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THE PSYCHO-SOCIAL CHALLENGE
INTEGRATION, DIGNITY AND ECONOMIC
ADVANCEMENT
Anwei Skinsnes Law, MPH
"I was Case No. 746 Henceforth I would always be No. 746,
a number identified not only with my case history but with
everything I would do at Carviile for the next third of a century
.... I was sinking into the quagmire of anonymity that society
reserves for victims of leprosy, mental illness and crime.
- - Stanley Stein, 1963 - -
When Sidney Levyson was admitted to Carville in 1931, individuals were encouraged to change their names in order to protect their families. With a certain amount of resistance, Sidney Levyson, university graduate, pharmacist, actor, Texan, became Stanley Stain, case number 746. Many headstones in Carville's cemetery bear witness to the time when individuals assumed new identities upon entering Carville. Today, more than half a century later, many individuals throughout the world struggle to regain identities lost to this disease. This issue of identity is critical to understanding the psycho-social challenges that face us in the years ahead.
"In Japan, whether in recent times or days of old, people with leprosy
have not been treated as individuals. A "leper" was always a person
in a group or a mass, but never an individual".
--Rev. Eiichi Ishihara, 1993 - -
"My name is Olivia. It's not L-E-P-E-R ..... I'm for changes that make
me feel human. I don't want to feel like a patient all the rest of my life. "
-- Olivia Breathe, 1988 - -
The Medical Commission of ILE recently posed the question: "When is a leprosy patient not a
leprosy patient?" While some might regard this as a medical question, it is in fact, really a
psycho-social question. For example, if I was diagnosed with this disease, I doubt I would
instantly be labeled a "leprosy patient." I think I would simply take my medication and retain my
identity as a writer, video producer, historian and daughter of Dr. Olaf Skinsnes. In contrast,
someone who has been cured for 50 years is of ten referred to as a "leprosy patient". This reveals
that the term "leprosy patient" has a lot more to do with one's social environment than with
whether or not one's body harbors active bacilli.
Calling people patients automatically puts them in a subservient position. The dictionary definition
of the word "patient" simply states "a person who is under medical oi surgical treatment."
However, the synonyms given for the word "patient" are much more telling: "uncomplaining,
long-suffering, forbearing, passive, calm." People are increasingly rejecting these characteristics in
favor of becoming equal partners in their health care. there's no reason that people with Hansen's
disease should be any different.
"When is a leprosy patient not a leprosy patient?" It is easier to answer this question clinically than
socially or psychologically. Clinically, some government programs feel that individuals should no
longer be classified as "leprosy patients" when MDT has done its work and they are
bacteriologically negative. However, if disabilities are present, it is difficult for many individuals to
forget that they have had this disease and relegate the experience to a distant memory. Thus,
individuals who have been cured often continue to feel like "patients", especially if society
continues to treat them this way. In addition, disability is all too often linked with the inability to
be economically independent and this, in turn, prevents an individual from becoming fully
integrated into society, thus remaining a "patient" in the eyes of the community.
The presence of stigma has a great influence on whether or not a person continues to be regarded
as a "leprosy patient" after he/she is cured. Some attribute the stigma to physical disabilities while
others say that the stigma results from poverty. However, there are clearly instances of individuals
with no disability who have not been able to find employment or acceptance due to the stigma.
Similarly, there are examples of extremely wealthy individuals who, because of the stigma, are
reluctant to tell their families that they have the disease. Stigma has also been attributed to
folklore, racism, Biblical tradition and terminology. Some believe that the stigma is actually a
result of efforts by social scientists to eliminate the stigma.
Stigma manifests itself in prejudice and discrimination. Whatever its cause, its roots lie in
ignorance and the cure for stigma is education and knowledge. Stigma can be diminished by the
prevention of disabilities, the improvement of socioeconomic status and possibly even by a change
in terminology. However, these solutions do not get to its roots. They may make an individual
more acceptable to society but, unless accompanied by thorough public education and a real
change in attitudes, the stigma will lurk beneath the surface waiting to emerge at inopportune times. The fear of this can weigh heavily on people and affect family relationships, work environment, feelings of self-worth and even compliance.
With the year 2,000 clearly in sight, we are fast approaching a crossroads. Even if Hansen's
disease is eliminated as a "public health problem" throughout much of the world, emphasis will
increasingly need to be placed on the social aspects of "leprosy" which, all too often, prevent
individuals from leading normal lives. The social aspects of the disease impact upon both
treatment and rehabilitation. How the disease is regarded socially determines whether or not
society and the individual who has this disease can regard it as "simply another disease". As long
as its social manifestations persist, it will never be "just another disease". IDEA, The
International Association for Integration, Dignity and Economic Advancement, has been formed
to help meet the challenge of eliminating leprosy as a "human problem".
Return to IDEA page
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