The Global Leprosy Programme of the World Health Organization is currently working on a set of guidelines that will provide guidance on strengthening the participation of persons affected by leprosy in leprosy services. These Guidelines are to be published in early 2011. José Ramirez shares his thoughts on this important development.

For two days in June of 2010, sixty-five persons met for a historic summit in Manila, Philippines.  This meeting has been in the planning phases for centuries. The first step taken to begin this journey to Manila began when some unnamed hero, a person affected with leprosy, complained, generations ago, about the cruel, unusual punishment and ostracism directed at persons suspected of having leprosy, now medically known as Hansen’s disease. Those of us who attended this unique meeting will never be able to award him/her a prestigious, well-deserved medal. However, with the adoption of the later explained guidelines, which should have an impact on all unjustly, labelled individuals, we can all celebrate his/ her courage. The courage I reference, relates to actions that exhibit refusal--- refusal to be treated in an inhumane manner. This comprehensive concept of courage and refusal is what we now refer to as empowerment.

 

In 2009, the World Health Organization (WHO) invited representatives from 150 different countries to review, discuss and approve strategy related to reducing the worldwide disease burden due to leprosy. A very small portion of the strategy addressed stigma, discrimination and empowerment. In light of this, the Sasakawa Memorial Health Foundation (SMHF) strongly advocated for the creation of a task force to plan for a meeting specific to empowerment. The task force comprised of WHO staff, one expert in research, representatives from SMHF, and two persons affected. This task force drafted the guidelines on empowerment to be critiqued, discussed, and simplified at the Manila meeting.

 

In Manila, persons from forty-eight different countries, including persons affected, WHO managers and administrators, experts on stigma, partners who deal with other physical, mental and cognitive disabilities, independent observers, task force members, and a representative for the WHO Goodwill Ambassador for Leprosy joined forces to provide comments, criticisms and praise of the guidelines.

 

However, prior to the distribution of the guidelines and the arrangement of the meeting, the task force had to overcome five major hurdles. The first and most important hurdle was to determine the process of encouraging the participants in Manila to become co-owners of the document. The second hurdle was for the attendees to recognize the persons affected by leprosy present at the meeting as “experts” --- not as medical experts, but as experts in the world of leprosy. Third, was the challenge involving a guarantee from the attendees to accept and practice using person-first language. Additionally, the fourth hurdle was to ensure that the language is simplified and not ridden with medical terminology and jargon. The final challenge was to address the unique protocol practiced by WHO in recognising leadership… all attendees are leaders in their respective communities.

 

The meeting was both frustrating and exhilarating.  It was frustrating because many of the presentations made on the first day of the summit focused on personal stories and overcoming individual challenges. These stories, having been previously heard by many of the participants, created an initial belief that the meeting would not fully address the guidelines. The exhilaration came gradually as the participants realised that the meeting was intended to return the unique and beautiful distinctiveness to each person affected and liberate them from being simplified into one, solitary shadow. Additionally, the meeting created fuel for constructive discussions related to changes from persons being voiceless to being heard, from being given directions through policy to helping with the co-development and implementation of policy, and shifting from exclusionary to inclusionary practices.

 

The following guidelines, with accompanying strategies, were adopted by the participants and further refined by the task force members.

1.      Stigma and Discrimination

a.      Work with persons to evaluate whether words or images promote dignity or perpetuate stigma.

2.      Equality, Social Justice, Human Rights

a.      Work with people and their organisations to educate other people affected, programme staff and community about human rights.

3.      Information, Education, Communication (Raising Awareness)

a.      1. Encourage people to serve as a role model for other affected people.

4.      Advocacy

a.      Work with people to promote equal access to services.

5.      Counselling

a.      Provide people with the opportunity to be trained as counsellors.

6.      Referral

a.      Promote opportunities to work with health staff for effective referral services.

7.      Resource Mobilisation

a.      Encourage the persons/groups to be involved in evaluating and advising resource mobilisation/fundraising strategies to ensure they do not promote stigma.

8.      Training and Capacity Building

a.      Involve people to give training to programme and project staff on how to involve persons affected in services.

9.      Gender Issues

a.      Work with people to advocate for equal rights and opportunities for men and women.

10.  Planning and Management of Services

a.      Promote the recognition that the people are experienced and knowledgeable on the disability and other related aspects, which are valuable to the programme.

11.  Prevention of Disabilities (POD)

a.      Involve people to encourage others to go for examination at an early stage.

12.  Rehabilitation

a.      Work with people to promote the use of modern images and terminology, such as “physical empowerment” or “socioeconomic empowerment”

13.  Monitoring Evaluation

a.      Use experience of individuals who have a disability to help identify gaps in the public health system-- before, during and after treatment.

14.  Research

a.      Encourage people to work with researchers to ensure research methodology does not deprive people of their identity and that they are informed of their rights.

 

The three outcomes from the Manila meeting include:

1.      Redistribution and review of the guidelines by the participants,

2.      Publication and worldwide distribution of the guidelines by December 2010 and

3.      Preliminary evaluation of the implementation of the guidelines by December 2012… Some countries have been implementing some or all of the guidelines for several years.

 

 

 

 

 

Published with kind permission of José Ramirez, Jr., Managing Editor of The STAR

Contact: Jose.Ramirez@mhmraharris.org OR joseramirezjr@hotmail.com

Note: The opinions expressed in this article are those of the author.

 

 

Categories: International Collaboration, News and Notes