Special Session

Martin Jan Stránský
Please take your seats Ladies and gentlemen, thank you. It is my pleasure to introduce the last session today, of the first day of the Forum 2000. This session is going to be devoted to the human right to health. Mr. Sasakawa, members of the panel, honored friends.
In the last five years, this forum has been exploring the various forces behind social economic and political inequality, as well as their possible solutions. Various differences in attitude and approaches to these issues by various cultures have been discussed by their representatives. Yet, if there is one readily discernible area of humanity where one part gains, while another loses, it is the area of human suffering caused by illness, disease and death, often against the background of the sweeping inequality of poverty and other forms of inequality mentioned by Presidents de Klerk and Clinton today. The welfare of each and every society on planet Earth is underpinned by the health factors that impact on that society. Namely, morbidity and life expectancy. This occurs against a stark paradox of globalization, and increased access to knowledge and delivery of health care in some areas of the world, but not in others.
In previous forums, we heard terms such as “moral minimum.” Today, Elie Wiesel said that hope is a major component of existence. To what extent, then, is the denial of the hope of a full life of giving both infant and adult a reasonable chance to live and survive, a denial of those values that we hold dear, especially when we passively and sometimes even actively deny access to medical care. How shall we view efforts aimed at relieving the suffering caused by political oppression, when in a single day more people in Africa die due to the denial of health care, than did in the entire Kosovo conflict. When in
a single day, the HIV virus infects sixteen thousand men, women, children and infants, sentencing most of them to death. Or, at best, by treatment with only one aspirin a day. In July 2001, the New England Journal of Medicine, America’s most prestigious medical publication, published an editorial. In it was the quote, “The most important question facing modern medicine involves human rights."
This question is the one that we are going to raise in this session. I propose that this question be examined the other way around — the most important question facing human rights involves modern medicine. I hope that this talk will generate such a discussion.
To get us started, we shall hear from several speakers who are going to present us with three, separate case scenarios from a reality that is different than the reality that most of us share. And it is my great honor and privilege to introduce our featured speaker, Mr. Yohei Sasakawa, who, besides being a renowned Japanese philanthropist and President of the Nippon Foundation, is also the World Health Organization’s Special Ambassador for the elimination of leprosy. And he has worked in that field and in that endeavor for at least thirty years. Mr. Sasakawa.

Yohei Sasakawa
Ladies and gentlemen, before I begin, I’d like to the thank the organizers of this conference for this opportunity to speak to you on the subject of leprosy and human rights.
I have worked toward the elimination of leprosy for more than thirty years. For many, leprosy is a disease of the past. And I am sure that many of you are puzzled as to why I bring it up as a problem for this contemporary age. But it is still a very big issue. It consists of two aspects. First, it is a medical
problem to be tackled. Second, and more important, is the social aspect. Discrimination based on the prejudice that it generates. Leprosy is a chronic bacterial disease that affects the skin and nerves. In the first stage, the disease deforms the limbs and faces of the sufferers. It seems to strike haphazardly and selectively and once it strikes, it runs an unstoppable course, but is not fatal. As a result of these and other characteristics, a tremendous stigma became attached to leprosy and it became a symbol for that which was most feared. The people it touched were forced to live lingering lives that were worse than death.
We who are working for the elimination of the disease, together with WHO, have set the elimination by the year 2005 as our target. We are putting all our efforts into this final push in order to draw the curtain on the long history of leprosy. The leprosy of today can be cured within a year with a highly effective multi-drug therapy known as MDT. For the past five years, our Nippon Foundation has provided free worldwide distribution of MDT. According to the WHO, elimination is defined as a prevalence of less than one person in ten thousand. Since 1985, one hundred and sixty countries have achieved this goal and only six remain: India, Brazil, Myanmar, Nepal, Mozambique and Madagascar. In my capacity as the WHO’s Special Ambassador for the elimination of leprosy, I am working with the governments of these remaining countries and with the international NGOs to further strengthen their activities to achieve this goal as quickly and effectively as possible. 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 issue associated with leprosy — the discrimination that arises from prejudice. Let me give you a picture of how society has reacted to this disease so that you can see the relationship between leprosy and human
rights. History has revealed this relationship very clearly. Since the dawn of recorded history, there have been numerous references to leprosy. Accounts of it can be found in the Old and the New Testament, in the ancient documents of China and Indian classics from the sixth century Before Christ.
There are also numerous works of art depicting people who had leprosy. All over this or that, the individual with leprosy has been treated with fear that dwells deep within the hearts of people — the fear toward that which is different. What is startling is that we find this strong sense of exclusion
around the world, regardless of country, religion or culture. Everywhere, leprosy has been the most feared of diseases and its victims the ultimate outcasts of society. Forced to lead lives that denied their very humanity. From ancient times and even by family members, sufferers of leprosy were
branded as unclean people, as people who had committed transgressions in previous lives. They were ostracized from society and isolated. The Kalaupapa sanatorium in Hawaii where Father Damien served in the middle of the nineteenth century is one example where, after the sense
of crisis about the spread of leprosy, sufferers were sent away to the remote island, Robben Island of South Africa, which is known as the island where former President Nelson Mandela was exiled. But, in fact, the entire island used to be a place to confine people with leprosy. There are countless islands like that in the Mediterranean Sea, in Asia and elsewhere where sufferers lived, completely stripped of their rights as humans. When people contracted leprosy, their families strove their earth
and even stripped their names from them to protect the owner of the family. They thus became people who had no social existence. In this way, they were deprived of a voice to speak out against the society. Even their families abandoned them. They lost their identity, but the identification numbers were forced on them. It is a shock to realize that until the later half of the 1940s, sufferers confined in the National Leprosarium in the United States were even denied the right to vote.
When I visited a leprosy colony in Indonesia, I had a chance to meet there a former patient. She was eighty-five years old, but had been living there since she was a girl. I asked, “Since your sickness is completely healed, why don’t you go back to your home and family?” She replied, “I cannot, because it
would only bring trouble and unhappiness to my family. I will be finishing my life here at the colony, quiet and alone.” The same kind of story can be found all over the world. Even after death former patients are not allowed to go back to their families. Families deny their relationships and even refuse to accept their ashes. Though sufferers have been allotted a fate in which their very families deny their existence, for the most part, their fight has not been included on the list of human rights violations. The countless tragedies associated with leprosy are a terrible and continuing legacy of man’s inhumanity to man. They should not be buried in the distant past.
Even today in the twenty-first century we are faced by very real ongoing challenges. I am specifically thinking of the following two issues: first, leprosy continues to be a health problem, especially in the developing countries of Asia and Africa. Every year several hundred thousand new individuals are
diagnosed with leprosy. Since there is now an effective cure, it is a global responsibility to provide treatment in a timely enough manner that deformity and disability do not occur. Then we will be able to separate ourselves from the long history of discrimination and exclusion. The second issue is that of
just how seriously we all take the question of the dignity and social recognition of former patients. In my own country of Japan, there existed a law justifying the segregation of sufferers until five years ago. Recently, however, those who had been expelled from the society sought compensation
from the government for the loss of their rights, and in May 2001, they won their case. The fact that these individuals won their court case and that the government admitted its mistake made headlines worldwide. In describing how he felt immediately after this victory one of the plaintiffs said, “Human
rights are like air. I felt that today is the first time that I can breath freely.”
This court decision was the first step in returning to former patients the dignity, which is every human being’s right.
In the dark age of the 1920s when leprosy was yet incurable and greatly feared, a Japanese poet named Akashi Kaiji contracted the disease. He nevertheless upheld himself with dignity and pride and left us the following words: “Unless I illuminate myself like a deep-sea fish, nowhere will I find even a glimmer of light.” Now, more than ever, a place is needed for those who have been denied their existence by society to illuminate themselves and raise their voices.
In response to this, for the first time in history an international support network has been established, whose leadership is primarily made up of individuals who have personally faced the challenges of leprosy, known as the International Association for Integration, Dignity and Economic Advancement,
or IDEA. This organization provides opportunities for individuals to empower and support each other while promoting a positive image of leprosy that is based on ability, achievement and wisdom that comes from experience. The organization may yet be small, but its message is immense. Since the message is a vital one, our foundation is providing full-hearted support to IDEA. The treatment of sufferers of leprosy has been a negative legacy of the human community. We must learn from this mistake through education and the media, and lead the public down a path of enlightenment to the truth about leprosy and the social issues it has raised.
A minute ago, I told the sad story of a former patient in Indonesia. Those who have been exiled because of leprosy often echo her feelings when they say, “We will only be able to go home when we leave the crematory chimney as smoke.” The history of leprosy is the history of men, women and families whose lives have been completely determined by this particular disease. In the twenty-first century, science and technology are making tremendous strides. The danger is that in the shadow of this extraordinary progress, human dignity and the right of individuals may be overlooked. We
need to fix our gaze on those who are being left behind and are suffering
Thank you.

Martin Jan Stránský
Thank you very much, Mr. Sasakawa for exploring the relationship of leprosy and fear and prejudice associated with treatment of that disease. And I think leprosy certainly is not the only type of illness that has that barrier against it, but I what I also found very fascinating was you raising the point of not treating the disease actually being a human rights violation, and also pointing to a case in which an individual patient sued for his rights and won. And that’s something that I hope that we’ll be able to explore in further discussions. But right now it’s my honor to call upon the next speaker, who is Anwei Law, who is the International Coordinator for IDEA, which is an organization Mr. Sasakawa also mentioned. This is a network of over thirty thousand individuals in over thirty countries who battle leprosy and I assume other diseases as well. Ms. Law.

Anwei Law
Before I officially begin my talk I would like to introduce you to five of my colleagues who are here today to make this presentation with me. You will see them on the panels behind me. I hope this doesn’t count as part of my ten minutes because I am still introducing people. The first person is Francisco Nunes, better known as Bacurau from Brazil. He was IDEA’s first President for international advocacy, he is no longer with us in body but he is certainly here in spirit and you will hear some of his words today. Next to him is Olivia Breathe, this is a photograph of her at the age of eighteen, when she was diagnosed with leprosy and taken from her fiancé who never knew what happened to her, and also isolated at the Kalaupapa settlement in Hawaii. She is now an author and is eighty-four years old. Next to her is Mr. Yasuji Hirosawa surrounded by students, he is teaching the next generation, not just about leprosy but about discrimination. I don’t know the name of the lady next to Mr. Hirosawa, she’s a woman in a leprosy village in China but I do know is that she is rich in spirit, as you can see by
just looking at her. The final woman is a woman from Nepal with her son on her back who has leprosy. I don’t know her name either. These last two individuals are more the norm than the first three.
Most people with leprosy, we don’t know their names, they haven’t been called by their names. And that is something we hope to change today and other times. On the back of these panels there are many of the words of the people who have leprosy and I encourage you to try to figure out a way to look at them later. There is also a quote by Eleanor Roosevelt who was the Chairperson of the UN Human Rights Commission when the Universal Declaration of Human Rights was adopted. And I think it is a
very important quote in terms of what we have been speaking about today. “Where, after all, do universal human rights begin – in small places close to home, they are the world of the individual person. Such are the places where every man, woman and child seeks equal justice, equal opportunities, equal dignity without discrimination. Unless these rights have meaning there, they have little meaning anywhere.”
“We are your mothers, your fathers, your sisters and your brothers but there is one thing we are not. We are not lepers, we refuse to allow others to define ourselves, our humanity by a disease.” Bernard Punikaia, community leader, composer, Hawaii.
“When I look back at my past, my soul is beckoned to the poems I wrote of my father. There are times when I think it would be more natural for me to write about my life as a leprosy sufferer. But my attitude of mind as a poet is inclined more to write about my existence as a human being. I want each line and each stanza that I create to be a reflection of the real me, my heart and my soul.” Haruko Tsura, poet, Japan.
“To many of us, worst than the disease, is the prejudice that comes along with it. Many of us stopped being called Francisco, Joe, Maria and we started being called leprosy patients, lepers and recently, Hansenites. We can never forget, even with the noblest intentions, that the bacillus is not more important than its habitat. I believe that our greatest challenge is to make sure that millions of people who have lost their identities can go back to being called by their own names.” Francisco Nunes, composer, teacher, grassroots activist, Brazil.
This is the first time that leprosy, also called Hansen’s disease, is specifically being discussed as a human rights issue. The thirty thousand members of IDEA in more than thirty countries, most of whom have personally experienced this disease want to wholeheartedly thank Mr. Yohei Sasakawa and the Nippon Foundation for their vision and understanding that it takes more than medicine to solve the problems that face individuals whose lives are affected by a highly stigmatized disease.
“I was case number 746. Henceforth, I would always be number 746. I was sinking into the quagmire of anonymity, which society reserves for the victims of leprosy, mental illness or crime. We were no more entitled to individuality than a convict in penitentiary.” Sidney Levyson, better known as Stanley Stein, an alias he was encouraged to assume upon entering a US public health service hospital in Carville, Louisiana in 1931.
It’s extremely difficult to get people to think of leprosy as anything other than a medical problem, despite the fact that discrimination against people with leprosy has occurred across time, in every culture, and every religion. In Nigeria, during the last century, people with leprosy were buried alive in mass graves because they were thought to have been fingered by the gods. A massacre of individuals with leprosy occurred in China, at White Cloud Mountain. In the only book written by a person affected by leprosy in China, the author Lin Ji Ming describes the situation facing some of those who were sent to the Guangzhou leprosy hospital. They were put in a room with nine other people, their door was barricaded with three big wooden poles, so that nobody could leave. They were fed moldy rice full of sand and allowed two scoops of water a day for drinking and washing. One night they were given a good meal, a signal to them that they would be killed the next day. Individuals in Japan have undergone a lengthy, severe and complete isolation from society, with strict leprosy prevention law only being abolished in 1996.”
Kaoru Matsumoto recalls, “Hansen’s disease was not thought of by the Japanese people as a disease, but as the country’s embarrassment. From this point of view they were so much involved in trying to eliminate the disease and the people who were affected by it. Many family lines of individuals affected by leprosy in Japan have been stopped. They are literally a generation without children as a result of forced sterilizations and abortions. In the recent successful lawsuit against the government, a total of
three thousand five hundred abortions were reported, some as late as eight months. Soo Ning Aan commented, “Even though I know it is useless, I still find myself wishing that my baby was alive. It was not an abortion, the child was a human being. It was a murder.”
In Hawaii, children born at a Kalaupapa settlement were taken away from their parents at birth, as was vividly recalled by David Onakupele, a Hawaiian man, who firmly believed that leprosy was introduced by the white men to kill off the Hawaiian race. “I have twelve children, and they were all born inside Kalaupapa. Nine of my children lived. I delivered all of my own children. Twelve children I delivered. The first few times, the midwife showed me how to do it. With the other nine, I delivered them myself. This gave me a few extra hours with them, before I would have to give them up.”
And residents of the U.S. public health service hospital in Carville, Louisiana, the very place where the cure for leprosy discovered in 1941, were not allowed the use of a telephone, were not permitted to get married, much less have children and were even denied the right to vote, until 1946. After being cured, they were given discharge papers that said “PHS Leper. No longer a menace to public health.” Edwina Meyer, sent to Carville in 1928 where she assumed the name of Betty Martin, recalled, “We heard about patients returned well and free to their homes to be met on every hand with cruelty created by fear. Children of patients were asked to leave the schools they had attended all their lives. A person discharged was shunned in his own neighborhood — his barber would not shave him, his grocer asked him to take his trade elsewhere. In all but a handful of cases, the cruel and unnecessary segregation of Carville’s victims meant the eventual permanent destruction of their family life and their home.”
While many of these experiences are recorded in the autobiographies of members of the older generation of individuals affected by leprosy, the words of those recently diagnosed also describe the stigma that continues to separate families and forces individuals to live in social isolation, often afraid to tell others that they have what is now a completely curable disease. Just this year, Mrs. Aswalon Arthy, a thirty-nine-year-old woman from India, wrote: “In society, I fear the risk of social stigma if I speak the truth. The secret that I can never share still gives me pain. Even my daughters are not aware of this fact. I am waiting for the time and opportunity to make them understand.” Florence Yami Adikoya, a thirty-seven-year-old woman from Nigeria, commented, “I was diagnosed as having leprosy in 1994 and told that I have to start treatment immediately for two years. Upon getting home that day, I
informed my husband. He was scared, and eventually, he and his parents sent me, together with my three-month-old daughter, out of my matrimonial home. As a result of my leprosy, many other sad events started rolling in, which eventually lead to our divorce.”
Anzilda Borges, a young woman from Brazil, observes, “A man affected by Hansen’s disease can work as a bricklayer, outside his employer’s home. But a woman works as a maid, inside the employer’s home. This causes embarrassment, shame and loss of her job. She suffers in silence, and continually tries to hide the disease. Denying it, she denies the possibility of a cure without disabilities.” Despite the widespread injustices faced by people affected by leprosy, their response has traditionally not been one of hatred, but of words and actions that reflect the very humanity that others have tried to take from them. Until recent years their words and actions have been largely ignored, despite the fact that it is these words and actions that are the key to eliminating the stigma. If we don’t listen to these voices of humanity as they reach out to us, through books, poetry, art and even lawsuits, we ourselves are guilty of continuing the injustice. The experience of each individual who has overcome inhumanity by asserting their humanity is a triumph for the world, a manifestation of the inherent dignity that is the birthright of every human being and a powerful example of that which is best in humankind, triumphing over forces that cultivate fear, misunderstanding and hatred.
This is well illustrated in the words of Kaoru Matsumoto who agreed to be sterilized so that he would be allowed to get married, “I wasn’t able to go to school, I am now giving scholarship funds to children of people with Hansen’s disease in Nepal. I’ve helped six children go to school with funds from my pension. I want to be able to help a hundred children. This is the greatest fun of my life and I want to meet them when possible. They call me Dad.” It is these voices that will be the foundation for the IDEA Center for the Voices of Humanity, which we are establishing in Seneca Falls, New York. Located in an area that has a tradition of individuals fighting against oppression, this center will encourage people of all ages, cultures and religions to look beyond the comfortable boundaries of which is familiar in order to promote the peace that comes from the understanding and respect of diversity. The IDEA Center for the Voices of Humanity will provide a forum for diverse and compelling voices from the past and from the present to inspire us, lead us and, ultimately, make us all more human.
In conclusion, I would like to leave you with the eloquence of Antonio Borges Jr., whose wisdom and fighting spirit has enabled him to overcome prejudice, leprosy, poverty and disability. Last year he was given an award by his native city of Salvador, Brazil, in which he was credited with making the city more human. Mr. Borges is a poet, a teacher, a husband and a community leader. These words, written many years ago, when he was dealing with the loss of a leg, are both comforting and inspiring, as we work to ensure that it is the voices of humanity that will ultimately define our world and its direction and its future. “There is a communion in everything related to nature, beginning with the waking of the birds and the melodious and harmonious song of the almond trees, spreading happiness in our spirit in times of such great need. Here is the sky blue throughout the vastness of outdoors, lost on unending horizon, contrasting with the budding redness that swallows up the radiant aurora announcing the birth of a new day. The message is so great, there are so many shades, that I feel happy when I see the sun dry off the leaves moistened by the tears of the guardian of the dawn. The beauty of everything I see withdraws a sigh and a wide smile of hope from within my soul.”

Martin Jan Stránský
Thank you very much. I think you did something very important. You basically gave it to us from the point of view of the victim, of the patient, of the sufferer, and I think that that is what this is about. You also mentioned a sentence which had the words, “time and opportunity to make people understand,” and I think we certainly have an opportunity today and the time is certainly now. In his speech, President Clinton mentioned some choices and some scenarios, and our next speaker is going to tell us a little bit about the effects of some of those wrong choices that we’re making so far. Following the death of her husband, Christopher, who died of AIDS in 1987, Noerine Kaleeba, who was born in Uganda, became active and set up a support group which blossomed into a vibrant organization, the AIDS Support Organization, which I understand is based in Uganda. She is also the UN AIDS Program Development Advisor and it’s my great pleasure to introduce her to you as our next speaker.

Noerine Kaleeba
Thank you very much. Good afternoon ladies and gentlemen. Dumela. Habari. It’s difficult to speak this late in the day, especially when eloquent speakers have gone ahead of you, and particularly when such learned people introduced such subjects of intense interest to us as a humanity. But I would like to speak all the same and I would like to thank the Nippon Foundation for inviting me. Because in inviting me here, they made a very, very important point that they wanted here to be present the voice and the face of one of the newest challenges that we are faced with as human beings, the HIV pandemic. I hope that in inviting me, they did not expect an eloquent academic account of how human rights relate to HIV and AIDS because I do not have the technical background from which to draw.
I speak to you this afternoon as a woman personally affected by this pandemic. I want to represent to you here, the millions of people that we always hear about in statistics. Yes, the HIV pandemic continues to ravage humanity. We’ve heard about AIDS in Africa. I think we hear less about the spread of HIV and AIDS in Southeast Asia. Today, I would like to represent the face and voice which doesn’t often get seen. As has already been mentioned, my husband Christopher was diagnosed with AIDS in June 1986. Christopher died within a year of his diagnosis. And as a young woman, only thirty-two years old, and the mother of five daughters, who at that time were very, very young, I struggled, not only with the loss of my husband, the loss of my lover, the father of my children, but with the key factor that I feel which is more devastating than the diagnosis of HIV and AIDS and that is the stigma related to this pandemic.
Mr. Chairman, I come form an oral culture and as a growing girl I listened to and I exchanged many stories. Today, I work with UNAIDS and I am based at their secretariat in Geneva. Even then, I still tell stories. But the stories that I tell today are very different from those stories I used to hear, because those stories were largely fairy tales. You know, what they call fairy tales? And in the majority of them, the main character of these stories, they lived happily ever after. The story I tell today, unfortunately, is a true story. It’s a story of pain, a story of suffering, it’s a story of loss. And until now, we have yet to come to the “and they lived happily ever after” ending of the story of AIDS. Even worse still, the story of my life.
I do not want to lament the tragedy of AIDS in Africa, because I came to Prague today, I came this week with a message of hope. I also came to present the voice and face of the hope, based in the response that can be mounted against this tragic pandemic. As has already been mentioned, after the diagnosis of my husband, we set up an organization, which today has turned into a movement. That movement is described as “living positively and dying with dignity.” In those two, in that phrase, we recognize, very importantly, that there is life beyond an HIV diagnosis. It is possible to live quality life beyond the diagnosis. But we also recognize that the reality of the HIV pandemic today, particularly in the those parts of the world which are hard hit by this pandemic is that it remains a fatal illness. But as an African woman, I want to share with you that for us, death and dying has always been a reality of our culture.
This morning we were discussing culture and human rights. After my husband was diagnosed, I struggled to understand why this stigma that was related to HIV. Because for us as a race, and I think this cuts across humanity, we always valued the fact that in times of strife we remained together and shared our sorrows and when joy came, we shared it together and rejoiced together. But when this disease came on the horizon in my country for me and because, when leprosy was a big problem in my country I still was a very, very young girl, so I did not personally witness the stigma related to leprosy in my country. So when I saw the stigma related to AIDS, for me it was the first time that I ever saw a disease that evokes stigma. And the form the stigma took in my country was very excruciating. Because, I do not know how many of you know that in many of these countries, many of these developing countries, if I am ill, I tell my mother, my mother tells my aunt, my aunt tells my father, my father tells his brother and the four of them come together, they hold a family meeting and within that family meeting they decide what should be done with me. Should I be taken to a hospital with Western- trained kind of medical care or should I be taken to a traditional healer or both? In the majority of cases, where I come from, the decision as to what happens when I am ill is taken collectively by my family members. Quite often, today, I get taken to the hospital, but some members of my family simultaneously go and consult a traditional healer.
When AIDS came on the horizon, it was the first time I saw people being brought to hospital and being left there without the family returning at all. And the people that I first got together and cared for had been abandoned in hospital. And that was one of the most profound manifestations of the stigma related to this disease. The other important element of the stigma related to AIDS that brought me on the front line to fight was the stigma manifested by healthcare workers. I am trained as a healthcare worker, I am a physiotherapist by training. And we swear the Hippocratic oath of restoring humanity to
complete health. And for me, again, it was very tragic when my husband was admitted into the hospital. And for the whole period that we were there, he and I, the healthcare workers totally rejected me. They rejected him. Nobody would come to the room where he was admitted.
The other important element of the stigma, which I felt had the potential to tear us as humanity, as a race, was to see people being judged by virtue of what was becoming available as the mode of transmission of this virus. We all know, most of you know, that today the virus, in Africa particularly, spreads heterosexually. But even in those parts of the world where AIDS spreads through man to man sex or woman to woman sex, or through drug-injecting behavior, for me, I couldn’t understand why, because people who were HIV-infected had practiced those behavior, therefore all persons who are practicing those behaviors were being rejected. So, with anger and emotion I came on the front line. And this is what I want to share with you. What can be done to address the stigma related to this pandemic?
One of the key issues which cause this stigma is ignorance and denial at the personal level. We all believe that the HIV story is somebody else’s story. I know that for a fact, because before my husband was diagnosed with AIDS, all I had heard, and I’m saying heard, because I had selectively heard about AIDS, was that this was a disease that affects white homosexual men in San Francisco. So, when I was told that my husband had been diagnosed with this disease, my first reaction was complete denial. The fact that we, even individuals among us in this room, we feel, we have every reason to say that AIDS can never affect us, because I am not white, because I am not gay, because I am not an injecting drug user, or I haven’t been to Africa, or I don’t practice those sexually deviant behaviors. That is one of the root causes of the stigma associated with this disease. But also increasingly found, and this is where our intervention was very, very important, was poverty and the feeling of helplessness that is brought within families on their loved one being diagnosed with HIV. The feeling of helplessness in a poor family that here is a loved one, who is ill, who is going to require a lot of resources that we do not have within the family. It draws a feeling of anger and a feeling of rejection. So, families, apart from information, apart from education on a primary level, they need support in order to be able to care for their loved ones, in order to change the image of the disease.
My friend here referred to the deformation and disfigurement that is brought about by leprosy. AIDS disfigures, AIDS deforms. Particularly in the form it manifests in Africa. Some of you may have heard that this disease in countries like Uganda was referred to as “slim’s disease”, because people lost weight. Because people lost weight and lost their dignity. We know, today, that there is a lot that can be done to care for people, to change that image and restore hope within the families. But even as I say that, I wanted to make a last point regarding access to care. In the beginning of this pandemic, in the beginning of recognizing this pandemic, we all referred to AIDS having made our world into one global village. We had a sense of solidarity. We had a sense that together as humanity we must work to defeat the pandemic.
But inequities have been highlighted by this disease and the most recent inequity has been highlighted by the advancement of antiretroviral therapy that is today available to people in the northern hemisphere. This advancement, which should be applauded by all of us who are activists in this, is now unfortunately dividing our world into two villages. The disease in the North is now a chronic, manageable disease. The disease in the South is a hopeless fatal illness. My appeal today is to all of us here. We individually can do something about HIV. First, reflect on our personal attitudes, individually, about this disease. Second, all of you, particularly many of who are activists — who have been to able to advance so many causes in human rights, in political achievements — raise your voice equally for the rights and dignity of people living with HIV and families affected by HIV. Thirdly, advocate and activate quite eloquently for equitable access to care and support for people in the developing countries to ensure that our village that has to continue, because I must emphasize, AIDS will live with us for a long time. It is growing, we are making a few inroads into combating this disease.
And President Clinton made reference to the success that has been made in my own country Uganda. That success has been very, very hard won. It has been hard won through involvement of people affected and infected, the openness of government and willingness of government to about this disease but most and very, very importantly, the international solidarity, that I want to use this opportunity to thank, on behalf of people who are living with HIV and on behalf of young people today who must be protected from this virus because in any country, even if the virus level is very high, our hope still lies in the young people. We must protect the new generation and we need international solidarity based in the feeling of oneness and togetherness. Thank you.

Martin Jan Stránský
Thank you very much, Noerine. I think you were wrong in one thing that you said though, and that is when you labeled yourself. Your speech was certainly as eloquent and as dignified as any we’ve heard in this room. If I may, I will just back up your speech with two or three facts. AIDS is the fourth- leading cause of death in the world today. Thirty-six million people on planet Earth have the disease. Seventeen million have died from the disease. Sixteen thousand people are being infected every day. By the year 2010, the life expectancy of nine countries in Africa will drop by sixteen years per person. This will continue to contribute to increased political instability in the region, not to mention human suffering. Ninety-five percent of the financial aid given to AIDS patients and research goes to countries north of the Equator. Fewer than ten percent of Africans get any treatment for AIDS at all. The fastest rate of spread of AIDS is in the Soviet Union today, followed by the Caribbean, followed by India, and followed by China. In addition to illness, and treatment, there’s also mistreatment.
And our next speaker is also a living example, indeed a living legend. And not because she is a well-known world supermodel, but because she has experienced something which, I think she will tell us in very eloquent words. So it’s my great pleasure to introduce Waris Dirie, but before I do that I would also like to say that she wrote a book about her experience, called Desert Flower, which many of you may have read. And that is the main reason she is here today. It’s her own story, and it’s available in at least twenty different languages. And it’s a story of two different cultures, each of which has both good and bad. So again, it’s my pleasure to introduce Waris.

Waris Dirie
Thank you. First of all I would like to say thank you to President Havel for inviting me to this Forum. I’m grateful to be here. For those of you that don’t know me, this is my first time. No doubt you will see me in future, because I am here to stay. Until those problems that concern me disappear. My sister put it so beautifully… so many words, and so many true, so many eloquent people, say so many words in so many different ways and shapes. So for me, I’ll make it simple.
I am from Somalia and since we all here talk about culture and beliefs, we use so many words so many times. Religion. I was raised a Muslim and personally I only believe in a greater, higher power. I call it God. When I, as a child, I experienced something I wouldn’t wish on any child, and I can use the word “torture”, a nightmare for a child. I’m basically here to change, and to make it so that no child can remember the memories that are in my childhood, that is in my mind. As a child, experiencing from my own parents, who did love me, who thought they were doing the best for me, and they had to sacrifice their life and their love, in order to give me a better one. And that’s what it all comes to — again, it’s cultural.
I was circumcised at five years old and to me, I thought, this was the best thing. The night before, I remember clearly, I thought I was going to be the best daughter, to obey whatever my parents and my family told me. I believed it. As any child in this world would believe her parents. From existence, from the day we come out, that’s all we know, what we’ve been told as a child. And who better to believe than your own mother and father, parents, or the loved ones, who love us and trust us. And so for them, they were doing the best again. And little did they know they were doing damage.
And that’s where we desperately need education, and understanding, whether it’s cultural, or whatever words you call it. Exchange of culture, exchange a way of being in whatever land or existence or culture it is. I teach you mine, you teach me yours. And that’s what’s missing from all over the world, everywhere. Lack of understanding and caring for each other. We exist for one reason, I speak for me personally. Like I said, I believe in a great power and that power is made us all here, brought us into this world and for what, only one reason. To live your life. That’s all the hard work you have to do, to be here, live life. And care for whomever you can. If you can, help. And I am yet to see the world in which I’m living. My world. I am sitting here today with really great sadness. And I cannot believe I am here today. To tell you all, it took twenty years to cross the desert barefoot to tell you here today what the culture over there is doing. Where I would be sitting here today, discussing something greater and better than this, than mutilating a child or torturing a woman. I should be wasting my energy and my time on something better than this. And you should be sorting out this.
You, my great people, leaders, sitting here. You should have sorted this out a long time ago. You should be discussing this long time ago. And it should be on every agenda, everywhere. Every person should have the right to know what’s going on in each country in the world. Like I said, I learn yours, you learn mine. Then understanding takes place. Take talking and talking and talking. We dance around the serious, no more, everybody dealing, yeah, we’re talking. Enough all the talk, enough talking. There’s work to be done, and this is reality, and it’s real. Now we make all this and we talk and we talk some more and some years go by, a decade goes by, and so on. And people are dying left and right. And I can’t just restrict it to one particular problem. Because every problem connected to the next problem, as a human, we’re all connected. And until we know that, we really understand, this is not my problem and it’s not your problem, it’s our problem, we’ll never solve nothing.
So, as you talk to any child, I talk to children around the world, children, any age it doesn’t matter. You go ask them what they want from this world, you go ask a simple question: what do you want from life, what do you want? They ask you one thing, they say one thing. I don’t want anybody fighting and I want everybody just to be friends. I am one of those children. I’m one of them. I am here today, and I’m truly determined, and I am not asking you, I want peace. Simple as that. This is my world too. Just because some of us choose to make noise, as much as your world, it’s mine too and that’s all I want: I want peace. And quiet and kindness. Is it too much to ask? We’re all coming here, we all want the same thing. Each and every one of us, around the globe, we want the same thing. But we seem to be going different ways. Is it hard to understand? So if I seem to be very excited, I am. I’m furious in a way, I’m really furious.
We are sitting here, such intelligent humans, and we are talking about such rights, you call it human rights. It’s a word, that word, it don’t mean nothing to me. Has no value in the world to me, because I don’t see anybody obeying or following those rules. I don’t. So I am saddened to be sitting here, to hear all the pain in the world. There’s so much I want to say, so forgive me, sometimes I go off, to another world, and that world is really a world I want, so desperately. I don’t want to see any suffering in the world, and if we can do something about it, we can. Anything is possible. So all I ask is, let’s do. Let’s do be kind to each other. My country, Somalia, is in a desperate situation.
It has been more than ten years. It has been a war. Today it’s a completely war-torn and a dark sun and it makes me even more sad. So I’m here to ask you, those who got the power and the knowledge, that you help the one who needs you. Like I say, we all need each other. And when you hear the great Africa, all the sad is the only thing you see. You want to see Africa, you go inside to see Africa, because it is a great country, it is a great continent, it is a magic place. And I ask your help. Not for Somalia only, but for Africa. There’s still this practice called female genital mutilation, I like to call it,
because it is what it is. Let’s be real. It’s practiced today, in more than twenty-eight countries in the world. And so very little people know about this terrible and brutal practice. And why, why do I think you choose? I am here to tell you, those who don’t know, like I said before, now you know what is the solution, what do we do about it?
I have to go back to my sister here, who discussed AIDS. She poured her heart out about AIDS. Somalia’s right there next to it. I went there last year, to Africa, Somalia, and what I saw was horrifying. Everybody was dying and no one, no one had a clue what they were dying of. No one, because they never heard the word AIDS. They never knew, they don’t even know. And when I told them they said you’re crazy, what are you talking about, what is that? So, especially female genital mutilation, people still practice. And the worst thing about it, the same people who continue, who least circumcised, five, seven, eight girls a day, they use the same thing, and it can be a knife, it can be a razor blade, it can be a sharp tool, it can be anything. Whatever it is they’re using, they use it for the next child, and the next child and to the next child. That alone already is spreading disease.
So not only do we need to stop FGM, we need to educate. My people desperately need education. They need to be aware of what’s happening in the rest of the world, and of how the rest of the world is living. They are cut off from everything and anything. So I ask you here, sitting here, I need your help. And not me, my people. And I would like to leave here, not just for me, for all of us, for the great compliment for this meeting. Thank you.

Martin Jan Stránský
Thank you so very much, Waris Dirie, I think I’m not the only person in the room who has a knot in their throat. The only thing I can say to that is that you brought the point home. And I think it’s really there, and that’s really where it has to get before something gets done. And now it’s time to do it. So with that I would like to open the floor up to discussion, as well as introduce one sort of “panel consultant” who’s with us, and that’s Dr. Kiikuni, who is Professor of Public Health at the Tokyo Women’s Medical University, who also has an emphasis in studying leprosy, and he has asked for the first contribution into the discussion. Professor.

Kenzo Kiikuni
Thank you, Dr. Stránský. After the three preceding powerful presentations it is very difficult to make a comment, so it will be very brief, to encourage the discussion of these important issues. This is my first attendance to this unique conference and I am greatly inspired by the very stimulating, intellectual and provocative discussions. My specialty, as Dr. Stránský mentioned, is public health.
The responsibility of public health is how to apply theories to actually solve our strongest health problems. One fundamental theory of public health in regards to human rights is well expressed in the so-called Alma Ata declaration in 1978 by WHO and the UNICEF, which stated as its goal of public health: Health for all by the year 2000. Unfortunately, twenty-three years have passed, but the gap between the haves and the have-nots seems to have widened. Why? Well, maybe it is the incapability of the medical people, of public health people or the lack of commitment by the politicians and the lack of commitment by the community and so forth, you name it.
I am wearing two hats, one is a teacher of public health and one is a Chair of the Sasakawa Memorial Health Foundation, which is a leprosy-control international organization, an NGO. I will comment on some elements of healthcare and human rights from my past experience of association with NGOs for leprosy control for the past twenty-seven years. First, I think that you mentioned, that everybody mentioned, “accessibility” is the key word. And how can we enhance that access to basic health care? As the WHO mentioned, primary health care should be the goal, the means to achieve health for all
the people on this Earth. With leprosy, the case probably is that we made a bad mistake to segregate those people in the hospitals or institutions. But with those who are diagnosed, it’s rather difficult. We seek our ideas, every health centers together with integration, and there should be some health care workers — it does not have to be a nurse, it does not have to be public health persons — but the traditional health healers, should have access to diagnosing the basic health problems, like leprosy or HIV/AIDS.
And the second important thing is availability of some of the resources. Fortunately, in leprosy, like
Mr. Sasakawa mentioned, we have a powerful means, MDT, developed about thirty years ago. Because of MDT, we have dramatically reduced the prevalence rate of past fifteen years by almost eighty-five percent. But of course our final push is the most difficult part — whether we can achieve it in those remaining six countries. MDT should be supplied free of charge, and I am commenting on the Nippon Foundation’s great effort to supply all the necessary MDT for all people affected by leprosy, free of charge, for the past five years, for more than fifty million US dollars. There is a drug which has improved the life of the HIV-infected people, but the cost is prohibitive. How can we solve that question, with our means and how we can extend the availability to those people who are affected by the unnecessary stigma? So as to the stigma, as Waris Darie rightfully mentioned, correct information is the basis of understanding. So I should say the third element of any control measure is empowerment of the people. Needless to say, one of the most important things is correct information. Still, in some of the countries with leprosy cases, leprosy is still regarded as a hereditary or family disease and those things, and there should be enough information for all the community people. Leprosy is curable, leprosy is a disease affected by bacteria, so we have to give that message. So in that sense, the role of the media is very, very important, to spread the correct information to those people. This is the powerful means to avoid the stigma, eventually.
The fourth thing is the stigma — how to avoid the stigma. It is a peculiarity of human nature, looking back at the history of public health, that all the diseases are connected with some kind of stigma. Now that we have discussed leprosy and we discussed HIV/AIDS and we have discussed the unnecessary operation performed on young women in Africa. But there some other fears that we have to look at very carefully, for example, last year was the Year of Mental Health, and mental health is a typical example of that which has so much stigma to those people affected by the mental disease. So there are many, many issues that we have to struggle with. So perhaps we have to think very broadly about whether integration of the services — since we have accumulated all our efforts for leprosy — is the true answer or not. I really don’t know, but fortunately, because of a refocusing on leprosy, we can dramatically decrease the instances. Everybody is talking about the integration of leprosy and of tuberculosis, that it must be the answer. But unfortunately in the past, this was not the answer, so the question of integration of other health services remains to be seen. Those are my brief comments to the powerful presentations. So congratulations on your speeches, and very powerful messages. Thank you very much.

Martin Jan Stránský
Thank you. Thank you, Professor. I would now like to open the floor up to those around the table, as well as those in the audience. I’m sure that there may be some interesting questions or comments, and I’d like to give Rabbi Friedlander the first option.

Albert Friedlander
I think it follows directly upon what the professor has said. Diseases, our own disease. Elie Wiesel, who spoke about one disease called “apathy” that infects all of us. Another one perhaps is fear. So many studies are made that if some maimed, suffering person comes within proximity, within the underground or elsewhere, we move away. We refuse to see. When we hear of terrible diseases that in some ways are crimes also, the mutilation of young children, this is not in our area, we don’t want to hear it. Leprosy, from Biblical times, as has been noted, was a disease where, those suffering from it, were made to feel guilty, going around crying, “unclean, unclean,” the jingling of bells in the Middle Ages so that people could move away when they saw a victim approach, all that is part of our society.
We’ve talked so much about globalization, our global village, without accepting that the diseases within that society are our diseases. The problems, no matter in which country, are our problems. That so much of what we see is curable if we would but will it. If we’ve talked now, rightly so, about the problems of terrorism, it has also been pointed out that whether in AIDS, whether in other diseases, if we look to the future, we see a world ravaged and humanity destroyed. But that’s far away, so that’s not our concern now. But it has to be. We’ve been told by these dedicated workers in their areas, that things can be done. And we know it, but it’s far away, it doesn’t affect our home immediately, we think, and I think it’s significant that many did not come to this, the most important session that we have held here since the beginning. A session that points out to our own illness, to our own obtuseness, our own not caring, and, if nothing else, we have been touched by what we have been told. But, as the professor has just pointed out, there are things we can do, should do, must do, and we cannot just acknowledge this as a noble statement from those who fight against the disease. Unless we are ourselves involved, we will suffer from what has happened, whether in Somalia, or what is happening all over the world. The disease of humanity, and the hardening of our own hearts. Thank you.

DISCUSSION

Martin Jan Stránský
Thank you very much, Rabbi Friedlander. I’m so happy you said what you said, because as a member of the Program Committee, I couldn’t have said it, but I’m going to say it anyway — it’s the number of empty seats in the room that are the true barometer of where we are in terms of looking at those who are disadvantaged of certain types of conditions and illnesses which we think don’t affect us. I’d like to call for the next question. If you’re from the audience, we’d like if you could please write your question down and if you’d like to address it to someone in particular, otherwise if you’re absolutely sure you can make a very short speech, and keep it very short, there may be a microphone circulating. Are there any people from the Forum 2000 staff here who can pick up written questions? If you’re here, just identify yourself by raising a hand. So is there anyone else who would like to volunteer a question, a comment a complaint? Yes.

Comment from audience
Hi. I just wanted to ask Waris, with the responsibility we have as a global society to address issues of abuse to women, especially as you mentioned, female genital mutilation, I was just wondering, especially because a lot of the money and the power lies in the West to do this, what role should the West play, especially since we should not be patronizing, we should not try and overtake the African countries, but just in regards to how we can empower women within the African countries to actually liberate themselves, rather than coming and putting a hand on their shoulder.

Waris Dirie
I think the best way, and the fastest message to give to those people would be information and education. Not only that, we need clinics, we need doctors, we need nurses, we need teachers. Until, and first of all, we have to put Somalia on the map. For me, my personal mission is to raise
enough money to open places like that, in little villages where not just FGM continues, but so much suffering goes on, including diseases, including polio, and so on, and AIDS, and on and on. So for me, I’m raising money for a foundation to open those places, to open in all those places, to teach them, to get to them, to get to the religious leaders, the village leaders, the political leaders, to all of that. And the foundation’s called Desert Dawn, and it should be running any time now.

Martin Jan Stránský
Thank you. May have the next question, comment? Yes, please.

Shunling Chen
I’m a delegate from Taiwan, my name is Shunling, I just want to — I don’t know if this is a question or not — I just wanted to respond to Waris. What you have said about the genital mutilation, the practice of genital mutilation. I don’t think it’s such, I think it’s quite well known problem, actually, especially in the feminist debate, and whether feminists mostly are, not based in Africa, are supposed to do anything to stop directly or so bluntly to think about this question of genital mutilation. That is because I was first a little bit confused why this genital mutilation problem is situated here in this panel, since I thought it should be a feminist issue instead of a genital one, but you have connected with the equipment that has been used in the practice. But what if people say that in the reason, for hygiene reasons, we would use clean equipment to do this, then it’s not connected to the health issues, not connected to HIV issues raised here. And I would say that its fairly strange because I still, I would say, I don’t usually say I’m a feminist but, as one who has been considering feminist issues very usually, I think it is always very difficult problem for me, because as a person from island culture, and I don’t know what the women, if she is staying in her village, in her land without accepting this genital mutilation, how is she going to be treated by the society, in family, by the whole structure of society and how are people going to intervene instead of making it hard, at the same time avoiding to make them miserable in other aspects. That’s always been my problem and I would like you to help me through it a little bit. Thank you.

Waris Dirie
Well, I didn’t really quite understand all that you said. But, if you’re asking why did it in the first place exist, and what happens if the woman isn’t circumcised? Did I correctly understand? First of all, why did it exist? The existence, we really have no idea why it exists. But as time went on, we clearly understand why. It was mainly, partially, pure controlling, not just control, but knowing the man is the head of, where I’m from, the man is the head of every village and every household. Everything and anything he says goes and therefore it started from a man. And I’m not being a feminist, or whatever you called it, but it’s the truth. It started that, the men to know when his wife, where she is and how she’s going to be. Basically not trusting her. And so I one time asked a man, a gentleman, in Africa, especially in my country, I said, why did we do this, why did it exist and how, and he said, “well, would you leave your door open in the morning when you leave your house?” To me that was his answer, really, that’s the only answer he gave me. And since we’re here to discuss the human values, how are you going to teach those who feel that way? So to change people’s mentality and ideas, and show them, I’m not saying change your culture or completely get rid of your culture, I love my culture very much. But there’s one little thing I do not like. So we have to understand well the culture, to get rid of the bad, and keep the good. Do not confuse the culture, just the sake of it, there’s so much that goes on in one culture alone. You West, you’ve got yours. Don’t get me started — I won’t even start nothing. We’ve got ours. So, the second question, why the women accept it, she has no
choice. She has no choice. She has been taught, if you can’t have children, is not to be a woman. No woman anywhere in the world has that choice. You can’t have children, just because. Second, you cannot accept it in the family, or the community you’re from. You’re considered unclean, you’re considered unacceptable, you’re considered not a woman and no value. The value should be the human being just be. That’s the reason I was born, just to be. But then our society, our people, we change everything. And so that’s the reason, she have to accept, and she have to do. Otherwise she’d be destroyed again, in a different other way, if she didn’t go through, or endure this.

Martin Jan Stránský
Thank you Waris. Yes, we have a response from the table.

Noerine Kaleeba
I just wanted to share briefly an experience, coming from a country where female genital mutilation was practiced, and continues to be practiced. But to a much, much lesser degree. To say that the process of getting communities to understand the impact this has on women is a process that has to be taken, not only focusing on educating the women, but educating the elders, and also educating at a policy level, that a policy framework can be made available through which the community action can be taken. And also to make a follow-up comment on the issue raised as to why this issue is related to health. It’s not only because if dirty instruments are used, it’s related to transmission of HIV, it was demonstrated in community studies in Uganda that girls who had been mutilated had a higher level of HIV infection, sexually transmitted, not transmitted through the knife, due to the trauma, that girls who have been, whenever they have sexual intercourse, sexual intercourse is associated with trauma, because of the scarring which happens. And the scars cause trauma every time sexual intercourse happens, and that leads to further opportunities for the virus to be transmitted. So it really became, once this information became available, and was discussed at community level, and presented to community leaders, in community friendly processes, then the whole process comes together. It’s not only the woman, who is isolated at the village, who is saying no. But the pressures are coming from different prongs.

Comment from audience
Thank you very much. Mine is really not a question, but it’s a comment. I would like to express my greatest congratulations to those African women sitting in front there, and the efforts they are making to change their societies from within. Ms. Dirie, if more Africans and more people who have the ability to go out there and mobilize resources can come back and utilize those resources within their countries to make change from within, then a lot of time, we won’t have to make the call out to get help from without. What your foundation is intending to do is the first step of change. You who have experienced it and have managed to go out and speak about it, come back