The UN and others involved in development and the securing of human rights believe that there will be no solution to society’s most pressing social, economic and political problems without the full empowerment and participation of women. On this International Women’s Day, which many are marking as the 100th, ILEP echoes this sentiment and celebrates all women working to fight leprosy and its consequences and would like to shine a light on Ms Nevis Mary. We are honoured to publish her article, which demonstrates how her life has expanded as a result of her courage and determination, and how she has helped, and is continuing to help, women dealing with the challenges of being, or having been, affected by leprosy by using her voice, person to person, with stakeholders in leprosy and even at the UN.  

To me it is not only a privilege, but also one of my duties to share my thoughts and feelings on this great day - International Women’s Day.

When first I came to know that I was affected by leprosy, the news was dreadful and frightening. FEAR got into me and invaded my every cell. It ran and rocked and shook my mind and world altogether. Fear… Fear of the disease and then stigma and discrimination. Of course it has existed everywhere in communities and families since ancient times, yet to me it was horrifying.

Firstly, I was bedridden and undergoing all sorts of medical treatment for my illness. I also had to discontinue my post-graduate studies. How can I ever forget those days and months during the years 1978 to 1981? As a budding girl in her twentieth year, having golden dreams, aims and ambitions to achieve in life, this piece of truth sliced my heart. I was being shredded every second and torn into pieces. Yes:  that was the situation faced by me and also by many other women affected by leprosy in almost all societies, though possibly to different degrees.

Women and girls affected by leprosy suffer from multiple problems in areas such as education, employment, marriage and attending social functions. Girls affected find it more difficult to get married. In India this type of discrimination is more prevalent among the educated and the higher income groups and less among the poor. It is a risk for newly married young women in a few countries where there is provision in law for easy divorce. Above all the burden of secrecy harasses their mind.

Coming again to my own experience, I got cured with MDT in 1986. My heartfelt thanks to WHO, ILEP, other NGOs and government organisations for their efforts in the introduction of MDT and its free supply.  

From 1981 to 1986 I had a daunting experience. Illness on the one hand and, on the other, grief. I lost my loving father in 1983 and my beloved mother in1985. My elder brother and elder sister got married and they had their own families to care for. I was left with three younger brothers to take care of. It was very difficult to get our daily bread. Twice I was deprived of my job just because I was affected by leprosy and I was informed that I was inefficient. It was difficult for me to find a suitable life partner also. Many a time I felt lonely and frustrated. My life was a series of questions: Where to go? What to do? How to live?... Finally I took stock of my situation and braced myself. I kept encouraging myself and started nourishing my mind with hope and courage. Positive thoughts took over and I started my journey with renewed vigour towards a sunny direction. I feel that getting medically cured is not the only solution for women who are affected by leprosy. Beyond that, getting into the normal stream of life and living in the community makes them empowered.

I continued my education, competed in examinations for government services, succeeded and secured a permanent job with Indian Railways. That was the turning point in my life. I got married. I regained dignity and my social status.

Now I can recollect my evergreen memories. When I, in 2003, for the first time attended the Women’s Empowerment Workshop organised by IDEA (The International Association for Integrity, Dignity and Economic Advancement) in Chennai, India, I became empowered.  It was positive working with 45 women from all over India and two from Nepal. Sharing our experiences with one another freed our burdens and getting guidance empowered us. For this I thank IDEA. From then onwards I was invited by IDEA-India and The Nippon Foundation to attend many workshops and conferences on leprosy. I felt much more empowered when I raised my voice in the United Nations Sub-Commission on the Promotion and Protection of Human Rights in Geneva, in August 2005, and spoke about stigma and the continuing fear of discrimination and social isolation faced by persons affected by leprosy. I feel thanks to The Nippon Foundation for giving me that golden opportunity.

As a member of IDEA-India, I have participated in leprosy services to motivate the other women affected. The fear I felt, the barriers I crossed and the empowerment I gained have helped me to share my thoughts and experiences with them, to encourage them to know their potential and to work together to get empowered. I am delighted whenever I see the fighting spirit in each woman’s face as she gains her dignity. I still remember the slogan on the banner in the Women’s Empowerment Workshop in Nepal “We don’t want to live on charity, but want to live with dignity.” Women should be better educated and better informed. Only then they can involve themselves in decision-making.

I received the prestigious Wellesley Bailey Award in 2007 and that was another milestone in the path of my empowerment. I am thankful to The Leprosy Mission International for recognising my achievements.

My involvement with WHO, ILEP and other NGOs is really inspiring. They help women like myself and others who are facing the challenges of leprosy to become self-dependant, to know our rights and to develop a sense of community spirit so that we can face challenges as a team rather than as individuals. Attending the meetings organised by WHO/SEARO in Delhi-India and Manila, the Philippines, widened my knowledge and encouraged me to become involved in leprosy services.

I was really very glad when the guidelines to strengthen the participation of people affected in leprosy services were developed in Manila last year and particularly glad when strategy for dealing with gender issues was discussed and guidelines were developed to promote access of women to services and participation of women in the delivery of services and also to promote positive women, who have also faced daunting experiences, but who have remained empowered, as role models to give support and guidance for others in need.

To sum up, I would like to quote our former Prime Minister (Late) Mr Jawaharlal Nehru’s words “You can tell a condition of a nation by looking at the status of its women”. I hope all women affected by leprosy form a network and become involved in leprosy services to fight against stigma and to move towards a world without leprosy.

Bitter to remember how we were in those days
But sweet to reflect what we are nowadays.
No help…no love…no cure in those days
A big network ready to care and cure in these days.

Terrors may draw you nigh
Always have a vigilant eye.
You may faint or you may fail
Contact the network to make you prevail.

Ms Lourdes Nevis Mary
Contact: nevisil@yahoo.com

International Women’s Day 2011:
http://www.un.org/en/events/women/iwd/2011/history.shtml

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