The Wellesley Bailey Awards
The Wellesley Bailey Awards
Created in 1999 to celebrate the life and work of Mr Wellesley Bailey, founder of The Leprosy Mission, these unique awards honour those who have made extraordinary contributions to society through overcoming the social stigma and physical challenges of leprosy.
Created in 1999 to celebrate the life and work of Mr Wellesley Bailey, the founder of The Leprosy Mission, the Wellesley Bailey Awards honour those who have made extraordinary contributions to society through overcoming the social stigma and physical challenges of leprosy. The Wellesley Bailey Awards have taken place nine times since 1999. The next awards are due to take place in 2022.
All recipients of the Award have been active members in their community for at least five years and will be champions for the rights and inclusion of people affected by leprosy.
Find out more about past recipients
Birke is the founder and executive manager of the Addis Ababa Women Leprosy Patients Association which is called “RAY YE SETOCH EJESERA BUDEN”. After overcoming all the problems related to leprosy and some horrible acts of violence in her past, she started this women’s group project in 2001 to help those in the same situation she once was. The workshop produces local handicrafts.
Currently the working group comprises of 82 permanent workers (8 men and 74 women) and 10 temporary women who have been leprosy affected or are a family member of someone who had leprosy. Before joining the working group they mostly had been engaged in begging. Birke feels proud because all her workers are able to make their own living and send their children to school from the income they earn. They lead a dignified life.
Every year, Birke is on the fundraising committee to raise funds for awareness raising and advocacy for the World Leprosy Day events held by the Ethiopian National Association of People Affected by Leprpsy (ENAPAL) at national as well local levels. That means lobbying at Embassies and other local enterprises for funds for the World Leprosy Day events.
Birke emphasises the need for people affected by leprosy to liberate themselves from the feeling of being marginalised. She says that they themselves should be part of the solution. She believes: “It is the right time to ask the government regarding the fulfilment of our rights”.
Kofi has travelled extensively throughout Ghana by bus, riding up to 47 hours, to reach different communities to educate them about the modern realities of leprosy. Whenever Kofi meets someone who has experienced leprosy, he encourages them, saying that leprosy is not the end of their life.
During his visits to leprosy communities to address the stigma and discrimination people faced, Kofi met many people who wished to return to their families and homes. These individuals had been forced to live in separate communities, some for up to 50 years, because they had had leprosy. Kofi initiated a programme to reunite people with their families one by one. First, Kofi travels to a person’s village by bus, bicycle and foot to personally meet with family members, village chiefs and elders, and representatives from different religious communities. Then he provides them with information about leprosy and responds to any questions or concerns they may have. Lastly, Kofi joins the individual on their journey home. He often follows-up with the person after their return home, visiting and providing further encouragement.
Since the program began in December 2003, Kofi has helped 861 people return to their home or nearby village. Today, there are no more Ghanaians living in leprosy colonies.
Kofi’s work has laid the foundation for people, long isolated from society, to go back to their hometowns and regain their rightful places in their home and family. When people return to their home and became more involved in society, community members realise the value of the contributions people could make to their community. In several instances, these individuals have found that they are the oldest surviving member of their village, and immediately became respected for their knowledge of its history. Others have been asked to serve as advisors to the chiefs of their village. As Kofi's approach to helping people return home has been holistic in educating families and communities, this has proven to be an essential step in overcoming stigma throughout Ghana.
For more than 30 years now, Shehu has been actively speaking up about leprosy in as many places as he is able.
- He has written and recorded radio jingles in Hausa language.
- He has facilitated documentaries and seminars about leprosy on the radio / TV
- After prayer in mosque he gives talks about leprosy.
- Though he is a Muslim, he has spoken in churches too
- He has given community awareness talks about leprosy in public areas such as cinemas and markets
- Shehu has designed and printed (often at his own expense) leaflets in Hausa and Arabic with the basic message that leprosy is treatable, treatment is free of charge. Even though impairments are present, the leprosy has gone
- He has written a book in Hausa based on JM Watson’s books
In 2003, The Leprosy Mission supported the relaunch workshop for IDEA Nigeria – Shehu was elected as Chairman and served two terms (a total of 8 years).
The organisation has grown from strength to strength under his leadership, not only at the national level, but also at the State Branch level. Shehu has been able to rally people affected by leprosy together to speak about their rights, not hide away in shame.
Joint National Association of Person with Disability (JONAPWD)
Shehu served as the National Chief Whip for 2 terms. He has been able to encourage other IDEA members to apply for other positions. Thanks to Shehu people affected by leprosy are fully integrated and active in JONAPWD; the State Chair for Akwa Ibom State is a lady affected by leprosy (only female chairman)
Through the lobbying of IDEA and JONAPWD, there is now a Desk Officer for people affected by leprosy at the Federal Ministry of Women Affairs and Social Development (within the Rehab department).
Two key achievements
Right to go attend hajj: An IDEA member from Kogi State who had fully paid up to go on Hajj to Mecca, was suddenly told he could not go and his money was returned to him. The reason? People affected by leprosy are forbidden to go to the holy city. Shehu heard about the incident and with other IDEA leaders they travelled to Kogi to speak up on behalf of the man. Unable to convince the State, they approached the governor of Zamfara State who agreed to let the man join the Zamfara State contingent.
Right to vote: During preparation for the 2007 elections, the voting method was by thumb print. Shehu and representatives went to the National Electoral Commission headquarters in Abuja to lobby for accessible elections. By working together with NEC, JONAPWD was able to develop methods whereby people with different impairments were able to vote.
After being released from treatment at TLM's DBLM Hospital, Motiar saw that most of the leprosy affected people were not able to get back into their family after leaving the hospital. Therefore, by accumulating money and resources from 21 patients at DBLM hospital, and through the support of DBLM hospital itself, he took the lead in developing 21 decimals of land beside the hospital premise and established a tiny village for leprosy affected people named “Shanti Gram" (Village of Peace).
Motiar also played a significant role in the building of a 2.5km stretch of road which connects the village to the main highway. He worked with the Government of Bangladesh to ensure that the village would be well connected to mainstream society in this way. He has continued to work with the Government in ensuring that people who have experienced leprosy are able to have their rights respected and so that they can access the welfare support that they need.
His support to his community in providing advice, signposting, and a place for them to find welcome and friendship has meant that he has helped more than 1,000 persons affected by leprosy.
After being cured of leprosy himself, Anjan decided to update his knowledge of leprosy and help fellow leprosy affected persons. He took a Physiotherapy Technician Course at Christian Medical Collage, Vellore; and started giving physiotherapy to patients at Bandorwalla Leprosy Hospital, Pune. In 1995 he did the certified course on “Feet in Leprosy” conducted by the Leprosy Mission International, and started manufacturing and distributing the Orthotic Foot and Hand Splints to leprosy patients.
Anjan's contribution in the field of manufacturing artificial limb support equipment has helped a significantly large number of persons to perform their daily chores with reasonable ease. He has even produced research papers on treatment by using Orthotic Pads and on the care of hands and feet in leprosy patients, which have received acclaim at international symposia. He became a regular guest lecturer at various national and international conventions.
Mainudin’s involvement as a self-help group facilitator has been a huge help to many people who have experienced leprosy in Nepal. This role eventually led to him being selected as the president of a formally recognised and registered network of self help groups that had spread throughout Dhanusha, Mahottari Sarlahi, and Sindhuli districts.
After 10 years he is still directly involved with his original group in Kapileshwor village which was split to make two groups when it grew to be too large (there are 75 members between the two groups the majority of which are leprosy affected people but there are also other disabled and marginalised people in the groups).
Manudin is a highly esteemed role model. His influence and activities extend throughout the most highly endemic area for leprosy in Nepal. It is, however, the uniqueness of his acute sense of civic duty that has won him and his groups high regard as positive change agents in their communities and as such they have significantly reduced the stigma of leprosy with its related discriminatory effects.
Manuidin remains firmly committed to a principle that suggests that respect is earned. Through a number of civic minded initiatives, he and his groups have changed the perception of those affected by leprosy as being “a curse” to people who are considered to be positive change agents and therefore a highly desirable group of people to have in the community. This has been recognised and stated openly by local government officials and significant community leaders. A P Scale survey demonstrated that 98% of people affected by leprosy in Manuidin’s community did not report participation restrictions that were any greater than the general population.
He and his groups have had orientation on rights based issues and have an awareness of what benefits and resources they should have access to. They have successfully lobbied for provisions and resources and have demanded action on issues like the issue of identity cards.
Parwati is one of the founding members of IDEA Nepal which began in 1998. (IDEA is an international human rights organisation that advocates on behalf of people affected by leprosy. IDEA Nepal is one of IDEA’s 23 branches.) Within IDEA Nepal Parwati was elected to various leadership positions and is currently Vice President of the organisation. In this role she advocates on behalf of people affected by leprosy, with a focus on women’s issues. As one of the few women within IDEA Nepal’s leadership she is a steadfast advocate for women within the organisation.
Parwati was a principal organizer of IDEA Nepal’s first women’s national empowerment workshop in 2006, and has participated in follow-up women’s empowerment workshops held in Nepal’s five regions over the past two. Parwati also serves on one of IDEA Nepal’s regional committees in Pokhara, and is building partnerships with local and international organisations to address the dignity and human rights of people affected by leprosy. She is also helping to develop training, scholarship and income generating programs, to promote self-reliance as well as legal advocacy to inform people of their rights.
After recovering from leprosy himself, Mr Shetty wanted to do something of service for the less-fortunate leprosy patients, and decided to write a book, and in 1980, Untold Truth about Leprosy was published. The book was distributed to all the Leprosy Medical Officers in the States throughout India, and as a result he was asked to join a Government of Maharashtra Leprosy Study Team. He has also been an ‘invitee at the Union Planning Commission Leprosy Working Group (1984-5); a Member of the Executive Committee, National Leprosy Organisation, Wardha; and a Member of the Executive Committee, Hind Kusht Nivaran Sangh (1993) under the Presidentship of the President of India. He has used all these positions to voice fearlessly problems and solutions.
Mr Shetty established the Leprosy Centre in Karnataka. It has been accepting patients since 1988 and is entirely self-sufficient and managed by leprosy-affected persons.
Koichi experienced leprosy during World War Two, when the support available to him was very poor. He suffered from serious wounds and his hands and feet were badly damaged by the disease. He eventually lost his eyesight due to leprosy. Together with another patient at the leprosy sanatorium where he lived, Koichi established a band. Despite having no fingers and no eyesight, Koichi mastered the harmonica and learnt to read and write music in braille. Through Koichi's perseverance, the Blue Bird Band was set up. Koichi led the band, which its first public appearance in 1954 at the new year gathering of the blind peoples' association at Koichi's own sanatorium. The band continued for another 22 years, having performed publicly 35 times. As the band’s achievements became known widely, similar music bands were born in other sanatoria and they all provided the opportunity of empowerment.
For Koichi, the whole process of leading the band – from listening to music through radio first, then taking the scores down in Braille, distributing the Braille scores to each parts of the band for them to lip/tongue read and learn, then ensemble in harmony – was the proof to himself of “Where there is a will, there is a way”. Humbly he thanked for being given a role as a catalyst of change for many.
Mary faced many obstacles through her early years, including leprosy, the loss of her parents, sexual assault, and discrimination. However, she persevered and achieved qualifications in sociology, education, German language, and railway engineering. She got a job working for the railways, which has helped to reduce the stigma that too often surrounds leprosy. Mary has become a role model to other persons affected by leprosy. She helped three women and two men to get jobs in different offices, she is an active member of IDEA and she often travels to encourage and guide persons affected by leprosy. She represented leprosy-affected persons before the 57th session of UN Sub-Commission on the Promotion and Protection of Human Rights at Geneva, Switzerland on August 5, 2005.
In 1989, prior to being diagnosed with leprosy, Zilda was working with the Pastoral Institute for Public Education in Health and as part of this work, gathered together a group of women who lived on the edge of a sewer in the outskirts of Cuiaba, Mato Grosso do Sul. More than anything, she wanted to listen to the women so that together they might find solutions. After some time together, the women talked about many things but, even though most of them had leprosy, they would not talk about this. However, one day one of the women looked at Zilda and said, “You have the spot disease” and it was this woman, Dona Joana, who took Zilda to her own doctor, where she was diagnosed with leprosy.
Once she was diagnosed, Zilda made the decision to follow the treatment correctly and, in her own words, “lifted up my head, and opened my heart and mind to accept the prejudicial attitudes of others. It as a great accomplishment to be able to publicly acknowledge, without fear of shame, that I had the disease, and to face all the difficulties related to the prejudice and stigma associated with people’s outdated images of leprosy. I transformed them into the strength to tell people about Hansen’s Disease. The distances shortened and the fear was clothed with courage.”
When the women found out that Zilda had the disease, “the silence was broken.” She saw the effort that people without any visible signs of the disease made to hide living with the constant fear that they would be discovered. Zilda went through many neighborhoods in Cuiaba, Campo Grande and Corumba, gathering people, especially women, together to talk about leprosy. She also considered all the other problems that affected people who are poor, such as hunger, unemployment, violence, etc. She recognised that these problems were a result of the uneven distribution of wealth in the country.
During 11 consecutive years of seeking people out listening to their problems and their concerns, Zilda realised that for women the best place to talk about one’s inner thoughts was in the kitchen of people because it was there that they felt safe. She initiated a process whereby the women helped each other, and continue to do so. Zilda’s grassroots approach to learning about people’s problems, especially the problems of women, has resulted in the formation of many women’s support groups in the communities in which she lives and works.
Jamnian has become a recognised practising expert in organic farming and eco-friendly agricultural techniques within Thailand, and has been a teacher and demonstrator for overseas farmers and agriculturalists visiting in international study programs.
Jamnian’s work became known and respected by professional agriculturalists in the Thai Eco-friendly and Sustainable Agriculture network, and he began to receive invitations from the Agriculture Bank to be a teacher and demonstrator for eco-friendly farming seminars. His farm is used as the demonstration farm for international seminars and his influence is a practical and inspirational one extending beyond Thailand. He has prepared teaching posters, information, and demonstration materials which have been used widely.
The produce from his orchards was acclaimed as being chemical-free and of excellent quality. Buyers of organic produce began to seek his crops. In the past Jamnian needed to seek out buyers willing to purchase from an obviously disabled man, perhaps at lowered prices. Now Jamnian has discerning buyers applying to buy his crops in advance because they recognise the quality and reliability of his organic produce. He is an unashamed and effective advocate for leprosy patients’ integration in society, and an overcomer of leprosy stigma.
Jamnian’s example and teaching is not only in relationship to his organic production methods but in relation to his sustainable agricultural planning. He has developed and is an enthusiastic demonstrator of a model sustainable agricultural area. He has fruit orchards, some planned for producing out of the main season, he has vegetables, fish farms next to orchards on his different properties, and bee hives under the different orchard trees so he can produce different flavoured honeys.
Ato Arega has participated in community affairs by serving as Chairperson of the Parents' Committee of a public school called " Hamle 19 " for three consecutive terms or six years. When elected for the chairmanship, the number of students and teachers were very low. At times the school was unable to pay the monthly salary to teachers. The compound did not have a fence, and there was no tap water for students. After becoming Chairperson of the parents committee (a governing board of the school), he took the initiative to mobilise the community and relevant organisations to solve the problems. As a result, the number of students and teachers increased dramatically. The standard of the school improved significantly, and the assessment of the school by the Ministry of Education proved that the school has reached the level of a junior high school. For this extraordinary leadership and coordination Ato Arega was awarded the title “Commendable Education Person of the year” by the Ministry of Education in the 1984. This achievement is a unique achievement for a person who has experienced leprosy, particularly in a community where he is the only person affected by leprosy and in a society where the social stigma is very strong.
Ato Arega started the establishment of the first association of persons affected by leprosy by establishing the association in Addis Ababa and he continued his effort to organise similar associations all over the country by traveling to seven regions and 17 sub regions. As a result, based on his wise leadership and organising abilities, Ethiopians affected by leprosy were able to establish a unique association: The Ethiopian National Association of Ex Leprosy Patients (ENAELP). In addition to organising the National Association, he has been serving the association as a Chairperson since its establishment in 1996. The establishment of ENAELP is an extraordinary achievement not only in Ethiopia but also all over the world. He has been awarded a certificate for this achievement from The Federal Democratic Republic of Ethiopia Rehabilitation Agency
Ato Arega's organising and leadership skills and abilities have enabled him to be one of the leading figures in the Ethiopian disability movement. He was one of the disabled people organisation leaders who organised (EFPD) in 1996. And he has been serving the federation as a vice president since its establishment. In the process he has enabled his national association to be an active member of the Ethiopian disability movement. He has received a certificate of acknowledgment from the four national associations for his outstanding contribution to establish the federation.
Dr. Gopal was officially diagnosed with leprosy when he was taking his final university examinations, which had to be postponed as a result. He was unable to tolerate dapsone, the drug that was used at the time, and there were complications arising from the disease, so he suffered with physical pain, social stigma and swelling of his face and feet.
He overcame his difficulties with a determination to pursue his studies, and he worked for 25 years as a Rehabilitation Officer in the Sacred Heart Leprosy Centre. Dr. Gopal’s research has been recognised internationally, and his rehabilitation programs have become a model for many other organisations. He has worked to provide opportunities for people affected by leprosy, of all ages, to live normal, integrated lives in their communities. He was awarded his Doctorate Degree in rehabilitation in 1993.
Dr. Gopal was a main force in the establishment of IDEA, the International Association for Integration, Dignity and Economic Advancement, and he is their President for International Relations. IDEA was established in 1994, and now has 30,000 members in some 30 countries throughout the world. It operates as an international network of support that seeks to end the social isolation that is often associated with leprosy by helping those affected to regain the identity, self-confidence and dignity that is so often taken away from them by the disease.
Dr. Gopal’s influence has been felt at the local, national and international levels: by individuals affected by leprosy in Asia and other continents, by government workers, by health professionals, and by ILEP organisations.
Mr Lin was diagnosed with leprosy at the age of 8, and he had to stop schooling. However, he never gave up studying, and he attended school whenever possible. He started to write articles, essays and short stories, many of which were published.
Mr Lin has overcome great hardship, with a very positive attitude to life. He fought against stigma to achieve his lifelong dream of writing down the experiences and real feelings of the people affected by leprosy in China, and then to get the book ‘No Misery in the World’, published. It is the first book written by a person affected by leprosy in China. It has had wide publicity and had a great affect in the community. The book has achieved two things: it has both raised public awareness that people affected by leprosy can work and contribute to the community, and it has brought encouragement to others affected by leprosy.
In addition, Mr. Lin is the Vice-General Secretary of HANDA, IDEA’s branch in China, and he is the chief editor of the HANDA Newsletter.
Although no longer young, he still devotes himself to promoting the dignity of people affected by leprosy and generating a better understanding of the community towards people with leprosy. He continues to use his pen to express peoples’ ideas and thoughts, fighting for a ‘No Misery, No Stigma’ world.
When he was diagnosed with leprosy at the age of 13, Mr Masih had to leave his family, and enter the Bethesda Leprosy Home, where he received treatment and was able to continue his studies. Mr. Masih has stumped fingers as a result of the disease, and he lost his left leg in a blasting accident. Whilst at the Bethesda home he became a Christian and was baptised. His consistent Christian faith has supported him through difficult times.
Mr. Masih is married, with five children. He worked as a watchman, and supplemented his meagre income by starting a pig farm with a colleague. He is someone who has managed, in spite of the difficulties caused by leprosy, to have an economically viable and educated family. His own achievements, and those of his family, have set an example to the members of the Ghogranala leprosy colony. When he first went to the colony, it had about 50 families whose main source of income was begging in the nearby town and on the railway station. He encouraged the heads of the families, most of whom had gross disabilities, to work at farming and other small businesses rather than begging, and he has consistently fought with governments and other administrative organisations for the rights of leprosy patients, to improve their quality of life.
In South America, leprosy is officially known as Hansen’s Disease (HD). Zelina Batista de Sena’s parents both had HD, and when she discovered over 30 years’ ago that she also had the disease, she left home in search of treatment and a job. After struggling alone for ten years, she moved to one of the former colonies for people with HD. She found the administrative system was restrictive, and together with the prejudice from society, gave no opportunities for reintegration. At that point Zelina started her never-ending fight to reintegrate people affected by HD, who had been isolated from society by the health policies of the 1940s, 50s and 60s in the State of Ceará, Brazil.
Zelina found work in a school, and her first successful fight led to the official participation in school meetings of mothers affected by HD, who had formerly been excluded. This was the first of many. She helped found a branch of volunteers of the Movement for the Reintegration of Persons Affected by Hansen’s Disease (MORHAN), and gathered more people together to fight against injustice. Not only have her achievements affected people in the area in which she lives, but indirectly many others have been helped through her participation in the national network of MORHAN. The changes brought about by her actions have had a widespread effect on all aspects of the lives of individuals affected by Hansen’s Disease, from improving their quality of life to leading them to exercise the rights and responsibilities of full citizenship.
Hirasawa was diagnosed with leprosy at a time when those affected by the disease were held in sanatoria in Japan and were not allowed to leave the premises without permission from the authorities. Hirasawa worked with other patients in the sanatorium to campaign for more rights and gradually became an advocate for persons affected by leprosy. Although there was much stigma around leprosy at the time, Hirasawa was open about the disease and did not change his name or try to hide the fact that he had experienced leprosy. He campaigned to repeal the discriminatory Leprosy Prevention Law in Japan and has been invited to advocate at international IDEA events.
Jung was diagnosed with leprosy as a teenager and was resettled in a village for persons affected by leprosy after being discharged from treatment. He developed a livelihood as a farmer and encouraged other persons affected by leprosy to do the same. He helped to remove some of the stigma surrounding the disease by supplying poor neighbourhoods in South Korea with rice, the main staple in the Korean diet. Since the 1980s, Jung worked to improve the work of farmers in the resettlement villages and facilitated leadership courses. He began to publish a monthly magazine called Hansung, which told the stories of those affected by leprosy. Jung's efforts have brought dignity, hope, and financial security to many people affected by leprosy across South Korea.
Humbert was removed from his community when he was diagnosed with leprosy in the 1930s. He was angry about this decision and did not feel the restrictions placed on him were fair. Throughout his life Humbert has acted as a leader and an advocate for persons affected by leprosy, forming organisations and associations that allow for a collective voice for persons affected. As his hard work has led to greater recognition, Humbert has been in a position to advice and support NGOs and the government in their efforts to support persons affected by leprosy and persons with disabilities.
Bernard’s leadership roles have been many. He was Chairman of the Kalaupapa Patients’ Advisory Council for many years and leader of the Hale Mohalu Ohana, which fought to keep a residential treatment facility for Hansen’s Disease open as a home away from home for Kalaupapa residents. Bernard also served as Vice-President of the Kalaupapa National Historical Park Advisory Commission, President of the Democratic Precinct of Kalaupapa, Board Member of the Western Hansen’s Disease Institute, and a Member of the Hawaii State Board of Health for two terms.
As Vice-President of the Coalition for Specialized Housing, Bernard was instrumental in developing a 17-million-dollar affordable housing facility for senior citizens and persons with disabilities, including individuals with Hansen’s Disease who wanted to live independently in the community.
In 1997, Bernard was elected as the President for International Advocacy for the International Association for Integration, Dignity and Economic Advancement (IDEA). In this capacity, he has traveled to many different countries, often surprising people by his willingness to travel alone.