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WHO Goodwill Ambassador's Newsletter For The Elimination Of Leprosy

REPORT: CBR Guidelines Herald Change

New WHO guidelines will promote socio-economic inclusion, rights and dignity.

Paving the way: WHO/ILEP technical guide from 2007
Paving the way: WHO/ILEP technical guide from 2007

In October, new guidelines1 on community-based rehabilitation (CBR) will be published that are designed to facilitate inclusive development for people with disabilities, including people affected by leprosy and their families. The guidelines will make "a huge change" to the way CBR has been practiced, according to the WHO's Chapal Khasnabis, one of the guidelines' architects.

As currently defined2, CBR is a strategy within general community development for the rehabilitation, equalization of opportunities and social inclusion of all people with disabilities. As such, it is highly relevant to the rehabilitation of people affected by leprosy, and the new guidelines will underline this with the inclusion of a supplementary chapter devoted to the subject of leprosy and CBR.

"The framework for the new CBR is a matrix with five major components: health, education, livelihood, social, and empowerment, with empowerment the strategy to make these sectors inclusive," says Khasnabis. "If we embrace this matrix, then even in the leprosy world, this will represent a change from the past more toward the social model, more toward inclusion."

"The basis of the social model is the idea that 'society makes me disabled, not my impairment. Therefore, I need to work with society not to make me disabled.' If the social model works in the disability sector, then why not also in the leprosy sector?"

To underline his point, he reads out two statements: 'Disability is mainly a socially created problem, and basically is a matter of full inclusion and participation of individuals into society.' 'Poverty, stigma, prejudice, systematic barriers, negative attitudes and exclusion by society are common experience of people with disabilities.' Replace the word 'disability' with 'leprosy' in the first, and 'people with disabilities' with 'people affected by leprosy' in the second, and these statements are still valid, he says.

A Sector Apart

Leprosy has traditionally been excluded from mainstream rehabilitation and CBR, a fact that Khasnabis laments. The reasons include the way that persons with disabilities due to leprosy were usually referred to specific leprosy rehabilitation centers; the stigma attached to leprosy, which often made mainstream rehabilitation programs scared of taking people with leprosy and made people with disabilities due to leprosy hesitate to participate due to past experience of discrimination and self-stigma; a disconnect between leprosy and CBR programs from donors through the community level; and the attitude of leprosy leaders, their supporters and CBR implementers.

"Leprosy is not part of the disability movement, or disability development. This kind of segregation is not a healthy situation to change anything," says Khasnabis. "Leprosy leaders need to be part of the disability movement. Then the pace of change will be faster. If they remain isolated, they will remain isolated for ever."

Especially, the benefits of the Convention on the Rights of Persons with Disabilities should also reach to the people with disabilities due to leprosy, he says. "Partnership among disability leaders, leprosy leaders and CBR implementers can make this happen."

TOWARD INCLUSION

In order to include leprosy in CBR, much needs to happen. CBR programs and disabled persons' organizations including organizations of persons affected by leprosy need to work together to make them aware that they can be equal participants in CBR activities.

Awareness and training of CBR personnel is required, sensitizing them to the needs of people affected by leprosy and promoting their rights, while challenging their misconceptions, stigma and discrimination.

CBR implementers need to pay special attention to ensuring that, just like any other people with disabilities, people with leprosy and their family members are accessing all benefits of CBR with equal rights and opportunities.

The problem of poverty needs to be addressed. Skills training, income generation activities and decent work can provide a strong entry point for inclusion into society and is a mechanism for breaking the cycle of isolation, dependency and poverty associated with the leprosy. "I come from India," says Khasnabis. "India teaches that if you want to change leprosy, then you have to address poverty and its various facets."

In particular, it is important to involve people affected by leprosy in all aspects of CBR: planning, implementation and monitoring. "People affected by leprosy should be part of implementing CBR programs," says Khasnabis. "If they are only seen as beneficiaries, then change will never take place. Only when they are part of the whole system will change happen."

Indeed, under the guidelines, the aim is for all people with disabilities, irrespective of their causes or conditions, to be part of and benefit from all development initiatives - all people, including people affected by leprosy and their family members.