Putting Empowerment on the Agenda
Groundbreaking meeting issues ‘Delhi Declaration’ affirming dignity and rights of persons affected by leprosy.
India's first ever national conference of persons affected by leprosy was held in New Delhi on December 19, 2005.
Under the theme of “Integration and Empowerment,” the landmark conference drew some 600 delegates ― among them representatives from India's nearly 700 leprosy colonies ― as well as senior government ministers, health workers and activists.
More than 11 million Indians have been cured of leprosy since the mid 1980s, and while less than 60,000 people are believed to live in these self-settled colonies, social integration and economic advancement remain far off for many.
“We have won the medical battle against leprosy thanks to multidrug therapy, but the war against social stigma and irrational discrimination is still to be won,” said WHO Goodwill Ambassador Yohei Sasakawa at the opening of the conference.
Chaired by IDEA India President Dr. P.K. Gopal, who described the gathering as “a historic day for persons affected by leprosy,” the conference heard speeches from Union Minister for Justice and Social Empowerment Meira Kumar, Union Minister for Policy Implementation Oscar Fernandes, Leprosy Elimination Alliance President Dr. S.K. Noordeen, International Leprosy Union Chairman Dr. S.D. Gokhale, and Federation of Leprosy Organizations President Dr. Brahm Dutt, among others.
For many of the colony representatives, it was their first experience to participate in a national conference. It provided them with the opportunity to link up with other persons affected by leprosy from all over India, and inspired the hope that by joining forces they could work together to build a better future. The bursts of applause that regularly punctuated the Federation of Indian Chambers of Commerce and Industry Golden Jubilee Hall were testimony to the feelings of empowerment the occasion aroused.
Delegates came from all over India for the landmark meeting.
Commented Anjan Dey, who overcame leprosy to qualify as a physiotherapist at the hospital near Pune where he once swept floors as a patient, such an event would have been “unthinkable” just a few years ago. “I am really happy to note that for the first time hundreds of people affected by leprosy have come to the national capital, are staying in good hotels, organizing their own conference and interacting in the best tradition of a national meet,” he said.
‘An event like this would have been unthinkable just a few years ago.’
During an “empowerment session,” delegates highlighted their concerns and hopes, and urged that the momentum begun by the conference not be allowed to taper off.
“The gains of this historic conference should not be lost after the program is over,” said delegate M. Gurappa from Haryana, adding that there should be a national body, headquartered in Delhi, where persons affected by leprosy could come together and “present a united face in front of the government, business and other sections of society.”
Echoing his comment, Bhimarao Madhale from Maharashtra said, “A very important thing for us is to be united, because without unity we cannot achieve anything substantial, in spite of the good wishes of many others.”
From West Bengal, Swapan Kumar Bannerjee called for “a strong democratic movement among cured people to create their leadership and make society at large take cognizance of our rightful needs.”
During the day, the newly-created National Forum for the Empowerment of People Affected by Leprosy met to discuss its future agenda. The 17-member forum, including 9 persons affected by leprosy, agreed to complete an ongoing survey of the nation's self-settled colonies and draw up a list of their needs.
A key document to emerge from the conference was the Delhi Declaration of Dignity (see below), listing 14 recommendations to promote quality of life, freedom from degrading treatment and each individual's most basic human rights.
It is now up to those who took part to build on the foundations the conference created, but
what it already achieved was summed up by an elderly woman from Haryana, who said, “I did not get the bag and shawl that were given to all delegates as I was late arriving, but what I got today was something I never got in the last 30 years since I had leprosy: respect and dignity.”
DELHI DECLARATION OF DIGNITY New Delhi, India, December 19, 2005
Whereas, the preamble to the Universal Declaration of Human Rights, adopted in 1948, recognizes “the inherent dignity” and “the equal and inalienable rights of all members of the human family” as the foundation for freedom, justice and peace in the world;
We, the participants in the National Conference on Integration and Empowerment of Persons Affected by Leprosy, held in Delhi, India, on December 19, 2005, do hereby join together to affirm our dignity and our right to be involved in decisions that affect our lives and our future.
Therefore, as partners working together to eliminate the stigma associated with leprosy and the destructive effects that it has on people's right to live their lives with dignity, we, the participants in this National Conference, do hereby resolve that the following recommendations be adopted in order to promote quality of life, freedom from degrading treatment, and each individual's most basic human rights.
1. Every effort should be made by government agencies, non-governmental organizations and the people themselves to ensure that individuals affected by leprosy are not discriminated against in any way in their daily life, including the areas of education, employment, housing, public transportation, and the availability of medical services.
2. The government should be encouraged to actively promote the human rights of individuals affected by leprosy, and actively prevent violations of these most basic rights.
3. All discriminatory laws, including the law that facilitates divorce due to leprosy, should be repealed.
4. The use of dignified terminology is essential to eliminating the stigma and appropriate language should be used to address people affected by leprosy. Derogatory terms such as “leper,” “maharogi,” “kodi,” etc., should never be used.
5. Opportunities should be provided for individuals and organizations made up of persons affected by leprosy to work in partnership with government agencies and non-governmental organizations to develop activities and programs.
6. Individuals affected by leprosy should be nominated in the State and National Commissions as members under the Persons with Disabilities Act.
7. Every effort should be made to encourage support and inclusion of the person affected by leprosy within their family.
8. Individuals affected by leprosy and organizations representing these individuals should be supported in efforts to develop productive networks that will ensure that the voice of the persons affected by leprosy continues to be heard.
9. Every effort should be made to ensure that children of persons affected by leprosy receive equal opportunities for education and employment.
10. A national effort should be made to ensure that all types of media, including newspapers, films and television, portray individuals affected by leprosy with dignity.
The media should be encouraged to become part of the effort to eliminate the stigma by promoting modern, current information about the disease and those affected by it.
11. Proper housing and care should be given to elderly persons affected by leprosy. A reasonable amount not less than Rs. 500/- as pension should be given to the leprosy-disabled persons.
12. Networks to ensure the prevention and treatment of disabilities should be strengthened, especially among hospitals and private health centers.
13. Sustained training programs for government medical staff should be implemented to ensure the ongoing, comprehensive treatment of persons affected by leprosy.
14. Persons affected by leprosy should be afforded their rightful place in the history of leprosy worldwide. Persons affected by leprosy pledge their support to governments and NGOs to eradicate leprosy from the country and to improve the quality of the lives of the persons affected by leprosy.
In conclusion, we strongly affirm that the final victory in the fight against leprosy should only be declared when there are no more persons to be cured, no more disabilities to treat, no more discrimination and human rights violations to overcome, and when persons once affected by the disease can lead normal, integrated and empowered lives with the same opportunities, rights and duties as their fellow citizens.
Persons affected by leprosy