“ELIMINATION OF DISCRIMINATION AGAINST
PERSONS AFFECTED BY LEPROSY & THEIR
FAMILY MEMBERS”
Dr.P.K.GOPAL,
President, IDEA INDIA &
NATIONAL FORUM OF PEOPLE AFFECTED BY LEPROSY
Leprosy is a unique disease, which had
rendered those affected, as a vulnerable target
for discrimination around the world, regardless
of country, religion or culture.
It was the first disease which brought a division
among the people – segregating and isolating
the affected persons from community.
"I can endure losing fingers and toes,
hands and feet but what I cannot
tolerate is to be cut off from the human
race through rejection".
A person affected by leprosy
LEPROSY COLONIES
In India, though there was no law to
segregate them, the family and community
abandoned the affected persons or forced
them to leave their families. These persons
had to resort to begging for their living.
BEGGING IN MUMBAI
They joined together as a group and started
to live away from the community. These
places were called as leprosy colonies.
With the support of The Nippon Foundation,
IDEA India conducted a survey to know the
number of leprosy colonies in different States
of India in 2005
There are about 700 self settled leprosy
colonies all over India Where the people
discriminated by the community are living a
marginalized life.
The Social fabric of the leprosy affected
individuals have been ruined by the disease
and thus creating another face to the
disease.
STIGMA LEADS TO DISCRIMINATION
The leprosy stigma impedes recovery by
eroding individual’s social & economic
status, social network and self-esteem, all of
which contribute to poor outcomes including
self-stigma, unemployment, isolation, lack of
opportunities, begging, etc.
Stigma and Discriminations are SOCIAL
EVILS need to be solved for the benefit of
not only the affected people but also for the
good of the community.
Leprosy and Laws
Laws were enacted to segregate the leprosy
affected persons from the community. The
provisions of the laws are today discriminatory
and unscientific in the light of modern
concepts of science.
Supreme court paper
In India there are about 27 Acts including the
Hindu, Muslim and Christian Marriage Acts
where
leprosy
is
a
cause
form
discrimination.
In the daily living also leprosy affected
persons are denied equal status with the
normal people.
Wrong statement by Chairman of State Human Rights
Commission, Andhra Pradesh State, India
The number of leprosy affected persons in
India has always been the highest in the
world. More than 11 million patients have
been cured from leprosy in the past 25
years, since introduction of Multi Drug
Therapy. Many among them are still living a
marginalized life, silently undergoing the
sufferings.
The hotels in many places do not allow
leprosy affected persons to stay and
Restaurants refuse to give food.
NEW DELHI YMCA TOURIST HOSTEL CUM PROGRAMME CENTRE
JAISINGH ROAD, NEWDELHI -110001, INDIA
.
Dr. P.K. Gopal, President
Idea India, 58, Selvam Nagar,
Erode - 638011
Accommodation: Idea India Group
Dear Sir,
We regret to inform you that the rooms reserved vide your letter
dated 08/09/2006 stands cancelled as we were not told or aware
that the group consists of Lepers.
There are other guest who will be staying during that period and
they may object to it as it has happened in the past when the same
group stayed last year. You are therefore requested to kindly make
some other arrangements.
The advance paid Rs. 55300/- vide cash receipt 23167 dated
08/09/2006 is being returned in full to you in due course.
Lawrencc^ardozaAsst Manager, Officiating Manager, YMCATII
TEL: 0091 11 23361915, 23361847, 23746031 (Direct) FAX: 0091 11 23746032E-mail:
We regret for the inconvenience caused. With best wishes,
ROLE OF DIFFERENT MEDIA
The media also perpetuate stigma by
projecting wrong informations, images
and indignified terminology like “leper”.
It is being done in cinema, news
papers, electronic media, stories, etc.
Many examples can be given.
DO NOT USE THE WORD LEPER
SOCIO-ECONOMIC EMPOWERMENT WORKSHOPs
We conduct SOCIO-ECONOMIC EMPOWERMENT WORKSHOPs for the
persons affected by leprosy in various States of India. The general
demands of the participants are:
The person affected by leprosy shall be included as
partners in developing policies and programmes as
well as in the implementation process.
All socio-economic barriers including the legal Acts
should be removed to enable us to return to normal
life.
No derogatory terminology be used while addressing
the persons affected by leprosy.
I can narrate many instances where the
affected people suffer due to stigma &
discriminations in recent times.
• Leprosy affected parents unable to
arrange marriage for their daughters
• Youths affected by leprosy were refused
jobs
• A person can not be nominated as a
Temple Trustee in few States
• They encounter stigma & discriminations
in their daily life
I can narrate many instances where the affected
people suffer due to stigma & discriminations in
recent times.
• Live with the fear of being rejected by
community. Hide deformities due to fear.
• Hotels refused accommodation
• Their living places and lands were taken
away by Governments or by land mafia
groups by force.
• Ignorant about their rights.
INVESTMENT ON THE AFFECTED PEOPLE
By experience we found that investment on the affected people and
their family members have helped to reduce the level of stigma &
discriminations. Following programmes help to reduce the stigma.
• Education of the children of leprosy affected parents
• Socio-Economic Rehabilitation of eligible affected
persons.
• Enabling them to have a networking among
themselves and work together to improve their
quality of lives.
• Making them to know their rights.
• Give them opportunities to show their skills &
involvement
• Help them to be on the process for empowerment.
NATIONAL PROGRAMMES ON
LEPROSY ERADICATION
A multifaceted strategic plan on
reduction of Stigma & Discriminations
should be developed and included in
the National Leprosy Eradication
Programmes.
UNHRC GUIDELINES
The Guidelines of the UN High Commission
for Human Rights can be used as a
‘tool’ by the persons in their fight against
stigma and discriminations. This will also
help the leprosy affected persons to know
their rights.
Let us continue our work for a
STIGMA & DISCRIMINATION
FREE WORLD
THANK YOU