公益財団法人笹川記念保健協力財団
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WHO Goodwill Ambassador's Newsletter For The Elimination Of Leprosy

Know Your Rights

If you want to claim your rights, you have to know what they are, conference told.

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Speaking out in Delhi

In introducing the National Conference on Leprosy and Disability held in New Delhi on January 30 and 31, the global chair of Disabled Peoples’ International (DPI) readily admitted that he had not known much about leprosy until coming into contact with the work of The Nippon Foundation.

Once Javed Abidi had familiarized himself with the issues, however, he made a commitment to bridge the gap he saw between the disability and leprosy sectors. “Our challenge is how to mainstream people affected by leprosy within the disability movement,” he said.

Billed as a national conference, the DPI-organized event was given an international flavor with the participation of speakers from Bangladesh, Brazil, Myanmar, and the Philippines.

They included Faustino Pinto of Brazil’s Movement for the Reintegration of People Affected by Hansen’s Disease (MORHAN), who asked: “Why should I allow a disease to determine how I am viewed by society?” and argued forcefully for dispensing with the term ‘leprosy’ because of its stigmatizing associations. “If you want to change discrimination, you have to change the way we speak about the disease,” he said.

ENGAGING WITH THE COMMUNITY

Mohammed Kamal Uddin, ex-president of Bangladesh’s Disadvantaged People’s Association, detailed a strategy for combating discrimination and mainstreaming leprosy that ranged from educating family members and reaching out to local and national disabled people’s organizations to lobbying the government to include leprosy in the nation’s 2013 disability act.

He also spoke of the importance of engaging with community leaders and creating opportunities for people affected by leprosy to tell their stories, and of the powerful impression created by social workers shaking hands with and embracing people affected by leprosy.

Carmen Lucia Lopes Fogaca, president of the National Organization of the Physically Disabled of Brazil (ONEDEF) outlined the ongoing struggle for disability rights in her country. An important point was reached when “we started to talk for ourselves,” she said. “We have come a long way, but we still have a long way to go to achieve an egalitarian society.”

CAPACITY BUILDING

The second day of the conference included a training session for persons affected by leprosy undertaken by the Diversity and Equal Opportunity Centre (DEOC), designed to familiarize them with the landmark Rights of Persons with Disabilities Act, 2016. The new act brings India into line with its obligations under the Convention on the Rights of Persons with Disabilities and increases the number of disabilities recognized under the 1995 Persons with Disabilities Act from seven to 21, including leprosy.

Being disabled doesn’t mean something is wrong with you. Disability is another diversity.

During the session, DEOC’s Rami Chari drew her audience’s attention to the distinction between the different approaches to disability underpinning the old and new acts. Under the 1995 act, society was considered ‘normal’ and the disabled ‘abnormal’, she said; under the 2016 act, which is based on the concept of equal rights, the problem lies with society if there are barriers—be they physical or attitudinal—standing in the way of full participation by persons with disabilities.

“Being disabled doesn’t mean there is something wrong with you. Disability is another diversity—along with being tall or short, and the color of your skin,” Chari said.

TAKE OWNERSHIP

After group discussions involving people affected by leprosy in which they identified the issues they felt were most pressing in their part of the country—land rights, access to benefits and entitlements, and awareness-raising among them—a final session reinforced the earlier messages about the fundamental nature of human rights.

“All disabilities are not equal, but there are equal rights,” said DPI’s Abidi in reference to the 21 disabilities listed in the new act. He urged persons affected by leprosy to familiarize themselves with their rights and take ownership. “If you don’t claim ownership, you can’t expect anything,” he said. “This is as much your law as anyone else’s.”