Leprosy and Human Rights Meeting at the UN Sub-Commission on the Promotion and Protection of Human Rights, 55th session
Participants at the Geneva Meeting (left to right): Arturo C. Cunanan, Jr.,
Magdalena Ramirez, Kenzo Kiikuni, Birke Nigatu, P. K. Gopal, Yohei
Sasakawa, and Jose Ramirez, Jr.
For too long, people affected with leprosy have suffered social discrimination, yet their voices were not heard and the problem has not been officially dealt with as a human rights issue. As reported in the last issue, Yohei Sasakawa met with Acting UN High Commissioner for Human Rights Bertrand Ramcharan on July 2nd in Geneva to discuss the problem of discrimination against people affected with leprosy. Mr. Ramcharan agreed that the issue must be dealt with as a human rights issue. At his suggestion, a briefing meeting was organized by The Nippon Foundation and Sasakawa Memorial Health Foundation at the 55th Session of the UN Human Rights Sub-Commission on August 4, 2003. This was the very first meeting in the history of the UN Human Rights Commission to take up the issue of leprosy as a human rights issue.
During the period of the Sub-Commission meetings, an exhibit was arranged with 18 photo panels displaying messages from leprosy affected people calling for better awareness of the strong social stigma they continue to experience worldwide.
The briefing was chaired by Dr. Kenzo Kiikuni, Chairperson, Sasakawa Memorial Health Foundation. Presentations were made by Yohei Sasakawa; Arturo C. Cunanan, Jr., Head, Culion Leprosy Control Project, Culion Sanitarium, Culion, Philippines; Birke Nigatu, Chairperson, Ethiopian National Association of Ex-leprosy Patients; Jose Ramirez, Jr., Advanced Clinical Practitioner, Department Director for Network and Transportation, IDEA (International Association for Integration, Dignity, and Economic Advancement), Texas, USA; Magdalena Ramirez, Social Work Program Manager (VA Hospital, Texas); and P. K. Gopal, President, IDEA, India.
Each speaker reported the history of the difficult lives people affected with leprosy have had and the current situation in which there is still strong social discrimination and stigma against them. There were voices of surprise from the audience who, for the first time in their lives, heard about what people affected with leprosy continue to endure.
This was a very significant step forward in the fight for the elimination of leprosy as a human rights issue. This was the first opportunity provided for people affected by leprosy to speak at the UN Human Rights Sub-Commission, and it generated very positive reactions from the people concerned. It was agreed that further efforts need to be continued toward creating more occasions to convey this issue to a world audience.
The following are condensed versions of speeches given at the meeting.
Yohei Sasakawa
We who are working for the elimination of leprosy have set elimination (as a public health problem) by the year 2005 as our target. Since 1985, thanks to the introduction of MDT, well over 100 countries have achieved the elimination goal but there remain about ten countries that still have high prevalence rates. The goal of eliminating leprosy as a public health problem is clearly in sight. Now, however, it is time to seriously consider how we are going to tackle the difficult social issues associated with leprosy; the discrimination that arises from prejudice and social stigma.
Since the dawn of recorded history, there have been numerous references to leprosy. Accounts of it can be found in the Old and New Testaments, the ancient documents of China, and Indian classics from the sixth century B.C. All of these show that, from time immemorial, the individual with leprosy has been treated with all of the fear that dwells deep within the hearts of people.
In Japan, there existed a law justifying the segregation of sufferers until seven years ago. Recently, however, those who had been expelled from society sought compensation from the government for the loss of their rights and in May 2001, they won their case. Immediately after this victory, one of the plaintiffs described his feelings by saying, "Human rights are like air. I feel that today is the first time that I can breathe freely."
The history of leprosy is the history of men, women and families whose lives have been completely determined by this particular disease. There are tens of millions of people who are still suffering from unnecessary discrimination and resulting injustice.
Arturo C. Cunanan, Jr.
I represent people affected with leprosy in the Philippines. I am among the third generation of the original patients who were sent to Culion. I became a medical doctor, and have experienced discrimination, even though I have never contracted the disease myself.
Culion at the present time persists in suffering the effects of stigmatization. There is still a myth that Culion is synonymous with leprosy and that all inhabitants have the disease. Culion is still basically considered an island of the living dead, and leprosy is still often considered to be a disease that is highly contagious and hereditary.
The effect of this is that, at present, we still do not experience equal employment opportunities, Culion students are often made to feel inferior, descendants of Culion live as outcasts, hiding their identities, and on the economic side, it is difficult to market Culion products, as people will not purchase products − especially food products − from Culion.
The people of Culion wish that the world would be free of leprosy, and especially that we had a world free of the complications of prejudice and stigmatization, and they hope that all people will work together to live in harmony and peace with mutual respect and human rights.
Birke Nigatu
Many leprosy-affected people in Ethiopia have developed visible disabilities and are classified as the poorest part of society. Disability and poverty are the results of segregation, feelings of inferiority and improper treatment.
As is common in most countries, our society − including ex-patients − has developed misconceptions about the disease. Due to a lack of knowledge of leprosy, the disease is referred to as a curse, hereditary, from God, or caused by some supernatural power. Such misunderstandings about the disease have led to victims hiding themselves or being driven from their homes and separated from their families. Most victims don't even know that leprosy is curable. As a result, they end up with disabilities.
Since society has developed an exaggerated fear of the disease, no one is interested in making social contact with leprosy-affected people. Employment is also hard to find. In general, leprosy has made the lives of those affected miserable and caused the denial of their rights as human beings.
Jose Ramirez, Jr.
One person's family history may not be very significant, except to his/her immediate family. However, when family history is taken away, that individual ceases to exist in the eyes of society. Collectively, when the identity is stripped away from millions of individuals diagnosed with leprosy, the end result is that stigma and prejudice takes the place of their existence.
When I was told that I had leprosy in 1968 − "the curse of mankind" − I felt the frightening sensation of drowning.
Following my diagnosis, I was placed in isolation at the local hospital, where people were only allowed to enter my room if shrouded in a hospital gown, cap and gloves. Adding to this indignity, I was transported 750 miles in a hearse to the only leprosarium in the continental US.
My diagnosis, and seven years of institutionalization, placed me in a position to experience the extreme depression, suicide ideation, physical and emotional scarring, and unrelenting pain and ostracism felt by millions of my brothers and sisters diagnosed prior to 1968.
It is important that this commission not maintain the "Law of Silence" regarding leprosy, as people affected by leprosy oftentimes do not believe that they possess rights. You can help in reversing this belief.
Magdalena Ramirez
I am married to Jose Ramirez, Jr., who had Hansen's disease.
Jose and our family have suffered many insults, prejudice, and discrimination. With the closure of the Hansen's Disease Center, and the opening of community health clinics for the treatment of Hansen's disease, we are once again seeing a pattern of stigmatization of Hansen's disease.
On our way to Geneva, from Houston, Texas, a woman at the airport asked us what we were carrying in the big box we were taking with us. Jose told her that they were displays on leprosy for the United Nations in Geneva. "Leprosy?" she said, "I thought it was nonexistent, and that it was cured a long time ago."
That's the kind of response that is specifically the problem we face today − that the general public thinks that Hansen's disease is non-existent, and therefore dismiss it as not a very important or significant health or human rights issue.
P. K. Gopal
The leprosy started in my body when I was twelve years old. My father took me to a government hospital, but it was not diagnosed. Even if it had been diagnosed, there was no specific cure at that time.
Seven years passed, and when I was studying at college, there was a medical check-up at the college. The doctor diagnosed me as having leprosy. This was a big shock to me and my family. I continued to pursue my studies however, even with physical disabilities. Fortunately, my family loved and supported me, and so I could persevere.
In most cases, people affected with leprosy were abandoned by their families and communities. When there was a leprosy patient in a family, the entire family was socially and economically affected. People refused to marry a woman from that family. When the person had visible deformities, it was very difficult for the family to find a house they could rent to live in. Thus the family was socially boycotted by the community. Husbands could easily abandon their leprosy-afflicted wives, and parents often disowned their children with leprosy. So the disease played havoc with the social fabric of the families of people with leprosy.
The people who completely lost their social and economic positions, and were driven away to the streets due to leprosy, were forced to beg for a living. These people began to live together in places away from the community and these places were called leprosy colonies or leprosy villages. There are 300 leprosy colonies in India.
Being cured of the disease alone does not restore normal socioeconomic status to those affected. Fear and wrong notions about leprosy still prevail in the minds of people. As a result, discrimination of people affected by leprosy still continues in many ways.
It is necessary to make those affected by leprosy conscious of human rights and to sensitize them to identify the violations, reporting the incidents to concerned authorities in order to solve the problems.
Ambassador Meetings
Ambassador Yohei Sasakawa met the following people during
the month of August 2003:
August 5th − Visit to LEPRA (British Leprosy Relief Association) in Colchester, including meeting with Terry Vasey, President.
August 5th − Visit to the University of Essex to exchange views on leprosy and human rights issues with Professor Paul Hunt, Special Rapporteur for the UN Human Rights Commission.
August 27th − Meeting with ILEP (the International Federation of Anti-Leprosy Associations) Coordinating Bureau, Dominique Martineau-Needham, General Secretary, and Trevor Durston, of the Steering Committee.
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