Leprosy and the disability community

 

Leprosy Mailing List – July 22,  2013 

Ref.:    (LML) Leprosy and the disability community

From:  Douglas Soutar, General Secretary ILEP

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Dear Colleagues,

In a recent copy of the Goodwill Ambassador's Newsletter I was pleased to read an interview with Javed Abidi, Chairperson of Disabled People's International. It is always heartening to come across an article where the author is espousing the same arguments one has also been pushing for a long time. The interview can be found here: http://www.smhf.or.jp/e/ambassador/061_03.html

 When asked where leprosy fits into the disability movement, Javed is firmly of the view that "people affected by leprosy are part of the disability movement" but bemoans the fact that the "disability movement at large has neglected the cause of people affected by leprosy". On the other hand, he notes that the leprosy community has not been knocking on the door of the disability movement. This is changing, certainly among the leprosy NGOs, with ILEP, for example, becoming an active member of the International Disability and Development Consortium and seeking greater collaboration with those working in other disabling Neglected Tropical Diseases (NTDs). 

 Among the organizations of those affected by leprosy, the focus has understandably tended to remain on leprosy-specific human rights issues such as the implementation of the Principles and Guidelines to End Discrimination against People Affected by Leprosy and their Families.  But interaction with the wider disability movement is happening, albeit gradually, as the realization grows that international conventions such as the CRPD, as Javed rightly notes, contains everything that the Principles and Guidelines do. He goes on to say however, that "The Committee on the Rights of persons with Disabilities needs to be sensitized about leprosy".  Last year he notes there was not a single person speaking for leprosy at the Conference of States Parties.  This week the Conference of States parties is again meeting at the UN in New York and I am certain there is again no one affected by leprosy to question the presenting nations on issues relating to people affected by leprosy.  Ironically perhaps, leprosy is one of the only Neglected Tropical Diseases  for which the WHO has produced a set of clear Guidelines for strengthening participation of persons affected by leprosy in leprosy services.  But much more needs to be done to ensure that persons affected are also empowered to insist on having a voice at the table in forthcoming United Nations debates on disability and development such as the High Level Meeting on Disability and Development in New York on 23^rd September 2013.

 

When asked what DPI can do for leprosy, Javed is adamant he will take positive action, "Somebody will be made aware, somebody will be embarrassed, somebody will make a phone call and some kind of discourse will start".  Such positive actions need to be taken by all those working for the human rights of persons affected by leprosy and I will be arguing in the forthcoming International Leprosy congress in Brussels in September that the overarching need is for the promotion of broader collaboration between those who are marginalized, disabled or oppressed, including those affected by leprosy, in order to promote the rights of all.  Initiatives focusing only on the human rights of those affected by leprosy will risk failure and their advocates will themselves continue to be marginalized and excluded from the development process unless a more inclusive and universal rights-based approach is taken.

  

Best regards

Doug

 

Douglas Soutar

General Secretary

International Federation of Anti-Leprosy Associations

Tel: +44 (0)20 7602 6925 – Fax: +44 (0)20 7371 1621 – Website: www.ilep.org.uk

Find us on Facebook: ILEPAntiLeprosy

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