National Coordinator, Movement for the Reintegration of Persons Affected by Hansen’s Disease (MORHAN)
MORHAN is a nonprofit organization and social movement in Brazil that raises awareness of Hansen’s disease as a curable disease and advocates for public policies that uphold human rights and support effective treatment.
On June 1, 2023, Brazil’s Movement for the Reintegration of Persons Affected by Hansen’s Disease (MORHAN) held a live online event to honor and say farewell to Artur Custódio, who served as our national coordinator for many years. I have been challenged to step up and take over his role. Although I am still making peace with the whirlwind of responsibilities, I also know that I am surrounded by good and competent people. I will do my best to grow as an activist and coordinate our social movement.
I received my Hansen’s disease diagnosis in 1989. At first, I thought that I had to be grateful merely for surviving, but then I started to question the cruelty that I experienced and witnessed around me in the treatment facility. I began to rebel and speak up, but I did so informally and without awareness that I might be engaging in social activism.
My life changed when I met a nurse named Marlene Barroso who was part of a supervision team from the Ministry of Health in my city. Nurse Marlene also happened to be part of MORHAN, and she responded to my barrage of questions by telling me that I have the profile of a social activist. Within months after connecting with MORHAN, I created a nucleus in the city of Juazeiro do Norte. Later, I served as state coordinator for two terms, and then I was invited to join at the national level, first as the secretary of communication and then as vice coordinator.
In 2022, I was invited by the presidents of Concurso Nacional de Beleza (CNB), Henrique Fontes and Marina Fusquine Fontes, to be part of a committee for one of their beauty pageants. Through my involvement, I saw firsthand how pageants that link beauty to purpose-driven action can be helpful to our cause. Contestants have training in public speaking, and they have connections and influence with a wide range of people.
MORHAN’s relationship with beauty pageants started in 2013 when Mariana Notarângelo, a medical student who was crowned Miss Brazil World in 2012, assisted Dr. Alicy Scavello in treating people affected by Hansen’s disease. Dr. Scavello suggested an ongoing partnership, and when Sancler Frantz was crowned Miss Brazil World 2013, she became an ambassador for Hansen’s disease in Brazil.
Over time, pageant winners began to act together with government agencies, taking petitions and speaking in public. They also started to help with fundraising and the acquisition of equipment and food kits. Media organizations started publicizing the partnerships, and our movement benefited from the attention at several key moments. Heartfelt interaction between the pageant winners and persons affected by Hansen’s disease broke prejudices on both sides.
As MORHAN’s national coordinator, my focus is on Brazil, but of course Hansen’s disease is a global issue. Cultivating relationships with pageants on an international scale holds the potential to propel the movement for the reintegration of individuals affected by Hansen’s disease worldwide. This point has been recognized by the Sasakawa Leprosy (Hansen’s Disease) Initiative. In July, I participated in the Miss Supranational Hansen’s Disease Forum, organized by the Initiative, where contestants from 65 countries learned about the disease and Sancler Frantz spoke about her decade of being part of our movement in Brazil.
The battle against prejudice, discrimination, and stigma continues daily. On behalf of MORHAN, I want to express our appreciation for pageant contestants who are eager to learn and use “the power of the crown” for the good of all.