The day I changed my name
Hansen's disease and Stigma
by Patrícia Deps
The day I changed my name: Hansen's disease and stigma tells the saga of people with Hansen's disease in Brazil during the twentieth century, when colony hospitals were built to segregate the sick. The book shows what life was like for people who lived in Pedro Fontes Colony. It portrays the remarkable moments in the lives of these socially excluded people who had to change their names to escape prejudice. Through a dynamic structure, containing texts, biographies and images, this book invites the reader to reflect on the power of information and knowledge as strategies to reduce the stigma and prejudice of an ancient disease that is curable. It presents the transforming action of humanized medicine, with a focus on the sick, the one who suffers, and not only on the disease.
The book portrays the lives of people who were compulsorily hospitalized and suffered from health policy in Brazil to control this disease. Such actions mirror the forms of segregation that have occurred in several endemic countries as a means of combating Hansen's disease.
For this story to be told, the authors of this book entered the limits of the colony hospital and related to the residents and the few employees who were there. They found people physically and emotionally fragile, elderly, and with mobility difficulties. Gradually they understood that, in order to get to know them better and also their situation, it was necessary to give them a voice. They decided to interview them. The choice of people to be interviewed occurred at random, respecting the existing limitations and the residents' availability for a conversation. Ethical issues were respected and duly authorized by the characters in this book. Most interviewees asked that they be portrayed as winners in the fight against Hansen's disease, against the difficulties of life that they had, mainly poverty, isolation and prejudice.
Even today, many people believe that Hansen's disease contracts by eventually touching individuals affected by the disease. This belief, if not undone, generates fear among people, who start to avoid the same places where those affected by Hansen's disease circulate. This discriminatory attitude has a negative psychosocial consequence, because even after being cured, the fear of being rejected in society, in public or private places, remains. Thus, keeping the focus on people who have suffered and still suffer from Hansen's disease, the information acquired in this book, by spreading and improving knowledge about the disease, will boost actions that reduce discrimination against these people in society.
The fate of the Hospital Colônia Pedro Fontes has been discussed for some years. There are also social movements throughout Brazil concerned with protecting the area as a historical and architectural heritage of the country.
Dilemmas presented as the compulsory hospitalization of people affected by Hansen's disease; their distance from their children; the form of resocialization of inmates; the stigma about the patient; changing the name of a disease; the search for dignity; the social and human rights of fragile groups; the preservation of the history of sanitary policy in Espírito Santo and of the material and immaterial cultural heritage - to know all this better is to know better the society in which we live, its contradictions and its problems, its people. It is also getting to know ourselves. Assume a political, sociocultural and human responsibility that cannot be avoided.
It is a book with 168 pages, black and white photos, bilingual Portuguese and English. The book is organized in three parts: There are three introductory chapters; Biographies, of nine characters; and Essays, with three more chapters. It was classified as Testimony Literature, Biography and Historiography is aimed mainly at the general public, but covers areas such as Medicine and other areas of health, Medical Anthropology, Sociology, Anthropology, History of Medicine, History, Human Rights, Public Health, Photography.
DEPS PD (Org.). Editor CHARLIER P. The day I changed my name: Hansen’s disease and stigma. Éditions de Boccard, 164p. 2019. 1eme Édition. Paris, França. Bilingue Port/Inglês. (ISBN 978-2-7018-0590-0).
Charlier P, Cymès M, Deo S. It’s time to rename some diseases: Wing syndrome rather than Asperger’s, and no more leprosy but Hansen’s disease. Ethics, Medicine and Public Health (2020)13, 100488. Doi: 10.1016/j.jemep.2020.100488.
Organizer and author
Patrícia D. Deps is a dermatology and Hansen’s disease specialist. Master and doctor in medicine and post-doctorate in the United Kingdom and France. She is Full Professor at the Federal University of Espírito Santo, Vitória-ES, Brazil.
Tadeu Bianconi is a photographer and journalist. He has 15 books published on photographs.
Adilson Vilaça is a journalist, writer and university professor. Specialist in Political History. Master in Letters / Literature. Member of the Historical and Geographic Institute of ES. Author of more than 40 titles - in 2000 he received the “Almeida Cousin” Award for the work as a whole.
Henrique Antônio Valadares Costa is a historian and archaeologist. Master and PhD. Technical Scientific Director of the Institute of Archaeological and Ethnographic Research - Adam Orssich (IPAE). Co-coordinator of the UFES Archeology Study Group (GEA-UFES). He directs the Archeology Section of the Historical and Geographic Institute of Espírito Santo (IHGES).
Rachel Bertolani from Espírito Santo is a dermatologist, master and PhD student in Infectious Diseases. She is a Professor at Dermatology at Multivix, Vitória-ES, Brazil.
Luciana Rabelo Quintela Iunes Araújo is a physiotherapist, Vitória-ES, Brazil.
Dora Martins Cypreste is a writer, social worker, specialist in collective health. She’s a former director of the Hospital Colônia Pedro Fontes.
Larissa Carvalho Caser, Libya Ataíde Mendes, Brunella de Azeredo Freitas, Marianna Moura Siqueira and Cícero Dufrayer Chicon, are physicians.
Francisco Merçon has a degree in Literature, a MSc and PhD in Semiotics from the University of São Paulo. Professor at the Collegiate of Letters, Faculty of Philosophy, Sciences and Letters. Alegre-ES, Brazil. He is also a researcher member of the Research Group “Studies on Samuel Beckett”, at the University of São Paulo.
Alistair MacDougall revised the English translation. He grew up and was educated in Scotland. Courses in Effective Leadership. He specializes in banking and financial regulation in the UK and has written extensively for online and paper publications.
Tadeu Bianconi, P. Deps and Francisco S. Merçon, Galeria Mosaico, October 2018.
P. Deps and Alistair MacDougall, Paris, in February 2019.
P. Deps and Manoel Catarina - Presentation of the book “The Day I Changed My Name” to the inmates at Hospital Colônia Pedro Fontes, in September 2019 (Photo: T. Bianconi).
P. Deps and M. Catarina. Presentation of the book “The Day I Changed My name” at Hospital Colônia Pedro Fontes (Photo: T. Bianconi).