Enhancing the Relationship between the Disability Movement and People Affected by Leprosy

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: 
   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.
   .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.
   .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: 
   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  
   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.  
      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.
   1. 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.
      • Report on Two-way sharing (Field visit)
      • Report on the Roundtable on Leprosy Issues
      • Photos of Two-way Sharing (Field visit)
      • Photos of Roundtable on Leprosy Issues
      • Photos of interaction with SILF
      • Presentation made by delegation from Nepal
      • Presentation made by delegation from Indonesia
      • Presentation made by APAL from India
   • Leprosy In Our Time 
   • “The Eye of Exclusion” by Mr. Jose Ramirez Jr. at the side event on leprosy titled, “Voices of People Affected by Leprosy” on 10th June, 2015 at the CoSP 8 at UN Headquarters, New York 
   • “Inclusion is a Matter of Justice” by Dr. P.K. Gopal at the side event on leprosy titled, “Voices of People Affected by Leprosy” on 10th June, 2015 at the CoSP 8 at UN Headquarters, New York 

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.

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 countriesThere 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:
   • News about the DPI – TNF partnership on the Phase II of the Leprosy project on ‘Enhancing the Relationship between the Disability Movement and People Affected by Leprosy published in the August-September 2017 issue of the UN Enable Newsletter: https://www.un.org/development/desa/disabilities/resources/united-nations-enable-newsletter.html
   • Remove legal clauses ‘discriminatory’ to leprosy-affected: https://www.business-standard.com/article/pti-stories/remove-legal-clauses-discriminatory-to-leprosy-affected-118013001360_1.html
   • TNF, Disabled People’s International join hands to end discrimination, stigma against people affected by leprosy: https://www.business-standard.com/article/news-ani/tnf-disabled-people-s-international-join-hands-to-end-discrimination-stigma-against-people-affected-by-leprosy-117122600722_1.html
   • Japanese Billionaire Speaks Up for Leprosy Patients: http://www.civilsocietyonline.com/interviews/not-just-cure-but-integrate-people-with-leprosy-into-society/
   • DPI India’s #EndLeprosyDisacrimnation #LeprosyFreeMinds Campaign to Repeal 119 Discriminatory Laws against people affected by Leprosy in India: @ncpedp_india & @NCPEDP
   • Panel discussion on leprosy issues on Radio Udaan: https://www.youtube.com/watch?v=BGs0RVfVIRw
   • Compilation of 119 discriminatory laws against people affected by Leprosy in India
   • Compilation of 119 discriminatory laws against people affected by Leprosy in India (State-wise)
   • Supreme Court Order (10th September, 2018) on the PIL filed by Vidhi Centre for Legal Policy for repealing the 119 discriminatory laws against people affected by Leprosy in India
   • Submission filed by Vidhi Centre for Legal Policy in compliance of the directions issued by Supreme Court on 10th September, 2018
   • Supreme Court Order dated 14th September, 2018 on the PIL – Pankaj Sinha vs. Union of India and others

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.

Objectives:

• The integration of the Leprosy sector into the larger disability movement, worldwide
• To bring about an increase in awareness on the rights of persons affected by Leprosy at international and national platforms and concerted efforts by the Leprosy and the Disability sector towards the elimination of discrimination against persons affected by Leprosy (especially in the countries targeted in the project – Myanmar, Bangladesh and India)
• To bring visibility to Leprosy, a neglected disability and persons affected by Leprosy by bridging the gap between the Leprosy and the Disability sectors particularly in countries with high prevalence rate by effectively using the Convention on the Rights of Persons with Disabilities (CRPD) as a tool to advocate for their equal rights.

Support participation of atleast 2 people affected by Leprosy and Disability leaders to further the cause of Leprosy at international disability conferences and organizing a side-event at the Conference of State Parties 2019

a) Participation at the 11th UNCRPD pre-session in Geneva

DPI has been able to support the participation of 2 people affected by Leprosy and disability at the 11th UNCRPD pre-session on 8th April 2019

• Mr. Mohammed Kamal Uddin from Leprosy People`s Empower in Partnership for Entitlement and  Reformation Society (LEPER) and Mr. Iftekhar Mahmud from DPI Bangladesh (Protibondhi Nagorik Shangathaner Parishad – PNSP)
• The delegation submitted a joint country paper and also read the statement from the floor on the situation of people affected by Leprosy and their relation with the mainstream disabled people’s organizations before the UNCRPD Committee
• After the presentation, the UN committee members and Mr. Iftekhar Mahmud deliberated on the issue of Leprosy. The delegation also had a chance to meet one-on-one with one of the UNCRPD Committee members who expressed their interest to know about the development on elimination of leprosy in Bangladesh.

 

Caption:Mr. Mohammed Kamal Uddin from Leprosy People`s Empower in Partnership for Entitlement and Reformation Society (LEPER) and Mr. Iftekhar Mahmud from DPI Bangladesh (Protibondhi Nagorik Shangathaner Parishad – PNSP) addressing the gathering at the 11th UNCRPD pre-session in Geneva

b) Side-event on Leprosy at the Conference of State Parties at UN Headquarters in New York

DPI organized a side-event, ‘A Human Rights-Based Approach to Address Stigma and Discrimination against Persons with Disabilities’ during the 12th session of the Conference of State Parties at the UN Headquarters in New York on 13th June, 2019. DPI co-organized the event with The Leprosy Mission International and with the co-sponsorship of The Office of the United Nations High Commissioner for Human Rights (OHCHR), The Nippon Foundation (TNF) and Transforming Communities for Inclusion (TCI) – Asia-Pacific Region. The event was chaired and moderated by the CEO of The Leprosy Mission International, and addressed the different cultural and legal injustices being faced by people affected b Leprosy around the World, mainly Bangladesh, Nepal, Nigeria and India. The event was also addressed by two representatives of the United Nations CRPD Committee, Mr. Samuel Kabue and Mr. Monthian Buntan who is also the

Acting Vice Chair of the Committee and Ms. Mudita Bajracharya, First Secretary and Third Committee Expert at the Permanent Mission of Nepal to the United Nations in New York. This was also an opportunity to present the outcomes of DPI’s ongoing project on Leprosy DPI Africa Regional Chair, Ms. Ekaete Judith Umoh represented DPI on the panel.

Photo caption: Some glimpse of the side event, using the human rights-based approach to address stigma and discrimination against citizens with disabilities organized by DPI at CoSP12, UN HQ

4. Project activities in Myanmar

a) Two rounds of Leprosy Awareness Campaign in 3-4 targeted regions of Myanmar with high detection of new cases of Leprosy

TLMM coordinated with National Leprosy Control Programme (NLCP) and Myanmar Federation of Persons with Disability (MFPD) for conducting the Leprosy Awareness Campaigns in Myanmar. TLMM also directly engaged with people affected by Leprosy during the LAC campaigns to empower them to raise their voice and claim their rights and inducting them as peer educators who are also actively involved throughout LAC campaign preparation, awareness raising about leprosy and community mobilization for clinic to be screened to detect new cases.

• During Jan to Feb 2019, NLCP conducted LAC in 55 townships in Naypyitaw, Mandalay, Sagaing, Shan, Mgway, Ayarwaddy and Bago. DRCs teams coordinated and collaborated in 18 LAC teams in 16 Townships apart from Naypyitaw and Shan State
• Around 8 DRCs (Mandalay, Pakkoku, Monywa, Ayartaw, Shwebo, Taungoo, Phado, Mawlamyingyun) actively facilitated the LAC teams in the pocket areas for early case detection for new leprosy cases, timely referral and prompt treatment
• DRC teams also facilitated the participation of 25 persons affected by Leprosy champions to mobilize community and be actively involved in LAC teams as peer educators who raised their voices against the discrimination faced by people affected with Leprosy by sharing their own experience
• DRC teaams also supported the LAC team for increased numbers of active case detection and the perspectives of community regarding the social discrimination and stigmatization on leprosy

Coordination meeting with NLCP and Township Medical Officer from 30 RHC for LAC

• In May 2019, NLCP conducted the TMO meeting with planning of LAC in 30 RHCs which were selected by NLCP due to high prevalence (pocket health centers in which more than 10 new leprosy cases were detected within last 5 years).
• NLCP encouraged PALs to participate in LAC activities as peer educators and also in formation of LAC teams with BHS and LCP staff at Township level. TLMM also advocated NLCP about the key findings of 2019 baseline survey focusing on the knowledge of the communities and concerns on leprosy and disability.
• NLCP and TMO accepted the key findings results and committed to reflect the key messages of LAC focusing on those findings. TLMM advocated NLCP to double the number of LACs and NLCP agreed on another 30 LACs in near end of the year 2019.

LAC 2019 (Round 1 – Phase 1):

From 10th to 16th June 2019, LAC round 1 – Phase 1 had been done in 105 villages in 15 RHCs. Statistic data from DRC teams show that a total 9,169 persons attended the information sessions and 2,923 persons attended the clinic. Also, 18 numbers of persons affected by Leprosy champions were invited and were involved in LAC as peer educators.

b) Participation of people affected by Leprosy in UNCRPD reporting process and their training and capacity building for the same.

A delegation from Myanmar consisting of persons with disabilities from Myanmar Federation of Persons with Disabilities (MFPD) and a person affected by Leprosy, Mr. U Soe Win along with the TLMM Country Director, Dr. Zaw Moe Aung participated at the 11th UNCRPD Committee pre-session in Geneva in April 2019. The delegation including Mr. U Soe Win made an oral statement in front of the CRPD committee on 10th April 2019 during Myanmar’s country briefing and answered the CRPD Committee’s questions.

The delegation met with Mr. Jun Ishikawa, Member, UNCRPD Committee who has been designated as Myanmar Rapporteur from the CRPD Committee to discuss for Myanmar to include Leprosy as the list of issues.

The delegation also met with Victoria Lee, Disability Advisor from OHCHR, Tromel Esteban, ILO Senior Disability Specialist and Cristina Michels – Human Rights Officer supporting the mandate of the Special Rapporteur on the Rights of Persons with Disabilities. Debriefing with International Disability Alliance was also conducted that day.

Photo caption:Mr. U Soe Win along with the TLMM Country Director, Dr. Zaw Moe Aung participated at the 11th UNCRPD Committee pre-session in Geneva in April 2019.

5. Project Activities in Bangladesh

a) Atleast three National/Regional/State/District level Conferences on Disability and Leprosy Issues OR Capacity Building & Leadership Training Workshops in Bangladesh

DPI Bangladesh/PNSP organized a one and a half day Capacity Building Workshop for People Affected by Leprosy and Persons with Disabilities on 29th and 30th June, 2019 at Shilpokola Academy, Meherpur, Bangladesh. A total of 40 participants attended the meeting.

DPI Bangladesh/PNSP organized a one and a half day Capacity Building Workshop for People Affected by Leprosy and Persons with Disabilities on 29th and 30th June, 2019 at Shilpokola Academy, Meherpur, Bangladesh. A total of 40 participants attended the meeting.

The workshop was jointly co-organized by PNSP and TLMIB with sessions on the situation of Leprosy in the country, on the understanding of the Convention on the Rights of Persons with disabilities (CRPD) and the definition of disability, the medical model and right base approach, main policies of CRPD and some major articles.

The workshop was followed by followed by group work between people affected by Leprosy and persons with disabilities to find out the challenges faced by people affected by Leprosy and persons with disabilities; and role the society and institutions can play to eliminate stigma and discrimination against people affected by Leprosy.

Also, a joint plan of action for one year was prepared for Meherpur to work on joint advocacy.

6. Project activities in India

a) Atleast eight State/District level Conferences on Disability and Leprosy Issues OR Capacity Building & Leadership Training Workshops in India

DPI India has organized two State level capacity building programmes so far. The third programme scheduled to be held in this review period had to be cancelled due to a cyclone which devastated the coastal areas of the State.

1. Jharkhand State level Workshop

The Jharkhand State level programme was organized on 22nd April, 2019 in partnership with APAL state partners and the state disability partner, Jharkhand Viklang Manch. A total of 60 members participated the State Commissioner of Disabilities was the Guest of Honor and in his address to participants assured all cooperation of his office in addressing rights violations of persons affected with Leprosy.

As a result of this programme, APAL Jharkhand members were empowered with knowledge and linked to the State level DPO Jharkhand Viklang Manch for joint advocacy and mainstreamed into the disability movement. A highlight of this programme was establishing links with human rights lawyers for legal services and counseling on legal matters.

An immediate outcome of this programme was the participation of the Jharkhand Viklang Manch in a technical training of persons affected by Leprosy in Nav Jeevan Ashram, Baradwari and Hindi Ashram in Buramese on 2nd May, 2019.

Photo caption: Jharkhand (India) State level programme was organized on 22nd April, 2019 in partnership with APAL state partners and the state disability partner, Jharkhand Viklang Manch.

2. West Bengal State level Workshop

The West Bengal State level programme was organized in Kolkata on 24th April, 2019 in partnership with APAL state members and DPI India’s State partner Sanchar, a DPO. The training programme saw a total participation of 80 members – APAL West Bengal members, representatives from Disability Action Forum (DAF), human rights lawyers and members from Sanchar.

Human Rights lawyers addressed provisions in the RPWD Act and offered APAL members legal counseling on issues concerning them. And, other sessions included awareness and understanding on the directions of Supreme Court in Pankaj Sinha v. UOI.

As a result of this programme, APAL West Bengal members were empowered with knowledge and linked to the State level DPO Disability Action Forum for joint advocacy and mainstreamed into the disability movement. A highlight of this programme was establishing links with human rights lawyers for legal services and counseling on legal matters.

Photo caption: West Bengal State level programme was organized in Kolkata on 24th April, 2019 in partnership with APAL state members and DPI India’s State partner Sanchar, a DPO

Other State Level Training Programme

DPI India also actively participated in a similar programme/workshops/trainings organized by APAL in the State of Bihar on 14th June, 2019 and also supported them by arranging for resource persons who were Human Rights lawyers and invited a State level Disabled Peoples’ Organization, Bihar Viklang Adhikar Manch for their programme. APAL Bihar was mainstreamed into the state disability rights movement and linked to socially minded human rights lawyers for pro bono legal services and counseling.

DPI India also provided similar support to APAL in the trainings organized in Indore in Madhya Pradesh on 20th June, 2019. APAL Madhya Pradesh has been linked to the Madhya Pradesh Viklang Manch for joint advocacy.

2. Repeal of 119 discriminatory laws

DPI India filed RTIs with Central Government Departments under the purview of the Ministry of Health & Family Welfare, Ministry of Law & Justice, Ministry of Consumer Affairs, Food & Public Distribution and the respective State Departments to assess the implementation of the Supreme Court order.

RTI’s were filed in 19 states and union territories as well as the Central Government in Delhi. Responses were received from the different departments of 15 states however, some State Departments for which the status is still pending, there has been no further information received. Also, 4 states rejected the applications on grounds of non-receipt of payment as prescribed in the State rules (Jammu & Kashmir, Odisha, Kerala and Tamil Nadu).

3. Representation on ‘Recommendations to strengthen the legal regime concerning persons affected by Leprosy’

With respect the discussions held during the Core Group meetings, a draft representation on “Recommendations to strengthen the legal regime concerning persons affected by Leprosy” has been prepared by the Vidhi Centre for Legal Policy with active involvement of Core members including organizations of persons affected with leprosy to be used for advocacy purposes with the government. This representation includes:

• Recommendations for amending the Rights of Persons with Disabilities Act 2016 to enable persons affected with leprosy and their families access rights and entitlements provisioned in the law
• Introduction of specific measures on Certification and Definition of persons affected by Leprosy under the RPD Act, 2016 in line with directions of the Supreme Court in Pankaj Sinha v. UOI
• Highlights key provisions of the EDPAL Bill and the Private Member’s Bill that should be included in the proposed new legislative steps that are to be taken by the Central Government which is to contain positive measures for the welfare of persons affected by leprosy and which will also repeal any existing discriminatory provisions in other laws

d) Nation-wide Leprosy Awareness Campaign in India

A delegation from India consisting of a person affected by Leprosy and a person with disability were scheduled to participate in the 11th UNCRPD Committee pre-session in Geneva in April 2019.

The delegation not only participated in the India country briefings held on 11th April but, also requested for a thematic briefing on Leprosy infront of all the members of the UNCRPD Committee on 4th April, 2019. DPI India partnered with ILEP and read a joint statement on Leprosy during the thematic briefing along with other ILEP partners. The UNCRPD Monitoring

Committee gave an assurance that the issues raised would be addressed in the List of Issues (LOI) to be issued to the Government of India. The LOI’s have now been issued to the Government of India and include questions on Leprosy and the Government is expected to respond to this prior to the passage of the Concluding observations by the CRPD monitoring Committee in August/ September 2019.

Reducing Stigma and Discrimination against People affected by Leprosy:

The project’s overall objective is to reduce stigma and discrimination against people affected by Leprosy in society. However, the specific objectives of the project for this phase were:

• To empower people (youth) affected by Leprosy by using a rights-based approach to address stigma and discrimination.
• To engage people affected by Leprosy in the Disability movement and ensure their representation in all disability platforms.
• To create awareness of the issues and rights of people affected by Leprosy in society.
• To advocate for policy change/implementation vis-à-vis the rights of people affected by Leprosy in the targeted country.

Activities undertaken during the phase of implementation are as follows

Three side-event on Leprosy and disability-related issues were organized during the Conference of State Parties 2020 and 2021

Side-event on Leprosy at the 13th session of the Conference of State Parties (CoSP) to the CRPD

Disabled Peoples’ International (DPI) organised a side event on ‘The intersecting challenges facing women affected by leprosy-related disabilities in accessing their rights to health, livelihood, and family and how these can be effectively addressed using the CRPD framework before and after Covid-19’ on 3rd December 2020. DPI co-organised the event with Leprosy Mission International (TLM), Sasakawa Health Foundation (SHF) & UNDP Lao PDR.

The objective of the side event was to shed light on the barriers faced by women affected by leprosy-related disabilities when accessing their human rights, particularly the rights to health, livelihoods, and family. The side event identified how the CRPD framework can support women in addressing and overcoming these challenges, both through advocacy at the United Nations and at the national level. The panel shared recommendations for women affected by leprosy, for federal governments, NGOs, and DPOs and addressed how the Covid-19 pandemic has had an impact on women affected by leprosy-related disabilities accessing their rights. The event was moderated by Mr Brent Morgan, President, the International Federation of Anti-Leprosy Associations (ILEP) and International Director, of The Leprosy Mission International. The event was also addressed by Ms Lilibeth Evarestus, a Legal Practitioner and woman affected by Leprosy from Nigeria Ms Jayashree Kunju, CEO, IBAS GLOBAL, and woman affected by Leprosy from India Ms Alice Cruz, UN Special Rapporteur on the elimination of discrimination against persons affected by Leprosy and their families Mrs Maya Ranaware, DPI Representative from the Association of People Affected by Leprosy (APAL) in India and a woman affected by Leprosy, Dr Catherine Pyong, Deputy Resident Representative, United Nations Development Programme, Lao PDR and Mr Amar Timalsina, President, International Association for Integration, Dignity and Economic Advancement (IDEA) in Nepal.

Link of the Youtube Video –

Side-event on Leprosy at the 14th session of the Conference of State Parties (CoSP) to the CRPD

Disabled Peoples’ International (DPI) organised a side event on “Work and Employment Situation of Persons Affected by Leprosy amid the Coronavirus Pandemic and Efforts to Resolve the Challenges They Face” on 18th June 2021. DPI co-organised the event with the Sasakawa Health Foundation (SHF), the Permanent Mission of Japan, the Permanent Mission of India, the Permanent Mission of Portugal, the Permanent Mission of Brazil and the Global Partnership for Zero Leprosy.

The objective of the side-event was to deepen the discussion among various actors on Article 27 of the CRPD with particular reference to the estimated 3-4 million people living with visible impairments or disabilities due to Leprosy. Through this side-event, we ensured the inclusion of socioeconomic concerns of people affected by Leprosy in the larger disability agenda for ‘Building Back Better’ amid the ‘COVID-19 response and recovery’ and the need for States to provide equal work, employment and livelihood opportunities for them to ‘live independently’ and be ‘included into the community.’ Specifically, the side-event sought to share the current situation and experiences of persons affected by Leprosy who have lost their livelihoods and face difficulties during the current pandemic and to also, come up with practical approaches (programme and policy level) on how supporting organizations and governments can work together to promote the financial independence of persons affected by Leprosy to ensure that ‘No One is Left Behind.’

The event was moderated by Mr Brent Morgan, President, of the International Federation of Anti-Leprosy Associations (ILEP) and International Director, of The Leprosy Mission International. The event was also addressed by H.E. Mr Ronaldo Costa Filho, Ambassador, Permanent Representative, Permanent Mission of Brazil to the United Nations. H.E. Mr Nagaraj Naidu Kakanur, Ambassador, Deputy Permanent Representative, Permanent Mission of India to the United Nations.  Mr Eduardo Ramos, Minister Counsellor, Permanent Mission of Portugal to the United Nations. Ms Alice Cruz, UN Special Rapporteur on the elimination of discrimination against persons affected by Leprosy and their families, Mr Sachin Vasant Kambale, Saksham Kushthantey Swabhimani Sansthan, India, Mr Francisco Faustino Pinto, Movement for the Reintegration of Persons Affected by Hansen’s Disease, Brazil, Advocate Pankaj Sinha, Member Core Group on Leprosy, Disabled Peoples’ International, Dr Takahiro Nanri, Executive Director, Sasakawa Health Foundation and Vice Chair, Global Partnership for Zero Leprosy,  Mr Geoff Warne, CEO, the International Federation of Anti-Leprosy Associations and H.E. Mr Tetsuya Kimura, Ambassador, Permanent Mission of Japan to the United Nations.

Link of the video –

Side-event 2 on Leprosy at the 14th session of the Conference of State Parties (CoSP) to the CRPD

Disabled Peoples’ International (DPI) organised a side event on ‘The impact of the Covid-19 pandemic on persons affected by leprosy-related disabilities and the fight to defeat leprosy’ on 19th June 2021. DPI co-organised the event with the Sasakawa Health Foundation (SHF), The Leprosy Mission International, UNDP Lao PDR and Sasakawa Health Foundation (SHF).

The objective of the side event was to consider the impact of the Covid-19 pandemic on persons affected by leprosy. The socio-economic impact of the pandemic on marginalised, disadvantaged and fragile communities has been disproportionate. Persons affected by leprosy have not been exempt from that. Loss of livelihoods and incomes have led to unemployment, meanwhile, leprosy-related disability will grow significantly due to the pandemic. We invited persons affected by leprosy-related disabilities to speak about their experiences of the pandemic and what the post-Covid future holds for them.

The event was moderated by Mr Mathias Duck, Global Advocacy Manager, The Leprosy Mission International. The event was also addressed by Dr Indra Napit, Senior Orthopaedic/Reconstructive Surgeon, The Leprosy Mission Nepal Mr Venu Gopal, Vice-President of the Association of Persons Affected by Leprosy, India (DPI Representative), Ms Birke Nigatu Teka, Ethiopia, Past Winner of TLM’s Wellesley Bailey Award, Mr Faustino Pinto, Morhan, Brazil, Ms Asebe Garba, Amanawa Leprosy Community, Nigeria, Mr Hamisu Wazam, Amanawa Leprosy Community, Nigeria and Mr Pradeep Bagival, United Nations Development Programme, Lao PDR.

Link to the video –

Report on the impact of Covid-19 on the employment of persons affected by Leprosy submitted to the UNCRPD Committee as the draft General Comment on Article 27 of the CRPD

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Three state-level capacity-building workshops for Youth affected by Leprosy & youth from

families of persons affected by Leprosy organised

Hyderabad – Telangana

The Telangana state-level capacity building workshop was organised in Hyderabad on 28th January,  Friday,  2022 in partnership with the Association of People affected by Leprosy (APAL) state members and DPI India’s State partner Network of persons with disability Organizations (NPdO) titled “The Capacity Building for Youth affected by Leprosy on the Rights of the Persons with  Disabilities Act, 2016.” The training programme saw a total participation of 50 members – APAL Telangana Members, representatives from the Network of persons with disability Organizations (NPdO), and the youth affected by Leprosy belonging to the families of Leprosy cured and their colonies, who are more vulnerable, marginalized and neglected Section in the Civil Society. The objective of the workshop was to aware and Sensitize the youth belonging to the families of Leprosy Cured (LC) about the Rights of the Persons with Disabilities Act, 2016. which is the backbone legislation to empower the Person with Disabilities, and state government provisions, entitlement and to Act as Facilitators and Catalyst of their families, in turn,  to play an advocacy role in their local Community and Civil Society.

The outcome of the workshop was that the trained youth were awarded its rules about the relevant provision of the Persons with Disabilities Act, 2016 which is the important primary legislation for Disabled people in INDIA. Ex the Rights-based provisions Like 5% reservation in all welfare and development schemes,  4% in employment,  5% in the double bedroom, health, livelihood, and rehabilitation. Moreover, the workshop enhanced the Capacity building of the Youth on the rights of Persons with Disabilities Act, 2016 in turn to play the advocacy role in their local Community and Civil Society. Further, the target group of people were sensitized about their rights and responsibilities in Education, Employment, Rehabilitation, and mainstreaming to empower them without burden either to society or family as valuable human resources and an asset.

Jharkhand – Jamshedpur

The Jharkhand state-level capacity building workshop was organised in Hyderabad on 4th February 2022 in partnership with DPI India’s state partner, Jharkhand Viklang Manch & Kusth Kalyan Samiti. The training programme saw a total participation of 50 members from Leprosy ashrams, representatives of all the aforementioned organisations.

As a result of this programme, the participants were empowered with knowledge and linked to the State level DPO Disability Action Forum for joint advocacy and mainstreamed into the disability movement. A highlight of this programme was establishing links with human rights lawyers for legal services and counselling on legal matters.

Rourkela – Odisha

The Odisha state-level capacity building workshop was organised in Hyderabad on 29th January 2022 in partnership with DPI India’s state partner, the Association of People affected by Leprosy (APAL) state members and Odisha State Disability Network (OSDN). The training programme saw a total participation of 50 members from Leprosy ashrams, representatives of all the aforementioned organisations.

The objective of the training was to train the youths about the key features of certain Acts such as the RPWD Act 2016, RTI Act 2005, RTE Act 2009 etc. It also aimed to strengthen the capacity of these youths on different advocacy strategies and facilitate them to develop strategic plans to take up issues related to persons affected by leprosy and ensure advocacy on leprosy as part of the inclusive mainstream disability advocacy. 59 Participants from 20 districts of Odisha participated in this training cum capacity-building workshop. Dr. Sruti Mohapatra – founder of Swabhiman, Prof. R. K. Biswal – Asst. Prof. NIT-Rourkela, Sri Kartik Pandab – the Convener of the OSDN-Sundargarh district chapter and Mihir Mohanty – the Director of the Program in Swabhiman, were the key resource persons during the training program. The session helped the participants in their future course of action in achieving leprosy-inclusive advocacy for mainstreaming disability in the state of Odisha.

Three-part online lecture series organised to empower youth affected by Leprosy

Three-part Lecture series empowering youth affected by Leprosy was organised on 3rd Oct, 10th Oct, and 20th Nov 2021 organised that was aimed at giving the participants a general overview on drafting the RTI application, informing on RPWD Act 2016 for promoting and protecting the rights and dignity of people with disabilities in various aspects of life – educational, social, legal, economic, cultural and political and making the participants aware of the basics of the financial system and set up along with the various means and available schemes/ banking facilities.

Three online meetings of the Core Group on Leprosy

Three core group meetings were organised on 29th July 2020, 24th Sep 2021, and 5th Jan 2022. 11 Core Group members comprising representatives from the disability sector,

Leprosy sector, legal background, experts, etc. attended the meeting.

The issue of NHRC – writ petition status filed in the Supreme Court challenging the constitutionality of provisions discriminating against persons affected by leprosy was discussed. Moreover, the current position of eviction of Ram Nagar Colony in Bihar was also discussed. Finally, it was decided to widen the ambit of core group members to incorporate other leprosy organisations. In order to take stock of the advocacy initiatives, lobbying at the Centre and State level, Representation made, RTIs field and the PIL update, we decided to organize a meeting of the members of the Core Group on Leprosy. This issue of NHRC – writ petition status filed in the Supreme Court challenging the constitutionality of provisions discriminating against persons affected by leprosy was discussed. Moreover, the current position of eviction of Ram Nagar Colony in Bihar was also discussed. Further, discussions on the way forward with the Leprosy project given the current pandemic situation were discussed at the meeting. The members also worked on identifying key issues for advocacy during the meeting. Finally, it was decided to widen the ambit of core group members to incorporate other leprosy organisations.

Online Roundtable/Panel Discussion on Leprosy

Disabled Peoples International (DPI) in association with The Leprosy Mission International (TLM) organised a panel discussion on Leprosy on World Leprosy Day 2022, 30th Jan 2022 on the topic ‘Global Panel Discussion – COVID-19: Challenges and Lessons for Leprosy and other NTDs.’ The objective of the discussion was to hear from a geographically diverse panel on their experience of dealing with the challenges, and what opportunities we see during this time of the pandemic. The panel discussed that for people affected by leprosy and other neglected tropical diseases (NTDs), COVID-19 has been a similar experience. The Future pathway for Leprosy eradication in India was discussed. Over 300 participants including government officials, Organisations working in the Leprosy sector, and DPOs attend the event.

The recording of the session can be watched at –

Crowd-sourced film on Leprosy awareness selected for the film festival on World Leprosy Day

DPI supported the production of several films on Leprosy awareness that was screened during the special film festival on World Leprosy Day.

 

Link of the film –

Link of Film 2 –

A short film named ‘Abandoned’ on the persons affected by Leprosy

India is home to the highest number of leprosy-affected people across the globe. DPI produced a film ‘Abandoned’ highlighting the daily issues of the leprosy-affected people in Srinivaspuri, New Delhi.

 

Link –

RTIs filed in multiple states seeking information related to the steps taken to implement the directions issued by the Supreme Court in the Order dated 14 September 2018 in Pankaj Sinha v Union of India (WP(C) No. 767 of 2014)

DPI India filed RTIs with Central Government Departments under the purview of the Ministry of Health & Family Welfare, Ministry of Law & Justice, Ministry of Consumer Affairs, Food & Public Distribution and the respective State Departments to assess the implementation of the Supreme Court order.

RTI’s were filed in 19 states and union territories as well as the Central Government in Delhi. Responses were received from the different departments of 15 states however, in some State Departments for which the status is still pending, there has been no further information received.

DPI India report on & Locked Down and Left Behind- Status of Persons with Disabilities in India during the Covid -19 Crisis

(PDF Attached :- LOCKED DOWN and LEFT BEHIND.pdf)

Key recommendation for leprosy inclusive Covid-19 response