No.100 Special Interview II: Encouraging Signs

UN Special Rapporteur on leprosy reflects on three years in the role.

Alice Cruz (left) with Professor Shigeki Sakamoto in Tokyo

A notable milestone in the years since this newsletter was first published was the 2010 UN General Assembly resolution on elimination of discrimination against persons affected by leprosy and their family members. This has resulted in a growing focus on leprosy as a human rights issue and paved the way for the appointment in 2017 of a UN Special Rapporteur on leprosy for a three-year term.

 In February, Alice Cruz made an official visit to Japan, during which she called on the Center for Human Rights Education and Training. There she was interviewed by its president, Professor Shigeki Sakamoto, who oversaw the Principles and Guidelines* that accompanied the 2010 resolution, and its managing director, Tatsuya Tanami, special advisor to The Nippon Foundation and former executive editor of this newsletter. Excerpts from the interview, which appears in Japanese in the Center’s publication Allyu, are used with permission. 

*Principles and Guidelines for the elimination of discrimination against persons affected by leprosy and their family members.

 (This is an extended version of the interview appearing in the print edition of Issue #100 of the newsletter.)   

What is a UN Special Rapporteur?

A Special Rapporteur is an independent expert, usually with some sort of background experience on the theme of their mandate. For that reason, they are able to make quick assessments of the situation in a given country and are also expected to provide technical support to improve a country’s actions.

Cruz: “It is hard for people to grasp that leprosy is a human rights issue.”

Our method of working is to present reports to the Human Rights Council. These can be thematic reports or country reports. Country reports are important because they provide governments with an assessment and recommendations. But country visits only happen at the invitation of governments.

There are other ways that special rapporteurs can engage with governments, but I think that one of our main missions is to give a voice to the voiceless—to act as a bridge between governments and the UN system, and people on the ground.

What kind of discriminatory attitudes, practices, customs and regulations do persons affected by leprosy face?

The situation is very different from country to country. For example, in June I will be presenting two country reports—one from Brazil and the other from Japan—and it will look like I’m talking about completely different issues. There are countries where there are still a fairly high number of new cases, together with all the issues that people living with Hansen’s disease face, such as discrimination and disability, and other countries where Hansen’s disease is no longer significant from an epidemiological standpoint, but where stigmatization persists.

There are countries that still have a number of discriminatory laws—India alone has more than 100—and countries that still have a lot of discriminatory institutional practices. For instance, when I visited Brazil last year, I found there are some municipalities that place restrictions on persons affected by Hansen’s disease applying for jobs. I think institutionalized discrimination is very widespread but that governments are not very aware of it. They think that because they have no discriminatory laws, there is no institutionalized discrimination.

I’m particularly worried about what can be a new type of human rights violation, which I call institutional neglect. I hear from many persons affected, especially in African countries, who feel that the numbers reported by their governments are not accurate. I worry that in some countries, Hansen’s disease can be completely neglected because it is not one of their priorities. That can favor transmission, but also ongoing discrimination.

What has been the reaction of member states of the Human Rights Council to your work?

The first time I presented to the Council, there were some states saying this mandate should not exist because it overlaps with other mandates, such as health or disability.

Professor Shigeki Sakamoto, president of the Center for Human Rights Education and Training. He oversaw the Principles and Guidelines that accompanied the 2010 UN resolution on elimination of discrimination against persons affected by leprosy and their family members.

But I believe that with the work of the mandate, and especially with the most recent thematic report**, which was very descriptive, the attitude of the Council changed and I received a lot of support. The strategy to try to gather information about people’s experiences of discrimination worked very well. Because the report gave voice to the people, member states realized that people are suffering multiple violations and that this is truly a human rights issue.

** “Stigmatization as dehumanization: wrongful stereotyping and structural violence against women and children affected by leprosy”

You talked about institutional discrimination. Have you found other factors that influence attitudes toward people affected by leprosy, such as religious or other long-held beliefs?

I think what is striking about Hansen’s disease is that we find a stigmatizing response to it from almost every religion, which itself is striking because we are talking about very different cultural backdrops. For example, religions have historically represented leprosy as the opposite of morality. In Christianity, we have the association between leprosy and sin, while in Buddhism it is associated with reincarnation and bad deeds in a past life. There is always this notion that somehow people affected by leprosy are responsible in some way, so they deserve punishment. They incorporate everything that society sees as bad.

Institutionalized discrimination is a result of this. Institutions always reflect social beliefs, and that is what we witnessed in the modern history of medicine regarding leprosy. The segregation policy that was agreed upon in the late 19th century is really the result of traditional beliefs much more than science. There was not much evidence to support the segregation policy, but there was a strong belief that leprosy was highly contagious and that leprosy was something that should not belong in a modern nation. That is why we must work not only with official authorities such as governments, but also with traditional authorities.

What I found most striking about last year’s research from my report is that the stereotypes that endure in religious beliefs and social beliefs do not affect everybody the same way. Women usually are very much more vulnerable to these types of religious stereotypes on leprosy. We cannot separate that from gender equality, and must try to work on that too. I think it is very much interlinked.

Empowerment, from my perspective, is the key for the sustainability of the human rights approach.

Part of your role is working on how to have countries implement the Principles and Guidelines. But what role do they play in a real sense? Where we are now?

 Even though persons affected by Hansen’s disease and their families are protected by international human rights instruments, the Principles and Guidelines can provide governments with a roadmap on how to enforce already recognized rights for a very vulnerable and marginalized population. Having said this, I think that the struggle to get states to go from law in books to law in practice is huge. The gap is much bigger when it comes to something non-legally binding like the Principles and Guidelines.

Tatsuya Tanami, the Center’s managing director and special advisor to The Nippon Foundation. He is the former executive editor of the Goodwill Ambassador’s Newsletter.

More work needs to be done to sensitize states as to the importance of the Principles and Guidelines, and how they could be used. But I believe they are already being implemented, even if not in an intentional way. I can see that there are many initiatives that some states take that closely relate to the Principles and Guidelines. I think my task is not only to try to raise awareness of this instrument, but also to show in practical terms how it is being implemented in order to strengthen this more direct connection between what the governments are trying to do and the Principles and Guidelines.

I think too that we cannot disregard the importance of this instrument for the persons affected themselves. Having had all these resolutions at the UN, and having an instrument just for them, is really empowering.*** Empowerment, from my perspective, is the key for the sustainability of the human rights approach. But the Principles and Guidelines need to be translated into languages that people understand; otherwise the content is inaccessible to them.

*** There have been five UN Human Rights Council resolutions and one General Assembly resolution on leprosy between 2008 and 2017.

You are now in your third year as Special Rapporteur. What do you think you have achieved, and what challenges remain?

I had great expectations when I took on this very complex role. I have learned along the way that I need to look at very small results as encouraging, because the big results keep falling from my hands; they are very difficult to reach.

For example, I would have liked to have had the opportunity of visiting more countries and of engaging more directly in a conversation with the states. What I think acted as the main barriers to this are as follows. First, this is a new mandate, and it takes time for new mandates to establish themselves within the system. Second, it is really hard for people to grasp that leprosy is a human rights issue. Even the civil society organizations working with Hansen’s disease are really just beginning to work on the issue as a human rights issue. So, not only was the UN system not prepared for this mandate but I think civil society was also not prepared—and for the mandate to be successful, both those elements are necessary.

But I think there is also another dimension, very much more deep-rooted, that relates to the stigmatization of leprosy. I feel that in the mindset of most people—and that includes people working for governments—leprosy is really something that must be left in the past, or, if it is not in the past, must be quickly thrown into the past; it is not an issue to talk about. They think the main goal should be to decrease the numbers from an epidemiological point of view, and that will be enough.

I think this also has to do with the fact that, among the member states, there’s not an understanding that a mandate such as this is not really about going to a country and seeing if they have many cases or not; it is actually about looking into what is a structural problem, one that is not related to their government but to centuries of history. I feel they are a bit afraid that I will visit the country and say they have a lot of cases and that people are disabled.

I think Japan has a very important lesson to share with the world with regard to the importance of people resisting violations perpetrated by the state.

Can you point to any accomplishments?

Notwithstanding what I have just said, I feel that the understanding of states with regard to Hansen’s disease is beginning to change, and that may be the start of something better. We had a side event last June in Geneva and it was amazing—the reaction of not only the governments that were there, but also our senior officers of the Office of the UN High Commissioner for Human Rights. They really didn’t know or understand why leprosy is important. Their thinking was, when we are dealing with extreme poverty, with violence against women, why does leprosy matter? But once they hear the people, and they understand that they are victims of poverty, of gender-based violence, of all those issues that they work with, they see the point—they see that leprosy is really about all that.

I am happy too that I have been able to mainstream leprosy within the system. When the mandate began, the Treaty Bodies and the Universal Periodic Review were not including leprosy in their work; now all the human rights mechanisms have included leprosy one way or the other.

 What have you learned from your Japan visit?

I think Japan has a very important lesson to share with the world with regard to the importance of people resisting violations perpetrated by the state, standing up and speaking out, and how that is key to truly building a democratic and free society. I think that the struggle of persons affected and family members in Japan teaches a lot about that. But I also think that it is very important to commend the government for listening to the people’s voices and respecting their choices. Both these elements are important.

Cruz: “I want to present states with a comprehensive multisectoral policy framework to guide their work in implementing the Principles and Guidelines.”

With regard to the fact that there are no more cases in Japan, this visit has helped me to think about how we can deal with the future scenario of post-elimination. The situation in Japan is very similar to Portugal, where I have done research on foreign-born cases. What is difficult is to find strategies to ensure high-quality medical care for persons that experience what is now a rare disease—and we know that rare diseases always come with issues with regard to access to healthcare. The visit has helped me to think about possible strategies, which I will need to think about more and develop in the report, and I’m happy with that too.

Your three-year mandate concludes this year. Can you tell us what you plan for your final report?

I want to leave states, national human rights institutions, civil society organizations and intergovernmental agencies with a concrete policy framework for rights-based action plans to eliminate Hansen’s disease-related discrimination. Actually, that is the title of my last report, which will be presented to the Human Rights Council in June. The need for this kind of framework is put forward by the Principles and Guidelines as one of the states’ obligations. Having identified substantive discrimination—material inequality and discriminatory practices and attitudes—as the leading cause of discrimination, I want to present states with a comprehensive multisectoral policy framework to guide their work in implementing the Principles and Guidelines.


NO.100 PDF

My Journey Continues
Special Interview I:
Our Goal Is Not Yet in Sight, Yohei Sasakawa, Goodwill Ambassador

Reviewing developments in leprosy over the course of 100 issues of the newsletter
Special Interview II:
Encouraging Signs, Alice Cruz, UN Special Rapporteur on leprosy

Leprosy and COVID-19
From the Editor