the TLMTIsta the general understanding about the diseasehas increased. Chawan can now live a life of socialinclusion.

31. Ratni Devi

Her smile is genuinely huge each time. She wasonly 15 when both her legs were amputatedbecause infections caused from unhealing footulcers had penetrated to her bones. RecentlyTLMTI intervened by helping Ratni network withRotary Vikland in order to receive two prostheticlegs free of charge. TLMTI has also recentlyhelped repair damages to the prosthetic limbs.Now she can move about more easily and isless dependent on a tricycle to get around. Thisnew independence gives her every reason tobe all smiles.



32. The patients usually do not know much about leprosy... the stigma against it stops ow ofinformation and awareness.



33. ”Who knew I could one day create magic with my hands... these very handsthat had tied me down for so many years. Thank you TLMTI!”



34. “Disability is my ability”

Says Gajanan Hekade. According to him The Leprosy Mission Trust India made him realize that his disability is his strength. Living with Polio since earlychildhood, Gajanam had a number of degrees under his belt, a Diploma in Education and a Bachelors through Distance Education. Despite being welleducated, he found physical barriers in nding a job. He got in touch with TLMTI Hospital at Kothara and was selected to be a trainer. Today he works across10 villages with 111 people. He has motivated many people living with disabilities to gain condence and avail Government Schemes, form SHG groups and

helped in advocacy measures. He is a well known face of his district and a proud man.



35. Gokulan’s

Independence

28 years old Gokulan’s legs are paralysedand the muscles wasted making him unableto walk. He is the president of the self-help group (SHG) that was set up by TLMTIvolunteers in the village. Through this SHGhe has been able to receive his disabilitypension from the Government and also aloan to buy his own cow.

Gokulan’s independence is not mired byhis self-consciousness about his disability.He sells milk from his cow and also teachesmathematics at the village night school.TLMTI has provided him with a tricycle,which gives him greater mobility, freedom,independence and self reliance. He dreamsof a future where he would get married andstart up a successful milk diary business withhis friends from the SHG.



The Mitanins are a network of 60,000 women community volunteers formed in 2002 toact as a link between the Government Health Services and the communities.



36. ‘Sukh me sabiya, dukh me Mitanin’

‘Mitanin’ in Chhattisgarhi means friend – a female friend. There is a custom in Chhattisgarh that a girl of one family is bonded to a girl of another family through asimple ritualistic ceremony, and from that time onwards they become Mitanins to each other. According to the custom, any girl can always count on her Mitaninin times of need. ‘Sukh me sabiya, dukh me Mitanin’ (during happy times everyone supports but during dicult times only Mitanin).

After the state of Chhattisgarh was formed in 2000, a need was felt for someone to act as a link between the Government Health Services and the communities,someone who could counsel the villagers on medical resources available. The newly formed Government consulted various civil society representatives, and as

a result, with the active participation of civil society and with the nancial support of the European Union, a network of 60,000 women community volunteerswas formed in 2002, and they were called ‘Mitanins’.

In Chhattisgarh’s health system, Mitanins are Community Health Workers (CHWs). Their roles include providing elementary health education; providing rst aidhelp and supplying over-the-counter drugs; treating minor ailments; giving referral advice, wherever necessary; and they play a crucial role in the community bysetting up women’s committees and helping the Panchayats in health initiatives. All they have is just a bag of basic drugs, a little training, oodles of enthusiasm,and empathy, and by these they have established themselves as the barefoot doctors of Chhattisgarh, and work in all the rural habitations. The MitaninProgrammeme is run by an autonomous State Health Resource Centre, which is parallel to the State Health Department.

Mitanins don’t get salaries. They are given cash incentives for specic tasks. For example, they are paid Rs. 300 for every Paucibacillary Leprosy case they referand Rs. 500 for every Multibacillary Leprosy case they refer to the Primary Health Centre.

Since the colour ‘Pink’ stands for unconditional love, compassion and nurturing, pink colour was selected as the colour of their uniform.

According to the customs in Chhattisgarh, any girl can always count on her‘Mitanin’ (Female friend) in times of need.



Para Olympic Association in Chennai is mentoring the coaching and development ofathletes with physical impairments through the PARTI project.



37. India’s First Wheelchair Basketball Team

Wheelchair basketball was originally developed by World War II veterans in the USA in 1945. Since then, the sport has grown worldwide and was introducedon the global stage at the Rome 1960 Paralympic Games, and today it is practiced in nearly 100 countries. It is designed for athletes who have a physicalimpairment that prevents running, jumping and pivoting.

Since there is no national team in India, TLMTI is developing one through its PARTI project (Partnerships, Advocacy, Research & Training towards Inclusion). Thisproject is not only helping in identifying the special athletes but also coaching athletes to be a part of the national team.

This sport helps improve the agility and mobility of the athletes, creating social inclusion, a great sense of comradeship and providing a great platform toshowcase the talent of such special athletes.

38. National Team for Boccia

TLMTI’s PARTI project in Tiruvannamalai is working on developing a national team for playing Boccia (pronounced ‘Bot-cha’). This is a Paralympic sport whichwas introduced in 1984. It has no Olympic counterpart. It is designed specically for athletes with a disability aecting locomotor function, where they throw,kick or use a ramp to propel a ball onto the court with the aim of getting closest to a ‘jack’ ball.

Boccia has been approved by the Para Olympic Committee in India as-well. It helps in improving the endurance, coordination concentration and teamwork. It is

played indoors on a court similar in size to a badminton court.

Para Olympic Association in Chennai is mentoring the coaching and development of such athletes by PARTI project. Mrs. Madhvi, who is a gold medalist inswimming championship in Para Olympics and also a champion who has overcome paraplegia, is promoting disability sports among many other innovativeideas for persons with disabilities and guiding the project on how to develop the national team.

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39. Q & A with Karrothu

Q: What do you think you have gained from being here?A: Stitching skills, making friends, respecting elders.

Q: What dierence has being here made?A: If I were not here, I would be at home, sitting idle, with no work due to social stigma. Here

I get a chance to learn and discover.

Q: What are your dreams about the future?A: I am not interested in getting married just yet. First I would like to develop my skills and

then get a job. Preferably someplace I can go and travel.

- Karrothu, 16 years old. Her mother had leprosy and was treated at the hospital that used tobe on the VTC Vizianagaram campus.

40. Anju Chaurasia

Anju Chaurasia was born and brought up in a middle class family at Ballia in Uttar Pradesh.She developed symptoms of leprosy at the age of 14, while studying in class 9. This provedto be a big shock to the family and left the girl upset. Timely medical care and full familysupport helped Anju continue her education. But with time she developed claw hands. Shewas referred to The Leprosy Mission Hospital at Naini for reconstructive hand surgery. Afterthe surgery there was a major improvement in the strength of her hand because of eectivephysiotherapy.

Thereafter, Anju joined the TLMTI Vocational Training centre at Nasik for Computer course.After successful completion of the course she took up the job of a Computer instructorat TLMTI VTC Faizabad. Her interest in further studies was supported by TLMTI and shewent on to complete her graduation and Masters in Business Administration in Finance andHuman Resource.

Today Anju has a successful career as an Accounts Manager at TLMTI Hospital in Barabanki.She is also happily married with a daughter.. Her husband works for the Indian Railways. Shehas left the disappointments of the past behind her and is hopeful of a bright future.



41. Adivashi Weaving Cooperation of Durg

Fed up with the bad working conditions and insucient work opportunities of being a labourer, Lubhan and 58 other men joined the Jai Budha Dev Adivashi

Weaving Cooperation. With 25 looms set up in the village by the Handloom Cooperative Society, Lubhan who used to struggle with a spade has learned to workskillfully with threads and looms.

Lubhan and his clansmen are descendants of the Gond and Halva tribes – some of whom were traditionally weavers. In 2007, they formed a handloom societywith 21 members that became defunct due to lack of cooperation and unity. TLMTI’s SSHG Project helped them form Self Help Groups and revive the societywith even more members – ve of whom have a background of leprosy and other physical challenges.

With a preliminary loan of 1 Lakh rupees, the society set up handlooms and shifted to making plain white cloth from the traditional sari-making as it has a biggermarket and demand. Raw materials are provided by the state level apex society that also buys back the nished product. Volunteers look after the training andprogress of 14 SHGs in the area. The society is even looking to expand their work space.

With better working hours and regular work, the economic condition of the families have shown vast improvement with incomes over 5 times as much as it

used to be. Even their children are able to complete their education. Lubhan weaves over 20 metres of cloth everyday and like the other weavers leads a muchmore self sucient life.



“We did not have regular work earlier and had to look for odd jobs. Now we havea regular income... We are better respected in the community now; others consult

us for opinions and suggestions”.



42. Bead Workers of Pennadam

About 15 kms from Cuddalore lies the Pennadam village where the migratory community of Narikuravar have settled. This community is famous for a uniquecraft of bead making. During marriage ceremonies the special black (small) bead are worn to mark the event. Discussions with the community revealed thatforming all the bead workers into a producers’ cooperative/associations/company would benet the entire community as well as provide adequate incometo the artisans who are “dierently abled”. The formation of the same was aimed to produce high quality natural wooden beads as the end product. Theparticipants were trained on newer skills and techniques involved in bead work using dierent beads, colors, and designs and now the artisans are able toproduce 13 varieties of necklaces and beaded jewelleries.

The project has made sincere eorts to create links between the bead worker community with South India Scheduled Tribes Welfare Association and the marketplace.

43. The Weavers of Kurinchipadi

Handloom weaving is still a household industry as wel l as a predominant source of income in Meenatchipettai village of Kurinchipadi since 1955. Unfortunately,the weaver workforce has dropped from 20,000 to merely 2,000 today. Productivity depends on the number of looms and workers in each family. However, thefamilies that rely solely on weaving earn lower incomes and live in poverty. This is because the cost of materials is high, the onset of power looms, debt, poorworking conditions and the gap between the market and the weavers.

The TLMTI project tried to counter the problems with skill enhancement and diversication but was unable to motivate the weavers to partner with TLMTI.Fortunately, the project gained the interest of a family of 12 with 3 disabled artisans.

The development strategies include weaving assessments, product development, packaging, tailoring and even working with the marketing sta of the CRAFTproject (Centre for Rehabilitation Towards Artisans Fair Trade) to develop marketing and promotional material. Products like cushion covers, aprons, curtainsand apparel are being developed and a tie-up with Fabindia (Fabindia is an Indian chain store retailing garments, furnishings, fabrics and ethnic productshandmade by craftspeople across rural India) resulted in the successful implementation of their rst big order production. All in all, the project has developeda good rapport with local societies and has improved productivity – fullling the aim to establish a unit that would make and convert fabric to product.



44. Sea Shell Workers of Pachayankuppam

Cuddalore Old Town is the main hub of producing sea shell raw materials and other related work. This had been a

source of income for the ppopulation who live near the coastal area in Cuddalore district since time immemorial.

A workshop was conducted for ‘dierently abled’ sea shell workers to help them gain condence over their skills.The participants were trained on selection of raw materials, usage of electric gun, product designing and nishing,importance of team work and production, labeling, packing and forwarding etc. The participants learnt about sevendierent models of products that have ready markets. They were also taken for exposure visits and put in touch withpotential buyers.

45. Brooming Business!

It takes time to count the number of brooms at Urmilabai’s house. The SHG which was formed in her colony gave Urmilabai new ideas for making a living andsupporting the family. Urmila took a loan from the SHG and started o the broom business at home. According to her, the market is steady and there are regularorders from clients. She is able to make a prot of Rs.5,000 a month from the broom work alone.

Urmila belongs to Ashadeep SHG which has ten members. When each of them started contributing Rs.100 every month, they weren’t sure how much dierenceit will make in the long run. Today, the women and the entire villagers are thankful to TLMTI for bringing to them the idea of Self Help Group!



46. Handloom Weavers of Meenatchipettai

Handloom weaving is still largely a household small scale industry, as well as predominantly a source of income in Meenatchipettai village, Kurinchipadi block. Butmany factors have led to the decline of this art form. Mainly high cost of raw materials, trade controlled by merchant and manufacturers / exporters, powerloompolyester materials replacing cotton fabrics, too many intermediaries, low wages xed by societies and policies not favoring to the primary producers, high levelof indebtedness, decreasing opportunities and poor working conditions are only few of the problems.

The dierently-abled artisans were grouped together by TLMTI and along with a product designer were trained in using various yarn counts, exposed to dierentcolour combinations and textures in production and learnt the types of reeds and usage. They also were trained to understand the designers specicationsand work independently. Easier supply chain of raw materials was established and measures were taken to reduce the production time thereby resulting inincreased income per metre.

A range of cotton fabrics were developed and the fabrics were converted to products such as cushion covers, aprons, curtains, and other apparels. Theproducts were presented to the famous Fabindia outlets for work orders and few were approved and assigned for the next season. The quality control and fair trade practices make this an exemplary example of intervention for dierently-abled artisans.



Initially Pugalenthi did not show the condence and was very disheartenedwith his problems in mobility.



47. Fair and ‘Fab’ Trade

32 year old Pugalenthi had been denied from entering his family profession. Though he hails from a household traditionally involved in carpentry, but he hadvery minimum skill set for the same. His father and brothers had not involved him or bothered to teach him carpentry due to his disability. Pugalenthi lives withInfantile Paralysis and has a shrunken leg. Denied the family profession, he tried to involve himself in studies but had to discontinue the same after fth standardas the school for higher studies was situated in the next village. Pugalenthi grew up uneducated and unskilled... dependent on his family for his sustenance.The CRAFT project sta identied and motivated him to take up his family enterprise. In the beginning, Pugalenthi did not show the condence and was verydisheartened with his problems in mobility. The project sta encouraged him to start with small products like a cross, wooden boxes, bee house etc. He waspaid for his work. Later, he was invited for attending a ‘design and product development workshop’ on carpentry product where he met other people withdisabilities who were also carpenters with assorted skills and facing similar constraints in life. There he was introduced to the possibilities that lay ahead ofhim and was trained in using various machineries which make the work easy and help overcome problems of mobility. He was also trained to produce qualityproducts.

The rst batch made by Pugalenthi were distributed as samples to a few buyers in Chennai and New Delhi. His products were appreciated for quality anddesigns. After couple of months, a work order for Rs 6.5 lakhs was mobilized by one of TLMTI’s partner. Pugalenthi soon realised that he could not do the ordersalone and made a team with four more workers - two people aected by leprosy and two people aected by polio. He trained the other members on nishingand handling work as the production processed. The project also helped them to identify a space to work. They have completed their rst work order anddelivered it on time.

This project did not only give them popularity but also helped develop inter personal relationships between members, helping them solidify in to a close group.Pugalenthi was further sent for a training to the German Hospital Rehabilitation Centre, to acquire more carpentry skills to meet the local customer demands.As the group grew in their expertise, their products were channelized through TLMTI and successfully sold at FabIndia outlets. This not only promoted handicraftby people with disabilities but also helped them achieve self suciency through a cooperative and fair trade model.

This not only promoted handicraft by people with disabilities but also helped them

achieve self suffice through a cooperative and fair trade model.



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48. The Game Changers

In 2005, The Leprosy Mission Trust India (TLMTI) started a self-help group (SHG) in Asha Deep Leprosy Colony, in Bhilai, Chhattisgarh. Shri Vishwanath Ingle, alocal activist, got the SHG registered with the Government of Chhattisgarh. After the formation of the SHG, 20 women from the colony, under Ingle’s leadership,

approached the District Collector and requested for training to set up a weaving unit in the colony, under the Government’s Rural Livelihood Scheme. Theiradvocacy worked, and the collector immediately made arrangements for their training at the district headquarters, in weaving, and sanctioned Rs 50,000, fortraining and other needs. With TLMTI’s active support, 20 women from the colony underwent three-month training in weaving. The modus operandi is that theGovernment supplies the SHGs with raw materials and the SHGs weave dharia and kambal and other items on job work basis, and the Government pays themfor the job work.

Presently, there is work available only for ve months in a year, and the SHG is advocating with the Government to provide work for all the 12 months. It isencouraging to note that each woman earns Rs 10,000 every month from weaving. It has truly been a game changer for these women!

49. “I have always wanted to work but was never given the

opportunity.”

Although Jyothi, 35, was not born to a wealthy family, they made sure she had an education till Senior Secondary. It was around this time she noticed patcheson her skin and went to a number of doctors before leprosy was nally diagnosed and treated. Tragically she did not realise the importance of nishing hermedication and, as a result, nerve damage caused by leprosy numbed her feet leading her to injure them and lose her toes. Her hands started to claw.

Stigma surrounding leprosy saw her brother and sister decide that Jyothi’s leprosy was lowering the family’ s reputation. They believed they would not marrywell with Jyothi in their home so they sold the house, took the money and threw Jyothi and their elderly mother onto the streets. Mother and daughter endedup living in a disused bus shelter and nobody would employ Jyothi because of her leprosy.

It was in the bus shelter that The Leprosy Mission Trust India found Jyothi and her mother. Jyothi was asked if she wanted to join the CRAFT project which trainspeople aected by leprosy and disability to make wooden handicraft items to sell. Jyothi proved to be very talented and now earns enough to bring her out ofpoverty. She is hoping to get a house for her and her mother soon. She said: “I have always wanted to work but was never given the opportunity. I want to makethis business work, to get regular orders and expand so that we can employ other people who are at the margins of society.”





50. Tulshi

Cooperative Fisheries

Society

When asked ‘What is the main benet of forming thesociety?’ Prompt comes the reply, “As individual or asmall group we could not aord leasing a pond or takingit by tender. Also the work and labour is comparativelyless and the prot is good”.

The Tulshi society was formed on the 5th of November2010 with 50 members from three SHGs-Navin, Naikiranand Unnati. The society has four ponds, taken by tender

from the local Panchayat. Three of the ponds have areasbetween 7 acres to 16 acres. One of the ponds is arainwater fed dam and dries up in summer. This damis taken on a ve year tender for Rs.50,000. The societyhas taken a loan for Rs1,00,000 through the sheriesdepartment. Baby sh of Rohu and Katla breeds costabout Rs.1,700 per kilogram and can give grown shworth Rs.35,000 after ve months. In a month about 6quintals of sh can be sold through the weekly market.The culture at the ponds is to be constantly watchedespecially during night. Members who live nearby theponds do the night watch.

All the members of the society get a labour for four daysa month for the harvest, at the rate of Rs.150 per day anda share of the prot. Last year, the prot distributed wasRs.5,000 per member.



51. Re-tuning Life

Tavita Raju, from Vizianagaram district of Andhra Pradesh, is a disabled Polio aected artisan who worked as a labourer. It was found by project sta of TLMTIthat he had hidden skills. He possessed the entire knowledge of the craft but had never been given an opportunity by the local artisans. Instead, he was teasedabout his disability for fun. It took some time for Raju to accept the challenge that he can work individually.

He was supplied with the raw materials and required tools by the project and was encouraged to make his own instruments in dierent patterns. The samplesmade by him were forwarded to MESH and were displayed at Abilities Mela at Hyderabad in September 2007. The visitors of the Mela were attracted by his newpatterns and he reached sales of nearly Rs. 6,500/- within a day. Further to this, the project put him in contact with Lepakshi, a Handicraft centre of the AndhraPradesh Government, where he was given regular orders.

On account of his regular orders, he has taken a rented place as workshop to do his work near his house. His parents are happy with his contribution in buildingthe new concrete house in the place of their thatched house. Today, Raju is a new person who has started accepting the talents he possesses and stands forhimself.

52. Master of His Land, Rights...and Bikes!

At 21 years of age, Samil Nandi, was accepted as a student in the ‘Two-Wheeler’ mechanics course at The Leprosy Mission’s Bill Edgar Vocational Training Centrein Bankura, West Bengal. Samil came from a leprosy-aected background and thereby received free accommodation and training. Further upon graduation asa qualied motorcycle mechanic, he was given the startup loan of Rs 100,00 to open a small motorbike repair shop at his village.

Samil’s excellent skills quickly gained him recognition and he was very soon able to repay his loan, earn a reasonable income and settle down in a marriage.Then tragedy struck. His wife died in a house re and Samil lost everything he held dear. Unable to concentrate on work and suering from acute depression,Samil could not continue with his business. However, his former instructor, Mr Subrito Bagel, was able to counsel him and help him to get his business up andrunning again.

The second time Samil borrowed a total of 100,000 rupees, over several loans, with which he was able to purchase 1/8 acre of land and build a small repair shopon a busy highway. Without rents to pay, he could concentrate on his work and be his own master. The placement of the shop on the highway proved to be agood move and today, Samil has a constant ow of customers seeking his expert skills as a motorcycle mechanic and he runs a thriving business. His is truly astory of transformation and typical of what can be achieved with The Leprosy Mission’s support.



53. Ice Candy Wallah

50 years old Mopada Krishna, joined the SHG set up by TLMTI Empowering communities (EC) project sta in theChinthalavalasa village. Under guidance of the project sta, Krishna took some loan from the SHG and invested theloan amount in an Ice candy selling business. He purchased an old cycle, a box and invested the remaining amountin the ice candy. He started selling the ice candies in and around his village. Krishna was able to earn Rs 150 per dayafter taking out all his expenses. And in summer this amount doubled to 300 per day. After starting this business he issaving atleast Rs 100 per month in the SHG. Today, Mopada Krishna is a happy man and known as the Ice Candy man.

55. Sima Mahato

She and her parents contracted leprosy and were treated at the Leprosy Mission hospital in Purulia. Her father developed ulcers in his foot while her motherexperienced deformity in her hands. Sima was diagnosed in time and was not left with any lifelong deformity. But the family was thrown into nancial chaos.That is when TLMTI’s Catch Them Young programmeme stepped in and took care of funding her education. Today, at 21 years, Sima is completing her Bachelorof Arts degree and aims to be trained as a nurse to be able to serve the society.

54. Anandhi’s vision for Future

30 years old Anandhi is the representative of the District Disability Federation. She has made links with the social welfare department and is not only helpingpeople with disabilities to access their entitlements, but is also supporting widows and other people from marginalised groups within the community. TLMTI’svocational training support has helped her broaden her horizons and she has used her new income from tailoring to enrol herself on a computer courseso she will have the skills to either become a computer operator or a teacher of tailoring at a government college. Anandhi has a vision for the future. Sheis determined to access the government reservation for people with disabilities and get a government job. This determined and capable lady has alreadyregistered at the employment oce and is striving to achieve her dreams.



56. “Even my own children refused to see me. My brother visits

occasionally. Sometimes I wonder why this happened to me. Why

am I different?”



57. Reclaiming Dignity

Mother Theresa once said that the biggest disease today is not leprosy but rather the feeling ofbeing unwanted, uncared for, and deserted by everyone. At TLMTI’s Snehalaya’s or Care Homes,the elderly reclaim their place in society with dignity.



“I would cry for several nights, fearing for my daughter’s hand.She is so young and her whole life is in front of her”,

says Anita, Beria Village of District Barabanki.



58. Of Mothers and Daughters

Anita lives in Beria Village of Ramnagar Block, District Barabanki. She is a mother of three, Komal being the eldest child in the family. Eight-year old Komaldeveloped patches in her left arm and noticed numbness in her two left ngers one year ago. She was scared and told her mother about it. “I would cry forseveral nights, fearing for my daughter’s hand. She is so young and her whole life is in front of her”, says Anita.

Anita does not own land and works as an agricultural labourer like her husband. Whenever she nds time, she attends the awareness camps. In one of thecamps, she heard about leprosy and its symptoms and treatment. She shared her daughter’s condition with TLMTI’s local volunteer. Komal was then taken tothe government hospital and treated for 6 months. Soon after that, Komal developed a reaction that resulted in swelling nerve in her left arm.Prednisolone, a medicine for treatment of reaction of leprosy was not available in the Government Hospital. With the assistance of TLMTI volunteers, Komal wastaken to a private practitioner. Komal underwent 6 months of treatment.

Anita’s presence of mind and her knowledge saved her daughter’s hand. Although uneducated, Anita used the information and was beneted from it. Leprosyis a disease that generates fear in the society as a mutilating, disguring, contagious and incurable disease. It has perhaps been a highly stigmatizing disease forcenturies because it causes physical disgurement and no cure was available until the 20th century.

If diagnosed at an early stage, deformity and physical disability can be prevented, thus, reducing the stigma attached to it. One of the important objectivesof TLMTI’s Women Empowerment Programmeme (WEP) is to spread awareness on the disease and it’s early diagnosis. The awareness on leprosy is spreadthrough magic shows, organizing leprosy camps, video shows, one to one interaction with TLMTI volunteers and SHG meetings. Since 2009, 68 new leprosycases have been detected through WEP’s initiative in Ram Nagar Block (District Barabanki).

Although uneducated, Anita benefitted from the information shared by TLMTI volunteers.

Because of her presence of mind she could save her daughter’s hand.



“TLMTI’s focus in the village has not only been on Leprosy, the disease but theyhave made women aware of their potential and capacity, informed them of their

rights and entitlements through community outreach programme.” - SanjayVerma, Sarpanch , Siroli Kala Village (Fatehpur Block)



59. A Progressive Sarpanch

Thirty-years old Sanjay Verma is the Sarpanch (village head) of Siroli Kala village, Ramnagar Block (District Barabanki). He holds degrees in B.Sc and B.Ed and is

quite progressive in his approach and thinking. His wife also holds M.A. degree and supports Sanjay in his day to day work. With a population of 1,100 people(200 families), there are around 300 women and adolescent girls residing in Siroli Kala. According to Sanjay Singh, “The Leprosy Mission Trust India’s (TLMTI)intervention in the village has brought a notable change amongst women. Earlier women in the village were subjugated and mainly conned to the four walls oftheir home. Work outside the house was taken care by the male member of the family.”

“TLMTI’s focus in the village has not only been on leprosy, the disease but they have made women aware of their potential and capacity, informed them of theirrights and entitlements through community outreach programmemes, community legal camps or one to one interaction through their trained volunteers.”

To a larger extent, purdah system in the village is now fading; women are more vocal and are coming forward with their issues and demands. Self Helf Groups(SHG’s) have been formed that represents the strength and unity of these collectives. They have been also engaged in income generation programmes makingthem independent nancially and also in their thought process. “There are 11 SHG’s in our village.” An advocate of equality, Sanjay Singh does not believe indiscrimination of people on the basis of their caste, religion or prevalent social norms. “Earlier women never used to approach me or other men in the village.

Now they come forward and ask for work under Mahatma Gandhi National Rural Employment Guarantee Act (A scheme under the Government of India thatguarantees 100 days of employment to the rural population). The attendance of women in the Gram Sabha meetings has increased over the years. I am proudto say that almost every woman in the village can at least sign or write their names. The credit goes to TLMTI’s Adult Literacy Programme initiative,” says Sanjay.

60. TLMTI’s Low Cost Toilets

Sanjay Singh has also attended TLMTI’s Low Cost Toilet and Sanitation trainings in TLMTI’s Hospital at Barabanki Hospital. He shared this information with the

Block Develpoment Ocer and has recently been sanctioned the construction of 300 toilets under Swasthaya Abhyaan Scheme in 3 villages of his Panchayat.Each toilet will cost Rs 10,000 and will be based on TLMTI’s toilet model. Labour payment will be made under MGNREGA and the cost of the materials will betaken care by Gram Nidhi (Panchayat funds).



61. Baking Bricks, Breaking Road Blocks

Ten illiterate women including a couple of them healed of Leprosy are not too small to make a big dierence in the community. In Durgdih village on the bank

of river Shivnath in Bilaspur, these women are creating history. When bricks have a market value of Rs.3.20, the women of Jai Laxmi SHG are able to sell bricksof better quality at Rs.3 per block. At report time, 40 people were working in the brick unit run by the SHG formed through TLMTI project. The SHG was formedin 2006. It received a loan of Rs.12,000 from the project and the group started vegetable cultivation as their collective income generation programmeme. Acouple of the members’ husbands were also helping them in the production. Ramgopal’s experience in baking bricks came as aid to the group where his wifeGauri is the President. Two of the members oered their land on lease to provide the earth. With a bank loan of Rs.2,00,000 the JBC brick unit was launched.The group was able to buy a tractor last year and it also adds to the revenue. The unit is attracting buyers from the neighboring towns. The Block DevelopmentOce had graded the group as a top class SHG in income generation. Though water is much wanted for making bricks, rain is the only enemy to the unit. Thisyear it spoiled the investment of Rs.1,20,000. However, the group is able to stand the test and move on. The group has a saving of over Rs.2.5 lakhs which is alsoused as internal loans. Thanks to the project, many of their mental and social blocks are broken through the SHG and the brick unit. Moreover they have goodcooperation, respect and goodwill in the village.

62. Ramgopal, a project volunteer for JBC Brick Unit, had been a migrant worker in Allahabad where he learned the tricks of thetrade. Many of his peers had to leave the village during o agricultural seasons, seeking labour opportunities in other cities. Today, Ramgopal is busy with theunit which can sell 10 lakhs bricks a year. According to him, if they invest Rs.2 lakhs, it can fetch about Rs.8 lakhs. “We have good reputation in the area. Thishas increased employment opportunities in the village. We are able to sell brick at low prices” said Ramgopal. “The SHG could repair a bore well in the villagefor the community” he added.



63. ‘My emotional and mental state suffered because of my

own self image.’

Self stigma proved to be cancerous for Sudhi Ram. He was ghting a troubled depressionafter being unable to keep up with his job. The stigma associated with leprosy was so deeplyembedded that Sudhi Ram feared it’s diagnosis. So despite signs and symptoms, he only seekednatural remedies and not a proper medical treatment. He would cover his wounds and bathquickly to avoid other people seeing it. When his condition only detoriated further, after abouttwo years, he was referred to the TLMTI hospital for MDT where he also found out he wassuering from Tuberculosis. Unfortunately, like so many leprosy suerers, his limbs and eyesightwere permanently damaged as a result of not being diagnosed in time. He lost his ngers andsome mobility in his hands which made eating and picking objects dicult due to damagedmuscles.

Losing control over his life and body put Sudhi Ram into chaos of despair. The disease which hehad stigmatized against had taken him into its clutches. But with the support of TLMTI’s socialworkers, Sudhi Ram soon realised that there were much more badly aected cases than his andthe stigma and discrimination were unfounded. His counselling worked in association with thecommunity development project which helped bring him back into the mainstream. He founda new hope for life, courage to overcome his circumstances and a desire to help others. TodaySudhi Ram is a changed man and works as a night-time security guard.

64. The Naari Ekta Women Weaving Cooperative is from the village of Baratnara inRaipur district, Chhattisgarh. The 25 women members of this group were unskilled agrilcultural labourers with half of them aected by Leprosy or dierentlyabled. TLMTI faciliated their training through the Weaving Cooperative society, Government of Chhattisgarh.The Government provide them with four looms forthe training with a stipend of Rs 500 to all the 25 members in the cooperative for a period of 3 months. The local Sarpanch (Local panchayat leader) was alsoroped in and he provided the Panchayat Bhawan (Panchayat hall) to install the four looms. All the women work on the looms shoulder to shoulder, therebydecreasing marginalization and discrimination.



Financial peace of mind and control of nances help bring happiness and closer bonds for themarginalized families



65. Financial Security Blanket

Joining a self-help group increases her family’s nancial security as is evident from the case of the Kumari family. Shail Kumari is a 35 year old house wife and

mother of 5 children. When Shail was 1 year old, she suered from fever which paralyzed parts of her body. Polio left her left leg completely disabled. Marriedto a Leprosy aected man and disabled herself, she heard of the Leprosy Mission Trust India 7 years ago through friends when she joined the SHG formed byTLMTI.

Every month the members contribute a small, equally set amount towards the joint savings account which is managed by an elected member. When a memberruns into nancial diculty or needs to borrow money, they discuss the nancial matter within the group. The group decides collectively how much money willbe loaned at an interest rate of 2% to be paid back in monthly installments.

“Before, we use to get nancial loans from local money lenders at 10% interest, making it dicult to repay.

With the self-help loan, we pay 2% interest which goes back into the savings

and everybody gets an equal portion of the interest earned.”

Recently, one of her daughters needed urgent surgery for appendicitis. The Kumaris were able to take out an emergency loan of Rs. 5,000 to cover the cost ofthe medical procedure which may have been a serious problem otherwise. They now have nancial peace of mind and control of their nances.

“Through the self-help group, we now have hope for nancial support and we can meet our

nancial needs.”



Since July 2014, Kanyawati and her friend Pushpa from the colony are now trainers in theVTC and teach 16 students, earning a salary of Rs 2,000/- per month.



66. Integral linkages

Kanyawati is twenty-years old. At the age of eight, her family was ostracized in Ganeshpur village (Sitapur district, Uttar Pradesh), where she lived with herparents and six siblings. Her father suered from Leprosy. Due to lack of treatment, both his hands and feet were severely deformed. Since he could no longertake up labour job to support his family, he resorted to begging. The villagers did not allow her family to access community drinking water or bathe. She wasmade to sit separately in the classroom. Kanyawati dropped out from school when she was in class 9 and got married at the age of eleven.

Her father’s disease was not revealed at the time of her marriage as her elder brothers had already faced diculties getting married. Unfortunately, herhusband contracted Tuberculosis (TB) and she also got infected with it. Within three years of her marriage, her husband died leaving her with a one-year oldgirl child. A year earlier to that her father had passed away. Her in-laws refused to keep her and she came back to her mother’s home in Kusht Ashram Arjunpur(Leprosy Colony) in Sitapur district. Her family had shifted to Kusht Ashram Arjunpur soon after her father’s death. Her mother though had three sons; none ofthem have taken her responsibility. With no alternative of livelihood at an old age, she started begging in the streets.

Kanyawati was encouraged by the colony leader Ibrahim Sah to take up sewing and tailoring course from a local sewing centre. Ibrahim also supported hernancially for the same. Though she completed her course it was dicult to nd work within Arjunpur. TLMTI’s Vocational Training Centre (VTC) in Faizabaddecided to setup a Tailoring Centre in Arjunpur. Ibrahim was the integral link. S ince July 2014, Kanyawati and her friend Pushpa from the colony are now tra inersin the Centre and teach 16 students, earning a salary of Rs. 2,000/- per month.

VTC Faizabad is part of TLMTI initiative to help leprosy-aected and marginalized families with sustainable livelihood through skill training and self-employment.For the rst time in her life, Kanyawati has earned money on her own and thinks that she is capable of taking care of her daughter and mother. Inspite of hernew beginning, it would be long before she could persuade her mother to leave begging, that has supported the family for the past 6 years.

Kanyawati dropped out from school when she was in class 9 and gotmarried at the age of eleven.



Early 2008 Bairu and some of the bag-making students were given the opportunity toproduce bags for the 17th International Leprosy Congress. This little achievement helped

bolster their self condence.



67. One Big Family

Bairu Eadukondalu was in class 10 when he discovered he had Leprosy. His uncle worked in a leprosy hospital and he took him there for treatment. Bairu wasgiven three-month’s worth of medication. When it was nished he didn’t go back for more, so he got some ulcers on his leg.

Eventually he went back to the hospital and was given another course of MDT. But even this time he showed negligence and didn’t take it for long enough. Hisleg became very swollen and sore. He was referred to a larger hospital at Hyderabad where the doctors told him that if the swelling did not reduce he wouldhave to have his leg amputated. Sadly, a short while later, when Bairu was 20, he had a below-knee amputation on his left leg.

Unable to walk with the leg swollen and bent, Bairu was tted with a prosthetic limb which improved his mobility

considerably. He was also given a place at the Vizianagaram VTC to learn bag-making. After he completed the

course he worked as an apprentice for a local business.

Towards the end of 2007 and early 2008 Bairu and some of the bag-making students produced the bags for the 17th International Leprosy Congress, held inHyderabad in February. This little achievement bolstered their self condence. Watching Bairu expertly handle the sewing machine and fabric, and seeing thequality of the bags he produces, is inspiring. He also helps to teach bag-making when the VTC teacher is away. He uses his expertise to help train the otherstudents at the VTC. He says he has found a big family here.

From being disowned to nding a big family Bairu has come a long way



The smile doesn’t show the years of hard work thatRam put in as a labourer, rickshaw puller and schooldropout. Ram showed remarkable air for running hisown enterprise and made good use of the money thatTLMTI’s Community Based Rehabilitation programme

loaned to him for starting a chicken farm.



68. Hatch Plans, Think Big

Ram Subhawan, from north-east India, thinks like many 24 year olds – he wants to make a go of his business. He has ambition and drive. Tapping into thispotential, TLMTI’s Community Based Rehabilitation programmeme gave Ram a loan of Rs 15,000 to start a small business raising poultry. It’s one thing to starta chicken farm, but to start an actual business out if it is something else entirely. As a business person one has to make responsible manageria l and nancialdecisions. With the seed loan he established his chicken barn, bought feed for the poultry and equipment for cleaning.

Ram showed remarkable air for running his own enterprise and made good use of the money. Today he is a proud and smiling owner of the poultry farm.The smile doesn’t show the years of hard work that Ram put in as a labourer, rickshaw puller and school droput. Too busy with earning an extra income forhis family, he paid little attention to the rapidly developing Leprosy which left him with an ulcer and a clawed hand. A reconstructive surgery at TLMTI faizabadhospital gave him a new lease of life and the rehabilitation programmeme gave him an opportunity to stand on his own feet.

“One day I want to be a successful businessman and be self-sucient so that I can help others in need,” says Ram.

“Before, I used to borrow money to run the household and had to ignore my medical needs. Now, I can do both with

my poultry business. My life has turned around.”

While Ram himself was a school dropout, he is ensuring his sister doesn’t share his fate. “I want to break the traditional thinking that says girls should not goto school. I bear all the expenses of my sister and will send her to school as long as she wants to study.”

Ram continues to ‘hatch’ plans and thinks big. With his ingenuity, he deserves

the dream run.



69. Delivering beyond Duties

About 15 years ago TLMTI Hospital Naini did about 100 reconstructivesurgeries. Now they do about 350 reconstructive surgeries a year, whichmakes it probably the largest in the world for any institution to do; yet they doit with a small number of sta. They are extremely burdened but they manageand produce good results. They make sure that people who had deformitiesget corrected and go back to their families. About 15 years ago TLMTI NainiHospital had an average of 90 inpatients. Today, the ocial bed strength is 120for leprosy but the numbers of inpatients are always more.

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70. Healed to Healer

Pinky is twenty years old and joined TLMTI Naini Hospital as a nurse in April 2014.

When she was thirteen, she faced problem with her left hand. Since she lived in Varanasi,

she went to BHU (Banaras Hindu University) Hospital for her treatment. The doctor gaveher medicine for one year and told her that she suered from slight paralysis of hand,which will be cured after medication.

After one year, the condition of her hand became worse. Her thumb and ngers wereclawed and she suered from wrist drop and foot drop. Pinky’s parents went to a dierentdoctor this time and he referred them to TLMTI Naini Hospital.

Pinky came to Naini for her treatment along with her parents. When her disease wasdiagnosed as Leprosy, Pinky and her parents were shocked. They also regretted the factthat they had wasted one year of treatment at BHU .

Pinky’s treatment took around 2-3 years at TLMTI Naini Hospital. She had two correctivesurgeries of hand and tendon transfer surgery for foot drop.

Pinky had a very dicult time initially. She is the youngest of three siblings and hencepampered. Although her family, relatives and friends supported her, she suered from lowself esteem.

Pinky decided to pursue Nurse Training Course, as she was very impressed with the nursesworking in the hospital. Under Comprehensive Rehabilitation Programme (CRP), thehospital managed to get her funded for a private nursing college. Pinky completed GeneralNursing Midwifery course and got placement in TLMTI Naini Hospital.

Today, Pinky’s family and friends are happy to see her doing extremely well in life . She is stillnot comfortable using both her hands and her supervisors are trying to work around thatby giving her more responsibilities. Although Pinky has been cured, it will take a long timefor her to be completely normal. She is fortunate to work in an environment that will surelyhelp her walk the last mile.

“Pinky is a little girl who had spent 10 years hiding her hand so suddenly after surgery,she is not going to show it again so easily. She wanted to do nursing and TLMTI NainiHospital let her. She had to learn to wear gloves, start using both the hands to givesyringes and come out from the state of self-pity.”



Journey of



the mission

Stories 71 to 80



Beginning of the work

In 1869, Wellesley Bailey, a young Irishman, sets sail for India intending to join the police force. On arrival he decides insteadto become a teacher. During his training with an American mission organisation he sees for the rst time the devastating effects

of leprosy. In 1873 Wellesley and his wife, Alice, return to Ireland from India, heavy with the thoughts of the suffering they

have seen – people with leprosy who are severely disabled, rejected and without any means of support. Wellesley and Alice

were determined to raise awareness of leprosy

and its damaging consequences. In 1873 they

begin a speaking ministry; telling people about

the needs of the leprosy patients they have met.

And in 1874 The Mission to Lepers, now The

Leprosy Mission, is born.

In response to the talks given by the Baileys,

people begin giving money and praying for the

work. By the late 1870s the Mission is raising

£900 a year and caring for 100 leprosy-affected

people in north India. Throughout the rest of the

1870s and into the next two decades, the Baileys

travel extensively to see the needs of people

affected by leprosy and to encourage support

for the work.



1880s – First Mission Hospital

Three support ofces are formed in England; Mary Reed is sent to India as the Mission’s rst missionary; Naini in UttarPradesh and Purulia Leprosy Hospital in West Bengal opens with support from the Mission.

1890s – India and beyond

The Mission’s rst public meeting is held in London – the money raised helps to build a leprosy home and children’s home in

Neyyor in south India. Two more homes open in India – Miraj and Kothara. Wellesley Bailey visits Mandalay, Burma, to open

the rst ‘Mission to Lepers’ home outside India. Bailey tours the USA and Canada and a support ofce in Ontario is formed.

Gradually the Mission’s work extends to China, Japan and then to Africa. By the time Bailey retires in 1917 the Mission has

87 programmemes in 12 countries with support ofces in eight countries.



An antidote of love

The Mission’s rst task was to bring those who were without within, to take the sting out of the word ‘leper’ by the antidoteof love, to be realist enough to recognize that any stigma attached to the disease could only be abolished by deed and not by

word. From 1917-1937, people with leprosy were offered hope for the rst time as treatment with Chaulmoogra oil became

widespread. Injections were painful, and only a few were cured, but the aura of cure saw the outlawing of the word ‘asylum’,

and the introduction of its replacement ‘hospital’.



Growth years

The Bethesda Leprosy Home in Champa was founded by an American Mennonite Missionary Rev. P.A. Penne in 1902 and wastaken over by the Mission the next year. The Home in Champa was founded the same year. The Leprosy Mission Hospital,

Muzaffarpur was started in the year 1904 by a German Lutheran Missionary, Dr Riffemtrop. It was started as an asylum for

the poor and homeless sufferers of leprosy. In the beginning, all the leprosy patients were kept in grass huts. As the number of

needy people went up, a 30 bedded home was built with bricks and tiles. Later on in 1909, some more buildings were added

which were called wards for male and female patients who lived separately. During the First World War, the Mission took over

the home. 1906 saw the founding of homes in Salur and Chandkuri.



Rev.C.Stanley Vaughn and Rev.J.S.Chandler from Madurai American

Mission came to Manamadurai and purchased lands at Kalkurichi village

in the year 1911. The King of Sivaganga donated lands to the Home and

Hospital for Leprosy work. The area was called ‘Dayapuram’ and the

clinical work started in a mud hut in the year 1913. After some time few

buildings were constructed where 400 inmates stayed and got treatment.

In 1917, Rev. Premananda A. N. Sen visited Christian patients in the

Leper Asylum at Gobra on the outskirts of Calcutta, which in his memoirs

was quoted to be like a jail, behind high walls with armed police at the

gate. While ministering to the patients in Gobra Hospital, he became

aware that there were several hundreds of beggars and others suffering

from Leprosy, living in appalling conditions in the bustees, who were

given no attention or treatment. In December 1923 a small dispensary was opened there, called the CMS Leper Dispensary. The

work grew and more and more patients from the better educated classes began to attend. After his retirement, in 1938, the namewas changed to The Premananda Leper (later Leprosy) Dispensaries, in honour of the Founder. In 1940 a good two-storied

building was erected on the road frontage under the supervision of The Oxford Mission. 46 years later, a tripartite agreement

between The Oxford Mission, Diocese of Calcutta and The Leprosy Mission Trust India was made in 1986 and the Premananda

Leprosy Dispensary came to be known as Premananda Memorial Leprosy Hospital.

The year 1835 Sir Henry Ramsay who was a Military Ofcer in the Gorkha Regiment met a man with ulcers wrapped in

strips of worn cloth, unable to walk and was in a pitiable condition, entered the military compound. Some soldiers saw him and

started shouting and tried to throw him out. After seeing this miserable and distressing sight, Sir Henry Ramsay decided to do

something for these people. With nancial help from friends, he made boarding and lodging arrangement for 20 such people bybuilding 20 huts. In those days this dwelling place was called “ Leprosy Ashram”

In 1938 a leprosy care home was established by Messers A.D.Miller & W. Russels. Gradually it became a hospital of 40 Beds

catering to the patients with serious problems.



1940s – Treatment and surgery

The rst effective cure for leprosy, Dapsone, is introduced. Over the next 15 years millions of patients are successfully treated.

Dr Paul Brand, a surgeon, and colleagues at Karigiri, South India, pioneer life-changing reconstructive surgery to correct

leprosy-related disabilities.

In 1950s DDS began to be widely used and TLMTI Homes began their transition into hospitals to meet the need for tertiary

leprosy care – ulcer care, Reconstructive Surgery, reactions and neuritis treatment, eye care

The anti leprosy work was started in 1961 in Barabanki. Late Dr Francis Bramwell and other medical staff of Faizabad had

started a weekly leprosy clinic in this area. During this time, the clinical team realized that there were a large number of leprosy

cases in this area of Barabanki. Therefore this clinic was held twice a week from 1965. By the end of 1968 this became a full

leprosy clinic.



The Leprosy Mission

In 1965 The Mission to Lepers changes its name to The Leprosy Mission (TLM) to avoid the negative connotations of the word‘leper’. By 1980s MDT had replaced DDS monotherapy. In 1981 the World Health Organisation (WHO) recommends a new

combination drug treatment for leprosy – Multi-Drug Therapy (MDT). People are cured in as little as six months. TLM agrees

to adopt MDT in its treatment of leprosy. In the 1990s the emphasis on Prevention of Disability started.

1990s - Rehabilitation

As more leprosy-affected people are cured, caring for people with lasting disabilities becomes increasingly important. TLM

begins a programmeme of social, economic and physical rehabilitation.



Beyond the 2000s

2000 ushered in the post elimination phase of leprosy and in 2001 TLM had 21 hospitals. The concept of Community Hospitalsbegan in 2005 and today TLMTI has 14 hospitals , 6 of which are community hospitals. There are now signicantly fewer cases

of the disease so TLM’s work becomes more community focused. TLMTI is present in almost 50 countries around the world.

Although leprosy is curable, there are still over 500,000 new cases of leprosy diagnosed per year. The challenges of treating

and rehabilitating those affected by leprosy while breaking down the stigma of the disease remain.The Leprosy Mission stays

committed to its vision of a ‘world without leprosy’ continuing to provide expert care to leprosy-affected people.



Marching ahead

The pioneers of the missionary leprosy work in the nineteenth century began in India with simple, uncalculating compassionto care for those who were most affected. Today their work carries on through The Leprosy Mission Trust India , both in spirit

and deed.





“I have helped others to get work and today people recognize me for that. I get respect for my work and the sense of being marginalized or discriminated is

much less.” – Ibrahim Sah, Arjunpur Leprosy Colony leader, District Sitapur



81. Enabling Leadership

From early childhood, Ibrahim Sah has experienced hostility, indierence and abomination from people in the town. It was natural .. almost a way of living.. forhim and other families in the colony to be treated as sub humans. Ibrahim has spent thirty-ve years of his life in Arjunpur colony (Leprosy colony) in Kherabadtown of Sitapur district. (Uttar Pradesh). His grandfather worked in military and was forced to leave job when he was aected with leprosy causing severedisgurement in his body. Ibrahim’s father used to work in circus and performed a dangerous act, ‘the well of death’ (Maut ka Kuan) that involved jumping ina well from a height of 105 feet with re on his body. Few years later, his father left work when he could no longer climb the ladder with his clawed hands, acondition that happens when leprosy is left untreated for years and it aects the nerves. Ibrahim had to shoulder the responsibilities of his family soon afterthat. He dropped out of school after completing his primary education and learnt to repair cycles. He worked in a cycle repair shop for some time and laterworked as a daily wage labourer taking up odd jobs.

The Leprosy Mission Trust India (TLMTI) Barabanki engaged Ibrahim and few of his friends from the colony as part of its project (Challenging Anti-Leprosy

Legislation (CALL) Project). They were sensitized to their rights and entitlements and the need to advocate for change.

Under the leadership of Ibrahim, sixteen people from the colony formed Kabir Sewa Samiti, a group to educate the people on their rights and help them availthe government entitlements and benets. Kabir Sewa Samiti a lso holds 7-8 leprosy awareness camps per month on the streets, near temples and public placesto bridge the gap between leprosy aected and a common man.

After several meetings and submitting a memorandum at the district level, the colony has three streetlights that are in working condition. They have alsoinstalled 2 solar lights and a submersible pump acquired from Gram Panchayat. Kabir Sewa Samiti has also helped 11 people from the colony to avail pensionsunder Samajwadi and Mahamaya Pension Scheme

In 2012, Ibrahim took a loan to buy his own auto (3 wheeler used as public transport) to ferry passengers to and fro in the town. He continues to help otherswith better livelihoods and mobilize them for their rights and entitlements.

TLMTI’s initiative steered him to a leadership position within the community and has helped restoring dignity of the families living in the colony. For Ibrahim itis a new identity. “ I have helped others to get work and today people recognize me for that. I get respect for my work and the sense of being marginalized ordiscriminated is much less.”

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82. Street Plays for Sensitisation

Years of segregation, stigma and discrimination have deep rooted scars on the life, personality and inter-

personal skills of persons aected by leprosy and their family members. In the process of bringing positiveand comprehensive change in this long standing status quo the persons aected by leprosy and theirfamily members need to build on their own self esteem, condence and belief system. For the same, theHEAL India campaign, used the medium of Street plays to educate, sensitize and help bring the subject ofLeprosy into the mainstream.

83. Anveshna, a Workshop

For persons aected by leprosy and their family members to acquire the condence and strength tobecome the force of change, HEAL India, an initiative of The Leprosy Mission Trust India conductedAnveshna, a workshop using the principle of action learning, theatre, theatre intervention, interaction andintrospection so as to infuse a stronger belief system and strengthen inter-personal skills



84. Educate to Heal

The HEAL (Hire, Educate, Accept Leprosy-aected) India campaign challenged the misconceptions around Leprosy byreaching out to corporate and school children. The Educate to heal philosophy was rolled out to about 3,000 students fromleprosy backgrounds and 250 schools as part of TLMTI’s Education Programmes

85



85. Ground

Changes: Adult

Education

Vidyawati loves to read the morningnewspaper. She has made it a daily habitto spend some time brieng herself aboutcurrent aairs of her region. Hardly anyonewould believe that she was an illiterate womantill about a few years back. Vidywati was notable to read or write till she became a part ofthe Literacy Group in her village. The Projecthas been conducting functional literacyclasses in her village. TLM’s Adult Literacy

Programme initiative has been assignedthe role of teaching women to read and towrite. Vidyawati has been attending theseclasses for some months. Vidyawati has 5girls and 1 son. She has now understood thevalue of education and she wants to get hergirls educated. Her daughters have startedgoing to school. She is now able to help herdaughter with her school work. Things arechanging on the ground in this small village.

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86. House to Home

Ajjan Begum is a resident of the Rajiv Gandhi Kushtha Ashram in the Bahadurpur Block of the Leprosy colony. Overlooked by the provisions of the IndianGovernment, she and her family only added to the growing needs of the poor in India.

Ajjan Begum lived under a leaky roof of a mud-hut – one that she shared with her grandchildren and cattle. Oblivious to the Government’s schemes for peopleliving below poverty line, they continued to live in a broken home with no help to x it. During the monsoons, they would crawl into corners, covering their headswith anything they could nd. A dry spot on the oor was luxury and Ajjan Begum knew that she had to do something.

Uttar Pradesh’s TLMTI’s CALL (Challenging Anti-leprosy Legislation) Project came as saving grace. The project held training programmemes in the villages andit is here that Ajjan Begum learned about the State Government’s Schemes, where BPL (Below Poverty Line) Card holders were entitled to nancial support forhome renovation and repair.

With the help of the CALL intervention and the Gram Pradhan, Ajjan Begum met with the Block Development Ocer in Bahadurpur to discuss the standard ofliving at the Leprosy colony. She managed to get done a successful assessment of their living conditions and their needs for renovation was approved.

Thanks to her perseverance and resolve, Ajjan Begum and her family live in better conditions today and have helped in the education and upliftment of manyother families.



87. Making Citizens of Tomorrow: The Vocational Education Centres focus on mainstreamingand education for girls and pay special emphasis on literacy and skills leading to entrepreneurship.



88. Catch Them Young: The CTY programme has helped reach out to many students with loans andscholarships. It bridges the distance that was left untraveled for the marginalized children in starting or continuing their education.



89. “Nothing is impossible... I have come to learn that in life. It is all about the right guidance and opportunities. TLMTIprovides both to youth who need it the most. This is nation building.”



90. “The patients are initially scared... with no self esteem. The stigma against leprosy breaks them down. It is our dutyto make them feel at home... accepted and loved. Each life is to be cherished”



91. TLMTI provides a wide range of services for the leprosy aected including provision of Multi Drug Therapy,management of reactions, care of insensitive limbs, prosthetics and orthosis, customized footwear, orthopaedicappliances, correction of deformities through reconstructive surgery, physiotherapy, managing ocular leprosy andgeneral health.

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92. Hiralal’s Indomitable Spirit

An indomitable spirit, 53 years old Hiralal, had lost it all–job, a wife for six years, social acceptance, sources of income and physical health. Ostracized for be ing

diagnosed with Leprosy he was a solitary soul conned to the four walls of his shanty in the leprosy colony of Khairabad in the town of Sitapur. When CALLproject sta, started training programmemes in the colony for empowering people aected by leprosy, Hiralal was seized by a new hope. He started proactivelyparticipating in all the programmemes and motivated others to join the ght for their rights. He was elected as Vice President of the Community-BasedOrganisation (CBO) facilitated by CALL in the colony. Hiralal championed the cause of discrimination faced by the leprosy aected while using public transport.They were often subjected to public humiliation by being asked to de-board buses and auto rickshaws. He led a sensitization initiative at the bus stations andauto rickshaw stands spreading awareness about leprosy and the need to stop the unnecessary discrimination. This has brought about a signicant respitefor the Leprosy aected in his immediate locality. This has motivated him to take the next step to give up begging and achieve a sustainable livelihood for alife of dignity. With help of the CBO members he has submitted an application to the Gram Panchayat to dig bore wells to revive the three dry ponds in thecolony so that they can do sh farming – a lucrative business. There is a determination in Hiralal’s voice as he talks about the plans he is nurturing on the pathof embracing a new life!

93 . Advocacy Changes Lives & Dreams

Indira Dharma Dham Kusht Seva Samiti in Mowa, Raipur, Chhattisgarh was set up for people aected by leprosy in 1985 in the name of Mrs Indira Gandhi, the

then Prime Minister. About 185 people aected by leprosy from dierent parts of the country live in this slum cluster. An advocacy group was set up facilitatedby TLMTI’s CALL(Challenging Anti-leprosy Legislation) Project sta for educating the inhabitants of this slum about their basic rights and providing information

and access to the various welfare schemes of the Government. Encouraged by this group, the slum dwellers in 2011 submitted a memorandum to Raipur

Municipal Corporation for providing them with proper houses under the Basic Services to the Urban Poor (BSUP) Scheme of the Jawaharlal Nehru NationalUrban Renewal Mission (JNNURM). Under this Government of India Scheme, good quality houses with in-house basic services are provided to city slum-dwellers,

free of cost. After much follow-up by the advocacy group, the municipal corporation sanctioned construction of 256 houses in a four-storied building complexin this colony, in September 2013. A sum of Rs 9.70 crores was sanctioned for the development of the colony with an 18 month deadline for completion of thesame. As the old huts are demolished, the inhabitant move to a temporary shelter with dreams of a permanent secure house being built. Advocacy can indeedchange lives and dreams.



94. “Sab aaye aur hum logon ko bheekh de gaye, aap log

aaye to hum logon ko jeena sikha kar gaye!... Thank you Leprosy

Mission Trust India!”

(Others came and gave us alms...you all came and taught us the way of life.)



95. “It was normal for us to live on the fringes of the society. To not expect anything, to notdemand anything! After TLMTI’s interventions we feel more human… we feel included. Life is beautifuland more dignied. “

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96. When There’s a Will, There’s a Way.

Kiran Devi is a local volunteer in Gudian Purva village. She has been associated with WEP (Women’s Empowerment Project ) since it started in 2009. Kiran,twenty-eight, is a dropout after nishing high school. Due to the stigma attached to leprosy, the forced source of livelihood of the fully-cured residents of theRajiv Gandhi Kushth Ashram in Bahadupur, Uttar Pradesh, was begging.

However, during a community meeting organised by the CALL (Challenging Anti-Leprosy Legislation) Project, they learned about the Mahatma Gandhi NationalRural Employment Guarantee ACT (MGNREGA), a central government sponsored welfare scheme that promises every rural individual at least 100 days ofemployment.

On further verication, the community applied for jobs under the scheme and the Block Development Ocer of Bahadupur issued an order to provide JobCards to all those who were physically t to work as labourers. He also wrote to the Branch Manager of the Bank of Baroda requesting him to open BankAccounts of the Job Card holders since it was a precondition for the transparent wage payment of the workers. This application was denied as indicated by theremark in the response to the letter sent by the BDO.

“We came to know that all these people are aected by leprosy and are under treatment, hence their bank accountscannot be opened in this branch.”

The group approached CALL and the team met with the Branch Manager to convince him that the group were completely cured of leprosy, were non-infectiousand fully-t to work. The incident even got featured in the local newspaper. Ultimately, the Branch Manager relented, and opened their bank account afterissuing a formal apology.

The residents of the Rajiv Gandhi Kushth Ashram do not beg anymore and live a self-sustained life with the wages they earn by working at actual jobs.



97. Access

to clean drinkingwater

Mangri of the Rajiv Gandhi KushthaAshram says that while others came andgave them alms to survive... but TLMTItaught them how to live with dignity. Thiscolony of the leprosy aected people wasreeling from problems of accessing cleandrinking water. There was only one hand

pump which was bringing up water withimpurities such as insects and mud andnot t for consumption. Their pleas wentunheard as the authorities paid little heedto their voice as they were considereduntouchables. When CALL project sta paid them a visit Mangri came out witha bucket of water which was all yellowishand full of worms. The TLMTI sta tookimmediate action and made the necessaryinterventions and roped in the authoritiesto help rid this village of their problems.

Now they have access to clean drinkingwater and have been made aware of theirrights and entitlements to enable them totake action themselves in the future.



98. One of the important objectives of TLMTI’s Women Empowerment Project (WEP) is to spread awareness onthe disease and it’s early diagnosis. The awareness on leprosy is spread through magic shows, organizing leprosy camps,video shows, one to one interaction with TLMTI volunteers and self help group (SHG) meetings.

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99. Future Forward Series: A Leprosy Inclusive Development

Agenda

Future Forward series is an initiative of TLMTI to share ideas with policy makers and other like-minded individuals and experts to create an environment ofinclusion of people aected by leprosy so that they can also be part of the development process in the country. As part of this series, TLMTI organised apanel discussion at India International Centre, New Delhi in March, 2013 to discuss action required to include people aected by leprosy in the developmentprocess, by bringing together policy makers and others working in the development sector on a common platform. The panel discussion had the theme, ‘ALeprosy Inclusive Development Agenda’. It provided a great opportunity to discuss what inclusion means for people aected by leprosy and also to nd outways to include them in the development agenda. As a result of the discussion, a constructive dialogue was started o with policy makers and various otherstakeholders to work out a rehabilitation policy for people aected by leprosy.

Ms Stuti Kacker, IAS, Secretary, Department of Disability Aairs, Ministry of Social Justice and Empowerment, Government of India, was the chief guest. The otherpanelists were Dr C.M. Agrawal, Deputy Director General, Central Leprosy Division, Government of India; Mr Harsh Mander, Director, Centre for Equity Studies;Mr George Abraham, Director, Score Foundation and Ms Seema Baquer, Assistant Director, Disability Rights Initiative, Human Rights Law Network.



100Small Victory Big Lessons



100. Small Victory, Big Lessons

About 30kms east of Lucknow, the capital city of India’s fourth largest state Uttar Pradesh,lies the district of Barabanki. Estimate released by the Planning Commission of India forthe year 2009-10 revealed that Uttar Pradesh had 59 million people below the poverty

line, the most for any state in India. With the sex ratio lower than the national gure, theliteracy rate among females hangs at a dismal 43%.

Rukhmani is from Rasulpanah village in Fatehpur Block in Barabanki District of UttarPradesh. She is among the underprivileged females of the skewed sex ratio who did nothave the opportunity to attend school. Rukhmani remained illiterate though ery andcondent with a charming smile.

When TLMTI came to her village, they formed a Mahila Mandal (Woman’s Group) inwhich she immediately participated. The lack of opportunities had never dulled theinquisitiveness and passion for a better life in her. She enrolled into the literacy classesand quickly picked up skills to read and write. She attended the awareness sessions

actively and volunteered in group activities.

Rukhmani’s father is disabled and was a recipient of the disability pension from theGovernment. But due to some undisclosed reasons the pension stopped suddenly.The pension was the sole source of survival for the family. Rukhmani brought up thistopic during one of the Mahila Mandal meetings. The TLMTI Sta and the Volunteersencouraged her to approach the Disability Oce and enquire about the reasons.

Strong willed Rukhmani emboldened by the support of the group and her new found skillsto read and write, went to the Disability Oce. Upon enquiry and document vericationsshe was able to get her father’s pension started again. This little achievement she creditsto the courage and condence instilled in her through the support of TLMTI in thevillage. The family would have continued to live without the pension had it not been forRukhmani’s ability to speak up, be heard and be aware.

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101. Boat of Dreams

In December 2004 Sundaram’s life was devastated by the Tsunami that hit Indonesia, Thailand, Sri Lanka and parts of the east Coast of India, killing 18,000people in India alone. Sandihya, Sundaram’s wife , vividly remembers that day. She was standing on the beach, waiting for the sh her husband had caught to dryso she could take them to market. Within minutes waves swamped the beach, and threatened to overwhelm her. Thankfully her eldest daughter was nearby,she grabbed her mother by the hair and dragged her to higher ground.

Their home was destroyed, along with Sundaram’s small wooden boat. For three months they lived in temporary shelter.

Sundaram, who was diagnosed with leprosy when he was nine years old, and had been in contact with TLMTI for many years; is a self-help group leader. Buteven before the trauma of the Tsunami, Sundaram’s life had not been easy. When people learnt about his leprosy, or saw his clawed hands, they would call himnames in the street. Thankfully, his wife and daughters were very protective of him and they would call back, ‘Why are you saying these things? Why are youspeaking to my dad like this?’ And gradually the stigma lessened.

TLMTI has been instrumental in helping Sundaram, Sandihya and their three daughters get back on their feet. A new house has been built for them, andSundaram has received a breglass shing boat and nets so that he can re-establish his business. Things are steadily getting back to normal. Beneath the shade

of tall palm trees, stands Sundaram’s new house. Sand from the nearby beach reaches his front door, and the turquoise Indian Ocean is less than a minute’swalk away. The family shows hopeful resilience and clearly take delight in their new home.

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102. Trainings for

Better Times

Nineteen years old Kuldeep works in a welding shopin Aruwaw village (District Faizabad). Originally fromAbanpur Saroha (District Faizabad), Kuldeep left thevillage for better opportunities due to poor nancialsituation at home. His father suered from leprosy andengages in manual labour work. Kuldeep is the eldestamongst six siblings, hence responsible for taking careof his younger brothers and sisters. Kuldeep has beenworking in Aruwaw for one and a half years.

After laborious and strenuous work of 12 hours a day,Kuldeep earns a salary of Rs 12,000 per month. In ruralareas, there is a great demand for welders in construction

and furniture business. Looking at the prospects,Kuldeep now wants to start his own enterprise backhome. The job had helped him save money for his setup.He requires one and a half lakh rupees and so far he hasbeen able to save seventy thousand. “Its not easy to geta government job so I want to start my own work in myvillage,“ says Kuldeep.

Kuldeep has received Welder Training for 6 monthsunder Community Based Vocational Education Training(CBVET) programme that has enabled him to dream ofstarting his own small venture. CBVET is TLMTI’s initiative

to reach out to large number of those aected withleprosy/general disability, dependence of leprosy and themarginalized communities. The Programme runs in vedistricts of Uttar Pradesh, namely Faizabad, Barabanki,Kushinagar, Pratapgarh and Sitapur. Since 2011, 761students have beneted from CBVET’s programme and103 are undergoing training for the same.



103. “Will my hand be straight ever?” always thought young Chandan, until his lifechanged after he underwent reconstructive surgery with a post operative physiotherapy at TLMTI Hospital Shahdara.



104. No one on the ‘outside’

After treatment, not everyone moved to colonies or back to the community. Some still wished to stay as they hadno one on the ‘outside’. They were referred to as ‘mercy’ patients in the hospital and Snehalayas or Care Homeswere maintained by the hospitals for these few. TLMTI has ve Snehalayas today which provide shelter, food, othernecessities of life and a caring atmosphere in which to live a life of dignity and peace.

105



106. As a young girl, Sarsawati Kumari, was devastated at the clawing of her ngers of her right hand. She could not go out, she could not playand she could not attend her school. She found it dicult to hold the pen and write. She gradually withdrew herself from her friends. The Leprosy Mission TrustHospital, Purulia not only performed reconstructive surgery of her right hand but also gave her post operative physiotherapy treatment. Now the appearanceof her hand is normal and she is able to write and use her hands. She is planning to continue her college and complete her Bachelors. She has also applied for

Computer Studies at the at the Vocational Training Centre, Bankura run by the The Leprosy Mission India Trust.

107. Rajesh is Twenty One years old and a native of Kothampadi, Salem district. He came to TLMTI hospital with both hands clawed, swelling andhigh fever. At the time he was under 4th dose of Multibacillary. He was admitted and started treatment for reaction. Regular physiotherapy was given, self carewas taught, and he was on the road to improvement. During his stay he shared the teachings of the Gospel with other patients.

105. Twenty eight years old Satruhan Bhaskar lives at the Kachhar Village in Champa with his wife Poona and his three children. Satruhan’smother got cured of leprosy recently, but his father is still undergoing treatment. Despite the leprosy background, Satruhan studied stenography and computerknowledge from Champa Vocational Training Centre and started working as a computer operator where he earned a poor wage. His drive helped him procurea loan from State Bank of India and he has now started a computer institute where he trains students and oers employment while his wife, a trained tailor alsofrom VTC stitches dresses in the village.

“The Mission gave me foothold, the VTC has transformed our lives andwe shall remain indebted to all of them.”

108. 10 year old Baby Sandhiya belongs to the Kodaikannal tribal community. She suered from the rare triple nerve paralysis in leprosy. Thishad resulted in multiple deformities in her hand. In the beginning, she was very scared and was not even ready to talk for assessment sessions. Later she wasmotivated by the sta and the other patients in the ward, and accepted to undergo surgery. Slowly after the surgery she was able to cope up with improvementsand happily enjoyed her stay at the hospital. She celebrated Christmas with the other patients. Before discharge, she underwent wrist drop correction, followedby post operative physiotherapy and occupational therapy care.

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110. “Life has changed. I can now live like any other of mypeers.” says sixteen years old Munni Tete from Lakhimpur, Assam. As anadolescent she developed patches which turned into nose bleed andeventual nose collapse with neglection. With such severe deformity onthe face, she seeked medical advice at Premananda Memorial LeprosyHospital, Kolkata. She underwent counseling and then a post nasalinlay graft reconstructive surgery. As her wounds healed… so did herself condence and belief in a brighter future.

“Life has changed. I can nowlive like any other of my peers.”

109. Satish Selulkar was a young bright student ofclass seven when he was taken sick and diagnosed with Leprosy. Aftertreatment at TLMTI’s hospital in Kothara, Satish went back to his villagein the Amaravathi district of Maharashtra. He wished to continue hiseducation and therefore went back to study in his school. But he washardly welcomed back after the prolonged illness. News had spreadof his disease and everyone in his school was aware of it. The teachersand students objected to Satish’s presence in the school campusand refused to share space with him. He was not allowed to even sitwith the other students in the class. A disheartened Satish droppedout of the school. Under the ‘Catch Them Young’ initiative, Satish washelped in acquiring fresh admission in another school and continuehis education.

111. World Around DineshM M d



Maurya Moved on, as he underwent aprolonged treatment for his type II reaction management in TLMTICommunity Hospital at Naini. He spent years battling the disease but forhis family of six the world literally collapsed. No job, no social protection,no backup plans, the family lived on the verge of hopelessness. Withlittle money to survive their house underwent disrepair and couldn’t

stand the onslaught of rainy season. His four daughters and son hadno one to turn to.

The Low Cost Housing Programmeme of CRP project recognized theproblems of the Maurya family and provided a home. Dinesh was ahappy man upon being reunited with his family with a solid roof overtheir head. With one less worry, it gave him an impetus to go out, takeup work and put together the life that was thrown apart by Leprosy.

112. Lighting Lives

With the festival of Diwali round the corner the residents of IndiraLeprosy Colony, Raipur, painted and decorated their respectivehouses while the streets remained lthy. Challenging Anti-leprosyLegislation (CALL) team members motivated the youth of the colony toclean the streets and led the cleanliness drive by taking up the broomthemselves. The youth immediately swung into action and cleareddebris and garbage and swept the streets to make their colony clean

and tidy. They even went on to help the elderly and the sick to paintand clean their houses. This initiative impressed upon the people ofthe colony that they need to perform their duties as citizens of thecountry, while ghting for their rights.



113. Restoring lost smiles: Education and training helps the children of the Leprosyaffected re-enter society. More than 3000 students from leprosy backgrounds and 250 schools are part ofTLMTI’s education programmes, which focus on sensitization, awareness and bridging the gap betweenthe leprosy affected and the mainstream.



“The Facilitator here has always supported us. He urges us to start some workand get independent. In this condition, no one will buy anything from me. I and

my husband are both helpless. My children are my only hope.”– Sursati Devi, CRP Programme, Nav Nirman Kusht Ashram, Allahabad

114Fi di Th i F t



114. Finding Their Feet

Sursati Devi has lived forty-eight years of her life on her own terms. She lives in Nav Nirman Kusht Ashram with her husband and three children and grandchildrenalong the ghats of river Ganga in Allahabad.

Early in her childhood, Sursati was infected with leprosy. When she was 10, she noticed her feet and hands bending inwards. She never went to school andcarried out odd labour work to support her family in a village in Bihar-East India. Over a period of time, she developed wounds in her feet. Since there was nosensation in those body parts, she would often burn her hands while cooking and developed ulcers in the feet while at work. Once her deformities were severeand visible, the villagers shunned her completely. She was not invited at any socia l gathering and her life turned upside down. For eight years, Sursati Devi facedconstant humiliation in her own village. At that point, she decided to leave the village.

‘If no one wants me around, then it’s better that I leave.’ recalls Sursati Devi. At the age of eighteen, she ran away and came to Allahabad. She wanted to go nearthe Ganga and the rickshaw driver dropped her just outside the leprosy colony. At the colony member’s consensus, she got married to a boy who also hadsevere deformities and was living there.

After a year’s stay in Allahabad, her condition further deteriorated and was advised to go to TLMTI Community Hospital at Naini for her treatment. Her daughter

Kusum was just two and a half months old at that time. She received free medical treatment for her ulcers and spent six months in the hospital. “All my childrenhave literally grown up at TLMTI Hospital. For any medical issues, I would go to TLMTI and always get treated for free.”

In 2010, TLMTI sponsored both her son’s education. Now, Narayan is pursuing 2nd year of his graduation and Raju will complete his class 10 studies. Narayanwishes to take up a government job but Raju is not interested in studying further and soon will be joining TLMTI Faizabad Vocational Training Centre to betrained as an auto mechanic.

Throughout her life Surasti Devi has shown courage in the face of adversity and today that is ingrained in her two son’s, Narayan and Raju,. They have neverbeen ashamed of their parent’s illness and want to get nancially independent at the earliest so that their parents and they themselves stop living on charity..

‘If no one wants me around, then it’s better that I leave.’ recalls Sursati Devi.



“I owe a lot to the doctor, counselor, physiotherapist and nurses here. They lookafter our small needs and always make us feel welcome.”

– Neha, Student, Female Surgical Ward, TLMTI Naini

115G d i th d t il



115. God in the details

Like other teenagers, seventeen-year old soft-spoken Neha had several dreams for her future. In 2012, after her Class 12 exams, she opened up a beautyparlour. Few months later she suered from high fever, contraction in her ngers and pain and swelling in her body. The fever and swelling subsided but the

ngers remained contracted. It became dicult for her to work in the parlor.

Neha and her parents could not pay the loan and rent of the shop and it was closed down. She could no longer hold anything with her hands and discontinuedher studies.

As the condition of her ngers deteriorated Neha went into depression. She would lock her in a room and hide from neighbours and her relatives. Neha hadalways been an active learner and had diverse interest in vocational courses but her condition made her lose her self-condence.

She went to a government hospital and was referred to The Leprosy Mission Trust India (TLMTI) Community Hospital at Naini for surgery. Neha was shocked tohear about her condition. Both her ngers and thumbs were clawed and she could not close her eye lids. Although she had heard about the disease, she wasnot aware that leprosy could lead to physical deformity and disability.

In April 2013, she was admitted to TLMTI Hospital Naini. Several counseling sessions later she was ready for her surgeries. Since April 2013, Neha has undergone6 surgeries with gaps in-between. Both her hands have been corrected and she has also undergone an eye operation.Neha used computer keyboard in the hospital for hands therapy. Today Neha can write well and teaches computers to the patients in the ward. She underwenther last operation- reconstructive surgery of her right foot in July 2014.

Neha wants to complete her college education and take up a professional course. TLMTI social worker is looking at supporting her in this career developmentthrough educational loan and the Catch Them Young Programmeme.

Although she had heard about the disease, Neha was not aware that leprosy could

lead to physical deformity and disability.



“Mujhe kissi cheez se dar nahi lagta hai. It makes me happy that I am able to serve myfellow patients. TLMTI has provided me this opportunity and I have decide to give it my all.”

- Birender Kumar, Ulcer ward patient and a volunteer, TLMTI Hospitals Naini



116. Man of Steel: Energy, Commitment, Fearlessness

Birender Kumar, thirty-ve years old, came to The Leprosy Mission Trust India (TLMTI) Community Hospital at Naini in May 2014 for ulcer treatment of his rightfoot. In 2005, he was injured with a stone in Mumbai. He spent over 2 lakhs on his treatment but no doctor could diagnose or oer him suitable treatment. Ashis condition worsened, the doctors from Government Hospital Jaunpur, Uttar Pradesh told him that his foot will be amputated and referred to TLMTI Naini forfurther treatment. His rst visit to TLMTI Hospital Naini was in October 2013. With the eort of TLMTI doctors and nurses, his foot was saved.

In clinical terms the wounds of a leprosy patient are termed as ulcers. Ulcer dressing is one of the most dicult things in the healing process. MycobacteriumLeprae ( bacteria) causes lesions on the skin and damages peripheral sensory nerves in the body. Once the bacteria damage these nerves, the person losesthe ability to feel sensations in the aected part of the body. Even families of the leprosy aected refuse to clean the foul smelling ulcers often lled with pus.Birender volunteers in dressing the wounds of patients. He spends four hours each day helping the nurses to clean the wounds.

Most of the patients in Male Ulcer Ward at TLMTI Hospital Naini have once been aected with Leprosy. Once a patient undergoes the Multi Drug Therapy (MDT),the disease is no longer remains contagious. Ulcers are a great cause of stress and depression for people who suer with them.

In an environment where most people are burnt out from the hardships, Birender not only studies to prepare for his B.Ed exams but also looks forward to amore secure government job. His stories of being fearless even at the brink of losing his leg, the energy he carries to the wards and the commitment towardshis work are the essential ingredients of mainstreaming eorts.

In an environment where most people are burnt out from the hardships, Birender

from the Male Ulcer Ward continues to study further.



“I got my elder daughter married quickly but I want Ritu to study further andbe independent. Many thanks to TLMTI !!” – Bina Singh, CRP Programme, Nav

Nirman Kusht Ashram, Allahabad

117Nav Nirman Kusht Ashram



117. Nav Nirman Kusht Ashram

Nav Nirman Kusht Ashram is around 100 years old colony inhabited by the families aected by Leprosy. It lies o the main road to Sangam along river Gangain the holy city of Allahabad. Around 55 families reside in the colony and most of them depend on charity by the pilgrims.

Originally from Jharkhand-East India, forty-ve years old Bina Singh came to the colony after her marriage. Bina’s parents were aected by leprosy and shecontracted the disease at a young age. Incidentally, she was married in the family where few members were aected by the disease including her husband.Bina and her husband used to sell religious goods in a mobile cart near the ghats of Ganga. A mother of three, Bina and her husband found it dicult to bearthe expenses and teach their children in the school.

Bina was recommended to go to TLMTI Naini for treatment. The Leprosy Mission Trust of India (TLMTI) runs several programmes in the community to improvethe quality of life of the leprosy-aected person and their families. Bina met James George, Programme facilitator of Comprehensive Rehabilitation Programme(CRP) in 2010. Under TLMTI’s Socio-economic Rehabilitation Scheme (SER), they were provided with another mobile cart and goods like incense sticks, cosmeticsand bangles to improve their income. Income was still meager.

‘Catch them Young (CTY)’ is another scheme that provides nancial assistance to the children of leprosy patients or children aected with leprosy who cannot

go to school due to poor socio-economic background or social stigma. Bina’s elder daughter Guddi beneted from CTY scheme in 2010 and completed hersecondary education. In 2012, Bina’s son Rahul Singh was sent to Vocational Training Centre in Faizabad to be trained as a mechanic. At the same time, Guddigot married and CTY scheme was oered to Ritu, her younger daughter.

Rahul was oered a job in Dehradun through TLMTI’s placement cell and earns Rs 8000 per month. Ritu is now preparing for her Class 12 exams. TLMTI hassuggested sponsoring her for Nurse Training Course once she completes her exam.

Most families in Nav Nirman Kusht Ashram have faced decades of discrimination and need comprehensive approach to return to the mainstream. Apart fromnancial support they often need enabling environment to hold on to opportunities that come their way. Bina realizes that she got her elder daughter marriedlittle too soon and is keen that her younger daughter completes her education, becomes independent and then gets married.

Under TLMTI’s Socio-economic Rehabilitation Scheme (SER), Bina was given a

mobile cart and goods like incense sticks, cosmetics and bangles to sell.

118. 120. 119.



121. Champion of rights

It all started in June 1965, when seven men and eight women settled in a patch of government land, in the backyard of Bhilai city, in Durg District of Chhattisgarh.They all had a common yoke to share – they were all aected by Leprosy, and were cast out of their native villages due to the stigma of leprosy.There was a29-year-old person among them – Shri Vishwanath Ingle. He brought many such people found begging around Bhilai Railway Station to the colony, and helpedthem build their own huts. Asha Deep Colony doesn’t have the stereotypical ‘leprosy colony’ look.

According to Ingle, there are 51 men and 71 women living in this colony now. They have decent, well-maintained houses with all civic facilities; and there is anaura of ‘well-being’ around the colony. As the women in the colony were in the forefront of the movement, the children from the colony have good education,and many of them are well-placed. There are two medical doctors, ve girls working in the computer software sector, 15 to 20 children doing university educationfrom the colony. The present is bright, no doubt, but the future looks brighter!

Never too old to learnKadirul at an adult learning

programmemeInpatient learning programmeme

122



122. Aarti’s story

At ten years, Aarti dropped out of school because she was no longer

able to hold a pen. One day when Aarti was cooking the family’slunch, she was seriously burned by hot water, due to the loss offeeling in her hands. The family assumed that all her disabilities werecaused by this accident.

One day two people in their village, patients at Naini hospital, sawAarti and told her parents to bring her there to receive help andsurgery for her hands. By now, ulcers had started to form on Aarti’shands and she was also in reaction, a condition in which the immunesystem reacts to the leprosy bacterium causing inammation in theskin and nerves as well as sickness and weakness.

Aarti was started on treatment for her leprosy, steroids for thereaction and intensive physiotherapy for her deformed hands,feet and eyes. In seven months, she has successfully undergonereconstructive surgery for her left hand, left foot and both hereyelids. Physiotherapy exercises after the surgery are helping torestore function to her hands and feet and eventually she will havesurgery on her right hand and foot.

Seven months is a long time for an 11-year-old girl to stay in ahospital and she keeps asking to go home. But it is very importantfor her to stay on to complete her treatment. Along with anotheryoung girl in the ward, Aarti helps out the nurses with little jobs likerolling bandages but what she enjoys most is if she can get hold of

a book and read and study. Aarti receives regular counseling too tohelp cope with her loneliness and homesickness.

Once she leaves the hospital Aarti desperately wants to go back toschool and nish her education with help from TLMTI’s Catch themYoung project.

123Grassroot Comic Journalism



123. Grassroot Comic Journalism

Comics can be successfully used as a medium of communicating stories and issues of stigma and discrimination faced by communities and people aectedby leprosy. Using this concept, TLMTI organized ‘Comic Workshops‘ for young inuencers within the age group of 15 - 21years, belonging to leprosy aectedcommunities of North East Delhi.

Over a period of eight days, these four workshops groomed and built skills of 68 young participants. The participants were extremely talented and this workshophelped them to articulate their thoughts through comics which reected in their comic stories and comic characters.

Young people have incredible power to make positive change in their schools, families and communities. This workshop focused on the basics of organizing,building and empowering young advocates: enabling them to voice out their issues relating to stigma & discrimination faced by them.

Every story presented as a comic had a very strong and eective social message which will further help in creating awareness in the local civil society in a veryinteresting way and will also create an impact that will compel the society to reect on the stories and issues highlighted in these comic books.

At the end of the workshop these comics were developed into comic books and are ready for distribution to all TLMTI Hospitals/Units and any other place

identied for creating awareness.

124. Sunita

At sixteen years of age, Sunita loves music and dancing. Her dream is to become a teacher so that she can provide for her family, teach others about leprosyand help others from her own community. Her parents are both aected by leprosy, having high deformity themselves. They fulll their duty of feeding and

educating their two daughters, by begging, which is their only possible source of income.

Sunita in her comic titled ‘Regret’ talks about a member of the community feeling repulsed by a person aected by leprosy. After a few months her son getsaected by leprosy and she regrets her attitude towards the person aected by leprosy and goes on to educate other members of the community.

Sunita felt this workshop helped her deal with her feelings and nd a voice through this medium.





“I don’t want anybody to experience helplessness because of their physicalcondition. The real potential resides in the brain, not in the body,” asserts

national award winner, Suresh Dhongde.

125. Rising Above



Suresh Dhongde is a mascot of successful leprosy treatment. In 2013, he was awarded the prestigious National Award for being a role model in overcomingleprosy. How access to education and good healthcare can change somebody’s life is evident from Suresh Dhongde’s success. At one point of time he wasstaring at the possibility of a life wasted due to Leprosy at the young age of 16 years. Born in Bhalegaon village of Buldhana district in Maharashtra, Suresh

started getting numb skin patches which the local doctor failed to diagnose. In October 1998, the infection reached such a state that his whole body cringedwith extreme pain. He was rushed to the Leprosy Mission hospital in Pune. However, Suresh’s will to live and good medical care helped see him through. Toavail free stay at the hospital, it was mandatory for the inmates to work. Soon, the young man was administering medicines and injections to other patients andin no time became the ward in-charge.

“There’s a lot of stigma attached to leprosy. I decided not to go back to my village as I could not imagine a good future there,” he says. A change in circumstancescame when he was sent for a six-month computer course at an institute run by The Leprosy Mission Trust at Nashik in 2001.What really changed his attitudewas when he saw several leprosy patients getting educated.

With nancial help from The Leprosy Mission, Suresh started attending Class XII at a nearby college on Saturdays. His hard work paid o and he passed with rstdivision. The Leprosy Mission kept supporting his studies and Suresh went on to do an MBA, MA (Political Science) and then a Masters in Social Work.Suresh is currently working as a project manager on a CBM-funded project for community-based rehabilitation of persons with disabilities in the Melghat region

of Maharashtra, India. The region, known as one of the most aected by malnutrition, has given new insights to the 35-year-old. “I have never worked so closelywith the community. Though Leprosy Mission Trust runs a hospital at Amravati district headquarters, it never required eld outreach. Now meeting people andconvincing them to participate in the programmeme has been both challenging and satisfying. People here are reluctant to believe NGOs as so many of thesegroups have failed to full their promises,” Suresh explains.

The project, started in 2011, has reached out to 590 persons with disabilities in 60 villages of Melghat with the aim of holistic development through focus onhealth, education, livelihood, socia l inclusion and empowerment. Through the eorts of Suresh’s team, 500 of the 590 PwDs in the project area have got medicalcerticates, which are essential to avail government schemes and benets.

Awareness to prevent disabilities, medical interventions, aids and appliances, admission in schools, vocational training, self-employment loans, politicalparticipation and formation of self-help groups have been the cornerstones of the project. “Instead of Viklang Jan Sanghtans which are exclusive to personswith disabilities, we have formed Jan Vikas Sanghtans which allow memberships to non-disabled as well. This is to encourage greater participation of personswith disabilities with the mainstream,” Suresh explains.

Today, the 35-year-old is also pursuing a Ph.D in social work besides doing a diploma

in mechanical engineering. Suresh is not only an inspiration to many, but also a worthy

guide to those who desire to follow his footsteps.



126. “The most precious thing to human life is sight. The

government hospital denied me treatment and then TLMTI

hospital oered me an operation that gave me this gift of life.”



127. “Unemployment destroys an individual’s dignity, impairs a man’s self-condence but SKIPprogramme has played a vital role in my life. It has helped discover my untapped potential.” TLMTI has providedNursing Training and placement services to many women across its hospitals. Through TLMTI’s interventionmany have been able to successfully clear the ANM and GNM courses necessary for nursing in India.

128. Magical MDT



At 33 years of age, Seema, from Begampur, Meerut,Uttar Padesh, has been aect by leprosy for the lasteight to nine years. A mother of three children agedthree to eleven years, she keeps her family survivingby collecting rubbish from a landll (ragpicking), whichshe then sells at the market. Her husband abandonedher family about ve months ago after she wasdiagnosed with leprosy.

At rst Seema did not realize she had leprosy. It wasonly when she received a severe burn to her handwhile cooking that later developed into a large ulcerthat she sought medical attendance at a hospital.This is when she was nally diagnosed. She receiveda form of treatment but she is unsure if it was MDT.

Two years ago she went to TLMTI Shahdara Hospitalwhere she was given a full course of MDT for a yearand has since been operated on her hand. She iscurrently an inpatient undergoing physiotherapy freeof charge.

Seema is very happy with the level of service providedto her by the hospital sta. “The hospital sta isfriendly and because of their help I can improve myphysical condition.” Grateful they have admitted her atno cost, regaining movement in her hand means herfamily will not starve. She is illiterate and so believes

that without this job there is no hope for her family’sfuture.

129People need a ‘p sh’



129. People need a ‘push’,

A supportive hand and clear guidance to equip themselves with

technical and lifeskills. Given the opportunity people ae ready toworkin non threatening environment. Through TLMTI’s Vocational TrainingCentres, young adults are engaged into meaningful enterprises andtrained in various livelihood skills. VTCs oer government recognizedcertied courses which meet market demands and the specic physicalneeds of people aected by leprosy.

130. Perspective



130. Perspective

Ashok was an army aspirant. With dreams of serving his country he enrolled into thearmy. But while preparing for military training, an instructor noticed a patch on his

body and referred him to a medic at Seitagarh Hospital where he was diagnosed withLeprosy.

Expelled by his community, it was at The Leprosy Mission Shahdara Hospital in Delhithat Ashok could nally undergo proper treatment. He had become partially blindand the hospital helped restore his eyesight.

Afraid for his future, his uncle oered him an opportunity to learn the trade ofplumbing-carpentry by working alongside him as an apprentice. Although completelycompetent in his profession, his biggest hurdle has been convincing potential clientsof his ability to perform his job. Years of determination and building relationships withsatised customers has earned him a solid client base through word of mouth and

with the Self-Help programmeme, implemented by TLMTI to empower communitiesthrough education, his business has prospered.

TLMTI sponsored Ashok’s business by oering him an interest free loan of 3,500rupees in order to buy necessary additional tools. In turn, he has been able to oersix boys from his community apprenticeships. Education provided by TLMTI throughthe Self-Help programmeme assisted him in applying for a certicate of disability,which allows him to apply for various other government schemes.

Ashok believes that improving outsider’s perception of Leprosy is through the self-condence and independence of leprosy-aected people.

131. Survival with sisterhood I



131. Survival with sisterhood I

Supriya & Poornima are two sisters who were transferred to TLMTI Hospital Naini fromMaharashtra, due to the complicated nature of their deformities. Supriya is the elder oneat seventeen years and was referred with non-healing ulcers in both feet for amputationand prosthetics tting. The team at Naini has been able to save her feet throughexperienced use of plasters, rest, podiatric splints, corrective surgery and antibiotics withdebridement to get rid of the infection. She also has had deformity corrective surgery forboth her hands and is getting training to manage ADL with her deformities and preserveher limbs with special footwear.

132. Survival with sisterhood II

Poornima was thirteen years old when she came to Naini with her sister as her leg muscles required strengthening. She had leprosy 2 years ago and wassuccessfully treated in TLMTI Hospital in Maharashtra. As she had surgeries for both the legs, she was nding it dicult to recuperate and walk again. At Nainishe gradually learnt to walk without aides with sta support and physiotherapy.

133. Beauty is

only skin deep



only skin deep

Neha ran an entrepreneurial venture in her small

town in Northern Uttar Pradesh, about 200kms awayfrom Naini. After completing a Beauty TechnicianCourse, Neha took a leap of faith and opened a smallbeauty parlour in 2012. She took a seed loan froma bank and invested a lot of energy into making herventure a success. The business of beauty suited herwell.

Suddenly she realized, an often ignored white patchhad developed into Leprosy and the tell tale signswere dicult to hide or ignore anymore. Soon herhands started to claw, making it dicult to even

hold a pen. She was unable to continue work andwas referred by the local Government hospital forsurgery.

At TLMTI Hospital Naini, Neha underwent correctivesurgery for her clawed hands and her inability toclose both her eyes. With physiotherapy she isnow able to write quite well and is able to use thecomputer key-board.

Unable to pay the bank loan and rent for the shop,Neha’s mother closed the beauty parlour and sold oall the items. But this has not deterred Neha. Havinghad studied till class 12, She now wants to nishher college education. The entrepreneurial spirit inher is still alive and she plans to do a professionalcomputer course and then seek to re-open a biggerbetter place where beauty will not only be skin deep.

134. Ruby’s cosmetic camouflage



Ruby Raja ran a crèche for one to three year old children in her native city in Uttar Pradesh.She came for right hand and thumb surgery to TLMTI Hospital Naini after having sueredfrom Leprosy since the last ve years. Ruby is a very charming and intelligent lady who

has had been excelling at her work with her one near normal hand. Her smile in face ofadversity and her motivation to work with children is universally admired in her city. Afterher surgery she lost 3cm of the Right Hand Index nger. TLMTI’s Occupational Therapist hasmade a cosmetic camouage latex splint for Ruby. It is very close to the real thing and givesRuby the condence to continue her work. The artistically skilled physiotherapist helped herout by colour matching the cosmetic camouage latex splint

135. Life on rent

At fteen, with his only experience of work being farm labouring, Chotey Lall was forced to fend for himself after being ostracized for having leprosy. He didn’tknow where to start. So, hungry and desperate, he resorted to begging. ‘I felt so ashamed the rst time I begged,’ he recalls, looking at the ground.

Chotey spent two years living on the hand-to-mouth existence, sleeping on the pavements and roaming around in search of food. Alone and rejected he lostsight of any sense of hope. ‘The options for my life were so bleak that I started to think how I could kill myself. I thought about throwing myself under a train.’

The doctor who had diagnosed leprosy prescribed Dapsone for Chotey, but he didn’t take a full course so the leprosy wasn’t properly dealt with. He sueredpainful reactions and felt his body becoming weaker. The loss of feeling had spread to his feet. One day he stepped on a shard of glass. The subsequentinfection meant that he had to have part of his right foot amputated. Already he had the familiar signs of leprosy – slightly clawed hands and contraction inhis ngers: damage that could have been avoided if only his condition had been discovered sooner. Now, he says, he was clearly disgured. He was no longer

welcome in any society. In an instant, Chotey had become ‘untouchable’.

Chotey tried to end his life but was saved by a policeman and was shown the way to TLMTI Naini. Chotey stayed at Naini for around ve years. He completeda course of Multi-Drug Therapy, had his eye operated on due to lagopthalmos and was entered into the vocational training programmeme. He learnt bicyclemaintenance and book binding. While at the hospital he was given small jobs to do around the compound, so felt he was contributing to his time there. Heearned food and soap and clothes. And most of all, Chotey said, ‘the sta showed me a lot of love.’ TLMTI sta is still working on helping Chotey re-build his lifeand nd a vocation of his calling.



TLMTI is in the process of training teachers so that eventually the community will beable to self run the service with qualied teachers who certify in ‘Joyful Learning’.



136. Empowered learning

Sugra, a thirty two year old mother has been living in the Village of Hope Leprosy Colony for last nineteen years. Although she is not Leprosy aected, herhusband’s parents are both leprosy aected.

A house wife, she recently volunteered to get involved with the community pre-school that TLMTI has set up locally. At the moment, TLMTI is in the process oftraining teachers so that eventually the community will be able to self run the service with qualied teachers they certify in ‘Joyful Learning’.

Once Sugra is fully trained, the wage she will earn will be determined by how many children attend. Parents will pay Rs. 20 per day for a child to attend a twohour class. The money will go to the teachers involved in the form of a variable wage.

The classes vary depending on the needs of the children and are lled with activities such as poems, songs, drawing, cartoon shows etc which will help preparethem for school. The syllabus is also exible on the day, depending on the energy level of the children. The age group is three to ve. “Small children are runningabout, their parents not having time for them. I am using my time to try and teach young children.”

Currently the attendance rate of the pre-school is approximately 20-25 children. The school has conducted a survey to locate 3-5 year olds within thecommunity. Sugra’s dream is for the service to expand and for it to cover a large area of the community. She hopes that over time, the children will come tosee her as a parent gure so that she can help guide and inuence their future.

Sugra feels that through the involvement of TLMTI, she has been able to access information that is enabling the parents of the community to be empowered.Parent teacher meetings are an opportunity to discuss benet schemes that they are unaware of because of illiteracy.



“I am very happy with TLMTI Hospital because nobody else had diagnosed mecorrectly until now. I now feel more certain about my future.”



137. Diagnosis for altering lives

Sumitra is an inpatient at TLMTI Hospital Shahdara. Originally from Dehli, she married three years ago and moved to Atrauli, Aligarh, Uttar Padesh to live withher husband’s family. She received an education till she was 10 years old, and is now a housewife. Three years ago, shortly after marrying and giving birth toher rst child, she began to experience her rst symptoms of leprosy.

Two years ago she developed an ulcer on her right foot which refused to heal. Unsure what was wrong with her and afraid, she sought medical attentionimmediately at the Aligarh Hospital where they diagnosed her with TB. They did not diagnose Leprosy and so the ulcer continued to demobilize her. She beganto experience problems in her left foot as well.

Last year she gave birth to her second child, but the child died within a few months. Her doctor at TLMTI Shahdara Hospital is unsure if the death was relatedto her leprosy infection. Sumitra came to TLMTI Hospital two and a half months ago on the recommendation of her father’s friend. This is where she was nallydiagnosed with Leprosy. She is currently undergoing MDT treatment, and has her leg in a plaster cask until the ulcer heels properly.

Although devastated by her last two years and in a state of depression, she is relieved to nally be properly diagnosed and to receive proper care. Her familyhas been very supportive, and she looks forward to returning home once she has healed. Sumitra nally feels she has peace of mind. “I am very happy withTLMTI Hospital because nobody else had diagnosed me correctly until now. I now feel more certain about my future.”



138. ‘I was angry with them – my parents who gave birth to me – theyturned me out of home. They had so much fear that they had no roomfor compassion or love.’

139. “What is love? Does it spread through bloodof relations? Or does it spread through a smile of a stranger?Wh t i i ? I it l f th i il d f



What is compassion? Is it only for the privileged few... or cansome be reserved for me too? “

140. “I am only physically challenged, but I am mentally andspiritually healthy. I have a strong will. A leprosy aected person with a

i t hi d lf d i id li di i d lif ”



passion to achieve and self-condence inside can live a dignied life.”







Timeline Research by: Shyamala AnandTimeline layout and Design: Joanna Davala & Nihal Anand







Documents

Coffee Table Book 140 Years 140 Stories