The Leprosy Brand

by Faustino Pinto

Vice-Coordenador Nacional do MORHAN – Movimento de reintegração das Pessoas Atingidas pela Hanseníase

Before being known for a pathology, I was born and baptized by the name of Francisco Faustino Pinto and remained so until I was 18 years old. At that moment I got a new name when I was first diagnosed with Hansen's disease. They called me a leper.

I realized that I was just another number in a medical record in that health clinic.

As I walked through the doors of that clinic, I had the impression that I was going through a ritual of death in life, something that was striking in the 15th century, but it was 1989. When I first heard the word Hansen’s disease, it didn't look bad to me. The doctor who first suspected I had this disease delivered me objective information about it and I understood. When I went to other health service, I could already understand what the condition meant, and that I should take the medicines and take the necessary care to be cured. I had all the information I needed without feeling fear.

They referred me to a nurse who would give me the good and bad news. She asked me a question and before I say anything, she answered it: “Do you know what Hansen's disease is? It's leprosy” I didn't understand why she brought me such additional information. An attitude that seemed intended to intimidate me, an abusive attempt to make me regret what was happening to me, that brief action translated my place in society from that moment on.

What came next terrified me. That health professional followed with what she thought was a quality humanitarian care. She said: “You can not stop taking the medicines, can not miss the appointments or abandon the treatment, because you can be deformed, this disease makes your body falls apart". In fact, such information was important for my treatment, but in that context, it was not the right way to say it

That day had started in a great joy for me because I finally got my diagnosis after a nine-year pilgrimage in which I went through many doctors and different treatments without never getting it corrected. I finally new what was my condition.[GM1] But my relief and joy turned into something scary, a nightmare, in a matter of hours. My diagnosis of Hansen's disease, which finally enlightened me about my condition moments before, turned out to be bizarre, a glimpse of a life without many prospects. This is the destructive power of a single word, Leprosy, a devastating power in an individual's life. I know reports where people just by listening to this word have panicked, became depressed or isolated themselves.

I remember a very remarkable episode when I could not go to the clinic to get my medicines because I was sick home and I asked my mother to go there for me. When my mother arrived there, she could not remember the name of the disease. Given that I have nasal septum deviation and back then my nose used to bleed often, my mother just said to the health professionals “I came to get my son’s medication, he has a nose problem”. Their answer to my mother was sharp and cruel. "It is not about his nose, what your son has is leprosy." There were several other people waiting there that day and my mother got very embarrassed when they said it out loud. It seemed like the health professionals had a huge need to shout the word LEPRA so loudly as to manage to make my mother come home very sad.

To speak about Leprosy is to restrict our lives to a cruel past that insists on surrounding us, to speak of exclusion, confinement, of separated families and broken lives, to live attached to old books and quotations that are absurd nowadays. In other words, relying on the term “leprosy” seems to be a very strong attachment to the past[GM2] . Some people justify the use of the term leprosy by suggesting that the general population do not understand the term Hansen's disease or by suggesting that the term Hansen’s disease diminishes the importance of the disease.

I disagree with all these statements. Life is an eternal learning, so community members can learn and learn again and again. What we need is professionals who have empathy for the pain of the people affected by Hansen's disease, who take time to help building their understanding regarding the disease. The term Hansen's disease, if accompanied by detailed information about the disease, does not diminish the importance of the damage caused by the disease. Otherwise, the term Leprosy, even if it comes with the best of the intentions, it can cause as much damage as the disease itself since this term relates and carries a set of outdated information – actually, a set of misinformation related with the meanings it used to have[GM3] .

Some people say that we should use the term leprosy because it is biblical, and that we should follow what God has taught us. So, do we have no sinners in this room? I invite you to take a sin table test, each item worth five points. Let’s see how many points you are goona get. According to the Bible, it is a sin:

Working on Saturdays - Exodus 31:15

Having a tattoo - Leviticus 19:28

Cutting hair / shaving - Leviticus 19:27

Sex Before Marriage - Deuteronomy 22:30

Eating Pork - Leviticus 11:17

Get divorced - Mark 10: 7

Women talk without permission their husband permission - Timothy 2:12

Wear clothes of different fabrics - Leviticus 19:19

Eating seafood - Leviticus 11:10

Calm down, it was just a joke, nobody here is going to hell because of it. The point here is the fact that these prohibitions no longer make sense in our society. In the same line, I do not see any point in referring to a disease using an outdated terminology from a dead language ...

To agree with the term Leprosy as if it means disease is to accept the weight of its meanings in one’s life, to declare oneself unclean, to admit that being hit by hansen's disease was the result of divine disobedience, one's sins, one's failings as a human being. As if someone take the world’s pain to himself/herself, while in fact he/she has only been a victim of neglect. The neglect of the public sector that should provide care and strengthen public health. The neglect as a result of hunger, misery, governments that make us invisible, that make us ask the Gods to look at us since men forget about us.

In the Bible, the term Leprosy means dirt, peeling, divine punishment, addictions, impurity, rot, and other synonyms that do not apply to Hansen's disease. Because of this, in 1976, the doctor and professor of dermatology of the São Paulo School of Medicine Abrahão Rothenberg proposed the change of the terminology from leprosy to hansen's disease in Brazil. There was a strong resistance to the new nomenclature from health professionals. However, there was no resistance from the general population as there is not until the present day. In 1995, with the support of MORHAN - Movement for the Reintegration of People Affected by Hansen’s disease, the Brazilian President Fernando Henrique Cardoso signed a federal Law 9010, which prohibited the use of the term leprosy to refer to Hansen’s disease.

Since this law was signed, it began a hard and continuous process of reeducation of the population. Unfortunately, we still have resistance to this nomenclature in some fields, and it still causes us astonishment when the resistance comes from health professionals, who insist on the culture of fear as a treatment adherence. They seem to be attached to this word which does not communicate the disease’s symptoms and signs. I understand that changing is not easy and it requires reflection, time and willingness to change. But we need to change. It's been over 2000 years and a lot has changed, we work on Saturdays, we have tattoos, we frequently get a new haircut, we shave, we have premarital sex, we eat pork, we get divorce, women don't ask permission to their husbands to talk, we wear clothes of different fabrics and colors, we eat seafood. So, if all these has changed, why we still insist in using this terminology, this dead language, this ancient book that marks you, discriminates you and excludes you from society? There is no dignity in the term leprosy, there is no beauty. Please, [GM4] reflect about it and free yourself from this linguistic prison, allow yourself, open your mind, let it go, it is inevitable ... The new always comes.

About the author

Francisco Faustino Pinto

Vice-Coordinator from MORHAN – The Movement for the Reintegration of the people affected by Hansen’s disease

LGBTQI+ activist

Creator at Vozes Coloridas Channel