Disabled Peoples’ International (DPI) and The Nippon Foundation have joined hands to work towards integrating people affected by Leprosy in the disability movement, particularly in the countries that have high prevalence of Leprosy and to use the Convention on the Rights of Persons with Disabilities (CRPD) effectively to advocate for equal rights of people with Leprosy.

DPI strongly feels that the voice of people with Leprosy has for long been neglected not only by the governments, but even by the disability movement. However there are some organizations and self-help groups in the world that have been advocating for the rights of persons affected by Leprosy since a long time. DPI being a cross-disability organization, through this project aims to make a conscious effort to include people with Leprosy and their organizations in DPI, in order to bring their voices to the forefront of the international movement of persons with disability.

Implementation of the Project

The project has been implemented in two phases.

Phase 1 aimed at preparing a Baseline Report regarding cross-disability representation, governance aspects and information about Leprosy inclusion in DPI.

Phase 2 aims at making proactive effort to include people with Leprosy in DPI and to ensure their voices are heard in the international disability movement.

Pre-Phase: (1st January 2014 - 31st March 2014)

Pre-Phase of the project aimed at preparing a Baseline Report, regarding cross-disability representation, governance aspects and information about Leprosy inclusion in DPI.

Activities undertaken were:

  1. Groundwork for the Baseline Survey, including identifying relevant professionals, updating databases, preparation of terms of references etc.
  2. Developed a Survey Tool (questionnaire) to assess the level of inclusion of persons with different disabilities with special focus on inclusion of persons affected by Leprosy especially in the 15 high prevalent countries of Leprosy in the world (MNAs). The Survey Tool included various aspects of participation and governance, laws and schemes, socio-economic status of people with Leprosy, and presence of organizations for and of people with Leprosy
  3. Survey was sent to 134 MNAs of DPI. The data was compiled and analyzed.
  4. A comprehensive Baseline Report was prepared based on the findings. Specific recommendations were given to improve the governance of MNAs, increase cross-disability representation and to promote inclusion and rights of people with Leprosy in DPI.

Baseline Report Word File(54 KB)

Phase 1: (1st September 2014 - 31st December 2016)

Phase 1 of the project aims at making proactive effort to include people with Leprosy in DPI and to ensure their voices are heard in the international disability movement.

Objectives:

  1. To make proactive effort to include self-help organizations of Leprosy as members in the 14 existing Member National Assemblies (MNAs).
  2. To set up MNAs in Brazil and Myanmar and ensure representation of organizations working with Leprosy.
  3. To create awareness and highlight the concerns of people affected by Leprosy amongst other disability leaders and other relevant stakeholders.
  4. To ensure that future Parallel Reports on the CRPD and the Universal Periodic Review (UPR) Reports prepared by the MNAs include status of persons with Leprosy in their respective countries.
  5. To have the voice of people with Leprosy heard at the international forums by organizing side events at Conference of State Parties (CoSP).
  6. To build capacity of leaders from the Leprosy sector.
  7. To have a program focused on India to enhance awareness and inclusion of persons affected by Leprosy in the disability movement.

Activities undertaken as of date:

  1. Support participation of 3 people affected by Leprosy in International Disability Conferences:

    DPI has been able to support the participation of the following people:

    Mr. Jose Ramirez Jr. at the Zero Project Conference 2015 on Independent Living and Political Participation at United Nations Office in Austria. Mr. Ramirez who is himself a person affected by Leprosy gave a power point presentation on the Global Situation on Independent Living for Persons Affected by Leprosy during the session on 'Fighting Leprosy - The ignored disability'. PPT presentation on the Global Situation on Independent Living for Persons Affected by Leprosy by Mr. Jose Ramirez Jr. at the Zero Project Conference 2015, Austria: PPT FileOpens in a new window

    Mr. Hermen Mangaradas Hutabarat, Vice Chairman, GPDLI Indonesia at the 3rd Asia-Pacific CBR Congress held in Tokyo, Japan from 1st to 3rd September 2015. Mr. Hutabarat is a person affected with Leprosy. He made a presentation on 'Role of Indonesia's Leprosy and Disability Care Movement' at the Concurrent Session on 'SHGs and DPOs in the Community'. PPT presentation on the Role of Indonesia's Leprosy and Disability Care Movement by Mr. Hermen Mangaradas Hutabarat at the 3rd AP CBR Congress, Japan. PPT FileOpens in a new window.

    Dr. P.K. Gopal, President, IDEA-India participated at the South Asia Regional Disability Rights Dialogue on Political Participation organised by IFES in Colombo, Sri Lanka from 1st to 3rd October, 2015. Dr. Gopal is a person affected with Leprosy. He made a presentation on "Status of People Affected by Leprosy with regards to Political Participation". PPT presentation on the "Status of People Affected by Leprosy with regards to Political Participation" at the South Asia Regional Disability Rights Dialogue on Political Participation, Sri Lanka. PPT FileOpens in a new window.

    Dr. P.K. Gopal was also one of the panelists at DPI’s 9th World Assembly - Global Leadership Training/International Seminar on Disability and Development, Building Human Capital: Realizing SDGs for Persons with Disabilities held in April, 2016.

  2. Induction of People Affected by Leprosy in DPI MNAs: There are many Self-Help Groups and organizations that have been formed by people affected by Leprosy for facilitating their inclusion and development in society. DPI already had people affected by Leprosy and their organisations as members in MNAs in 4 countries: Ethiopia, Nigeria, Nepal and Sudan. DPI further inducted people affected by Leprosy and their organisations as members in MNAs in 4 more countries: Angola, India, Indonesia and Mozambique.
  3. Organize a Side Event during the Conference of State Parties (CoSP) 2015 on Leprosy and Disability:DPI organised the first ever side-event on Leprosy and human rights entitled, "Voices of People Affected by Leprosy" at the Conference of States Parties to CRPD on Wednesday, 10th June, 2015 at the UN Headquarters in New York. This event was supported by The Nippon Foundation, The Permanent Missions of Japan, Ethiopia, Philippines and UNDESA. The panel consisted of very distinguished people like Mr. Yohei Sasakawa - Chairman of The Nippon Foundation/ WHO Goodwill Ambassador for Leprosy Elimination/Japanese Government Goodwill Ambassador for the Human Rights of Persons Affected by Leprosy, Mr. Lenni Montiel - Assistant Secretary-General for Economic Development in the Department of Economic and Social Affairs, United Nations, H.E. Mr. Yoshifumi Okamura - Ambassador Extraordinary and Plenipotentiary, Deputy Permanent Representative of Japan to the United Nations, Mr. Tatsuya Tanami - Executive Director, The Nippon Foundation and Mr. Javed Abidi - Global Chair, Disabled Peoples’ International. The dignitaries spoke at the event regarding the global movement to eliminate the stigma and discrimination associated with Leprosy. Dr. P.K. Gopal - President, IDEA-India and Mr. Jose Ramirez, Jr. - Coordinator, IDEA-USA shared their personal experiences.
  4. Database of 52 organisations and self - help groups of people affected by Leprosy
  5. Program focused on India to enhance awareness and inclusion of persons affected by Leprosy in the disability movement.
    1. National Conference on Leprosy and Disability in India:The first ever National Conference on Leprosy and Disability in India was held on 30th and 31st January in New Delhi. The Conference emphasized on the need to integrate people affected by Leprosy in the mainstream disability movement in India and advocate for significant policy changes vis-a-vis rights concerning people affected by Leprosy. State Partners of APAL and members of the National Disability Network of NCPEDP participated in the Conference.Report on the National Conference on Leprosy and Disability in India: Word File Opens in a new window
    2. Core Group on Leprosy: The Core Group on Leprosy comprising of representatives from the Leprosy and Disability sector has been formed. The first meeting of the Core Group was organised on 30th January, 2015 to brainstorm and discuss the issues for advocacy and to narrow down on one issue for policy change. The Core Group decided to focus on the laws that discriminate against people affected by Leprosy. A Baseline Study on the same was commissioned. A second meeting of the Core Group was held on 5th September, 2015. Baseline Report on Discriminatory Laws against Persons Affected by Leprosy - A Compilation of Efforts and Progress made to Repeal/Amend the Laws Word File Opens in a new window
    3. National Committee on the Rights of Persons with Disabilities (NCRPD) - India, now has a member, who is a person affected by Leprosy.
      Mr. Vagavathali Narsappa, President of Association of People Affected by Leprosy (APAL) is a member of the National Committee on the Rights of Persons with Disabilities(NCRPD). He actively participates in all the meetings and activities of the Committee.
    4. DPI India and its engagement with the issue of Leprosy:
      1. DPI India was represented by Ms. Rama Chari at the National Conference on Leprosy organised by National Human Rights Commission on 17th April, 2015 at Vigyan Bhawan.
      2. DPI India wrote to the Secretary, Ministry of Social Justice & Empowerment to highlight the problems faced by persons affected by Leprosy who have deformities of hand and feet and are thus, unable to give hand and foot prints because of which they are unable to avail government benefits, most important being the AADHAR card. Our letter was acknowledged by the Hon’ble Secretary, Mr. Lov Verma who promised us that Department of Empowerment of Persons with Disabilities will take up the matter with the Unique Identification Authority of India (UIDAI).A letter was sent by Mr. Verma to Shri VS Madan, DG & Mission Director, UIDAI. PDF File Opens in a new window
      3. Mr. Javed Abidi had a meeting with Dr. P.K. Gopal, President - IDEA India, Mr. V. Narsappa, President - Association of People Affected by Leprosy (APAL), Mr. Venu Gopal, Vice President - APAL and Dr. Uday Thakar, Advisor - APAL on 8th July, 2015 to discuss and give feedback on the Draft Report on Discriminatory Laws against persons affected by Leprosy - A Compilation of Efforts and Progress made to Repeal/Amend the Laws and to further plan and strategize on the steps to be taken up for the advocacy vis-à-vis policy change.
      4. Mr. Javed Abidi had a meeting with Dr. M. A Arif, Country Representative, NLR India and Dr. P.K Manglani, Coordinator Projects, NLR Foundation on 22nd July 2015 to discuss and further the agenda regarding submission of recommendation by Law Commission to enact legislation, ‘Elimination of Discrimination against Persons Affected by Leprosy Bill, 2015’.
      5. Mr. Javed Abidi had a meeting with Dr. Vineeta Shankar, Executive Director, Sasakawa - India Leprosy Foundation (SILF) on 7th August, 2015 to discuss the submission of recommendations by Law Commission to enact the ‘Elimination of Discrimination against Persons Affected by Leprosy Bill, 2015.
  6. In view of integrating Leprosy into the larger disability movement worldwide and to facilitate knowledge sharing on this through exchange of views, best practices, case studies and strategies on advocacy efforts, DPI and NCPEDP (DPI India) co-organized a two-way sharing on Leprosy between India, Nepal and Indonesia in New Delhi, India from 7th to 9th November, 2016. A delegation consisting of representatives from the leprosy and disability sectors in Nepal and Indonesia travelled to India for a field visit to the leprosy colonies in and around the National Capital of India. This three day visit also included an interaction with some leprosy organisations in India and a one day 'Roundtable on Leprosy Issues' which was organized in partnership with Department of Empowerment of Persons with Disabilities (Divyangjan), Ministry of Social Justice and Empowerment, India.

Project Location:

All the 18 countries listed above with special emphasis on India, Brazil and Myanmar, and New York for the side event during CoSP.


Phase 2 (Year 1): (1st September, 2017 – 31st December, 2018)

The purpose of the project is to integrate people affected by Leprosy, particularly in countries with higher prevalence of Leprosy into the larger disability movement and help in aligning advocacy efforts of both the Disability and Leprosy sectors.

Objectives:

  • Capacity Building and Leadership Skills.
  • Sharing of knowledge and understanding of the rights based approach along with the required advocacy skills.
  • Representation of persons affected by Leprosy at international disability platforms and high level meetings.
  • Creation of Awareness on the discriminatory laws still prevalent in many countries and the continued discrimination faced by persons affected by Leprosy at multiple levels.

Activities undertaken as on date:

  1. Support participation of people affected by Leprosy and disability leaders in International Disability Conferences:

    DPI has supported the following people/events:

    Representatives from the Leprosy sector in Tanzania and the Disability sectors from Nigeria to the 6th CBR Africa Conference in Zambia: Mr. Mohamedi Mtumbi, a person affected by Leprosy from Tanzania Leprosy Association (TLA) and Ms. Jameelat Lyimo, Secretary, TLA along with Mrs. Ekaete Judith Umoh, Regional Chairperson of DPI Africa from Nigeria were nominated to the 6th CBR Africa Conference held in Zambia from 7th to 11th May, 2018. Mr. Mtumbi and Ms. Lyimo made a presentation on the issue of CBID/CBR in a Humanitarian Crisis at the 'Workshops on Cross-cutting Issues' for development of CBID training packages while Ms. Umoh delivered a keynote address on Day 2 of the Conference.

    Representatives from the Leprosy sector in Myanmar and the Disability sector in Nepal to the 2nd International Conference on Disability and Disaster Risk Management in Bangladesh: Mr. Hla Min Tun, a person affected by Leprosy and Mr. Nyi Nyi Lwin, Head of Programmes, TLMM along with Mr. Shudarson Subedi, DPI Director and Treasurer from Nepal were nominated to the 2nd International Conference on Disability and Disaster Risk Management in Bangladesh from 15th to 17th May, 2018. Mr. Tun and Mr. Lwin made a presentation on Disability inclusion in local governance system and disaster risk management (Experiences from Myanmar) while Mr. Subedi delivered a keynote address at the Conference.

    DPI also co-organized a Side Event during the Conference of States Parties to CRPD in partnership with The Leprosy Mission International (TLMI) at the UN Headquarters in New York on Wednesday, 13th June, 2018: The side event was organized to highlight some of the discriminatory practices against persons with Leprosy related disabilities that impede them in enjoying the rights guaranteed under the CRPD on an equal basis with other persons with disabilities. As part of the side event, a panel discussion on ‘Using CRPD as a normative framework to address human rights of persons with leprosy-related disabilities’ was organized on 12th June, 2018 to bring key stakeholders on a common platform to discuss strategies for ending discrimination and in addressing human rights of those affected by using CRPD as the normative framework. Among the Speaker were Mr. Mohammed Ali Loutfy, DPI Representative to the United Nations in New York and Mr. Masato Seko, Senior Director from The Nippon Foundation.

  2. Induction of People Affected by Leprosy in DPI MNAs and the disability movement in the targeted countries

    There are Self-Help Groups and organizations that have been formed by people affected by Leprosy for facilitating their inclusion and development in society. However, there are also countries where there is no formal association of people affected by Leprosy. DPI has been somewhat successful in inducting people affected by Leprosy and their organisations as members in MNAs in the targeted Leprosy endemic countries. But, this is not a 100% success and a lot of effort needs to go into this initiative. However, due to lack of communication, the distance and also the stigma associated with Leprosy continues to hamper this initiative. Most importantly, looking at Leprosy just as a medical issue and not as a human rights or disability issue is another problem. Work is underway in urging DPI members and associates in inducting people affected by Leprosy and their organisations as members into their national assemblies.

  3. Field visit/Two-way sharing/ Meetings/ Interactions/ Capacity Building Workshops/Trainings, etc. (One meeting/workshop with 4 countries):

    A Field visit was organized on 1st February, 2018 in Leprosy colonies around New Delhi, India for representatives from the Leprosy sector from Bangladesh, Brazil, Myanmar and Tanzania. Also, the representatives from different countries shared their experiences and practices at the session on ‘Sharing of international Perspectives/Global Dialogue and Best Practices on eliminating discrimination against people affected by Leprosy and mainstreaming Leprosy issue into the larger disability movement's on 30th January, 2018 at the National Conference on Leprosy and Disability in New Delhi, India.

  4. Updatation of database of organisations and self - help groups of people affected by Leprosy:

    ONGOING

  5. Program focused on India to enhance awareness and inclusion of persons affected by Leprosy in the disability movement:
    1. National Conference on Leprosy and Disability in India: A National Conference on Leprosy and Disability was organized on 30th and 31st January, 2018 in New Delhi India. The Conference saw discussions around the role of international and national agencies in eliminating Discrimination and Stigma against people affected by Leprosy and sharing of international Perspectives/Global Dialogue and Best Practices on eliminating discrimination against people affected by Leprosy and mainstreaming Leprosy issue into the larger disability movement with representatives from the Leprosy sectors from Tanzania, Brazil, Indonesia, Myanmar and Bangladesh.

      Also, during the Conference, a Capacity Building and Leadership Training Workshop for the Leprosy sector in India was organized to equip them with the CRPD and the recently enacted Rights of Persons with Disabilities Act, 2016 along with emphasis on the importance of Advocacy/Self-Advocacy Strategies, Coalitions, and Networks in elimination of discrimination against persons affected by Leprosy.

    2. Core Group on Leprosy: The Core Group on Leprosy comprising of representatives from the Leprosy and Disability sector formed in Phase 1 of the project was expanded and a few more members were added.

      The first meeting of the Core Group was organized on 20th April, 2018 to take stock of the issue of a separate law for eliminating stigma and discrimination against people affected by Leprosy in India and the ongoing Public Interest Litigation to repeal the 119 discriminatory provisions across State and Central laws against people affected by Leprosy.

      The second meeting of the Core Group on Leprosy was organized on 20th July, 2018 on the sidelines of the two day National Disability Consultation on the Rights of Persons with Disabilities (RPWD) Act, 2016 in New Delhi, India to strategize on the issues to be taken up for advocacy in the coming months.

    3. Advocacy for Policy change in India through Issue Based Campaigns.

Annexures:

  1. Reports/Notes/Flyers:
    • National Conference on Leprosy and Disability in India 2018
    • Flyer for Side-event on Leprosy at the Conference of State Parties 2018
  2. Photos:
    • National Conference on Leprosy and Disability in India
    • Photos of Field visit in India 2018
    • 1st meeting of Core Group on Leprosy Photos
    • 2nd meeting of Core Group on Leprosy Photos
    • Photos of Representatives at the ICD&DRM in Bangladesh
  3. PPT/Word Presentations on Leprosy Issues:
    • PPT Presentation on 'The Role of CBR/CBID in a Humanitarian Crisis for People Affected by Leprosy' by Mr. Mohamedi Mtumbi and Ms. Jameelat Lyimo from Tanzania Leprosy Association (TLA) at the 6th CBR Africa Conference held in Zambia from 7th to 11th May, 2018.
    • PPT Presentation on Disability inclusion in local governance system and disaster risk management (Experience in Myanmar) by Mr. Hla Min Tun from the Leprosy Sector in Myanmar and Mr. Nyi Nyi Lwin from TLMM at the 2nd International Conference on Disability and Disaster Risk Management in Bangladesh from 15th to 17th May, 2018.
    • Presentations made during the National Conference on Leprosy and Disability held in New Delhi, India on 30th and 31st January, 2018:
      • Role of international and national agencies in eliminating Discrimination and Stigma against people affected by Leprosy by Dr. Erwin Cooreman, Team Leader - Global Leprosy Programme, World Health Organization (Regional Office for South-East Asia)
      • Role of international and national agencies in eliminating Discrimination and Stigma against people affected by Leprosy by Dr. Anil Kumar, Deputy Director General (Leprosy), National Leprosy Eradication Programme + Video clip of Pledge being taken + Video Clip of Hon'ble Prime Minister of India, Mr. Narendra Modi on Leprosy Eradication in India
      • The Experience of the Hansen's Disease History Project in the Philippines by Dr. Maria Serena I. Diokno, Professor of History, University of the Philippines
      • Empowering the movement of people with disabilities - Nothing about us without us by Carmen Lucia Lopes Fogaca, President, National Organization of the Physically Disabled of Brazil (ONEDEF) and Advisor, - National Council for the Rights of Persons with Disabilities, Ministry of Justice of Brazil
      • A look into in the past to change the future of people affected by Hansen's disease by Francisco Faustino, Member, National Coordination, MORHAN and Member, Leprosy Commission of the Human Rights Secretariat, Ministry of Justice of Brazil
      • Leprosy is not a problem but the result of the mindset: Inclusive Leprosy Forum is real education medium towards good understanding of leprosy by Paulus Manek, Chairman, PerhimpunanMandiriKusta (PerMaTa) Indonesia
      • Sharing Experiences on Eliminating Discrimination against People Affected by Leprosy and Mainstreaming Leprosy Issues in Myanmar by U Soe Win, person affected by Leprosy from Myanmar and Dr Zaw Moe Aung, Country Director, TLMM
      • Best Practices on eliminating discrimination against people affected by Leprosy and mainstreaming Leprosy issue into the larger disability movement by Mohammed Kamal Uddin, Ex-President and Chief Advisor
      • Advisory Board, Disadvantaged People’s Association (DAPA)
  4. Advocacy:

Impact of the Project

The project will have a two-way impact- on one hand, DPI and the cross-disability movement will be strengthened by the participation of persons affected by Leprosy in the larger disability movement. And, on the other hand, the voices of persons affected by Leprosy against discrimination and for equal rights would be strengthened with the support of larger community. The long term effect would be reduced discrimination and increased awareness on the rights of persons affected by Leprosy in society. In the long run, people affected by Leprosy would be able to lead their life with dignity and as equal citizens.

Click to know more on Leprosy, rights and its high prevalence in the world.