Alice Cruz is the UN Special Rapporteur on the elimination of discrimination against persons affected by leprosy and their family members. The Human Rights Council appointed her to lead this mandate on 1 November 2017. Before that Alice worked as External Professor at the Law School of University Andina Simón Bolívar, Ecuador. She has worked with the Brazilian non-profit organisation Movement for the Reintegration of Persons Affected by Hansen disease (MORHAN) and has served as a member of the International Leprosy Association’s Council (2014-2016). Alice has researched and written on the subject of eliminating leprosy and the stigma attached to it since the beginning of her career.
As a Special Rapporteur, Alice’s job is to defend the Universal Declaration of Human Rights. The articles that she speaks to specifically include:
- Article 21: Everyone has the right to take part in the government of his country, directly or through freely chosen representatives.
- Article 25: Everyone has the right to a standard of living adequate for the health and well-being of himself and of his family, including food, clothing, housing and medical care and necessary social services, and the right to security in the event of unemployment, sickness, disability, widowhood, old age or other lack of livelihood in circumstances beyond his control.
- Article 12: No one shall be subjected to arbitrary interference with his privacy, family, home or correspondence, nor to attacks upon his honour and reputation. Everyone has the right to the protection of the law against such interference or attacks.
- Article 5: No one shall be subjected to torture or to cruel, inhuman or degrading treatment or punishment.
Now that you’ve been in the position as Special Rapporteur for a few years are you starting to see trends emerge?
Well, it’s a bit soon to be seeing trends emerge. During the preparation of the 2019 report with the consultation I made and also the conversations I had with different stakeholders, I saw that people started questioning themselves about the importance of giving more attention to gender differences with regard to discrimination. I think this is an ongoing process. I realised when I started preparing the report that even though people talk about gender discrimination, in practice there are not many strategies for addressing the fact that women suffer more discrimination then men. It’s a bit like conversations on human rights. Many times, these words are employed as a token and without real sensitivity, approach and strategy. So, it was good, the conversation that started with the preparation of the report and the interactive dialogue at the Human Rights Council.
I think the reception of the 2019 report at the Human Rights Council was very good and hopefully the message will pass well. I was hoping that the report could be taken seriously, especially by the leprosy community. We need to develop substantive strategies on how to have a human rights approach accepted around leprosy. So that’s what I’m hoping to see.
Do you find that getting the leprosy community to look through a human rights lens has been hard?
We need to go beyond using human rights as a token. In that sense, yes, because it’s very easy to talk about what you don’t know. I feel that the leprosy community is still not prepared to engage with human rights. The two main traditions in the leprosy community have been charity and the medical approach. Human rights really is a different approach. And so I think that sometimes human rights is mistaken with the charity approach. That’s not very helpful, because the human rights approach is really to acknowledge that a person affected by leprosy must be at the centre of any process. What we really need to do is everything possible to ensure that persons affected enjoy citizenship in equal terms with other persons. Human rights is there at the discourse, but, from my point of view, it is not really yet substantiated in the strategies or approaches, the methods of work. I think we still have a long way to go with regard to having a strong and robust human rights approach to leprosy.
What would this approach look like to you?
The most important step would really be to recognise persons affected by leprosy as subjects of rights. In that sense to bring them into the conversation. I still don’t see that. We have as a model – at UN AIDS – in which there are persons affected on the board of UN AIDS and they have a lot of different strategies at different levels to tackle discrimination. That, for instance, would be something quite important for leprosy.
Again, I think that another problem is that we do not know enough about people affected by leprosy, their profile and their needs. They have very basic needs that need to be fulfilled. Some organisations on the ground are doing that very well, but it’s still not a State policy. Of course, we need to address the problem of transmission and medical care. But, it would be quite important engage other sectors of governance like work, education, social security in the implementation of a human rights approach to leprosy.
Why do you think that reducing stigma and discrimination is important towards stopping transmission and preventing disabilities?
We must stop looking at discrimination and stigma solely as a social determinant of transmission and physical impairments. It is important to acknowledge that stigma and discrimination are major barriers to wellbeing, to health. But reducing stigma and discrimination should be a goal on its own. In order to really have a very robust human rights approach to leprosy, we need to look at zero stigma and discrimination as something that we must achieve even if there is no transmission, even if there is no physical impairments and disability. Understand that true inclusion cannot only be a means to another end, it must be an end in itself.
But going back to the question, of course discrimination is a major barrier in different ways. We need to keep on looking at stigma as something that makes people hide the disease, avoid the medical services – that happens of course. But discrimination is also what makes people have very few resources to sometimes take the public transportation to go to the health facilities. There is an economic dimension to discrimination that also needs to be taken into consideration. With regards to persons affected by leprosy it really has a very big impact on their access to health and on prevention.
I think we need to address issues of stigmatisation, such as harmful traditional beliefs and practices that, as you can see in my report, are still very much alive. We need to do something with regard to that, in terms of effective awareness raising. But we also need to look at the social and economic dimensions that keep persons affected by leprosy excluded from mainstream and with very limited access to the services of the state, like health and education. That is also discrimination.
I think another dimension that is also important is that persons affected by leprosy have limited access to justice, and usually access to justice is very important to ensure that people get to enjoy full citizenship.
What small changes are you looking to see before your next report is due?
I think we’re still at the stage of awareness raising, so I cannot expect more than that at this point. I had been working really hard to raise awareness about leprosy within the Human Rights Council. Hopefully the changes I’m making at the Human Rights Council can have some impact on national governments. Also, I hope that the leprosy community itself engages more and more with human rights.
Do you feel that there has been a shift in the Human Rights Council?
Yes, for sure. When I started leprosy was only seen as a health issue that had no place at the Human Rights Council, that should only be addressed by the World Health Organization. There was a strong opposition to the creation of this mandate because of this. Most states thought this mandate was overlapping with others, such as health and disability and that it just didn’t make any sense to waste resources on a mandate that is dedicated to this.
Now that is not the view of the majority. I was very happy with the feedback I received from Member States and I was even more happy to see that states had made a very positive statement about the importance of developing the human rights approach to leprosy. So, yes, at the Human Rights Council I can say that I am seeing a very positive change.
What would you like to see NGOs working within the leprosy world do?
Well, I would like to see them changing their relationships, not only with persons affected by leprosy, but also with existing organisations of persons affected by leprosy. There are not many, but there are some. The important focus I would like to see is a work relationship between ILEP Members and these organisations. I would like to see ILEP Members regarding these organisations as priority partners. I still don’t see that. I would also like, again, that persons affected by leprosy participate in a structural change towards inclusion and wellbeing. From my point of view consultation is important, but consultation for me is not the same as participation.
When you took on this role, what was the big change the one big thing that you really wanted to see happening?
Well, it is important to see change at the legal level of course. It is important to see all those discriminatory laws eliminated. But more than that would be to see countries create affirmative measures. That would be something that I would be very happy to see. They can be temporary, they don’t need to last forever, but it would be important to try to tackle the historical and systemic disadvantage of persons affected with measures that can guarantee equal opportunities, as well as equal outcomes. So, I would like to see the creation of affirmative measures in important countries for leprosy.
But mostly I would like to see some change in the way people look at leprosy. We need to change the narrative around leprosy. We need to see people affected being acknowledged and respected and included like in any other disease. I am very much aware that I will not get to see that happen while I’m in this role.
What do we do about personal prejudice?
One thing that we know that works very well is the participation of persons affected at the community level, and national level, because the only way of changing personal prejudice is to interact with people that are discriminated. When you get to know the people you discriminate against and you see that that person is more similar to you than different, your prejudice starts to fall apart. So, we need to bring persons affected by leprosy into mainstream society and at all levels of society. That is why participation is very important at health services, at the community level, in awareness raising campaigns and decision-making processes at the national level.
What development or progress are you most excited about?
That’s a hard question for me to address this point, because at this point I’m much more focussed on the different barriers to development or progress. How do we overcome those barriers? I would say that the development that I am more excited about is to see the emergence of new leadership of persons affected by leprosy at the global level. I see a new generation coming up that has a very strong sense of their rights and I’m putting all my hopes on them.
**Conversation was edited for publication**