Conversely, as the practice of exclusion grew, so did the decline in things that many of us take for granted ... rights ... choice ... dignity ... respect.
On Monday, a presentation was made on why WHO reached the conclusion that leprosy could be eliminated by the year 2000. Unfortunately, the projected "elimination of leprosy" does not address how to eliminate the countinued existence of stigma, prejudices and ostracism.
My strength is not in the field of medicine, so I will not address the first two reasons cited - epidemiology and technological advances. I do, however, know a little bit about politics and human resources.
My professional and personal experience has taught me that numbers are power. The HD population is so small in comparison to other populations that change or political power can be measured only in tiny steps. Secondly, the human resources or support systems for those being treated or already cured is very limited.
Support systems gravely lacking include, but are not limited to education on socio-econonmic resources, self advocacy counseling for depression and low self-esteem and grief of loss - loss of home, lost of friends due to death. Many persons affected by HD have lived in isolated settings for a period longer than you or I have been alive.
As a social worker who daily works with persons with mental disabilities, I have learned that as deinstitutionalization occurs, so must the inclusionary opportunities. These opportunities include choice - choice of where to live, choice to work, choice to participate in the community, choice of services, choice of treatment. The choices in turn are opportunities to break down barriers - opportunities to be treated with dignity and respect, opportunities to have the best possible health, opportunities to be satisfied with their life situation, opportunity to evaluate and change the provision of medical services.
Without the inclusionary opportunities, the LIPS will become sealed and the future of a partnership will be delayed...a delay that is unacceptable in a rapidly changing world.
Lesson in People Service(LIPS)
