This is the question that underpins the conversation with Dr Beatriz Miranda-Galarza, Special Rapporteur on the elimination of discrimination against persons affected by leprosy (Hansen’s disease) and their family members, whose research exposes the invisible layers of oppression weighing on women affected by leprosy.
«The first thing that catches my attention,» says Beatriz, «is that many women are unaware that their rights being being violated by assuming the role of caregivers even though they are ill.» This lack of consciousness does not stem from resignation, but from the absence of spaces for discussion and information. In many contexts, care becomes a self-imposed burden, normalised under the belief that being a woman implies watching over others—even at the expense of one’s own health.
Between stigma and silent resistance
The stigma surrounding leprosy is usually represented by passivity, as if the affected persons were victims with no agency to take action. However, Dr Beatriz Miranda-Galarza insists on looking beyond victimisation to discover the multiple forms of resistance that emerge even in the most oppressive contexts.
One of the testimonies that left the deepest impression on her was that of a woman in Nepal who, after being ostracised by her community, because the disease affected her mother, father, and her, decided to leave her village to rebuild her life. «I had two options,» the woman said. «Stay and let myself be destroyed or go out and fight.» Beatriz emphasises that this decision was possible because the woman had participated in community meetings, where she was able to understand that the experience she was living through was not inevitable, but a consequence of the social structures that surrounded her.
In Brazil, another woman found a subtle strategy of resistance. After completing her medical treatment, she began inventing follow-up appointments to leave her home and escape—even if it was for a few days—from the violence of her husband. «These small acts are strategies of resistance,» says Beatriz, «invisible forms of survival that allow women to imagine other possibilities of life».
Demedicalise to humanise
One of the greatest challenges faced by women affected by leprosy is that their condition continues to be addressed exclusively from a medical perspective, reducing their lives to diseased bodies. «Leprosy is not just a health problem,» affirms Beatriz, «it’s primarily a human rights issue». This medicalised approach has served to justify social exclusion, but also to limit the scope of public policies that should protect those affected.
Demedicalisation does not imply denying the importance of health access but broadening the perspective to recognise women as citizens with economic, social, and political rights. Countries like Brazil have made progress by integrating leprosy care into their social protection systems guaranteeing not only medical treatment, but also improving the protection of the political and social rights of those affected.
When the state stops looking: the fight for citizenship
Paradoxically, the misinterpretation of the WHO’s 1991 resolution to eliminate leprosy as a public health problem has also had negative effects on the lives of those affected. The decline in reported cases has served as an excuse for states to stop being accountable and to reduce investments in support policies. «The state changes because there is pressure, not because it is good,» Beatriz emphasises.
The recognition of women affected by leprosy as citizens worthy of rights will only be possible if social movements manage to break the isolation and weave alliances with other collectives. In countries like Senegal, the creation of community networks has allowed affected individuals to engage in dialogue with the government to monitor the implementation of public policies. These experiences show that the struggle for full citizenship cannot be fought in solitude—it requires collective action.
