Stigma, Identity and Human Rights:
The Experience of Leprosy
in the Era of HIV/AIDS
Robben Island, South Africa
International Conference Sponsored by
IDEA and the ILA Global Project on the History of Leprosy
in Association with Robben Island Museum
“The place where we are now, it used to be a prison. We visited some of the graveyards of our brothers and sisters who were placed here as a result of discrimination, but with the rights that we have today, we were all there making prayers for the past for the present and for the future. This is human rights.”
-- Jaime Tomas Cabeto, ARPAL/IDEA Angola
“Stigma shouldn’t be seen as residing in the individual with a disease, but it resides in the society that has not found a way to be inclusive. We have a duty to diagnose and treat this stigma.”
-- Dr. John Manton, Wellcome Unit for the History of Medicine at Oxford
The IDEA Banner of Honor is displayed at the cemetery on Robben Island where individuals who had leprosy were buried. Inspired by the AIDS Names Quilt, the Banner of Honor recognizes individuals who have had leprosy who have made significant contributions to their communities, their countries and the world. Photo by Henry Law
Conference participants on Robben Island, with a view of Table Mountain and Cape Town in the background.
Photo by Henry Law
Clint Añabieza, Philippines, and Dr. Yo Yuasa, Japan. Photo by Pamela Parlapiano
Chamado Abibo, IDEA Mozambique, and Amar Timilsina, IDEA Nepal. Photo by Pamela Parlapiano
“. . . though I’ve spent some years reading in the history of medicine and the history of leprosy, it really is genuinely true, I couldn’t have learned anything that I’ve learned in the last two days if I hadn’t been here, listening to people’s stories . . . . when you hear about the history, the stories that we’ve been listening to, you wonder if we learn anything from history at all . . . . It’s really rather depressing in some ways, but here are also some more positive aspects of this.
“I want to start by just saying something about the history of slavery, partly because we’re here on Robben Island, but also because I think there are some parallels . . . . We all know that in the history of slavery is a history of struggle against the deprivations and stigmatization . . . . What slaves were deprived of were their names, their families, their languages . . . . [and] perhaps most importantly of all, their histories. So part of the struggle against slavery and within slavery was to recover a history, but integral to the struggle against slavery was always the telling of stories . . . . people who had been slaves, felt they carried a stigma of slavery. Slavery is not a disease but it’s a social condition that can give you a stigma. And they also found that there were other more complex forms of social and economic discrimination that they were faced with. They were faced with racism . . . . they were faced with economic deprivation, they were faced with the fact that they couldn’t get proper jobs, they were faced with a lack of education, all those things we know about.
“If there are any lessons to be drawn from this, then I think for me what I’ve learned from listening to you all is how you found strength in unity within this organization, IDEA. And I think this is a very interesting case of a very successful, political and advocacy organization from which other organizations dealing with other issues may well want to learn.
“I’ve also been incredibly impressed by the ability of people from such diverse places facing quite diverse kinds of struggles to come together and give each other support and move forward.”
-- Professor Megan Vaughan, Smuts Professor of Commonwealth History, Cambridge University, U.K.
Zilda Borges, Brazil, and Alhaji Shehu S/Fada, Nigeria, departing from Robben Island. Photo by Henry Law
“Bacarau used to say that we were supposed to bring other social issues to be discussed within the movement. I met Bacarau a year and a half after I joined Morhan, 21 years ago. When I met him in Rio De Janeiro, it was a cold, rainy evening. He pointed at a child who was covered with newspaper sheets on the street and he also pointed to a car that had had a rain protection cover. And he said that we were supposed to fight against any form of social injustice. Because the same situation, same conditions that cause leprosy discrimination, were the same conditions that made our society protect a car more than a child.”
-- Artur C.M. De Sousa, remembering Francisco A.V. Nunes, “Bacurau”, the founder of MORHAN and IDEA’s first president for international advocacy
“The stigma is part of my life, of my existence. In other words, if I try to shy away from that I actually need to try to shy away from a part of my existence. I need to deny something that is in my life. That’ll to my mind be a decimation of my own life. I would, I would return my life to nothingness . . . . If society is not prepared to accept us as what we are, society is not worthy of us. It’s not we that are not worthy of society, society is not worthy of us.
“Let us bear this mark, this stigma, with courage. Let’s face the world with courage . . . . and we can help others to come to terms with the facts of their lives.”
-- Reverend Albrecht Hahne, The Leprosy Mission South Africa
Rev. Albrecht Hahne, (center) participates in the panel discussion on “The Effect of Stigma on Individuals and Families” together with Dr. Harriet Deacon (left) and Adi Yosep from Indonesia. Photo by Henry Law
“The Norwegian isolation policies of the 19th century served as models for other countries, especially in terms of legislation. The idea that the Norwegian policies were rather humane and rational, like Hansen saw them, seems however still widespread, but I think we lose an important opportunity to understand the dynamics of banishment if we attribute the building of modern leprosaria to a theory of contagion, disconnected from public stigma.
“When the Norwegian State finally took action and founded four new state run leprosaria around 1850, it turned out to be difficult to fill them with patients. In spite of the national patient censuses and registries, many tried very hard to avoid hospitalization. We know their reasons. The institutions offered hospitalization for life, far away from home, and not much else. The medical men must have been disappointed and national authorities were sceptical. A medical committee proposed a new act that would force all young sufferers into hospital, but the proposal was voted down by the parliament.
“In the next couple of years, the leprologists developed new strategies for hospitalizing patients
. . . . the disease was now described not as a social tragedy, but as a horrible threat to the surroundings. Dr. Danielssen had changed his style. The aim was obvious. This new and scary image of the disease was meant to nourish public fear. It would make it more difficult for the individual sufferer to be supported by family and friends in his or her attempts to avoid hospitalization.”
-- Sigurd Sandmo, Curator, The Leprosy Museum, Bergen, Norway
(Left to right): Simonne Horwitz, Mimi Badamuti, Inez Stephney (Human Sciences Research Council, Cape Town) and Saruto Labbo. Photo by Pamela Parlapiano
“It’s very fitting that we are here in a site that’s linked to rebellion and resistance. In my own work on Westfort (a leprosy hospital that’s just outside of Pretoria) from about 1890-1948, one of the themes that I constantly find is that the authorities tried to segregate and oppress people by gender, by race and by their disease. They were constantly trying to segregate them to take away their identity. Yet, it was very clear that people fought against that . . . . Yesterday there was a talk about the political prisoners signing their names and it’s the same with Mr. Pipe who was at Westfort . . . . a man who wrote to the newspapers, not as a person affected by leprosy, but as a person . . . . There were a number of occasions where the women patients, for example, had a sit down strike and refused to work until they were called by their names . . .”
-- Simonne Horwitz, Wellcome Unit for the History of Medicine at Oxford
“The main idea of the absolute segregation policy in Japan was to abolish and eliminate the patients. It was not to cure them. I was diagnosed with leprosy in 1947. I was shunned by society and segregated in a sanatorium on an isolated island. There, I was forced to wait for my life to end.
“A poet living in the sanatorium on the island where I was sent once said: ‘Like those luminescent fish
dwelling in the sunless depths of the sea, I will find no light until I light myself up from within’ . . . . After 21 long years, I finally returned to society.
“In Johannesburg, I went to an Apartheid Museum. There I saw the history of the people who were put
in jail for no reason other than being black. That particular image overlapped with my own experience. In this sense, apartheid, the Japanese segregation laws and segregation policy, were similar. One was for racial discrimination and the other was discrimination against those people who have leprosy.”
-- Ryohei Shibata, IDEA Japan
“These people who died here, they helped pave the way for us to join together to fight against the discrimination. That is why we are here. We pay our respect to them, we pray for them.”
-- Dr. P.K. Gopal, India, President for International Relations, IDEA
The grave of Corbis Le Roux, who died in 1877. This may represent the earliest known grave of someone who was isolated on Robben Island because they had leprosy.
Photo by Anwei Law
Jan Mahlangu, IDEA, South Africa, views a photograph of Nelson Mandela and Walter Sisulu located in an exhibit in the Maximum Security Prison on Robben Island. Photo byPamela Parlapiano
William Malo, who was isolated at Kalaupapa, Hawaii as a young man but has lived in the community for the last 40 years, presents his experiences. Photo by Henry Law
Alhaji Shehu S/Fada, IDEA Nigeria, with Sigurd Sandmo, Norway. Photo by Pamela Parlapiano
William Malo, Hawaii, with Dr. Wim Van Brakel, The Netherlands. Photo by Pamela Parlapiano
Dr. David Scollard (right), Editor of the International Journal of Leprosy, with Bhekani Memela, member of the Sinikithemba HIV+ Choir. Photo by Pamela Parlapiano
From February 4-6, 2005, individuals from 16 countries whose lives have been impacted by stigma, either as a result of leprosy or HIV/AIDS, joined in discussion with historians specializing in the field of leprosy, HIV/AIDS and human rights. The powerful backdrop of Robben Island, an international symbol of (in the words of the Robben Island Museum) “the indestructibility of the human spirit of resistance against colonialism, injustice and oppression”, inspired discussions of how history can effect social change. At the same time, the legacy of Robben Island and all those who resisted its oppression empowered discussions on how stigma denies both identity and human rights, with a view to developing concrete actions that can be used towards eliminating the power of stigma to destroy people’s lives.
Dr. P.K. Gopal, IDEA’s President for International Relations (center), with Mr. Yohei Sasakawa, President of The Nippon Foundation.
Photo by Pamela Parlapiano
Jan Mahlangu, an IDEA member from South Africa, with Dr. John Manton, who is currently based at Oxford. Photo by Pamela Parlapiano
“Robben Island represents the triumph of the human spirit against adversity. What does it mean for the spirit to triumph? One of the ways in which we have interpreted it is that we triumph through resistance; that an act of resistance against oppression, an act of resistance against stigma, an act of resistance against segregation, is a triumph of the spirit.
“When you came into prison, your name was written down into a book and you were given a number. You were told any communication that happened between you and the authorities would be done through your number. You lost your name, you lost your identity, your sense of belonging. So there was an attempt to erase an identity . . . .
“So when we fight against oppression and segregation and we fight against erasure, the voices of people who have experiences of a particular condition should be the people who speak. And that’s why when we learned who the participants in this workshop were, we were very excited. We said, yes, this is in keeping with the mission of this institution.”
-- Deirdre Prins Solani, Manager, Education Department, Robben Island Museum
“Coming to Robben Island . . . . you met people who had a common understanding, a common journey, and destiny like you. Robben Island was a learning institution. The first morning here, it was kind of cold, and a guy said to me, ‘You’re home now. You’re not going to live tomorrow, you’re not going to live yesterday, you’re going to live today and today only. Now look around. You’ve got brothers, you’ve got fathers, you’ve got uncles, you’ve got everything you need. Whatever you need, approach any one of us.’ And, I felt safe for the first time.”
-- Eugene Mokgoasi, former political prisoner, Robben Island
Jose Ramirez, Jr., IDEA USA, meets Eugene Mokgoasi.
Photo by Pamela Parlapiano
Visiting the Apartheid Museum in Johannesburg: Ryohei Shibata (seated) with his wife Suiko (right) and Nao Hoshino. On the left side of the photograph are Mieko and Miyoji Morimoto and Lian Law.
Photo by Pamela Parlapiano
“There were various kinds of resistance that both political prisoners in the post-1960 period and leprosy patients engaged in. For example, some people just buckled down and concentrated on education programs and developing a community among the patients. They collected lobster and crayfish on the beaches, smuggled contraband and alcohol, and smuggled newspapers in . . . . With the 1892 rebellion led by Franz Jacobs, there was active resistance against institutionalization on the island. I think what’s so interesting about Franz Jacobs’ rebellion was number one, the way in which it was silenced. There is almost nothing in the colonial archive here in Cape Town about the rebellion. The only place I’ve found any record of it was in London at the Public Records Office. It has been wiped off the face of the colonial archive . . .”
-- Dr. Harriet Deacon, South Africa, Robben Island Historian; Consultant, Human Sciences Research Council, Cape Town
(Left to right): Dr. Harriet Deacon, Alhaji Shehu S/Fada, Thotoane Pekeche (Robben Island Museum) and Sigurd Sandmo. Photo by Pamela Parlapiano
“One day I started to think beyond my disability, beyond stigma, beyond the disease.
“My life started to change. I started to resist.”
-- Arega Kassa Zelelew, IDEA Ethiopia, who helped found the Ethiopian Association of Persons Affected by Leprosy and the Ethiopian Federation of Persons with Disabilities
Arega Kassa Zelelew (right) participates in a panel on “Resistance: Retaining Identity in the Face of Oppression” with Simonne Horwitz (center) and Nao Hoshino representing Yasuji Hirasawa. Photo by Henry Law
“Human rights are not abstract nor only the result of legislation or public statements. They refer to the respect for the individual as a person, for his or her dignity, and the right to pursue his or her life. The ‘right to health’ means the right of each member of humanity to realise his or her own potential in life, and this means also the obligation of the national and international authorities to ensure this realization of potential, even in conditions created by disease or disability.
“The globalization of health responses must be based on the value of equity, on the diffusion and application of knowledge, and on moral indignation over injustices associated with health.”
-- Professor Bernardino Fantini, Director, Institute of History of Medicine & Health, University of Geneva, Switzerland.
Saruto Labbo, IDEA Nigeria, speaks as part of the panel discussion on “Breaking the Silence: Women and Stigma”.
Photo byPamela Parlapiano
“When I was nine years old and was going to school, I used to have needle pricking competitions among my friends, because of my loss of sensation . . . . When I eventually started the treatment, my suffering started because other people came to know that I was suffering from the disease. When I went back home and started going back to school again, they refused to have me in the class. So I was thrown out of the school as well as from the community. I was compelled to forsake my family and the love of the village where I was born and brought up . . . . Slowly I started getting dignity back into my life. I got married, I have two children and am now the General Secretary of IDEA Nepal.”
-- Amar Timilsina, IDEA Nepal
“If you go to our village, you cannot see any children because even now we are still not allowed to get married and have children. Many decades have passed. We have suffered many difficulties and in 1968 some people around our village came to attach us. Some people also committed suicide because their family wouldn’t accept them. I was sent to the village in 1963 and I have only gone back home two times. I had to walk because we are not allowed to ride on the public bus. I had to spend more than 10 hours to walk back home. When I got there, my family didn’t allow me to go into the house because they were afraid that I would bring them trouble.”
-- Feng Keteng, Handa/IDEA China
“The question is, is the stigma ever going to end? That’s the question I ask myself every day. Every time you are talking about HIV and AIDS, people they think you are talking about a wild animal that can pounce on them, attack them and kill them instantly. But it’s not. I’ve got a great experience about stigma, because in our country, here in South Africa, we are labeled . . . . we must stand up, we must break the chains, we must break the silence and speak out . . . . For me, I live positively with my status, I reduce stress, I talk to my virus. I tell my virus that if it kills me, we are both going down together . . . . So, women, men, with HIV/AIDS or leprosy, let us stand up and fight together, and fight these diseases . . . .and fight stigma and discrimination.”
-- Mimi Badamuti, South Africa, Sinikithemba HIV+ Choir
Mimi Badamuti places a shell lei on the grave of an unidentified individual who had been isolated on Robben Island due to leprosy.
Photo by Henry Law
Left to right: IDEA members Saruto Labbo (Nigeria), Chamada Abibo (Mozambique), Alhaji Shehu S/Fada (Nigeria) and Miyoji Morimoto (Japan) stand in front of an exhibit on Robben Island that recalls the words of Ahmed Kathrada, prisoner 468/64 from 1964 - 1982, and is currently the Chairperson of the Robben Island Museum Council: “We want Robben Island to reflect the triumph of freedom and human dignity over oppression and humiliation.” Photo by Pamela Parlapiano
(Left to right) Tiruwork Mengistu and Birke Negatu, IDEA members from Ethiopia and Saruto Labbo from IDEA Nigeria look at an exhibit showing some of the early women who were sent to Robben Island due to leprosy. Photo by Henry Law
Mimi Badamuti, Member of the Sinikithemba HIV+ Choir and Alhaji Shehu S/Fada, IDEA Nigeria.
Photo by Pemela Parlapiano
“Our colleagues, our companions on Robben Island from 1846-1931, they were fighting alone here on this island. Now we are united and this gives us strength.”
-- Arega Kassa Zelelew, IDEA Ethiopia
Erna Moller, Jan Mahlangu and Rev. Albrecht Hahne, The Leprosy Mission South Africa. Photo by Pamela Parlapiano
Mimi Badamuti, South Africa gives a beaded HIV/AIDS support pin made by the Sinikithemba HIV+ Choir to Crescenciano Rosello, IDEA Philippines, with Dr. Arturo Cunanan (back), looking on. Photo by Henry Law
“Despite our hopes, stigma and discrimination surrounding leprosy are still with our people. They have accumulated throughout history and will not go away in such a brief space of time.
“Bacurau from Brazil once said, ‘When a person dreams a dream, it is only a dream. But when that dream is shared by others, for certain that dream will come true.’ When I think of his words, as I think of my own life, the words attain a certain ring of reality.
“The dream that we all dream will, for certain, come true, just as there are no days that the sun does not come up.”
-- Ryohei Shibata, IDEA Japan