SASAKAWA MEMORIAL HEALTH FOUNDATION
Japanese
Character sizeLargeSmall

WHO Goodwill Ambassador's Newsletter For The Elimination Of Leprosy

OPINION: We Are Not 'Lepers'

Jose Ramirez, Jr. wrote this article 10 years ago. A decade on, his message still needs to be heard.

The recent deaths of two beautiful ladies--
Diana, Princess of Wales, and Mother Teresa--
have dramatically enhanced the opportunities for many individuals throughout the world to offer their support to a cause normally ignored by the public.
However, the untimely deaths of these two women have opened up old and painful wounds for those of us so heartlessly referred to as "lepers"probably the most offensive word in the world. Dictionaries define "leper" as "a person ostracized due to moral condemnation ... a pariah
... unclean ... the living dead." While alive, Princess Diana and Mother Teresa embraced the acceptance and understanding of leprosy. Regrettably, after their deaths, the L-word has assumed an increased level of prominence and appears to be on everyone's lips.

"The first time I was referred to by the L-word was on the day of my diagnosis."

The Bible has historically legitimized the use of the L-word. Many journalists, gossip columnists, editors of religious articles, sports writers and users of the Internet have recently found it acceptable to use this odious word when attempting to cite examples of sin, hopelessness, failure, stigma, fear, dark humor and unacceptable comparisons.
Unfortunately, there have been instances that have perpetuated the spread of grossly inaccurate myths. For example, issuance of special money for use in leprosaria, sterilization of persons with leprosy, fumigation of mail, laws to incarcerate and/or divorce anyone with leprosy, and denial of rights such as voting.

'NOTHING TO FEAR'

The first time I was referred to by the L-word was on the day of my diagnosis in 1968. After months of going to physicians, dermatologists and curanderos (folk healers), I was finally diagnosed with Hansen's disease, more commonly known as leprosy. The public health official who informed me of my diagnosis attempted to reassure me that there was "nothing to fear" and that I would soon be back on my feet. He was telling me this while referring to me by the L-word. My family was morbidly silent and the hospital initiated a strict plan of isolation, forcing visitors and medical staff to be shrouded in caps, gloves, gowns and masks when entering my room.
The necessary course of treatment forced me to be transported to the only leprosarium in the continental United States, located in Carville, Louisiana, 20 miles south of the gates of Louisiana State University in Baton Rouge. Ironically, the 700-mile trip from my home town of Laredo, Texas, was in a hearse . allegedly ambulances were not available for the trip.
This unique hospital** is approximately 50 yards from the Mississippi River, separated by a carefully rounded levee and narrow road. "Carville" as the hospital is known worldwide, was my home for seven years. For others, this has been their only home for over half a century due, in part, to antiquated state laws that governed the mobility of persons with leprosy.
Carville has beautiful architecture, 300 acres of magnolia and pecan trees, meandering creeks full of wildlife, including the very popular crawfish, and a lake full of turtles, fish and alligators. This beauty, however, was not appreciated by my eyes while a resident at the hospital. All I could see was the isolation of the place, the sadness of my fellow patients, who were divorced and abandoned by their natural support systems, and the constant battle to keep their diagnosis a secret. The risk of having a hometown friend, or worse, an enemy, divulge their illness meant instant ostracism of their family, and also being branded as outcasts.

A MISUNDERSTOOD DISEASE

The fear of leprosy is a worldwide phenomenon. It is a fear of the unknown because the myths of leprosy usually project images of lost souls, lost limbs, disfigurements, hellish punishment, contamination and death. This xenophobia is difficult to battle when the L-word continues to be uttered by members of the royalty and other world leaders.
However, the war will continue to be fought in an effort to eradicate the use of this term and thus eliminate the ignorance that is often associated with this most misunderstood of illnesses.
For those of us diagnosed with Hansen's disease, the painful road to recovery has led to numerous detours of isolation, fear, ostracism, lengthy hospitalization, depression, misinformation and lost identity.
Exiting from this road has meant continuous self-education and education of others that we are not "lepers". We are human beings with a rare diagnosis and demand to be treated and referred to with dignity and respect.

AUTHOR: Jose Ramirez, Jr.

Jose Ramirez, Jr. is department director, Mental Health and Mental Retardation Authority of Harris County (Houston, TX). He is a licensed master social worker and advanced clinical practitioner. His book detailing his journey with leprosy will be published soon.