Incredible 140!

140 years 140 stories

A compendium of stories from the field

(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 field

Foreword
Over one hundred and forty years ago one mans spirit of adventure took him to India - Wellesley Bailey. This young Irishman found his calling here and
the 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 affected by leprosy today has, in many ways, changed from the days in which the pioneers of missionary leprosy work in the
nineteenth 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 approach
towards treatment and rehabilitation was adopted.
More recently Leprosy has been reported to have been eliminated as a public health threat but with Indias sheer magnitude the numbers of leprosy
affected 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 addressing
this 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 them
out of oblivion... there is still a long journey to be traversed. With our Lords help we shall labour on till the scourge of leprosy is completely eradicated.

Mr. George Koshi

Chairman, 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 development
as an organization working with and for people affected by leprosy and their communities. As the largest NGO in India working in the field of Leprosy, we
address 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, Uttar
Pradesh, 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 of
people affected 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 reader
glimpses of our history, our work and the people who have been touched by the Mission and also to appreciate the many people who made this
documentation possible.

Dr. Sunil Anand

Director, TLM Trust India

Afroz loves doing embroidery work;

a skill she hopes will bring back colours in her life and to many others.

. Colour of Empowerment

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 was
quite difficult 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 the
beedi 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 TLMTIs livelihood programmes, Afroz received hand-embroidery training from Wellesley Bailey Vocational Training Centre (VTC) at
Faizabad. After the training, she worked for a year. The programme could not sustain itself and the work stopped, so did her earnings. Afroz was quite
disappointed 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 is
still 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 offered her a job of a
trainer. This time, TLMTI aimed to make it sustainable by setting up a Chikan embroidery unit that linked them to the local markets, Lucknow being the
nearest always has huge demand for Chikan embroidery workers.
It was a challenge for Afroz to find likeminded people who wanted to learn and work with her. The course started in July 2014 and at present there are
12 girls and women learning Chikan embroidery. Two of her students come from leprosy-affected 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 a
graduate and wants to pursue Masters in future.

We all are very excited by TLMTIs 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 fighting for their
basic right to life since the last
three decades. After a diagnosis
in 1983 in Gorakhpur confirming
Leprosy, the Thakur family left
their farming to move to the Village
of Hope Colony in Delhi. Their
mainstay became begging and
ends became difficult to meet. In
stepped the The Leprosy Mission
Trust India Shahdara Hospital.
Handcrafted walking shoes were
developed for Satyanarayan to
help protect his soles from cuts
that may develop into ulcers if not
cared for properly at the hugely
subsidized cost of Rs. 250. Also a
tricycle was made available to him
thereby increasing his mobility,
ensuring confidence and opening
up possibilities galore. Now
he can wish for his children to
move out into the world. TLMTI is
networking through NGOs to help
the Thakur family access funding
in order to improve their standard
of living. Now he is a man of
big dreams.

3.

5.

But for
TLMTI, I would
have been
begging for food
on the streets of
Sultanpur

Catalyst for Change

Pooja Devi, takes her duty as the president of the

CBO in Brahma Vihar Leprosy Colony in Bilaspur
seriously. So far, through her efforts, 20 people
have got benefits of Antyodaya Anna Yojana (AAY)
scheme (a government-sponsored food security
scheme), 15 people have got old-age pension,
and 30 people have got smart cards for accessing
health benefits.

4.

Sreedhar Ratre

Earlier I didnt know about my rights and

entitlements as a person affected by leprosy.
Because of this, others exploited me. But after
having received training about my rights from
CALL (Challenging Anti-leprosy Legislation) Project
of TLMTI, Im aware of my rights and entitlements.
Now I know whom to approach to access my rights
and Im accessing them too.

Mr Sreedhar Ratre, leader of the advocacy

group facilitated by CALL Project in Brahma
Vihar Kusht Ashram, Bilaspur, Chhattisgarh.

Sofia Bano hails from Murthi Purua village,

in Sultanpur district, Uttar Pradesh.
Diagnosed at 20 years with leprosy,
she underwent extensive treatment for
complicated ulcer, reconstructive surgery
for correcting foot drop and clawed hand.
Thereafter she received tailoring training
at TLMTIs Wellesley Bailey Vocational
Training Centre, in Faizabad and under its
placement programmeme, arranged for her
employment in a garment export house in
Chennai. She presently earns Rs 8,000 every
month.

Few patients (later) share their experience of teaching their children in the village, reading
the 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 some
of the staff members in the hospital took sewing classes from her. In 2011, she first visited TLMTI Naini to accompany her cousin for child delivery. Little did
she know that it would change the course of her life when she was requested by the hospital staff 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 first few visits were full of fear and
anxiety. She had taught before but never in a hospital surrounded by people with deformities. Most of the patients had suffered rejection, abuse, loneliness,
isolation and broken relationships - the stigma of being affected 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 fact
that 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 one
by 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 least
3 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 and
was inspired to see many others studying around him. He has started his studies again and his time flies 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 fingers find it difficult to
write 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. Sairas efforts have given them a sense of self worth and a hope to look forward
in 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, who
visit 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 not
have 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 Leprosy
Mission Trust India is all we have. It helps give us identity to be acknowledged, voice to be heard and
rights to be demanded.

My handicap emerged as a new purpose in life; to fight for my rights

and 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 Rashtriya
Viklang Party (National Handicapped Party) Buxar district, Bihar.
At the age of fifteen, 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 developed
into 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 to
several doctors both private and government spending a lot of money but his foot condition kept on deteriorating. In 1985, seven years later he was diagnosed
with 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 below
knee 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 Devis
parents persuaded her to separate from her husband and get married again. She simply refused and since then has not gone to her parents house who live
nearby 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 Lalji has worked as a care taker in the fields and
his wife worked as an agricultural labour. With meagre earning it was difficult for him to support his childrens education. He regrets it till date.
Three years ago, Lalji Sah joined Rashtriya Viklang Party and became a member. He fights for the right and entitlements of handicapped and marginalised
community 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 Officer (BDO) and District Collector with his demands. Now at fifty-five, he has visited TLMTI hospital at Naini
again 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 immensely
improved.
My handicap emerged as a new purpose in life; to fight 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 fight 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 make
a 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. 25
with them, and this money is collected and deposited into the groups bank account. Twenty five rupees is a lot of money for these women, who have battled
poverty, stigma and disadvantage. Six of the women have either had leprosy themselves, or one of their parents had leprosy. The other group members are
desperately 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 member
who needs to borrow the money repays the loan at 4% interest. The group members decide amongst themselves who needs the money and approves each
loan. The amounts borrowed seem small, but it can make a world of difference, especially to a family who lives so close to the poverty line.
Moreover there are greater consequential benefits of such groups. There is friendship and support for the lonely ones. There is acceptance from the wider
community and a breaking down of stigma and community prejudice. And there is growth in confidence and self-esteem as these women take hold of their
own destinies and find 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-economic
rehabilitation through SHGs (Self Help Groups), helping more than 3,700 households develop self reliance and scale up their livelihood initiatives.

11

. Housewife to

Bread-Earner

Asha with a loan of Rs. 2,000 from the SHG fitted

a hand pump inside her house thereby drastically
saving the time taken to walk miles every day to get
water for washing, cooking and cleaning. Now she
invests the time saved in earning a supplementary
income for her family.

14.

12

13

Kismata borrowed Rs.15,000 and bought

a machine to cut grass and leaves that she
previously spent hours cutting with her hands.
The buffalo now has more food and Kismata
has more time and energy for other income
generating work to support her family.

Vedprakash, the only male member, used a

startup loan of 10,000 rupees to establish a
grocery and clothes outlet. Hes turned the
shop into a success and is on the road to
becoming self sufficient. One day he promises
to return the faith reposed in him by the SHG
members.

. Channelizing

Efficiency

. Startup

Investments

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 battling
Leprosy, Paralysis and Tuberculosis. In the Snehalaya, the uneducated Hansi made friends with other patients and spent her time learning to read and write
from 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 wasnt
any available. She was encouraged by the pastor and other local preachers and they helped her by providing appropriate reference books for her. After a
rigorous two years of concentrated work, Hansi was able to finish her translations. The Kumaoni Literature Society of Almora showed interest in her work and
asked their proof reader for copy editing Hansis work. The Bible Society of India lent their support to this one womans initiative and about 2,000 copies of this
mini-Bible (Selected works from Bible and stories) were printed. A big opening ceremony took place at the The Leprosy Mission Trust India Hospital at Almora
and the copies were distributed in the various local churches.This brave lady made a valiant effort to put the ghosts of her past behind and work for the benefit
of the people of her region. She thanks the Almighty for his grace and TLMTI for their support.

15.

17.

Abandoned due to leprosy at the young age of 23

years with two toddlers in her arms, Denkana Seetha
today has come a long way. Today she runs a small
tailoring unit of her own and holds sewing classes
for about ten students. All are girls between the
ages of fifteen 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 machinesone for
general sewing / tailoring, the other for embroidery,
both from loans by TLMTI. The training did not just
change her life but of so many others through her.
She is TLMTIs ambassador for change.

A student at the Vocational Training Centre (VTC)

run by TLMTI in Faizabad, 22 year-old Neeraj had
to leave his job at a gas agency in Lucknow after
being diagnosed with Leprosy. After undergoing
treatment he was connected with the VTC where
he joined the tailoring unit. He was trained in
designing, cutting, sewing, and embroidery. He
was also given the basic skills of running his own
business with account keeping and customer
relations. This disease has changed my life and
fate for good. Though I am still on medication,
I am happy and sure that after completing my
training I will be able to run my own work and
provide livelihood for others by giving them work
in my shop. I want to be a successful tailor and
be an example for others as a leprosy affected
person.

Setting
Examples

Ambassador
for Change

16.

Heartfelt
Thank-you!

Pappathiammals dream was to have a proper

house rather than a shack which flooded in the
monsoons. Through the support of TLMTI this
dream turned into a reality and last year the family
moved into their new home with a job for her
daughter, which puts food on the table. Before
every meal they pray and say a thank-you to the
TLMTI - supporters in the UK who made her dream
possible.

18.

The TLMTI

EDGE
Self stigma comes to haunt the leprosy affected
and impairs their power to reciprocate love.
With about 97% of the inpatients at
TLMTI hospitals battling leprosy related
complications, it becomes important to cross
this hurdle of self stigma. The hospital staff
needs to make sure that leprosy patients not
only feel welcome but also accepted. This
makes a big difference in the attitude of the
patients towards themselves and aides in
better recovery.
At every level; whether it is the sweeper or
the warden, the nurse or the physiotherapist,
they treat the patients with utmost respect
and love. They touch them and talk to them.
A gentle touch and a caring word goes a long
way in instilling back some self confidence.
A leprosy affected person comes to TLMTI
after being often abandoned from his home
and society. The hospitals become a second
home and the staff a second family. The
TLMTI edge lies in ensuring that this new
family is able to help the person become
whole and accepted again. The nurses are
always around serving with patience and care.
Working tirelessly towards a society free from
the stigma associated with leprosy starts at
TLMTIs own institutions.

19.

Back to
school!
I was affected with Polio since I was a
kid. Both my lower limbs were affected.
When I was younger, my parents used to
lift me and take me to school. However
as I grew older, I stopped going to school
because it was difficult for my parents to
carry me to school every day and it was
embarrassing for me as well. Through
local networking my parents got to know
about the local advocacy federation
facilitated by Disability Rights through
NGO networking, rights based project
in the district of Thiruvannamali (Tamil
Nadu) and we became members of that
federation. Since then, not only have I
received a mobility aid which enables me
to go to school again but it has brought
much dignity in my life. As members of
this advocacy federation, we are now
aware of our rights and also have been
able to access various benefits for people
with 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 Dhani
Ram for whom the TLMTIs Snehalaya at Faizabad. Snehalaya has been a home since 1984. It totally shattered my world and
all the hopes for my future were in ruins. The love and care I received from the doctors, nurses and other staff here at the
Care 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. Ive learnt to survive, he says.

21.

TLMTIs fourteen Tertiary Leprosy Referral Hospitals aim at early diagnoses

and management of leprosy and its complications through specialized care, functioning
effectively within the referral system of the general health care services, so that people
may 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 day
when 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 five sisters. Her three elder sisters are now
married 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, TLMTIs first batch of tailoring started under Community Based Vocational Education Training (CBVET) programme in Badegaon. Fifteen students
attended the course, Rizwana being one of them. She learnt tailoring for 3 months paying a total fee of Rs 75. (CBVET programme offers concessions to those
coming 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 have
increased three times, she is unable to save much.
Her younger sister Farzana is getting financial assistance under TLMTIs CTY scheme since Class 3 (CTY project works with families affected by leprosy to address
the educational needs of children help them access mainstream education). Wellesley Bailey Vocational Training Centre (VTC) at Faizabad is planning to provide
her vocational training once she finishes 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 five 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), fifty-year-old Baiju, now lives in TLMTIs Snehalaya at Faizabad. Baiju used to sell fruits
and 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 fifty threads are required to weave thirtysix inch fabric that is used for making handbags. The students find it difficult and do not enroll for the course. He silently spends his day on the handloom
working 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 office. Baiju earns around four hundred rupees a month that he feels is sufficient to cater to his needs. I do
not miss anyone from home. My brother comes and sees me barely for five minutes. Hospital is my only family and they have supported me through thick and
thin, 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 have
been living on charity . . . and then the transformation happens. At the end of the year when we
have our farewell, they are much stronger and look so confident. 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 significant physical and emotional changes and the manifestation of leprosy during this period adds to that stress, especially with
girls. 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 four
sisters. Savitris 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 a
contractor 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 fingers was amputated. Physical deformity was a setback for Savitri. She avoided meeting people and went into self-pity. Her
family motivated her to continue her studies and she completed Class 10 in 2012 through distance learning. Savitri has faced difficult times since her mothers
death. 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 offered her the
environment to think beyond the difficult times, learn and look forward in life. Its been a year and she has completely moved out of her state of self-pity. She is
social, diligent with her training, wants to start earning and share her brothers responsibilities.
Wellesley Bailey Vocational Training Centre (VTC), Faizabad was set up in 2002 to provide technical and life skills to adolescents from leprosy and disability
backgrounds. VTC is now taking regular students too, so that the leprosy affected students are familiar with everyday life when they go out to work. In the
process, the students are also oriented on the myths surrounding the disease and the institutions 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 where
people 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, wear
clothes 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 (Womens Empowerment Project that seeks to facilitate the
socio-economic and political empowerment of rural women) since it started in 2009. Kiran, twenty-eight, is a dropout after finishing high school. Like other
women in the village, she got married and was confined to the home, cooking and taking care of the family.
Kiran Devi stepped out of the house for first time in 2009, to appear for an interview for the post of volunteer for TLMTIs 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 for
the interview and cooked food in a separate kitchen that night, recalled Kiran Devi. Inspite of that, Kiran decided to take up volunteer position.
TLMTIs Women Empowerment Project (WEP) is running in 20 villages of Fatehpur Block. In each village, women volunteer plays an important role in creating
awareness on several issues like health and hygiene, rights and entitlements of women, accessing government schemes, vaccinations, ration card, giving
information to pregnant women, awareness on leprosy disease (symptoms and myths), identifying new leprosy cases and leprosy affected families, providing
information on TLMTIs 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 from
leprosy-affected 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 financial 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 financially supporting her husband Ram Kishans 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 all
women to be independent like me.

I want to do something for women in the village. Those living in mud houses should get pucca ghar under
Government 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 it
all from doctors, nurses, staff and patients. I am happy and contented here.
Uma Devi, TLMTI Snehalaya, Naini

27.

Umas 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 already
late and the disease had aggravated. She developed clawed toes and hands.
Uma devis 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 the
house. She lived in her mothers 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. We
used 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 to
Varanasi 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 with
thirteen 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 a
second chance to live her life with grace and dignity.

28
. It Feels
Nice Having My

Own Rickshaw

Dipnarayan has achieved financial security with

TLMTIs Community Based Rehabilitation Project.
Working as a labourer for the Food Corporation of
India in Assam, Dipnarayan had started to notice
the telltale signs of Leposy on his foot. He became
weak, lost sensation in his foot and began dragging it
along the ground. The disease made me weak and I
couldnt carry the boxes on my head, he says
A traditional healers medicine further escalated his
problems, burning the skin on his foot. Eventually
he made the decision to return to his home town of
Muzaffarpur and visit TLMTIs Muzaffarpur Hospital
for treatment. Some village people told me about
the hospital. I got shoes and medicine; my wound
healed, he explains.
Having lost his earlier job, he took to pulling a rickshaw,
but he had to pay money to the rickshaw owners so
at the end of the day he wouldnt have much left to
buy food for his family. TLMTIs Community Based
Rehabilitation Project offered Dipnarayan a loan to
buy his own rickshaw. TLMTIs Community Based
Rehabilitation Projects help people improve their
economic status through initiatives like savings
groups, vocational training, or by providing small
loans. Today, Dipnarayan has more independence.
Now, I dont need to pay out because its my own
rickshaw. It feels nice having my own rickshaw, he
says happily.

29.

Puran Massi

He is a poor farmer from the village of Khajurawar

in Faizabad. He was trained to be a tailor at TLMTIs
VTC at Faizabad. He supported his wife and five
children by running a small tailoring business from
a rented shop. This did not prove to be sufficient
to meet the expenses of the large family and the
children had to discontinue their education.
In stepped the Community Rehabilitation Project.
Puran Massi was provided two machines: a sewing
machine and an interlock machine. Two of his
children who were of school going age were
helped with admissions and fees. Now the family is
achieving self sufficiency and living a life of dignity.

30.

Kisan Chawan

He underwent a year long treatment for MB for

Leprosy in 2001. After being cured, he was given
a loan of around Rs. 10,000 to purchase goods
and set up a general merchant shop of his own.
The village had only three shops catering to its big
population and setting up a shop proved to be a
good investment. Initially, Chawan used to earn
about Rs. 30 per day but now with his new shop
he earns around Rs. 70 per day. The work is less
stressful and gives him a chance to socially mix
with the community. Initially there had been a
strong stigma in the village over Leprosy but due
to the consistency and hard work of the TLMTI
staff the general understanding about the disease
has increased. Chawan can now live a life of social
inclusion.

31.

Ratni Devi

Her smile is genuinely huge each time. She was

only 15 when both her legs were amputated
because infections caused from unhealing foot
ulcers had penetrated to her bones. Recently
TLMTI intervened by helping Ratni network with
Rotary Vikland in order to receive two prosthetic
legs free of charge. TLMTI has also recently
helped repair damages to the prosthetic limbs.
Now she can move about more easily and is
less dependent on a tricycle to get around. This
new independence gives her every reason to
be all smiles.

32.

The patients usually do not know much about leprosy... the stigma against it stops flow of
information and awareness.

33.

Who knew I could one day create magic with my hands... these very hands
that 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 early
childhood, Gajanam had a number of degrees under his belt, a Diploma in Education and a Bachelors through Distance Education. Despite being well
educated, he found physical barriers in finding a job. He got in touch with TLMTI Hospital at Kothara and was selected to be a trainer. Today he works across
10 villages with 111 people. He has motivated many people living with disabilities to gain confidence 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.

Gokulans
Independence

28 years old Gokulans legs are paralysed

and the muscles wasted making him unable
to walk. He is the president of the selfhelp group (SHG) that was set up by TLMTI
volunteers in the village. Through this SHG
he has been able to receive his disability
pension from the Government and also a
loan to buy his own cow.
Gokulans independence is not mired by
his self-consciousness about his disability.
He sells milk from his cow and also teaches
mathematics at the village night school.
TLMTI has provided him with a tricycle,
which gives him greater mobility, freedom,
independence and self reliance. He dreams
of a future where he would get married and
start up a successful milk diary business with
his friends from the SHG.

The Mitanins are a network of 60,000 women community volunteers formed in 2002 to
act 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 a
simple ritualistic ceremony, and from that time onwards they become Mitanins to each other. According to the custom, any girl can always count on her Mitanin
in times of need. Sukh me sabiya, dukh me Mitanin (during happy times everyone supports but during difficult 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 financial support of the European Union, a network of 60,000 women community volunteers
was formed in 2002, and they were called Mitanins.
In Chhattisgarhs health system, Mitanins are Community Health Workers (CHWs). Their roles include providing elementary health education; providing first aid
help and supplying over-the-counter drugs; treating minor ailments; giving referral advice, wherever necessary; and they play a crucial role in the community by
setting up womens 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 Mitanin
Programmeme is run by an autonomous State Health Resource Centre, which is parallel to the State Health Department.
Mitanins dont get salaries. They are given cash incentives for specific tasks. For example, they are paid Rs. 300 for every Paucibacillary Leprosy case they refer
and 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 of

athletes with physical impairments through the PARTI project.

37

. Indias 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 introduced
on 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 physical
impairment 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). This
project 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 to
showcase the talent of such special athletes.

38

. National Team for Boccia

TLMTIs PARTI project in Tiruvannamalai is working on developing a national team for playing Boccia (pronounced Bot-cha). This is a Paralympic sport which
was introduced in 1984. It has no Olympic counterpart. It is designed specifically for athletes with a disability affecting 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 in
swimming championship in Para Olympics and also a champion who has overcome paraplegia, is promoting disability sports among many other innovative
ideas for persons with disabilities and guiding the project on how to develop the national team.

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 difference 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 to
be 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 proved
to be a big shock to the family and left the girl upset. Timely medical care and full family
support helped Anju continue her education. But with time she developed claw hands. She
was referred to The Leprosy Mission Hospital at Naini for reconstructive hand surgery. After
the surgery there was a major improvement in the strength of her hand because of effective
physiotherapy.
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 instructor
at TLMTI VTC Faizabad. Her interest in further studies was supported by TLMTI and she
went on to complete her graduation and Masters in Business Administration in Finance and
Human 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. She
has 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 insufficient 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 work
skillfully 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 society
with 21 members that became defunct due to lack of cooperation and unity. TLMTIs SSHG Project helped them form Self Help Groups and revive the society
with even more members five 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 bigger
market and demand. Raw materials are provided by the state level apex society that also buys back the finished product. Volunteers look after the training and
progress 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 much
more self sufficient life.

We did not have regular work earlier and had to look for odd jobs. Now we have
a 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 unique
craft of bead making. During marriage ceremonies the special black (small) bead are worn to mark the event. Discussions with the community revealed that
forming all the bead workers into a producers cooperative/associations/company would benefit the entire community as well as provide adequate income
to the artisans who are differently abled. The formation of the same was aimed to produce high quality natural wooden beads as the end product. The
participants were trained on newer skills and techniques involved in bead work using different beads, colors, and designs and now the artisans are able to
produce 13 varieties of necklaces and beaded jewelleries.
The project has made sincere efforts to create links between the bead worker community with South India Scheduled Tribes Welfare Association and the market
place.

43

. The Weavers of Kurinchipadi

Handloom weaving is still a household industry as well 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, the
families 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, poor
working conditions and the gap between the market and the weavers.
The TLMTI project tried to counter the problems with skill enhancement and diversification 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 staff of the CRAFT
project (Centre for Rehabilitation Towards Artisans Fair Trade) to develop marketing and promotional material. Products like cushion covers, aprons, curtains
and apparel are being developed and a tie-up with Fabindia (Fabindia is an Indian chain store retailing garments, furnishings, fabrics and ethnic products
handmade by craftspeople across rural India) resulted in the successful implementation of their first big order production. All in all, the project has developed
a good rapport with local societies and has improved productivity fulfilling 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 differently abled sea shell workers to help them gain confidence over their skills.
The participants were trained on selection of raw materials, usage of electric gun, product designing and finishing,
importance of team work and production, labeling, packing and forwarding etc. The participants learnt about seven
different models of products that have ready markets. They were also taken for exposure visits and put in touch with
potential buyers.

45

. Brooming Business!

It takes time to count the number of brooms at Urmilabais house. The SHG which was formed in her colony gave Urmilabai new ideas for making a living and
supporting the family. Urmila took a loan from the SHG and started off the broom business at home. According to her, the market is steady and there are regular
orders from clients. She is able to make a profit 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 werent sure how much difference
it 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. But
many factors have led to the decline of this art form. Mainly high cost of raw materials, trade controlled by merchant and manufacturers / exporters, powerloom
polyester materials replacing cotton fabrics, too many intermediaries, low wages fixed by societies and policies not favoring to the primary producers, high level
of indebtedness, decreasing opportunities and poor working conditions are only few of the problems.
The differently-abled artisans were grouped together by TLMTI and along with a product designer were trained in using various yarn counts, exposed to different
colour combinations and textures in production and learnt the types of reeds and usage. They also were trained to understand the designers specifications
and work independently. Easier supply chain of raw materials was established and measures were taken to reduce the production time thereby resulting in
increased 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. The
products 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 differently-abled artisans.

Initially Pugalenthi did not show the confidence and was very disheartened
with 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 had
very 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 with
Infantile Paralysis and has a shrunken leg. Denied the family profession, he tried to involve himself in studies but had to discontinue the same after fifth standard
as 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 staff identified and motivated him to take up his family enterprise. In the beginning, Pugalenthi did not show the confidence and was very
disheartened with his problems in mobility. The project staff encouraged him to start with small products like a cross, wooden boxes, bee house etc. He was
paid for his work. Later, he was invited for attending a design and product development workshop on carpentry product where he met other people with
disabilities who were also carpenters with assorted skills and facing similar constraints in life. There he was introduced to the possibilities that lay ahead of
him and was trained in using various machineries which make the work easy and help overcome problems of mobility. He was also trained to produce quality
products.
The first batch made by Pugalenthi were distributed as samples to a few buyers in Chennai and New Delhi. His products were appreciated for quality and
designs. After couple of months, a work order for Rs 6.5 lakhs was mobilized by one of TLMTIs partner. Pugalenthi soon realised that he could not do the orders
alone and made a team with four more workers - two people affected by leprosy and two people affected by polio. He trained the other members on finishing
and handling work as the production processed. The project also helped them to identify a space to work. They have completed their first work order and
delivered 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 handicraft
by people with disabilities but also helped them achieve self sufficiency 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.

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, a
local activist, got the SHG registered with the Government of Chhattisgarh. After the formation of the SHG, 20 women from the colony, under Ingles leadership,
approached the District Collector and requested for training to set up a weaving unit in the colony, under the Governments Rural Livelihood Scheme. Their
advocacy worked, and the collector immediately made arrangements for their training at the district headquarters, in weaving, and sanctioned Rs 50,000, for
training and other needs. With TLMTIs active support, 20 women from the colony underwent three-month training in weaving. The modus operandi is that the
Government supplies the SHGs with raw materials and the SHGs weave dharia and kambal and other items on job work basis, and the Government pays them
for the job work.
Presently, there is work available only for five months in a year, and the SHG is advocating with the Government to provide work for all the 12 months. It is
encouraging 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 patches
on her skin and went to a number of doctors before leprosy was finally diagnosed and treated. Tragically she did not realise the importance of finishing her
medication 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 Jyothis leprosy was lowering the family s reputation. They believed they would not marry
well 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 ended
up 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 trains
people affected 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 of
poverty. 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 make
this 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 benefit of forming the

society? Prompt comes the reply, As individual or a
small group we could not afford leasing a pond or taking
it by tender. Also the work and labour is comparatively
less and the profit is good.
The Tulshi society was formed on the 5th of November
2010 with 50 members from three SHGs-Navin, Naikiran
and Unnati. The society has four ponds, taken by tender
from the local Panchayat. Three of the ponds have areas
between 7 acres to 16 acres. One of the ponds is a
rainwater fed dam and dries up in summer. This dam
is taken on a five year tender for Rs.50,000. The society
has taken a loan for Rs1,00,000 through the fisheries
department. Baby fish of Rohu and Katla breeds cost
about Rs.1,700 per kilogram and can give grown fish
worth Rs.35,000 after five months. In a month about 6
quintals of fish can be sold through the weekly market.
The culture at the ponds is to be constantly watched
especially during night. Members who live nearby the
ponds do the night watch.
All the members of the society get a labour for four days
a month for the harvest, at the rate of Rs.150 per day and
a share of the profit. Last year, the profit distributed was
Rs.5,000 per member.

51.

Re-tuning Life

Tavita Raju, from Vizianagaram district of Andhra Pradesh, is a disabled Polio affected artisan who worked as a labourer. It was found by project staff of TLMTI
that 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 teased
about 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 different patterns. The samples
made 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 new
patterns 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 Andhra
Pradesh 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 building
the 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 for
himself.

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 Missions Bill Edgar Vocational Training Centre
in Bankura, West Bengal. Samil came from a leprosy-affected background and thereby received free accommodation and training. Further upon graduation as
a qualified motorcycle mechanic, he was given the startup loan of Rs 100,00 to open a small motorbike repair shop at his village.
Samils 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 fire and Samil lost everything he held dear. Unable to concentrate on work and suffering 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 and
running 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 shop
on 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 a
good move and today, Samil has a constant flow of customers seeking his expert skills as a motorcycle mechanic and he runs a thriving business. His is truly a
story of transformation and typical of what can be achieved with The Leprosy Missions support.

53.

Ice Candy Wallah

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

54.

Anandhis 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 helping
people with disabilities to access their entitlements, but is also supporting widows and other people from marginalised groups within the community. TLMTIs
vocational training support has helped her broaden her horizons and she has used her new income from tailoring to enrol herself on a computer course
so 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. She
is determined to access the government reservation for people with disabilities and get a government job. This determined and capable lady has already
registered at the employment office and is striving to achieve her dreams.

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 mother
experienced deformity in her hands. Sima was diagnosed in time and was not left with any lifelong deformity. But the family was thrown into financial chaos.
That is when TLMTIs Catch Them Young programmeme stepped in and took care of funding her education. Today, at 21 years, Sima is completing her Bachelor
of Arts degree and aims to be trained as a nurse to be able to serve the society.

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 of
being unwanted, uncared for, and deserted by everyone. At TLMTIs Snehalayas or Care Homes,
the elderly reclaim their place in society with dignity.

I would cry for several nights, fearing for my daughters 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 Komal
developed patches in her left arm and noticed numbness in her two left fingers one year ago. She was scared and told her mother about it. I would cry for
several nights, fearing for my daughters 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 finds time, she attends the awareness camps. In one of the
camps, she heard about leprosy and its symptoms and treatment. She shared her daughters condition with TLMTIs local volunteer. Komal was then taken to
the 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 was
taken to a private practitioner. Komal underwent 6 months of treatment.
Anitas presence of mind and her knowledge saved her daughters hand. Although uneducated, Anita used the information and was benefited from it. Leprosy
is a disease that generates fear in the society as a mutilating, disfiguring, contagious and incurable disease. It has perhaps been a highly stigmatizing disease for
centuries because it causes physical disfigurement 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 objectives
of TLMTIs Women Empowerment Programmeme (WEP) is to spread awareness on the disease and its early diagnosis. The awareness on leprosy is spread
through magic shows, organizing leprosy camps, video shows, one to one interaction with TLMTI volunteers and SHG meetings. Since 2009, 68 new leprosy
cases have been detected through WEPs 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 daughters hand.

TLMTIs 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 their
rights and entitlements through community outreach programme. - Sanjay
Verma, 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 Indias (TLMTI)
intervention in the village has brought a notable change amongst women. Earlier women in the village were subjugated and mainly confined to the four walls of
their home. Work outside the house was taken care by the male member of the family.
TLMTIs 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 their
rights 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
(SHGs) have been formed that represents the strength and unity of these collectives. They have been also engaged in income generation programmes making
them independent financially and also in their thought process. There are 11 SHGs in our village. An advocate of equality, Sanjay Singh does not believe in
discrimination 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 that
guarantees 100 days of employment to the rural population). The attendance of women in the Gram Sabha meetings has increased over the years. I am proud
to say that almost every woman in the village can at least sign or write their names. The credit goes to TLMTIs Adult Literacy Programme initiative, says Sanjay.

60.

TLMTIs Low Cost Toilets

Sanjay Singh has also attended TLMTIs Low Cost Toilet and Sanitation trainings in TLMTIs Hospital at Barabanki Hospital. He shared this information with the
Block Develpoment Officer 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 TLMTIs toilet model. Labour payment will be made under MGNREGA and the cost of the materials will be
taken 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 difference 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 bricks
of 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 formed
in 2006. It received a loan of Rs.12,000 from the project and the group started vegetable cultivation as their collective income generation programmeme. A
couple of the members husbands were also helping them in the production. Ramgopals experience in baking bricks came as aid to the group where his wife
Gauri is the President. Two of the members offered 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 Development
Office 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. This
year 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 also
used 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 good
cooperation, 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 the
trade. Many of his peers had to leave the village during off agricultural seasons, seeking labour opportunities in other cities. Today, Ramgopal is busy with the
unit 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. This
has 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 village
for 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 fighting a troubled depression
after being unable to keep up with his job. The stigma associated with leprosy was so deeply
embedded that Sudhi Ram feared its diagnosis. So despite signs and symptoms, he only seeked
natural remedies and not a proper medical treatment. He would cover his wounds and bath
quickly to avoid other people seeing it. When his condition only detoriated further, after about
two years, he was referred to the TLMTI hospital for MDT where he also found out he was
suffering from Tuberculosis. Unfortunately, like so many leprosy sufferers, his limbs and eyesight
were permanently damaged as a result of not being diagnosed in time. He lost his fingers and
some mobility in his hands which made eating and picking objects difficult due to damaged
muscles.
Losing control over his life and body put Sudhi Ram into chaos of despair. The disease which he
had stigmatized against had taken him into its clutches. But with the support of TLMTIs social
workers, Sudhi Ram soon realised that there were much more badly affected cases than his and
the stigma and discrimination were unfounded. His counselling worked in association with the
community development project which helped bring him back into the mainstream. He found
a new hope for life, courage to overcome his circumstances and a desire to help others. Today
Sudhi 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 in

Raipur district, Chhattisgarh. The 25 women members of this group were unskilled agrilcultural labourers with half of them affected by Leprosy or differently
abled. TLMTI faciliated their training through the Weaving Cooperative society, Government of Chhattisgarh.The Government provide them with four looms for
the 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 also
roped in and he provided the Panchayat Bhawan (Panchayat hall) to install the four looms. All the women work on the looms shoulder to shoulder, thereby
decreasing marginalization and discrimination.

Financial peace of mind and control of finances help bring happiness and closer bonds for the
marginalized families

65.

Financial Security Blanket

Joining a self-help group increases her familys financial 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 suffered from fever which paralyzed parts of her body. Polio left her left leg completely disabled. Married
to a Leprosy affected man and disabled herself, she heard of the Leprosy Mission Trust India 7 years ago through friends when she joined the SHG formed by
TLMTI.
Every month the members contribute a small, equally set amount towards the joint savings account which is managed by an elected member. When a member
runs into financial difficulty or needs to borrow money, they discuss the financial matter within the group. The group decides collectively how much money will
be loaned at an interest rate of 2% to be paid back in monthly installments.

Before, we use to get financial loans from local money lenders at 10% interest, making it difficult 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 of
the medical procedure which may have been a serious problem otherwise. They now have financial peace of mind and control of their finances.

Through the self-help group, we now have hope for financial support and we can meet our
financial needs.

Since July 2014, Kanyawati and her friend Pushpa from the colony are now trainers in the
VTC 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 her
parents and six siblings. Her father suffered from Leprosy. Due to lack of treatment, both his hands and feet were severely deformed. Since he could no longer
take 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 was
made 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 fathers disease was not revealed at the time of her marriage as her elder brothers had already faced difficulties getting married. Unfortunately, her
husband 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 old
girl child. A year earlier to that her father had passed away. Her in-laws refused to keep her and she came back to her mothers home in Kusht Ashram Arjunpur
(Leprosy Colony) in Sitapur district. Her family had shifted to Kusht Ashram Arjunpur soon after her fathers death. Her mother though had three sons; none of
them 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 her
financially for the same. Though she completed her course it was difficult to find work within Arjunpur. TLMTIs Vocational Training Centre (VTC) in Faizabad
decided to setup a Tailoring Centre in Arjunpur. Ibrahim was the integral link. Since July 2014, Kanyawati and her friend Pushpa from the colony are now trainers
in 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-affected and marginalized families with sustainable livelihood through skill training and self-employment.
For the first 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 her
new 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 got
married at the age of eleven.

Early 2008 Bairu and some of the bag-making students were given the opportunity to
produce bags for the 17th International Leprosy Congress. This little achievement helped
bolster their self confidence.

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 was
given three-months worth of medication. When it was finished he didnt 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 didnt take it for long enough. His
leg 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 would
have 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 fitted 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 in
Hyderabad in February. This little achievement bolstered their self confidence. Watching Bairu expertly handle the sewing machine and fabric, and seeing the
quality 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 other
students at the VTC. He says he has found a big family here.

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

The smile doesnt show the years of hard work that

Ram put in as a labourer, rickshaw puller and school
dropout. Ram showed remarkable flair for running his
own enterprise and made good use of the money that
TLMTIs 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 this
potential, TLMTIs Community Based Rehabilitation programmeme gave Ram a loan of Rs 15,000 to start a small business raising poultry. Its one thing to start
a chicken farm, but to start an actual business out if it is something else entirely. As a business person one has to make responsible managerial and financial
decisions. With the seed loan he established his chicken barn, bought feed for the poultry and equipment for cleaning.
Ram showed remarkable flair 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 doesnt 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 for
his 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 faizabad
hospital 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-sufficient 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 doesnt share his fate. I want to break the traditional thinking that says girls should not go
to 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 reconstructive
surgeries. Now they do about 350 reconstructive surgeries a year, which
makes it probably the largest in the world for any institution to do; yet they do
it with a small number of staff. They are extremely burdened but they manage
and produce good results. They make sure that people who had deformities
get corrected and go back to their families. About 15 years ago TLMTI Naini
Hospital had an average of 90 inpatients. Today, the official bed strength is 120
for leprosy but the numbers of inpatients are always more.

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 gave
her medicine for one year and told her that she suffered from slight paralysis of hand,
which will be cured after medication.
After one year, the condition of her hand became worse. Her thumb and fingers were
clawed and she suffered from wrist drop and foot drop. Pinkys parents went to a different
doctor this time and he referred them to TLMTI Naini Hospital.
Pinky came to Naini for her treatment along with her parents. When her disease was
diagnosed as Leprosy, Pinky and her parents were shocked. They also regretted the fact
that they had wasted one year of treatment at BHU .
Pinkys treatment took around 2-3 years at TLMTI Naini Hospital. She had two corrective
surgeries of hand and tendon transfer surgery for foot drop.
Pinky had a very difficult time initially. She is the youngest of three siblings and hence
pampered. Although her family, relatives and friends supported her, she suffered from low
self esteem.
Pinky decided to pursue Nurse Training Course, as she was very impressed with the nurses
working in the hospital. Under Comprehensive Rehabilitation Programme (CRP), the
hospital managed to get her funded for a private nursing college. Pinky completed General
Nursing Midwifery course and got placement in TLMTI Naini Hospital.
Today, Pinkys family and friends are happy to see her doing extremely well in life. She is still
not comfortable using both her hands and her supervisors are trying to work around that
by giving her more responsibilities. Although Pinky has been cured, it will take a long time
for her to be completely normal. She is fortunate to work in an environment that will surely
help 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 Naini
Hospital let her. She had to learn to wear gloves, start using both the hands to give
syringes 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 instead
to become a teacher. During his training with an American mission organisation he sees for the first 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 offices are formed in England; Mary Reed is sent to India as the Missions first missionary; Naini in Uttar
Pradesh and Purulia Leprosy Hospital in West Bengal opens with support from the Mission.

1890s India and beyond

The Missions first public meeting is held in London the money raised helps to build a leprosy home and childrens home in
Neyyor in south India. Two more homes open in India Miraj and Kothara. Wellesley Bailey visits Mandalay, Burma, to open
the first Mission to Lepers home outside India. Bailey tours the USA and Canada and a support office in Ontario is formed.
Gradually the Missions 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 offices in eight countries.

An antidote of love
The Missions first task was to bring those who were without within, to take the sting out of the word leper by the antidote
of 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 first 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 was
taken 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 name
was 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 Officer 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 financial help from friends, he made boarding and lodging arrangement for 20 such people by
building 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 first 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 Hospitals
began in 2005 and today TLMTI has 14 hospitals , 6 of which are community hospitals. There are now significantly fewer cases
of the disease so TLMs 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 compassion
to 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, indifference and abomination from people in the town. It was natural .. almost a way of living.. for
him and other families in the colony to be treated as sub humans. Ibrahim has spent thirty-five years of his life in Arjunpur colony (Leprosy colony) in Kherabad
town of Sitapur district. (Uttar Pradesh). His grandfather worked in military and was forced to leave job when he was affected with leprosy causing severe
disfigurement in his body. Ibrahims father used to work in circus and performed a dangerous act, the well of death (Maut ka Kuan) that involved jumping in
a well from a height of 105 feet with fire on his body. Few years later, his father left work when he could no longer climb the ladder with his clawed hands, a
condition that happens when leprosy is left untreated for years and it affects the nerves. Ibrahim had to shoulder the responsibilities of his family soon after
that. 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 later
worked 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 avail
the government entitlements and benefits. Kabir Sewa Samiti also holds 7-8 leprosy awareness camps per month on the streets, near temples and public places
to bridge the gap between leprosy affected 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 also
installed 2 solar lights and a submersible pump acquired from Gram Panchayat. Kabir Sewa Samiti has also helped 11 people from the colony to avail pensions
under 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 others
with better livelihoods and mobilize them for their rights and entitlements.
TLMTIs initiative steered him to a leadership position within the community and has helped restoring dignity of the families living in the colony. For Ibrahim it
is 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 or
discriminated is much less.

82

. Street Plays for Sensitisation

Years of segregation, stigma and discrimination have deep rooted scars on the life, personality and interpersonal skills of persons affected by leprosy and their family members. In the process of bringing positive
and comprehensive change in this long standing status quo the persons affected by leprosy and their
family members need to build on their own self esteem, confidence and belief system. For the same, the
HEAL India campaign, used the medium of Street plays to educate, sensitize and help bring the subject of
Leprosy into the mainstream.

83.

Anveshna, a Workshop

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

84.

Educate to Heal

The HEAL (Hire, Educate, Accept Leprosy-affected) India campaign challenged the misconceptions around Leprosy by
reaching out to corporate and school children. The Educate to heal philosophy was rolled out to about 3,000 students from
leprosy backgrounds and 250 schools as part of TLMTIs Education Programmes

85.

Ground
Changes: Adult
Education
Vidyawati loves to read the morning
newspaper. She has made it a daily habit
to spend some time briefing herself about
current affairs of her region. Hardly anyone
would believe that she was an illiterate woman
till about a few years back. Vidywati was not
able to read or write till she became a part of
the Literacy Group in her village. The Project
has been conducting functional literacy
classes in her village. TLMs Adult Literacy
Programme initiative has been assigned
the role of teaching women to read and to
write. Vidyawati has been attending these
classes for some months. Vidyawati has 5
girls and 1 son. She has now understood the
value of education and she wants to get her
girls educated. Her daughters have started
going to school. She is now able to help her
daughter with her school work. Things are
changing on the ground in this small village.

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 Indian
Government, 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 Governments schemes for people
living below poverty line, they continued to live in a broken home with no help to fix it. During the monsoons, they would crawl into corners, covering their heads
with anything they could find. A dry spot on the floor was luxury and Ajjan Begum knew that she had to do something.
Uttar Pradeshs TLMTIs CALL (Challenging Anti-leprosy Legislation) Project came as saving grace. The project held training programmemes in the villages and
it is here that Ajjan Begum learned about the State Governments Schemes, where BPL (Below Poverty Line) Card holders were entitled to financial support for
home renovation and repair.
With the help of the CALL intervention and the Gram Pradhan, Ajjan Begum met with the Block Development Officer in Bahadurpur to discuss the standard of
living 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 many
other families.

87.

Making Citizens of Tomorrow: The Vocational Education Centres focus on

and education for girls and pay special emphasis on literacy and skills leading to entrepreneurship.

mainstreaming

88.

Catch Them Young: The CTY programme has helped reach out to many students with loans and

scholarships. 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. TLMTI
provides 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 duty
to 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 affected including provision of Multi Drug Therapy,
management of reactions, care of insensitive limbs, prosthetics and orthosis, customized footwear, orthopaedic
appliances, correction of deformities through reconstructive surgery, physiotherapy, managing ocular leprosy and
general health.

92.

Hiralals Indomitable Spirit

An indomitable spirit, 53 years old Hiralal, had lost it alljob, a wife for six years, social acceptance, sources of income and physical health. Ostracized for being
diagnosed with Leprosy he was a solitary soul confined to the four walls of his shanty in the leprosy colony of Khairabad in the town of Sitapur. When CALL
project staff, started training programmemes in the colony for empowering people affected by leprosy, Hiralal was seized by a new hope. He started proactively
participating in all the programmemes and motivated others to join the fight for their rights. He was elected as Vice President of the Community-Based
Organisation (CBO) facilitated by CALL in the colony. Hiralal championed the cause of discrimination faced by the leprosy affected 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 and
auto rickshaw stands spreading awareness about leprosy and the need to stop the unnecessary discrimination. This has brought about a significant respite
for the Leprosy affected in his immediate locality. This has motivated him to take the next step to give up begging and achieve a sustainable livelihood for a
life 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 the
colony so that they can do fish farming a lucrative business. There is a determination in Hiralals voice as he talks about the plans he is nurturing on the path
of embracing a new life!

93.

Advocacy Changes Lives & Dreams

Indira Dharma Dham Kusht Seva Samiti in Mowa, Raipur, Chhattisgarh was set up for people affected by leprosy in 1985 in the name of Mrs Indira Gandhi, the
then Prime Minister. About 185 people affected by leprosy from different parts of the country live in this slum cluster. An advocacy group was set up facilitated
by TLMTIs CALL(Challenging Anti-leprosy Legislation) Project staff 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 National
Urban 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 complex
in 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 the
same. As the old huts are demolished, the inhabitant move to a temporary shelter with dreams of a permanent secure house being built. Advocacy can indeed
change 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 not
demand anything! After TLMTIs interventions we feel more human we feel included. Life is beautiful
and more dignified.

96.

When Theres a Will, Theres a Way.

Kiran Devi is a local volunteer in Gudian Purva village. She has been associated with WEP (Womens Empowerment Project ) since it started in 2009. Kiran,
twenty-eight, is a dropout after finishing high school. Due to the stigma attached to leprosy, the forced source of livelihood of the fully-cured residents of the
Rajiv 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 National
Rural Employment Guarantee ACT (MGNREGA), a central government sponsored welfare scheme that promises every rural individual at least 100 days of
employment.
On further verification, the community applied for jobs under the scheme and the Block Development Officer of Bahadupur issued an order to provide Job
Cards to all those who were physically fit to work as labourers. He also wrote to the Branch Manager of the Bank of Baroda requesting him to open Bank
Accounts 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 the
remark in the response to the letter sent by the BDO.

We came to know that all these people are affected by leprosy and are under treatment, hence their bank accounts
cannot 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-infectious
and fully-fit to work. The incident even got featured in the local newspaper. Ultimately, the Branch Manager relented, and opened their bank account after
issuing 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 drinking
water

Mangri of the Rajiv Gandhi Kushtha

Ashram says that while others came and
gave them alms to survive... but TLMTI
taught them how to live with dignity. This
colony of the leprosy affected people was
reeling from problems of accessing clean
drinking water. There was only one hand
pump which was bringing up water with
impurities such as insects and mud and
not fit for consumption. Their pleas went
unheard as the authorities paid little heed
to their voice as they were considered
untouchables. When CALL project staff
paid them a visit Mangri came out with
a bucket of water which was all yellowish
and full of worms. The TLMTI staff took
immediate action and made the necessary
interventions and roped in the authorities
to help rid this village of their problems.
Now they have access to clean drinking
water and have been made aware of their
rights and entitlements to enable them to
take action themselves in the future.

98.

One of the important objectives of TLMTIs Women Empowerment Project (WEP) is to spread awareness on
the disease and its 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.

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 of
inclusion of people affected by leprosy so that they can also be part of the development process in the country. As part of this series, TLMTI organised a
panel discussion at India International Centre, New Delhi in March, 2013 to discuss action required to include people affected by leprosy in the development
process, by bringing together policy makers and others working in the development sector on a common platform. The panel discussion had the theme, A
Leprosy Inclusive Development Agenda. It provided a great opportunity to discuss what inclusion means for people affected by leprosy and also to find out
ways to include them in the development agenda. As a result of the discussion, a constructive dialogue was started off with policy makers and various other
stakeholders to work out a rehabilitation policy for people affected by leprosy.
Ms Stuti Kacker, IAS, Secretary, Department of Disability Affairs, Ministry of Social Justice and Empowerment, Government of India, was the chief guest. The other
panelists 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.

100.

Small Victory, Big Lessons

About 30kms east of Lucknow, the capital city of Indias fourth largest state Uttar Pradesh,
lies the district of Barabanki. Estimate released by the Planning Commission of India for
the 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 figure, the
literacy rate among females hangs at a dismal 43%.
Rukhmani is from Rasulpanah village in Fatehpur Block in Barabanki District of Uttar
Pradesh. She is among the underprivileged females of the skewed sex ratio who did not
have the opportunity to attend school. Rukhmani remained illiterate though fiery and
confident with a charming smile.
When TLMTI came to her village, they formed a Mahila Mandal (Womans Group) in
which she immediately participated. The lack of opportunities had never dulled the
inquisitiveness and passion for a better life in her. She enrolled into the literacy classes
and quickly picked up skills to read and write. She attended the awareness sessions
actively and volunteered in group activities.
Rukhmanis father is disabled and was a recipient of the disability pension from the
Government. But due to some undisclosed reasons the pension stopped suddenly.
The pension was the sole source of survival for the family. Rukhmani brought up this
topic during one of the Mahila Mandal meetings. The TLMTI Staff and the Volunteers
encouraged her to approach the Disability Office and enquire about the reasons.
Strong willed Rukhmani emboldened by the support of the group and her new found skills
to read and write, went to the Disability Office. Upon enquiry and document verifications
she was able to get her fathers pension started again. This little achievement she credits
to the courage and confidence instilled in her through the support of TLMTI in the
village. The family would have continued to live without the pension had it not been for
Rukhmanis ability to speak up, be heard and be aware.

101.

Boat of Dreams

In December 2004 Sundarams life was devastated by the Tsunami that hit Indonesia, Thailand, Sri Lanka and parts of the east Coast of India, killing 18,000
people in India alone. Sandihya, Sundarams wife, vividly remembers that day. She was standing on the beach, waiting for the fish her husband had caught to dry
so 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 Sundarams 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. But
even before the trauma of the Tsunami, Sundarams life had not been easy. When people learnt about his leprosy, or saw his clawed hands, they would call him
names 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 you
speaking 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, and
Sundaram has received a fibreglass fishing 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 Sundarams new house. Sand from the nearby beach reaches his front door, and the turquoise Indian Ocean is less than a minutes
walk away. The family shows hopeful resilience and clearly take delight in their new home.

102.

Trainings for
Better Times

Nineteen years old Kuldeep works in a welding shop

in Aruwaw village (District Faizabad). Originally from
Abanpur Saroha (District Faizabad), Kuldeep left the
village for better opportunities due to poor financial
situation at home. His father suffered from leprosy and
engages in manual labour work. Kuldeep is the eldest
amongst six siblings, hence responsible for taking care
of his younger brothers and sisters. Kuldeep has been
working 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 rural
areas, there is a great demand for welders in construction
and furniture business. Looking at the prospects,
Kuldeep now wants to start his own enterprise back
home. The job had helped him save money for his setup.
He requires one and a half lakh rupees and so far he has
been able to save seventy thousand. Its not easy to get
a government job so I want to start my own work in my
village, says Kuldeep.
Kuldeep has received Welder Training for 6 months
under Community Based Vocational Education Training
(CBVET) programme that has enabled him to dream of
starting his own small venture. CBVET is TLMTIs initiative
to reach out to large number of those affected with
leprosy/general disability, dependence of leprosy and the
marginalized communities. The Programme runs in five
districts of Uttar Pradesh, namely Faizabad, Barabanki,
Kushinagar, Pratapgarh and Sitapur. Since 2011, 761
students have benefited from CBVETs programme and
103 are undergoing training for the same.

103.

Will my hand be straight ever?

always thought young Chandan, until his life

changed 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 had
no one on the outside. They were referred to as mercy patients in the hospital and Snehalayas or Care Homes
were maintained by the hospitals for these few. TLMTI has five Snehalayas today which provide shelter, food, other
necessities of life and a caring atmosphere in which to live a life of dignity and peace.

105.

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

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

106.

As a young girl, Sarsawati Kumari, was devastated at the clawing of her fingers of her right hand. She could not go out, she could not play
and she could not attend her school. She found it difficult to hold the pen and write. She gradually withdrew herself from her friends. The Leprosy Mission Trust
Hospital, Purulia not only performed reconstructive surgery of her right hand but also gave her post operative physiotherapy treatment. Now the appearance
of 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 and
high fever. At the time he was under 4th dose of Multibacillary. He was admitted and started treatment for reaction. Regular physiotherapy was given, self care
was taught, and he was on the road to improvement. During his stay he shared the teachings of the Gospel with other patients.

108.

10 year old Baby Sandhiya belongs to the Kodaikannal tribal community. She suffered from the rare triple nerve paralysis in leprosy. This
had 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 was
motivated by the staff and the other patients in the ward, and accepted to undergo surgery. Slowly after the surgery she was able to cope up with improvements
and happily enjoyed her stay at the hospital. She celebrated Christmas with the other patients. Before discharge, she underwent wrist drop correction, followed
by post operative physiotherapy and occupational therapy care.

109.

Satish Selulkar was a young bright student of

class seven when he was taken sick and diagnosed with Leprosy. After
treatment at TLMTIs hospital in Kothara, Satish went back to his village
in the Amaravathi district of Maharashtra. He wished to continue his
education and therefore went back to study in his school. But he was
hardly welcomed back after the prolonged illness. News had spread
of his disease and everyone in his school was aware of it. The teachers
and students objected to Satishs presence in the school campus
and refused to share space with him. He was not allowed to even sit
with the other students in the class. A disheartened Satish dropped
out of the school. Under the Catch Them Young initiative, Satish was
helped in acquiring fresh admission in another school and continue
his education.

110.

Life has changed. I can now live like any other of my

peers. says sixteen years old Munni Tete from Lakhimpur, Assam. As an
adolescent she developed patches which turned into nose bleed and
eventual nose collapse with neglection. With such severe deformity on
the face, she seeked medical advice at Premananda Memorial Leprosy
Hospital, Kolkata. She underwent counseling and then a post nasal
inlay graft reconstructive surgery. As her wounds healed so did her
self confidence and belief in a brighter future.

Life has changed. I can now

live like any other of my peers.

111

. World Around Dinesh

Maurya Moved on, as he underwent a

prolonged treatment for his type II reaction management in TLMTI

Community Hospital at Naini. He spent years battling the disease but for
his family of six the world literally collapsed. No job, no social protection,
no backup plans, the family lived on the verge of hopelessness. With
little money to survive their house underwent disrepair and couldnt
stand the onslaught of rainy season. His four daughters and son had
no one to turn to.
The Low Cost Housing Programmeme of CRP project recognized the
problems of the Maurya family and provided a home. Dinesh was a
happy man upon being reunited with his family with a solid roof over
their head. With one less worry, it gave him an impetus to go out, take
up 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 Indira
Leprosy Colony, Raipur, painted and decorated their respective
houses while the streets remained filthy. Challenging Anti-leprosy
Legislation (CALL) team members motivated the youth of the colony to
clean the streets and led the cleanliness drive by taking up the broom
themselves. The youth immediately swung into action and cleared
debris 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 paint
and clean their houses. This initiative impressed upon the people of
the colony that they need to perform their duties as citizens of the
country, while fighting for their rights.

113.

Restoring lost smiles: Education and training helps the children of the Leprosy

affected re-enter society. More than 3000 students from leprosy backgrounds and 250 schools are part of
TLMTIs education programmes, which focus on sensitization, awareness and bridging the gap between
the leprosy affected and the mainstream.

The Facilitator here has always supported us. He urges us to start some work
and 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

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 grandchildren
along 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 and
carried 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 no
sensation 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 severe
and visible, the villagers shunned her completely. She was not invited at any social gathering and her life turned upside down. For eight years, Sursati Devi faced
constant humiliation in her own village. At that point, she decided to leave the village.
If no one wants me around, then its better that I leave. recalls Sursati Devi. At the age of eighteen, she ran away and came to Allahabad. She wanted to go near
the Ganga and the rickshaw driver dropped her just outside the leprosy colony. At the colony members consensus, she got married to a boy who also had
severe deformities and was living there.
After a years 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 children
have 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 sons education. Now, Narayan is pursuing 2nd year of his graduation and Raju will complete his class 10 studies. Narayan
wishes 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 be
trained 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 sons, Narayan and Raju,. They have never
been ashamed of their parents illness and want to get financially independent at the earliest so that their parents and they themselves stop living on charity..

If no one wants me around, then its better that I leave. recalls Sursati Devi.

I owe a lot to the doctor, counselor, physiotherapist and nurses here. They look
after our small needs and always make us feel welcome.
Neha, Student, Female Surgical Ward, TLMTI Naini

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 beauty
parlour. Few months later she suffered from high fever, contraction in her fingers and pain and swelling in her body. The fever and swelling subsided but the
fingers remained contracted. It became difficult 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 discontinued
her studies.
As the condition of her fingers deteriorated Neha went into depression. She would lock her in a room and hide from neighbours and her relatives. Neha had
always been an active learner and had diverse interest in vocational courses but her condition made her lose her self-confidence.
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 to
hear about her condition. Both her fingers and thumbs were clawed and she could not close her eye lids. Although she had heard about the disease, she was
not 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 undergone
6 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 underwent
her 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 development
through 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 my
fellow 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-five years old, came to The Leprosy Mission Trust India (TLMTI) Community Hospital at Naini in May 2014 for ulcer treatment of his right
foot. In 2005, he was injured with a stone in Mumbai. He spent over 2 lakhs on his treatment but no doctor could diagnose or offer him suitable treatment. As
his condition worsened, the doctors from Government Hospital Jaunpur, Uttar Pradesh told him that his foot will be amputated and referred to TLMTI Naini for
further treatment. His first visit to TLMTI Hospital Naini was in October 2013. With the effort 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 difficult things in the healing process. Mycobacterium
Leprae ( bacteria) causes lesions on the skin and damages peripheral sensory nerves in the body. Once the bacteria damage these nerves, the person loses
the ability to feel sensations in the affected part of the body. Even families of the leprosy affected refuse to clean the foul smelling ulcers often filled 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 affected 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 suffer 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 a
more 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 towards
his work are the essential ingredients of mainstreaming efforts.

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 and
be independent. Many thanks to TLMTI !! Bina Singh, CRP Programme, Nav
Nirman Kusht Ashram, Allahabad

117.

Nav Nirman Kusht Ashram

Nav Nirman Kusht Ashram is around 100 years old colony inhabited by the families affected by Leprosy. It lies off the main road to Sangam along river Ganga
in 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-five years old Bina Singh came to the colony after her marriage. Binas parents were affected by leprosy and she
contracted the disease at a young age. Incidentally, she was married in the family where few members were affected 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 difficult to bear
the 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 improve
the quality of life of the leprosy-affected person and their families. Bina met James George, Programme facilitator of Comprehensive Rehabilitation Programme
(CRP) in 2010. Under TLMTIs Socio-economic Rehabilitation Scheme (SER), they were provided with another mobile cart and goods like incense sticks, cosmetics
and bangles to improve their income. Income was still meager.
Catch them Young (CTY) is another scheme that provides financial assistance to the children of leprosy patients or children affected with leprosy who cannot
go to school due to poor socio-economic background or social stigma. Binas elder daughter Guddi benefited from CTY scheme in 2010 and completed her
secondary education. In 2012, Binas son Rahul Singh was sent to Vocational Training Centre in Faizabad to be trained as a mechanic. At the same time, Guddi
got married and CTY scheme was offered to Ritu, her younger daughter.
Rahul was offered a job in Dehradun through TLMTIs placement cell and earns Rs 8000 per month. Ritu is now preparing for her Class 12 exams. TLMTI has
suggested 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 from
financial support they often need enabling environment to hold on to opportunities that come their way. Bina realizes that she got her elder daughter married
little too soon and is keen that her younger daughter completes her education, becomes independent and then gets married.

Under TLMTIs Socio-economic Rehabilitation Scheme (SER), Bina was given a

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

118.

Inpatient learning programmeme

119.

Never too old to learn

120.

Kadirul at an adult learning

programmeme

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 affected by Leprosy, and were cast out of their native villages due to the stigma of leprosy.There was a
29-year-old person among them Shri Vishwanath Ingle. He brought many such people found begging around Bhilai Railway Station to the colony, and helped
them build their own huts. Asha Deep Colony doesnt 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 an
aura 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, five girls working in the computer software sector, 15 to 20 children doing university education
from the colony. The present is bright, no doubt, but the future looks brighter!

122

. Aartis 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 familys
lunch, she was seriously burned by hot water, due to the loss of
feeling in her hands. The family assumed that all her disabilities were
caused by this accident.
One day two people in their village, patients at Naini hospital, saw
Aarti and told her parents to bring her there to receive help and
surgery for her hands. By now, ulcers had started to form on Aartis
hands and she was also in reaction, a condition in which the immune
system reacts to the leprosy bacterium causing inflammation in the
skin and nerves as well as sickness and weakness.
Aarti was started on treatment for her leprosy, steroids for the
reaction and intensive physiotherapy for her deformed hands,
feet and eyes. In seven months, she has successfully undergone
reconstructive surgery for her left hand, left foot and both her
eyelids. Physiotherapy exercises after the surgery are helping to
restore function to her hands and feet and eventually she will have
surgery on her right hand and foot.
Seven months is a long time for an 11-year-old girl to stay in a
hospital and she keeps asking to go home. But it is very important
for her to stay on to complete her treatment. Along with another
young girl in the ward, Aarti helps out the nurses with little jobs like
rolling bandages but what she enjoys most is if she can get hold of
a book and read and study. Aarti receives regular counseling too to
help cope with her loneliness and homesickness.
Once she leaves the hospital Aarti desperately wants to go back to
school and finish her education with help from TLMTIs Catch them
Young project.

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 affected
by leprosy. Using this concept, TLMTI organized Comic Workshops for young influencers within the age group of 15 - 21years, belonging to leprosy affected
communities 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 workshop
helped them to articulate their thoughts through comics which reflected 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 effective social message which will further help in creating awareness in the local civil society in a very
interesting way and will also create an impact that will compel the society to reflect 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
identified 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 leprosy
and help others from her own community. Her parents are both affected by leprosy, having high deformity themselves. They fulfill 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 affected by leprosy. After a few months her son gets
affected by leprosy and she regrets her attitude towards the person affected by leprosy and goes on to educate other members of the community.
Sunita felt this workshop helped her deal with her feelings and find a voice through this medium.

I dont want anybody to experience helplessness because of their physical

condition. 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 overcoming
leprosy. How access to education and good healthcare can change somebodys life is evident from Suresh Dhongdes success. At one point of time he was
staring 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 cringed
with extreme pain. He was rushed to the Leprosy Mission hospital in Pune. However, Sureshs will to live and good medical care helped see him through. To
avail 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 and
in no time became the ward in-charge.
Theres 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 circumstances
came 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 attitude
was when he saw several leprosy patients getting educated.
With financial help from The Leprosy Mission, Suresh started attending Class XII at a nearby college on Saturdays. His hard work paid off and he passed with first
division. 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 affected by malnutrition, has given new insights to the 35-year-old. I have never worked so closely
with the community. Though Leprosy Mission Trust runs a hospital at Amravati district headquarters, it never required field outreach. Now meeting people and
convincing them to participate in the programmeme has been both challenging and satisfying. People here are reluctant to believe NGOs as so many of these
groups have failed to fulfil 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 on
health, education, livelihood, social inclusion and empowerment. Through the efforts of Sureshs team, 500 of the 590 PwDs in the project area have got medical
certificates, which are essential to avail government schemes and benefits.
Awareness to prevent disabilities, medical interventions, aids and appliances, admission in schools, vocational training, self-employment loans, political
participation and formation of self-help groups have been the cornerstones of the project. Instead of Viklang Jan Sanghtans which are exclusive to persons
with disabilities, we have formed Jan Vikas Sanghtans which allow memberships to non-disabled as well. This is to encourage greater participation of persons
with 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 offered me an operation that gave me this gift of life.

127.

Unemployment destroys an individuals dignity, impairs a mans self-confidence but SKIP

programme has played a vital role in my life. It has helped discover my untapped potential. TLMTI has provided
Nursing Training and placement services to many women across its hospitals. Through TLMTIs intervention
many 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 affect by leprosy for the last
eight to nine years. A mother of three children aged
three to eleven years, she keeps her family surviving
by collecting rubbish from a landfill (ragpicking), which
she then sells at the market. Her husband abandoned
her family about five months ago after she was
diagnosed with leprosy.
At first Seema did not realize she had leprosy. It was
only when she received a severe burn to her hand
while cooking that later developed into a large ulcer
that she sought medical attendance at a hospital.
This is when she was finally diagnosed. She received
a form of treatment but she is unsure if it was MDT.
Two years ago she went to TLMTI Shahdara Hospital
where she was given a full course of MDT for a year
and has since been operated on her hand. She is
currently an inpatient undergoing physiotherapy free
of charge.
Seema is very happy with the level of service provided
to her by the hospital staff. The hospital staff is
friendly and because of their help I can improve my
physical condition. Grateful they have admitted her at
no cost, regaining movement in her hand means her
family will not starve. She is illiterate and so believes
that without this job there is no hope for her familys
future.

129.

People need a push,

A supportive hand and clear guidance to equip themselves with

technical and lifeskills. Given the opportunity people ae ready towork
in non threatening environment. Through TLMTIs Vocational Training
Centres, young adults are engaged into meaningful enterprises and
trained in various livelihood skills. VTCs offer government recognized
certified courses which meet market demands and the specific physical
needs of people affected by leprosy.

130.

Perspective

Ashok was an army aspirant. With dreams of serving his country he enrolled into the
army. 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 with
Leprosy.
Expelled by his community, it was at The Leprosy Mission Shahdara Hospital in Delhi
that Ashok could finally undergo proper treatment. He had become partially blind
and the hospital helped restore his eyesight.
Afraid for his future, his uncle offered him an opportunity to learn the trade of
plumbing-carpentry by working alongside him as an apprentice. Although completely
competent in his profession, his biggest hurdle has been convincing potential clients
of his ability to perform his job. Years of determination and building relationships with
satisfied customers has earned him a solid client base through word of mouth and
with the Self-Help programmeme, implemented by TLMTI to empower communities
through education, his business has prospered.
TLMTI sponsored Ashoks business by offering him an interest free loan of 3,500
rupees in order to buy necessary additional tools. In turn, he has been able to offer
six boys from his community apprenticeships. Education provided by TLMTI through
the Self-Help programmeme assisted him in applying for a certificate of disability,
which allows him to apply for various other government schemes.
Ashok believes that improving outsiders perception of Leprosy is through the selfconfidence and independence of leprosy-affected people.

131.

Survival with sisterhood I

Supriya & Poornima are two sisters who were transferred to TLMTI Hospital Naini from
Maharashtra, due to the complicated nature of their deformities. Supriya is the elder one
at seventeen years and was referred with non-healing ulcers in both feet for amputation
and prosthetics fitting. The team at Naini has been able to save her feet through
experienced use of plasters, rest, podiatric splints, corrective surgery and antibiotics with
debridement to get rid of the infection. She also has had deformity corrective surgery for
both her hands and is getting training to manage ADL with her deformities and preserve
her 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 was
successfully treated in TLMTI Hospital in Maharashtra. As she had surgeries for both the legs, she was finding it difficult to recuperate and walk again. At Naini
she gradually learnt to walk without aides with staff support and physiotherapy.

133.

Beauty is
only skin deep
Neha ran an entrepreneurial venture in her small
town in Northern Uttar Pradesh, about 200kms away
from Naini. After completing a Beauty Technician
Course, Neha took a leap of faith and opened a small
beauty parlour in 2012. She took a seed loan from
a bank and invested a lot of energy into making her
venture a success. The business of beauty suited her
well.
Suddenly she realized, an often ignored white patch
had developed into Leprosy and the tell tale signs
were difficult to hide or ignore anymore. Soon her
hands started to claw, making it difficult to even
hold a pen. She was unable to continue work and
was referred by the local Government hospital for
surgery.
At TLMTI Hospital Naini, Neha underwent corrective
surgery for her clawed hands and her inability to
close both her eyes. With physiotherapy she is
now able to write quite well and is able to use the
computer key-board.
Unable to pay the bank loan and rent for the shop,
Nehas mother closed the beauty parlour and sold off
all the items. But this has not deterred Neha. Having
had studied till class 12, She now wants to finish
her college education. The entrepreneurial spirit in
her is still alive and she plans to do a professional
computer course and then seek to re-open a bigger
better place where beauty will not only be skin deep.

134.

Rubys cosmetic camouflage

Ruby Raja ran a crche 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 suffered
from Leprosy since the last five 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 of
adversity and her motivation to work with children is universally admired in her city. After
her surgery she lost 3cm of the Right Hand Index finger. TLMTIs Occupational Therapist has
made a cosmetic camouflage latex splint for Ruby. It is very close to the real thing and gives
Ruby the confidence to continue her work. The artistically skilled physiotherapist helped her
out by colour matching the cosmetic camouflage latex splint

135.

Life on rent

At fifteen, with his only experience of work being farm labouring, Chotey Lall was forced to fend for himself after being ostracized for having leprosy. He didnt
know where to start. So, hungry and desperate, he resorted to begging. I felt so ashamed the first 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 lost
sight 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 didnt take a full course so the leprosy wasnt properly dealt with. He suffered
painful 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 subsequent
infection 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 in
his fingers: damage that could have been avoided if only his condition had been discovered sooner. Now, he says, he was clearly disfigured. 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 five years. He completed
a course of Multi-Drug Therapy, had his eye operated on due to lagopthalmos and was entered into the vocational training programmeme. He learnt bicycle
maintenance 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. He
earned food and soap and clothes. And most of all, Chotey said, the staff showed me a lot of love. TLMTI staff is still working on helping Chotey re-build his life
and find a vocation of his calling.

TLMTI is in the process of training teachers so that eventually the community will be
able to self run the service with qualified 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 affected, her
husbands parents are both leprosy affected.
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 of
training teachers so that eventually the community will be able to self run the service with qualified 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 two
hour 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 filled with activities such as poems, songs, drawing, cartoon shows etc which will help prepare
them for school. The syllabus is also flexible on the day, depending on the energy level of the children. The age group is three to five. Small children are running
about, 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 the
community. Sugras 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 to
see her as a parent figure so that she can help guide and influence 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 benefit schemes that they are unaware of because of illiteracy.

I am very happy with TLMTI Hospital because nobody else had diagnosed me
correctly 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 with
her husbands 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 to
her first child, she began to experience her first 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 attention
immediately at the Aligarh Hospital where they diagnosed her with TB. They did not diagnose Leprosy and so the ulcer continued to demobilize her. She began
to 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 related
to her leprosy infection. Sumitra came to TLMTI Hospital two and a half months ago on the recommendation of her fathers friend. This is where she was finally
diagnosed 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 finally be properly diagnosed and to receive proper care. Her family
has been very supportive, and she looks forward to returning home once she has healed. Sumitra finally feels she has peace of mind. I am very happy with
TLMTI 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 they

turned me out of home. They had so much fear that they had no room
for compassion or love.

139.

What is love? Does it spread through blood

of relations? Or does it spread through a smile of a stranger?
What is compassion? Is it only for the privileged few... or can
some be reserved for me too?

140.

I am only physically challenged, but I am mentally and

spiritually healthy. I have a strong will. A leprosy affected person with a
passion to achieve and self-confidence inside can live a dignified life.

Timeline Research by: Shyamala Anand

Timeline layout and Design: Joanna Davala & Nihal Anand

CNI Bhavan
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