3rd International Symposium on Leprosy and Human Rights

Addis Abeba, Ethiopia

It is a pleasure to welcome representatives from governments, the United Nations, NGOs, and other international organizations, as well as human rights experts, and leaders of people affected by leprosy. Furthermore, I wish to convey my deep appreciation to Dr Luis Sambo, WHO Regional Director for Africa, for your dedication toward this important fight against leprosy. I would also like to thank Secretary General Ban Ki Moon and His Holiness the Dalai Lama for their very encouraging video messages. 

This is the third regional symposium on leprosy and human rights. Leprosy has been one of the most misunderstood and stigmatizing diseases known to humankind. Left untreated, it can cause external damages such as skin discoloration and deformities on the face, hands, and feet. The appearance of the sufferers struck fear in people’s hearts and led many to believe that the disease was a curse or punishment from God. Without a known cause, leprosy patients were universally removed from their communities and placed in isolated villages or remote islands. The stigma against leprosy not only burdened the affected individuals but also their family members. 

In the 1980s, multi-drug therapy was developed and leprosy became curable. With early detection and proper treatment, leprosy patients could now be cured before the onset of visible disability. However, this enormous medical breakthrough was unable to tear down the immense wall of stigma and discrimination that had built up around those affected by leprosy over centuries. 

In my 40 years of working for the elimination of leprosy and its entailing stigma and discrimination, I have travelled the world and met with thousands of people affected by leprosy. Among them were those who remained silent out of fear that discrimination would multiply if they were to speak out for their human rights. But the majority by far did not even have a concept of human rights. 

I realized that the life of each affected individual may be different; however, the intense pain and suffering which are inflicted upon them by their societies are universal. I wasn’t about to accept such social injustice without a fight. It was this determination that led me to approach the Office of the United Nations High Commissioner for Human Rights in 2003. There, I addressed the problem of leprosy as a violation of human rights. After seven years of relentless persistence and with the wholehearted support from member countries, NGOs, and various other entities, on December 2010, the United Nations General Assembly passed a resolution on the “Elimination of discrimination against persons affected by leprosy and their family members.” 

It was yet another remarkable breakthrough; this time on the social front. For the first time, the international community recognized the rights of these abandoned people and the importance to work toward the eradication of the stigma and discrimination against leprosy. But more importantly, this resolution awakened the minds of the affected people themselves; that they are entitled to the fundamental human rights that are granted to every one of us and all human beings on earth. 

The resolution recommends governments, other bodies and actors in society to give due consideration to the accompanying principles and guidelines, or P&Gs, when they are formulating and implementing policies. The P&Gs state that persons affected by leprosy and their family members should be treated as people with dignity and are entitled to all human rights and fundamental freedoms without discrimination on the grounds of leprosy; and the P&Gs also lay out specific provisions that governments should follow, such as abolishing discriminatory legislation and removing discriminatory language from all forms of publications. 

But the UN resolution is not a binding document. Unless the P&Gs are put into practice, the resolution would just be words on paper and people affected by leprosy would continue living behind the thick walls of discrimination. 

This is why we are here today. This conference is the third of a series of five regional symposia on Leprosy and Human Rights to familiarize governments, policy makers, and related bodies with the P&Gs that accompany the resolution and to guide them on how to put them to good use. The first two symposia took place in Brazil and India. The International Working Group was formed after the conference in Brazil and they are now working to compile a more concrete action plan to make it easier for governments to implement the P&Gs in their countries. 

Many of the problems facing people affected by leprosy today stem from society’s misperceptions and ignorance about leprosy. Here too in Africa, leprosy is still mistakenly assumed to be highly contagious and therefore, those affected by leprosy should be avoided. Furthermore, deeply entrenched notions that leprosy is hereditary destroy the self-esteem and dignity of those diagnosed with the disease and casts a shadow over their families.

Sinknesh, is a 28 year old woman born in the western region of Ethiopia. When she was twelve, she began to develop symptoms of leprosy. Sinknesh was lucky to meet leprosy workers in town who took her to Addis Ababa to be treated. With a year of treatment, she was completely cured, but her family disowned her all the same. They burned all of her belongings, told her that she was a curse and a disgrace to her family, and that she was never to return home. Being abandoned, and with no skills, she had to resort to begging on the streets. 

To many people affected by leprosy, this is sadly a familiar story. In various places in the world, the only option to survive is to beg on the streets. Diagnosis of leprosy still threatens relationships and opportunities for education, jobs, marriages, and community participation. Furthermore, they can sometimes be discriminated against from members of the medical profession. 

As you can see, the circumstances confronting people affected by leprosy are still grave. But the dire conditions can be ammended if the P&Gs are put into practice. Specific measures that governments should implement include services such as healthcare, education, vocational training, adequate standard of living, and employment to those affected by leprosy and their families. 

Here in Ethiopia, the Ethiopian National Association of Persons Affected by Leprosy (ENAPAL), which was founded by people affected by leprosy is making a difference at the grassroots level. ENAPAL is dedicated to empowering people affected by leprosy by providing opportunities for education, skills training and microfunding. They also engage in nationwide campaigns to raise public awareness about leprosy.

Sinknesh was fortunate to find support from ENAPAL. Now, she no longer begs, she has found work at her church doing embroidery, and she has even returned to school. But we cannot forget that Sinknesh’s case is an exception. The majority of people affected by leprosy have not been able to get the help and services they need. It is critical that governments expand services on a national level and work closely with NGOs like ENAPAL, to ensure that everyone who is affected by leprosy is able to receive quality care. 

Sinknesh, suceeded in making a better life for herself. However, despite her efforts, a wall still stands between her and the rest of society. Even after many years of being cured, she still lives in a leprosy settlement; she is avoided by some coworkers due to the visible disability on her hands and feet; and except for her brother, she has not reunited with her other family members. 

So what must take place so that we can prevent stories like Sinknesh’s from being repeated? It is raising the awareness of societies. It is putting an end to the centuries of ignorance, prejudice and discrimination against leprosy. This is the most challenging task. The decisive event that put Sinknesh on a path of terrible hardship was her parents’ ignorance toward the disease. Leprosy is not hereditary, it is not a curse; it can be cured with proper medication; and therefore, it is nothing to be ashamed of. We must make sure that this message becomes common knowledge in every society. 

And how shall we accomplish this? As written in the P&Gs, it is imperative that governments work with NGOs, civil societies and media to formulate policies and plans of action to raise awareness in society and to foster respect for the human rights and dignity of persons affected by leprosy and their families. This is the most difficult task and the most time consuming. But if governments can make a commitment toward this end, I am convinced that we will be able to make an impact that is farreaching. The more people who know the correct information on leprosy, the less stories we will have of ones like Sinknesh. 

Someone once said: “The walls around this leprosarium are only 20 centimetres thick, but they hold out an entire world.” The days of forced confinement are now long past but that does not mean the invisible walls that separate many people affected by leprosy from society have disappeared. We have a duty to bring these walls down. 

I believe holding this conference in Ethiopia, the headquarters of the African Union, holds great significance. With this conference, and with Ethopia taking the lead, all African states, and all of us stakeholders shall do our part to tear down the invisible wall of stigma and discrimination from every corner of the African continent; and together realize a world without leprosy and its consequences.

Thank you.