Leprosy in Colombia: A look from life experience

Abstract

Leprosy continues to be stigmatized, causing harm to fundamental rights, pain and hopelessness in those who have suffered from it and their families. From its relationship with public and mental health, effective strategies must be implemented to reduce stigma and unlearn myths and wrong perceptions, support families, and improve quality of life through early care and detection. This article shows that those affected by leprosy are capable, functional people with much to contribute to society anywhere in the world.

Background

The History of Leprosy in Colombia

History reveals that Europeans introduced leprosy to the Caribbean and the Americas when they crossed the Atlantic Ocean at the end of the fifteenth century. In Colombia, confinement, isolation and relief were the only mechanisms used by the state and the Catholic Church to cure and avoid the spread of leprosy. However, little by little, the disease became a public health problem for which two more lazarettos (leprosarium) were created. The first in the year 1861, called Contratación in the Santander department and the other in the year 1870, called Agua de Dios in the Cundinamarca department, where our relatives were detained. In the year 1950, the patients from Caño de Loro lazaretto were moved to Agua de Dios and Contratación. Subsequently the facilities at Caño de Loro lazaretto were bombed to eliminate any trace of leprosy in the area of Cartagena de Indias.

Contracting leprosy in the era of the lazarettos of Colombia meant facing up to acceptance that one was dead in life. Leprosy meant separating from the society to which one belonged and saying goodbye to family and friends in an obligatory and abrupt manner. Goodbyes were common at the Bridge of Sighs border between the towns of Agua de Dios and Tocaima—a place known as the bridge of pain. The afflicted person would not be considered a common citizen, their civil rights were taken away and denied, and the lazarettos would become their only refuge. The economic sustainability of these places depended on social assistance, largely from Christian charity campaigns. The public charity board also made a contribution using money from the government's tax collection.

In the specific case of the Agua de Dios y Contratación lazarettos, some photographic evidence, remnants of infrastructure, and narration by our relatives, friends and previous residents, describe those places during that era as resembling a prison camp. They were surrounded by barbed wire and guarded by check points. They created their own currency, popularly called ‘la coscoja’, to prevent the spread of the disease. There were various places for disinfection, also numerous churches, a prison, a post office, asylums and hospitals for those with mental health conditions. The lazaretto institutions were abolished in Colombia in 1961, so these two territories acquired the constitution of municipalities, taking the name of Municipios y Sanatorios ESE that we know today.

During the era that the authors were born, 1962 (PDA) and 1985 (JAUM), Agua de Dios y Contratación were experiencing a transition from lazaretto to municipality and sanatorium. They were mainly inhabited by people with leprosy, their descendants and relatives, those who lived in society with religious communities of Christian faith, officials of the national government and public health workers. Several buildings that had been hospitals for people with leprosy had been converted into schools where we received education in different trades. Those affected by leprosy received a financial subsidy from the government to cover part of their basic expenses.

Within this paper, we contribute from our own perspective and life experience as people affected by leprosy. We are second and third generation and in the case of one author (JAUM), as a professional in the area of psychology. We have also been involved in addressing stigma and social work in the Agua de Dios sanatorium and in activities that preserve the history of leprosy and the places known as lazarettos in Colombia.

A Contribution from Life Experience

Personally, I have overcome the stigma associated with leprosy by gaining knowledge about the disease, its history, and its public management policies. Knowledge that I have mainly acquired from my own life story, the life story of my mother and my grandmothers who, because they were carriers of the disease, had to live in lazarettos as victims of social stigma, as well as the life stories of other relatives and friends with whom I lived. The theory of contagiousness is debatable and/or does not apply in the community where I was born. I was not infected with leprosy even though my mother breastfed me without having received treatment for her disease, so I never felt like a special or different person for having been born to her in the Agua de Dios lazaretto. I have always tried to understand myself and value myself positively.

Likewise, being born into conditions of poverty does not devalue me, it is this condition that allows me to value everything that I am achieving at each stage of my life. Although my mother had physical limitations due to not having received timely treatment for leprosy, I never saw her as weak and incapable or different from what she represented to me: a mother. She tried to play her role well, despite all her limitations even without having had the possibility of receiving treatment for her emotional afflictions.

The stigma associated with leprosy is something that has been socially imposed on us for the benefit of strengthening interests of a society fearful of leprosy contagion. Leprosy still exists, and social prejudices and fears remain and will continue to exist. Those of us affected by leprosy who have decided to include ourselves and participate actively in society must also accept that within this society we will be exposed to prejudice, judgement and fear. Knowledge and self-worth are fundamental, they are the key to eliminating stigmas and overcoming the effects of social prejudice.

Stigma, Mental Health and Leprosy in Colombia: A Look from Life History

Leprosy in Colombia has, historically, been situated alongside an unfavourable biomedical approach to mental disorder or psychiatric illness. At the time of the lazarettos, their population suffered from the loss of their civil rights resulting from discrimination, confinement, isolation, segregation and the forced interruption of daily activities. This abrupt separation of their family nuclei and social world without a doubt led to mental distress. Situations sometimes reached the level of mental health conditions that affected the state of mind, thought and human behaviour, evidencing responses such as hopelessness, depression, anxiety and stress. Lazarettos were not only expressions of discrimination by civil society and the community, but also by the national government and its medical community. Perhaps due to the deficit of worldwide scientific evidence and lack of medical advances in the diagnosis, treatment and knowledge of leprosy at the time, some health professionals considered it to be a mental illness, to the point that (they affirm from documented and informal testimonies) they utilized electroshock tests or electroconvulsive therapy on affected persons.

Today, based on our life experiences of having been affected by leprosy, we consider that the stigma of leprosy continues to be strong in some parts of the world, including in Colombia. Leprosy is considered to be a special disease of the past, linked to experiences of isolation in lazarettos. Today, this history means many people are ashamed of their illness or of having had a family member isolated in the lazarettos. The negative portrayal of leprosy as a contagious illness of the past, and the depiction by the media of people affected by leprosy as miserable and disfigured reinforces such stigma. This deeply entrenched history of stigma towards people affected by leprosy in Colombia still causes a person who is diagnosed with leprosy to assume or internalize all the preconceptions and irrational ideas loaded with myths, superstition, fear and badly told stories. Each person affected by leprosy assumes, faces and copes with the disease from different circumstances, which depend on factors such as their value scheme, level of self-esteem and life history, configured in turn, by thinking styles, personality traits, cognitive processes, and interaction with other people in society. Intervening to support affected persons must, therefore, be done from an interdisciplinary perspective (psychology, social work, nutrition, psychiatry, occupational therapy, among others). This would provide comprehensive support to each person affected in their psychological process, from the identification and diagnosis phase, to the treatment and post-treatment phase.

Where Should We Go from Here?

We believe that the first step in tackling this deeply rooted stigma is to begin with the basic assertion that people affected by leprosy should be understood as subjects with rights, and equal to the rest of the world's inhabitants. In the same way, irrational, harmful ideas related to myths and legends about the disease must be unlearned, and the continued production of this information ceased over time. Governments must design a specific public policy to support the mental wellbeing of people affected by leprosy; within this framework a solid, technical programme should be created, aimed at preventing and eradicating the stigmatization of leprosy. This should include dissemination in the mass media of general information about the disease, its stages, phases, treatment, characteristics, and a module for confronting true information versus myths, fears and prejudice about leprosy. Early detection of new cases should also be initiated to reduce disease progression and the negative impact of self-stigmatization, whilst also prioritizing scientific advances in prevention prophylaxis.

Author contributions

JAUM and PDA devised the paper, wrote the paper and approved the final version.

Funding

None.

Competing interests.

None declared.

Ethical approval

None.