José Ramirez has recorded his personal story for those who are newly diagnosed with leprosy as a support, companion and inspiration.

“I may be the only person to travel twice in a hearse during their life time”. This was the humorous introduction José Ramirez made to the audience gathered at the Global Appeal 2008 to End Stigma and Discrimination against People affected by Leprosy. He went on to describe in a lively manner and in more detail some of his experiences with leprosy, particularly focussing on the daily and life challenges of those who are affected by this disease. In his autobiography, the reader learns that José Ramirez only came to know that he was taken to Carville in a hearse many years after the event. It is a poignant moment in the telling of his story and, to an extent, a cathartic moment for him. 

José Ramirez was determined to learn everything he could about leprosy, about Carville, where he was admitted on 24^th February 1968 (only to be released 3,476 days later) and the history of the disease and he provides the reader with much information throughout the book. He used aspects of this knowledge when showing visitors around Carville as one of its tour guides.

The warmth, care and good spirits of his family are evident and provided José Ramirez with much needed vital support especially during the lengthy time it took to get a diagnosis of leprosy and during his long stay at Carville. They considered him still very much part of the family, visited him regularly despite distance and financial hardship, embraced him and flouted many a Carville rule. His parents were puzzled when asked to choose a new name for their son when he arrived at Carville. His girlfriend and family mixed happily with other patients at Carville too.  

José Ramirez demonstrated much fighting spirit in coping with numerous reactions and in keeping up his spirits psychologically through the trying periods of separation from his girl friend Magdalena and his family. Whilst at the leprosarium he maintained his studies and was the first student with multibacillary leprosy to attend Louisiana State University.  

He also determined to begin breaking down barriers and rules about separation. He describes, for example, the momentous day when he walked into the chapel and took a seat in the front row on the side reserved for Carville staff and nurses and how this action divided opinion both amongst the personnel and those affected by leprosy.

José Ramirez’ autobiography shows society’s reactions and attitudes towards him, including those of the medical profession, long after his full recovery and assumption of professional life as a social worker specialising in mental and cognitive disabilities. He also broaches the subject of how people with leprosy can internalise stigma themselves. Incidents he describes illustrate how far stigma is a social construct that is often based on hearsay or myths and fear, rather than being based on fact or scientific findings.  

One of José Ramirez’s key life goals is to educate people about leprosy and to break down prejudice and stigma and the ‘”labelling” that comes with leprosy. “I learned that being admitted to the facility at Carville would also mean being labelled a ‘patient’ forty years after being admitted for treatment. The word ‘leper’ strips away our human identity…”  Later he formulated his own definition of stigma. “Stigma is an act of labelling, rejection, or unexplained fear of a person”.

It is clear that as an advocate of those who are affected by leprosy, José Ramirez has helped bring greater understanding about the nature of stigma and the extent to which it is insidious. José Ramirez has also helped draw attention to the psychosocial needs of individuals who are affected by leprosy and is serving as an example of one who has triumphed over the trials presented by this disease to help many others.

José Ramirez has not “squinted” at life. Rather he has faced the world with his eyes wide open and is dedicated to being a catalyst for changing the public’s perception of leprosy and those it affects. 

 

Squint: My Journey with Leprosy 
The University of Mississippi 2009
ISBN 978-1-60473-119-4

 

See also review of documentary Triumph at Carville:
http://www.ilep.org.uk/news-events/article/view/triumph-at-carville-a-tale-of-leprosy-in-america/258/

Visit the website of IDEA, the international patients’ association for people affected by leprosy http://www.idealeprosydignity.org/

 

 

Categories: Book reviews, News and Notes, North and Central America, USA