Opinion by Mathias Duck, Global Advocacy Lead at The Leprosy Mission International
We are very fortunate in the leprosy world to have the weight of a UN Special Rapporteur behind us. In 2017, the Human Rights Council established the mandate of the Special Rapporteur on the elimination of discrimination against persons affected by leprosy and their family members.
Since then, Alice Cruz has been a tireless ambassador for the work of our sector. Her regular thematic reports to the Human Rights Council, as well as her report to the General Assembly, her country reports, and her statements and interventions, have helped to bring much-needed attention to the issue of leprosy.
Alice visits the Brazilian Bar Association during her official country visit
After the initial three-years, Alice’s mandate was renewed for a further three years in 2020. Because Alice has been so present throughout her mandate and because she has engaged so well with organisations of persons affected by leprosy and leprosy NGOs, it can be easy to feel as though her role as a Special Rapporteur has always been an ever-present and will continue to be.
Unfortunately, we cannot take that for granted. In 2020, Alice’s mandate nearly came to an end, as some Members of the Human Rights Council felt that leprosy was not an issue that warrants the attentions of the UN’s special procedures. We were fortunate in 2020 to have had the interventions of some key Members of the Council, such as Japan and Brazil. Thanks to them, we continue to have a Special Rapporteur who focuses on leprosy.
However, we cannot guarantee we will be so fortunate in 2023, when the mandate is up for renewal once more. It is very possible that the mandate of the Special Rapporteur on leprosy will be closed after next year. We can hope that won’t happen and we can lobby the Human Rights Council to continue the mandate, but we must also make the most of the mandate while we can be sure it still exists.
At this point, I think it’s important to draw a distinction between Alice Cruz and the mandate.
Long before she was a UN Special Rapporteur, Alice was a part of this sector and an advocate for the rights of persons affected by leprosy. I also have no doubt that Alice will remain an advocate long after her mandate ends, whenever that may be. And, of course, the voice of a former UN Special Rapporteur still carries weight, even if the mandate has closed or moved on to someone new.
The distinction between Alice Cruz and the mandate is the power that the mandate holds. The soft-power of a mandate on leprosy gives this sector unprecedented opportunities to hold governments accountable for their actions.
In the last issue of The Leprosy News, we asked you what you thought was the single most important key to achieving zero leprosy transmission. The runaway answer was ‘increased government ownership’. Meanwhile, at the recent ILEP Conference, we heard from actors across the sector of the need to increase government ownership.
The power of this mandate is an opportunity to secure this increased government ownership – of transmission, of disability, of discrimination – that we may never have again.
Alice visits a former leprosy colony in State of Rio de Janeiro
Before we get into the details of where a Special Rapporteur’s power lies, it’s important to note that the very existence of a mandate sends a message to governments.
There are currently only 41 Special Rapporteurs who focus on a specific theme (as well as eight that focus on countries and five working groups). The thematic mandates focus on key human rights issues, such as housing, food, the environment, freedom of religion, privacy, disability, and violence against women.
The fact that the Human Rights Council has commissioned a Special Rapporteur to focus specifically on leprosy sends an important message about how seriously governments should take the issue.
Government officials will assign new meaning to their understanding of leprosy when they recognise that leprosy is a cause of such injustice that it warrants the attentions of a UN Special Rapporteur.
Alice at the Ministry of Foreign Affairs in Tokyo during her official Country Visit to Japan
If you want to feel jaded about the UN's potential to make change as a body predicated on soft-power, then I think that is understandable. The challenge for our sector is that UN soft-power works best when it is followed up by action on the ground. Rather than allow ourselves to feel jaded, we have to seize opportunities.
The UN’s guide to following up on UN Human Rights recommendations gives some good examples of how to do this, including the following example of a country visit to Mauritania:
In January 2013, the Special Rapporteur on contemporary forms of slavery participated in a follow-up workshop on the implementation of her recommendations made after her country visit to Mauritania.
Government officials and CSOs attending the workshop developed a roadmap for the implementation of the recommendations made by the Special Rapporteur. OHCHR’s office in Mauritania has worked with CSOs to encourage the Government to formally adopt and implement the roadmap.
Alice’s mandate has power because she has been authorised by the UN as an expert on the rights of persons affected by leprosy, but this mandate has more power if we, as civil society actors, follow up on her recommendations.
Firstly, we should make Alice’s recommendations a key part of our advocacy strategies. Alice will report to the Human Rights Council and the General Assembly this year and next year. Those thematic reports will highlight key issues and make recommendations based on her research among persons affected by leprosy, NGOs, and other experts.
Because Alice’s reports are based on this research, her recommendations should match our advocacy goals well. When we talk to governments, we should not do so only on our own authority, but with the authority of a UN Special Rapporteur’s recommendations.
After Alice has presented her reports at the UN, it should be goal of ILEP Members and organisations of persons affected by leprosy to visit policymakers, to present Alice’s recommendations, to highlight their relevance to our own contexts, and to develop roadmaps for addressing the recommendations.
Of course, it goes without saying that we should all be doing what we can to contribute to Alice’s reports when she makes requests for contributions!
Secondly, those of us who feel able to do so should encourage our governments to invite Alice for a country visit. Special Rapporteurs can only make an official country visit if they have received an invitation from the country’s government.
It has been a mixed blessing that so much of Alice’s mandate has happened during the pandemic. On the one hand, at an hour of real need she has been able to draw attention to the immense pressures that the pandemic has placed on already vulnerable people. On other hand, it has not been possible for Alice to conduct country visits.
Prior to the pandemic, Alice conducted visits to Brazil and Japan and produced reports following those visits. The next two years are an opportunity to invite Alice to more country visits so that she can investigate the human rights situation of persons affected by leprosy and their family members, highlight human rights abuses, and make recommendations based on what she learns during her visits.
As we have seen with the example from Mauritania, it then falls to us as civil society actors to take advantage of the reports that follow these country visits.
A visit by a Special Rapporteur to their country will focus policymakers’ attention on leprosy in a way that is unlikely to happen at any other time. If we believe government ownership is the key to a world without leprosy, we have to see the visit of a Special Rapporteur as a window of opportunity to push governments towards a renewed sense of ownership.
Like our counterparts in Mauritania, if we are to have the privilege of an official state visit by Alice, we must be organised both prior to the visit and in its aftermath. We should ensure Alice has the opportunity to meet with persons affected by leprosy and be introduced to contexts where human rights are not being met. We should identify and invite relevant policymakers from across political parties to be involved in the discussion, and we should leverage these relationships in the aftermath of Alice’s country report so that her work stands a chance of achieving real change.
As I said at the beginning of this piece, we can hope this mandate remains in place for a long time to come and we can lobby the Human Rights Council so that this may be so, but we must seize the opportunity to have the weight of a Special Rapporteur behind us in our advocacy.
I don’t want us to look back on this period of 2017-2023 and wish we had done more to drive forward the rights of persons affected by leprosy through this mandate.
