The Leprosy Mission International selected two outstanding individuals, who have surmounted not inconsiderable challenges to lead lives of inspiration to so many others, to receive the 2009 Wellesley Bailey Award.

At the Awards Ceremony, both awardees gave moving speeches about their lives and how they have overcome hardship, rejection and stigma and are now actively engaged in helping others affected by leprosy to improve their lives.

Ms Parwati Oli from Nepal said: “I do not know the people who nominated me. I would be very glad if I could know that person so that I could personally thank him/her on this occasion. This award is very important to me. I have no words to express the gratitude.”

In his speech, Mr KV Shetty, who is Indian, outlined his beliefs about how communities can help people who are affected by leprosy. “There should not be any social discrimination and prejudice. The community should take an active part in the rehabilitation of the individual, giving financial help and social support. Then only a cured person will get the feeling that he is not worthless to be discarded to the scrap heap.”

THE WINNERS’ STORIES

AN INSPIRATIONAL WOMAN – MS PARWATI OLI'S STORY  
As a young girl growing up in Nepal, Parwati’s life was hard – it was her responsibility to collect firewood, look after the cattle and fetch water. She would rise early each morning to begin her tasks, and by the evening she was tired out. She was just ten years old.

Left alone
Her neighbours would watch as she struggled to carry the bundles of firewood home, but no-one offered to help. Her home was a simple hut. Many years before, Parwati’s mother and father would look after the cattle and light the fires and there was always something to eat. Now, apart from Parwati, the house was empty. Her father had left and married another woman. And then, sometime later, her mother left to find him.

One of the reasons Parwati’s father left was because her mother had leprosy. But then, when Parwati was nine years old and studying in Class 4, she was diagnosed with it too.

At first her mother took her to a private hospital, but they couldn’t give Parwati the correct treatment. By the time she took Parwati to a leprosy referral centre, the disease had weakened her limbs. She was given treatment for three years.

Losing friends
The medication caused skin patches and pigmentation. Now it was obvious to everyone in her village that she had leprosy. The girls who she thought were her friends no longer wanted to spend time with her, or sit next to her in school, and people would avoid her in the street.

And all the chores she had to do after her mum left caused cracks and sores on her feet. She spent long stretches of time at the leprosy referral centre receiving treatment and so she missed a lot of school. When the referral centre became aware of Parwati’s home situation, they suggested she go and stay at Green Pastures Hospital, run by International Nepal Fellowship, in Pokhara.

 
Photo: Ms Parwati Oli © TLMI   


A new beginning
It was here, at Green Pastures, that Parwati’s life finally began to improve. There, she learned how to take care of her hands and feet to prevent any wounds from developing. And, thanks to support from an older sister, she was able to continue and finish her schooling.

According to IDEA Nepal, who nominated Parwati for the award: “Even during the difficult times Parwati did not lose courage and interest in continuing her studies.”

In 1996 Parwati was supported by a local non-governmental organisation to do nurse training. At the end of the course and after 18 months of volunteer service, she was offered a job at Green Pastures Hospital, where she is a nurse midwife today.

And in many ways that would be transformation enough, considering the difficult start to life that Parwati had. But Parwati didn’t stop there.

Positions of leadership
She was one of the founding members of IDEA Nepal, an international human rights organisation that advocates on behalf of people affected by leprosy, with 23 branches around the world. Currently, she is vice-president, one of the few women who has a leadership position within IDEA Nepal.

Her experiences have left her with a strong desire to help not only people-affected by leprosy, but women as well. In Nepal many girls do not get the chance to go to school, and women do not have the same rights as men; it can be hard for them to make decisions for themselves. So Parwati has a heart to see women more empowered and aware of their own rights and dignity.   

Working for women
In 2006 Parwati was a principal organiser of IDEA Nepal’s first women’s national empowerment workshop. Since then she has participated in the follow-up workshops that were held in Nepal’s five regions. In her influential position within the organisation, Parwati is helping to develop training, scholarship schemes and income-generating programmes, and is promoting self-reliance as well as legal advocacy, so that people are aware of their rights.

There has been some media coverage of these workshops, giving people like Parwati the chance to be interviewed on radio to talk about the misconceptions surrounding leprosy.

Parwati’s work for women and for people affected by leprosy has now been noticed on an international scale. In 2003, Parwarti went to India to contribute to IDEA’s first women’s national empowerment workshop. And in February 2009 she attended the first Asian conference on Community-Based Rehabilitation in Thailand.

A compassionate heart
Her heart for women, and for people who have had similar struggles to herself, shows itself, not only in her career and positions of leadership, but also in a very practical and personal way – she has taken into her care a young girl affected by leprosy from Green Pastures Hospital. The girl has lived with Parwati for the last four years. And IDEA Japan members have given her a school scholarship. So with Parwati’s care and a good education, her life will take a very different route to the one it could have taken without Parwati’s intervention.

As well as caring for a young girl, working at Green Pastures Hospital and being part of IDEA Nepal’s leadership team, Parwati is also studying for her Masters in Sociology.

Anwei Law, International Co-ordinator for IDEA, concludes: “Parwati is an inspiration to all young women affected by leprosy that they too can achieve their dreams.”

Photo: Mr Shetty © TLMI                



AGAINTS ALL ODDS – MR KV SHETTY'S STORY  
As a teenager KV Shetty was eager to sit his high school exams. He turned up at the examination hall fully prepared, with months of revision and hard work behind him. Now would be his chance to show his teachers, peers and family what a good student he was.

But as he waited outside the entrance to the exam hall, he could see small clusters of students looking at him and pointing. Someone called out, “What are you doing here?” Then another said, “We don’t want you here.”

A painful experience
When the chief examiner appeared, the students began to complain loudly, telling him to ask KV Shetty to leave. The chief examiner refused, though he knew why the students were asking this. In the end KV Shetty sat his exam in a room on his own. This was not the first time in his life that he’d experienced such painful rejection.

At the age of ten, KV Shetty developed some blisters on his left leg and on both his elbows. When he was having these checked and cleaned at the clinic, the doctor noticed that the wounds were painless. And KV Shetty began to realise that he did not have any feeling in the two little fingers on both his hands.

Superstitious beliefs
His parents consulted many doctors and eventually he was diagnosed with leprosy. Mr KV Shetty says, “Many godmen and astrologers were approached for a cure as the popular belief that prevailed in society at that time was that leprosy was the curse of an angry god and that it was incurable and hereditary.”

In the midst of this belief system Mr Shetty tried to get on with his life as best as he could. Unfortunately, he continued to lose sensation in his hands – when he held hot food or dipped his hands in hot water he didn’t feel anything.

Mr Shetty was diagnosed with leprosy in the 1940s, before modern drugs like Dapsone or Multi-Drug Therapy (MDT) had been developed. Initially his treatment consisted of painful injections of chaulmoogra oil. These were so painful that KV Shetty eventually refused to have them. His father had heard about Dr Coelho, an eminent dermatologist, at Father Muller’s Hospital in Mangalore, and he arranged for his son to see him. There, KV Shetty was prescribed sulphatrone tablets which, he says, helped him a lot. After a year, Dr Coelho issued him with a certificate stating that he was cured of the disease and that he could continue with his studies at school.

Battling stigma
Although the doctor told him he was cured, the community remained fearful and continued to encourage his parents to carry out expensive rituals to appease the gods. Some neighbours demanded that he be sent away to live in an asylum, others wouldn’t allow their children to play with him. A few even approached the headmaster of his school to ask him to ban KV Shetty from attending. The headmaster refused and his parents continued to support him and show him compassion. 

In spite of the discrimination he was facing, Mr Shetty remained determined to succeed in life. He passed his high school exams and thought that stigma and rejection would be a thing of the past. He hoped that by joining a college for higher studies he would have a new beginning. Sadly, when he turned up at the college to start the course, the authorities sent him away with all his certificates saying that they would not keep a student “infected with leprosy” at the college. Mr Shetty didn’t give up. Instead he joined a teacher’s training college. But he was not allowed to stay in the student’s hostel. “At this moment,” Mr Shetty says, “I felt so dejected that thoughts of committing suicide came to my mind.”

Thankfully, Dr Coelho was able to help; he visited the training college and convinced the students that Mr Shetty was cured of leprosy and they were at no risk of infection. So Mr Shetty continued with his studies and completed his teaching qualification.

Making a living
Shortly after finishing the course he was offered a teaching position at a village school. His career finally seemed to be taking off. But he’d barely started before parents in the community objected to him teaching their children; again they were concerned about the risk of infection. So, under pressure, Mr Shetty left this job and began searching for other means of making a living.

Time after time he was knocked back – due to the obvious deformity in his hands and feet, people found it difficult to accept him. He tried being a salesman but, he says, “his hands betrayed him.” He tried hotel work but there, also, he experienced rejection when the hotel owner told him to leave because he feared the loss of business from employing a leprosy-affected man.  

Finally, after courageously enduring such stigma, he visited a man named Baba Amte who was doing pioneering work in leprosy rehabilitation. He hoped that Baba Amte might be able to give him some guidance about the future and the kind of work he could do.

A valuable meeting
It was through this meeting that the course of Mr Shetty’s life took a favourable turn. Baba Amte suggested that Mr Shetty could be a successful leprosy worker. It was not something that he had really thought about before, but Baba Amte’s comment spurred him on. “This made me start the Bright India leprosy rehabilitation centre in which I am working till this day,” Mr Shetty says. 

In 1977 he received reconstructive surgery on his hands at Chingleput Hospital. Three years later, with a strong desire to help others affected by leprosy, Mr Shetty decided to write a book about his experiences. The Untold Truth about Leprosy was published in 1980. This book was distributed to all the government leprosy medical officers in each State in India.

The response to his book was encouraging; he was asked to join a government of Maharashtra Leprosy study team. Later, he was invited to be part of the Union Planning Commission Leprosy Working Group (1984-5), and then he became a member of the Executive Committee of Wardha, a national leprosy organisation, and a member of the Executive Committee of Hind Kusht Nivaran Sangh.

Starting up
In 1981 Mr Shetty formed Bright India, an organisation established to rehabilitate people affected by leprosy; it exists to help those in need irrespective of “caste, creed or religion.” According to Dr Srinivasan, who performed the reconstructive surgery on Mr Shetty’s hands: “He made it his life mission to start a model rehabilitation centre for leprosy-affected persons in his native village. It took him seven years of sweat, blood and tears, and against all odds, fighting public prejudice, official red tape, corruption and indifference, he managed to set up this centre now known as Bright India.”

In 1984 Bright India bought some land and building began on the rehabilitation centre. In June 1988 it accepted its first patients. The centre is run and managed by leprosy-affected people.

Good support
During the early ’80s it was not just Mr Shetty’s working life that changed; his personal life took an expected turn too. Throughout his younger years Mr Shetty had been unable to find a girl to settle down with: “Because of the stigma of leprosy no girl would come forward to marry me,” he says. Then, at the age of 50, a young woman from his village agreed to marry him. Now, he says, they are happily married and have one son who is a college student (and who will be attending the awards ceremony in Canada with him).

Alongside establishing Bright India, Mr Shetty has, according to Dr Jerome Pinto, honorary secretary of Hind Kusht Nivaran Sangh, given more than one thousand lectures on leprosy at various high schools and colleges in the districts close to where he lives and works.

In 1996, Mr Shetty’s second book was published, Provoking Thoughts on Leprosy, which talks in more detail about Bright India. Both this and his first book give readers a glimpse of what he has gone through to become who he is today.

“Mr Shetty is an excellent example of a leprosy-affected and disabled person who has shown enormous courage and perseverance and succeeded in his endeavours,” confirms Dr Srinivasan. “He also has very sound ideas about rehabilitation of leprosy-affected persons has demonstrated that they work in practice. As such he well deserves to be recognised and honoured with the Wellesley Bailey Award”.

The above stories are published with the kind permission of The Leprosy Mission International.

Wellesley Bailey Awards
The Wellesley Bailey Awards are the only international awards that recognise the accomplishments of people who have been affected by leprosy. They were created in 1999 to celebrate the life and work of Mr Wellesley Bailey, who founded the The Leprosy Mission in 1874. Awards are presented every two years.

For information about the work of The Leprosy Mission International: http://www.leprosymission.org/ 

 

Categories: India, Members, Nepal