From the grassroots
A message to NGOs working in the leprosy (Hansen's Disease) sector from the outgoing UN Special Rapporteur on leprosy, Alice Cruz
When I was appointed the first holder of the newly created mandate of the Special Rapporteur on the elimination of discrimination against persons affected by leprosy (Hansen´s disease) and their family members six years ago, a friend told me that it was so important that someone who had been in the trenches could take on the role. By being in the trenches, he meant my engagement with a grassroot and national organization of persons affected by Hansen´s disease (MORHAN) as a volunteer for many years.
Indeed, having been at the grassroots together with persons affected by Hansen´s disease as peers in a common struggle towards the recognition and enforcement of their rights was far more important than being an academic dedicated to Hansen´s disease ever since before I graduated from the University. On the one hand, and as I say in the introduction to my PhD thesis, with persons affected by Hansen´s disease I discovered that there were key questions that I had not been able to articulate as an academic. Those questions were undoubtedly more important than the ones I had formulated and, of course, they came to determine my future research. With that, I realized the importance of, as a scholar, to unlearn the framework provided by theoretical thinking and to learn from experts by experience. On the other hand, I gained a deep sense of priorities, I learned about advocacy in action, and I was transformed as a person by sharing the spiritual bond that connects people who fight against social oppression together. So, my friend was right. Having been in the trenches determined my approach throughout my mandate as Special Rapporteur. And I should add that that was precisely what kept me focused on delivering something that was aligned with people´s wishes and needs, as well as what kept me strong as I relied on that very same spiritual bond as my main source of energy, especially in challenging moments, of which there were quite a few.
I am mentioning all this here, because I believe that individuals working in the Hansen´s disease sector should make every effort to come down to the grassroots and spend some time there with persons affected by Hansen’s disease and their representatives, not only as peers, but mostly as the true leaders of the Hansen´s disease sector and community. The paradigmatic shift I have been calling for over these six years – something that is urgent and glaring - can only happen if we change the way we relate to persons affected by Hansen´s disease and their representative organizations. Please note that their organizations should be acknowledged as credible institutions and approached as partners on equal terms. I also believe that the key for ending the disease lies with those same organizations and the work they can do at the national and subnational levels. We, as a community, have been relying mostly on a pharmaceuticalized approach to Hansen´s disease for nearly one century. And Hansen’s disease continues to stubbornly affect our world. Perhaps it is time to try a new approach. An approach that starts from the grassroots, puts people at the centre, empowers them and makes human rights alive and embodied in their lives.
With that in mind, allow me to refer to some specific points, which from my six years’ experience seem quite relevant in terms of what we can do better. To start with, the fact is that it was the network I was able to create with persons affected by Hansen´s disease and their representative organizations that sustained my mandate, given the fact that the Hansen´s disease sector at large was not prepared to support a Special Procedure of the Human Rights Council. And I am afraid that even though there has been undeniable progress, we probably need to dedicate more resources to a rights-based approach.
For some decades now, we have been saying that Hansen’s disease is a human rights issue. When I took on the role of Special Rapporteur, there were already some resolutions of the United Nations General Assembly and the Human Rights Council in place, including a set of principles and guidelines for eliminating discrimination on the grounds of Hansen´s disease. Notwithstanding, what I realized six years ago was that there was a very limited understanding of what Hansen´s disease as a human rights issue meant in practice. There wasn´t much evidence-informed advocacy nor rights-based campaigning with clear goals and targets. Strategic litigation was hardly employed. And the boomerang effect (through which people at the national level use international and regional mechanisms to influence national decision-makers) was poorly understood. The majority of organizations for persons affected by Hansen´s disease weren´t monitoring human rights violations nor discrimination on the grounds of Hansen´s disease in a systematic way. And international human rights law wasn´t duly referred to in the sector´s narrative about stigma and discrimination. All those strategies should be strengthened with sufficient resources if we are going to effectively engage with human rights work. I should also mention that such gaps were fulfilled by the extraordinary will of persons affected by Hansen´s disease to give life to my mandate. So, you see, coming from the grassroots mattered.
Another point I wish to raise regards the relation with governments. Again, at the grassroots, I learned the enlightening sentence from Alice Tibiriçá concerning the relation between civil society organizations working with Hansen´s disease and the government and I quote: ¨with the government, if we must; without the government, if possible; and even against the government, if needed¨. The reality of Hansen´s disease´s endemic countries (as I could personally witness) is that Non-Governmental Organizations (NGO) are not only filling the outstanding gaps left by States´ negligence and inaction, but are too often the only resource available to persons affected by Hansen´s disease for acceding healthcare, as well as socioeconomic rehabilitation and support. I am aware that in order to sustain such activities, the sector needs to take on the first principle from Alice Tibiriçá´s saying: ¨with the government, if we must¨. But that in itself is a huge limitation for claiming rights. I don´t see any way out of this crossroad but making sure that wherever an organization for persons affected by Hansen´s disease operates, it makes sure to support the creation and development of a grassroot organization of persons affected by Hansen’s disease. This should be a non-negotiable principle for all NGOs. Only then the three guiding (and in my view correct) principles of ¨with the government, if we must; without the government, if possible; and even against the government, if necessary¨, can be fulfilled. This is important because no matter how fundamental NGOs´ work may be, it will never ensure universality of access to fundamental services. Universal access can only be guaranteed by States. Hence, advocacy (which should always be evidence-informed and planed by mapping in advance not only the political and administrative landscape, but also how national policymakers apply cognitive shortcuts to information on policy problems) is of the essence if we wish to build a future where all persons affected by Hansen´s disease have equal access to healthcare, social protection and other fundamental rights and services.
And since I talking about universality (a core principle of international human rights law), there is one particular issue which I would like to see discussed by the sector. Individual cases, usually urgent and facing multiple layers of problems, came to me quite often. As Special Rapporteur I faced at least two barriers for taking action: any Special Procedure can only act if information reaches it through formal channels (and as I have said in one of my reports to the Human Rights Council, channels for sending information to the human rights system are not accessible to those furthest behind for several different reasons); acting on individual cases always puts those same individuals at risk of reappraisals. In order to remove both barriers, NGOs should be more active in: feeding the human rights system in representation of persons affected by Hansen´s disease; protecting persons affected by Hansen´s disease on the ground from possible reappraisals. Facing such barriers, I turned to NGOs for help in regard to individual cases. There I found other barriers, the most important one being the fact that NGOs’ policies many times hinder them from acting on individual cases, for reasons which can be easily understood. But still, we as a community, have a substantial gap in what concerns responding to urgent individual situations. I don´t have an answer for this, other than that if we had an international task force of persons affected by Hansen´s disease for monitoring human rights violations globally, then perhaps we could find smoother ways to respond to urgent crises without putting extremely vulnerable individuals at risk. All lives matter and time is differently experienced when you have an urgent need. At the trenches or grassroots, you learn so much and one thing you definitely learn is that time means very different things to people in suffering and to States’ administration or NGOs´ operating systems. Let us try to align our action with people´s sense of urgency.
On behalf of TLM, I want to express my most sincere gratitude to Ms Alice Cruz for helping the leprosy sector move in the direction of a human rights approach. I can say this with a lot of confidence, because this is what I have heard from persons affected globally.
At the same time, we need to keep moving and she has suggested a direction. We need to continue to strengthen organisations of persons affected by leprosy. We have been doing this, put perhaps we need to find new, creative, innovative and more decisive ways to do it. To make that possible, we (as NGOs) need to be prepared to invest the funds that are necessary to really expand and move forward in this area.
We also need to explore a way to facilitate an international task force of persons affected to monitor the Human Rights violations in our sector. Alice has 6 years of experience dealing with these issues and she suggests that this is the most sustainable way forward. Let's do it!
