National Conference on Integration & Empowerment
of People Affected by Leprosy

On December 19 in Delhi, India, a group of
more than 580 representatives from leprosy
colonies around the country came together, for
a conference entitled "Empowerment of People
Affected by Leprosy." It was the first time
that such a group had assembled, and it is
seen as the beginning of a movement. A
movement in which Indians who have been
affected by leprosy begin to stand up and
demand that they be treated with dignity. That
their rights no longer be ignored.

The conference was lead by Dr. P.K. Gopal, the
president of IDEA India. IDEA stands for the
International Association for Integration,
Dignity and Economic Advancement, and is an
organization made up of individuals who have
at one point or other been affected by
leprosy. Dr. Gopal, who himself once had
leprosy, saw the day as historic, in that the
conference was the beginning of a network
comprised of Indians with the disease.

A survey conducted by IDEA and The Nippon
Foundation has to date found 630 leprosy
colonies throughout India. These colonies are
generally isolated from the rest of society,
and become the permanent home of people who go
there. They are not funded by the government,
and most of the residents come to live there
because social attitudes toward leprosy have
driven them away from their families, out of
their villages.

Since the 1980s, leprosy has been curable.
However, the social attitudes toward the
disease are very close to the way they were in
the days when a person with leprosy had
leprosy for life. People still fear the
disease, and act according to this fear. The
burden that this stigma imposes has been
terrible enough that many hide their condition
from view until deformity has set in and they
are forcibly cast out of the community. This
sort of action then reinforces the stigma,
discouraging even more people from seeking the
free cure. And so the cycle repeats itself.

The human rights violations that people with
leprosy must endure are unreasonable. They are
terrible. But in the end, dignity is something
that cannot be given. It must be claimed.
Until people who have been affected by leprosy
begin to speak out and demand the respect and
the equal treatment that is rightly theirs,
they will never completely attain it. Even if
for this reason alone, the conference in Delhi
and the network that it began are more
worthwhile than any amount of government
legislation. When people begin to realize that
they are not alone, and that their lives have
meaning, the floodgates open, and there is no
limit to the power that they suddenly wield.


December 19 was truly a historic day.


Writer: James Huffman
Photographer: Natsuko Tominaga