Our Position Statements

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Below are a selection of Statements made by The Leprosy Mission regarding the policies of international and national governments. 

Venue: United Nations Head Quarters, New York

Subject: Political participation and equal recognition before the law

Mr Chairperson/Madame Chair and Excellencies,

Article  29 (b) of the CRPD clearly enunciates the responsibility of the state to promote actively an environment in which persons with disabilities can effectively and fully participate in the conduct of public affairs. While the Leprosy Mission strongly articulates for the realization of the rights to political participation and equal recognition before the law for all persons with disabilities, I would like to particularly bring to your notice the denial of these critical rights in the case of persons with leprosy related disabilities. While some estimates suggest that over 3 million people are living with leprosy related disabilities, the actual figures could be much more as leprosy affected persons refuse to be identified due to the fear of stigma. Leprosy is often perceived by different societies as contagious, hereditary and received as a divine punishment. 

Persons with leprosy related disabilities are perhaps the only group amongst people with disabilities who face ‘legal discrimination’ on account of discriminatory legislations that are still force in many countries, denying them the right to political participation and equal recognition before the law. For instance, there are 119 laws in India that discriminatory and prevent persons with leprosy related disabilities the rights guaranteed under the CRPD. The Honourable Supreme Court of India has now directed the Union and the state governments to repeal laws that are discriminatory in nature. Judicial intervention through Public Interest Litigation is perhaps one of the good practices in ensuring right to political participation.

Taking note of the existing stigma and discrimination against persons affected by leprosy, the UN Advisory Committee to the Human Rights Council formulated Principles and Guidelines for elimination of the discrimination against persons affected by leprosy which have been adopted by the UN General Assembly and the Human Rights Council.  These principles and guidelines clearly emphasize the responsibility of the national governments in eliminating discrimination against persons with leprosy related disabilities.

Right to political participation and equal recognition before the law are not stand alone rights that will enable persons with disabilities to participate in political affairs. They have to be reinforced by various other rights guaranteed under the CRPD that are complementary and create a conducive environment for political participation.

We therefore request the honourable  state parties to implement the Principles and Guidelines effectively and also request the CRPD committee to please consider inclusion of a question in the national reports under article 35 seeking information from the 21 leprosy endemic countries that are also parties to CRPD on the steps taken to implement the Principles and Guidelines which will pave the way to political participation and equal recognition before the law for persons with leprosy related disabilities.

Mainstreaming leprosy in the development agenda is a strategy to ensure equality for persons affected by leprosy. As we are aware, stigma attached to the disease is resulting in exclusion and discrimination of persons affected by leprosy who lack access to services provided by the stakeholders such as governments, international development and humanitarian agencies and NGOs. Often persons affected by leprosy are not impacted by the development policies and programmes of national and international entities.

Within the disability movement, disability mainstreaming has become a ‘Mantra’ to ensure equal opportunities, protection of rights and full participation of persons with disabilities.        If TLM has to realize its vision, ‘Leprosy Defeated and Lives Transformed’, it is but imperative to integrate persons affected by leprosy in the development activities of wide range of actors in order to achieve the international development goals such as SDGs.                         Leprosy mainstreaming is perhaps one of the effective ways of identifying those ‘missing millions’ and ensure they have access to leprosy services.

How do we understand the term ‘mainstreaming leprosy?’

While there is no official definition of mainstreaming leprosy at the moment, it is important for us to define the concept. We may define mainstreaming of leprosy on the basis of ‘gender mainstreaming’ which was done in 1997 by the UN Economic and Social Council in the agreed conclusions 1997/2 on mainstreaming gender in all the policies and programmes of the UN.[1]

For the purpose of clarity, TLM may define ‘mainstreaming leprosy’ as follows;

Leprosy-mainstreaming is a strategy of making the concerns and experiences of persons affected by leprosy an integral part of the design, implementation, monitoring and evaluation of relevant policies and programmes in  political , economic and societal spheres so that persons affected by leprosy benefit equally and inequality is not perpetuated due to stigma and exclusion’.

Why should we mainstream leprosy?

The following reasons indicate the need and importance to mainstream leprosy:

  1. To raise awareness about leprosy and its consequences
  2. To ensure earlycase detection and to prevent disabilities
  3. To ensure systematic collection of information and disaggregated data on leprosy and persons affected by leprosy.
  4. To encourage identification, education and examination of contacts of persons affected by leprosy.
  5. To fight public apathy and to keep leprosy high on the political agenda
  6. To combat stigma and exclusion associated with leprosy.
  7. To promote and protect their human rights
  8. To make persons affected by leprosy recipients of global development actions and commitments (SDGs)
  9. To remove barriers that prevent persons affected by leprosy to access services in terms of health, rehabilitation, education , livelihoodsand social protection
  10. To integrate persons affected by leprosy in the development/humanitarian agenda of key stakeholders
  11. To end discriminatory policies, legislationsand practices
  12. To promote inclusion of persons affected by leprosy.
  13. To encourage persons affected by leprosy to become self-advocates and to promote associations of persons affected by leprosy.
  14. To encourage partnership between the private sector, NGOs, CBOs for case detection/referral care and social support.
  15. To reinforce coalition against leprosy with participation of multiple stakeholders
  16. To mainstream persons affected by leprosy and living with disabilities in the disability movement.
  17. To strengthen government ownership, coordination and partnership.
  18. To strengthen surveillance and health information systems for leprosy programme monitoring and evaluation.
  19. To promote access to justice, financial and social support services.
  20. To promote legal empowerment of persons affected by leprosy as poverty and leprosy complement each other and there is a strong bi-directional link between them.
  21. To effectively implement the Global Leprosy Strategy
  22. To promote participation of persons affected by leprosy in the leprosy services
  23. To broaden the donor and funding base for leprosy
  24. To ensure Universal Health Care (UHC) focussing especially on women, children and underserved populations.
  25. To support community based rehabilitation for people with leprosy related disabilities.
  26. Last but not the least, to defeat leprosy and to transform the lives of those affected.

How do we mainstream leprosy?

  • Advocacy and policy research ( integrating leprosy-mainstreaming as one of the core objectives of GF advocacy)
  • Lobbying with target audiences such as governments and UN system to institutionalize leprosy-mainstreaming.
  • Social Mobilization at the community level
  • Further strengthening our partnerships with national governments, sub-national governments, UN agencies , NGOs , CBOs and Media
  • Further developing TLM GFcapacities on mainstreaming leprosy

Conclusion

Collective efforts of TLM and other stakeholders play a crucial role in realizing the vision ‘Leprosy Defeated and Lives transformed’. Accelerating towards a leprosy free world is possible by practicing a ‘no gap policy’[2] by the leprosy stakeholders. No gap policy is a concept that denotes no institution, be it UN system, national governments, NGOs or alliances can achieve a goal on its own. Rather it is the collective network of stakeholders who can achieve leprosy free world by mainstreaming leprosy in their respective agenda.

There are many good practices for leprosy- mainstreaming to learn from gender and HIV –AIDS mainstreaming process which are now accepted largely as models for mainstreaming.

Leprosy mainstreaming however does not replace the need for targeted and leprosy-specific policies, projects and programmes. As in the case of disability, a twin –track approach should be practiced in which we have a combination of leprosy –specific and leprosy mainstreaming actions to achieve the goal of leprosy free world.



[1] www.un.org/womenwatch/osagi/pdf/ECOSOCAC1997.2.

[2] www.un.org/popin/unfpa/taskforce/guide/iatfwemp.gdl.html

11 June 2018, Conference Room 4

Brent Morgan, The Leprosy Mission International

Major questions to be raised are: To what extent should persons with disabilities be represented in and/or be able to cooperate with the national focal points, coordination mechanism and independent monitoring framework? What should be the role of National Human Rights Institutions?

Mr Chairman/Madam Chair and distinguished colleagues from the civil society organizations,

  1. I wish to introduce The Leprosy Mission (TLM) as an International non-government organisation with 143 years of history of working for and with persons affected by leprosy. We are a global network of members active in 32 countries.Every 2 minutes a new case of leprosy is diagnosed and there are more than 3 million people living with a leprosy related disability.Our largest country programme is in India, where more than half of all leprosy cases are found.

     

  2. CRPD is one of the human rights treaties that witnessed massive participation from the civil society organizations during the drafting process and an unparalleled access to the makers of the convention. Civil society actors have a crucial role to play in the implementation of the human rights treaties and it is imperative that the spirit of engagement with civil society that guided theformulation of the CRPD should continue with the process of monitoring the implementation of the convention

     

  3. Article 33 clearly lays down three important steps for implementation and monitoring of the CRPD.The convention provides scope for the national governments to create a coordination mechanism at the national and sub-national level for implementation of the convention. It also emphasizes the role of ‘independent mechanisms’ to monitor the implementation process.Lastly, there is an express provision in the form of article 33 (3) for persons with disabilities and their representative organizations to play a proactive role in the monitoring of the convention.

     

  4. While many countries that have ratified the CRPD have identified the nodal ministry or the department dealing with disabilities as the coordinating body, we see an example of good practice in India. The national disability law of India makes provision for the Central Advisory Board at the federal level and Provincial Advisory Board in each of the provinces to advise the respective governments on the implementation of the rights that are guaranteed under the CRPD. These advisory boards have provided representation for persons with disabilities who can raise issues in the highest national and sub –national platforms regarding implementation of the CRPD.

     

  5. One of the key monitoring mechanisms to ensure effective implementation of the CRPD has been the submission of the national report under article 35. Civil society organizations have a predominant role to play in this exercise. It is essential to know to what extent the state parties have created space for civil society to participate in the preparation of the national reports and in articulating their views on the implementation of the convention. The UN Country Teams (UNCTs) which work in partnership with the national governments should insist on active civil society engagement and the Office of the High Commissioner for Human Rights should play a pivotal role in ensuring that the voice of the civil society is heard by the national focal points and the independent coordination mechanism bodies.

     

  6. The Rights of Persons with Disabilities Act 2016 of India provides for appointment of the Chief Commissioner for disabilities at the federal level and Provincial Commissioners for disabilities at the sub-national level. These offices created under the national disability legislation enables persons with disabilities and their representative organizations to monitor the implementation of the CRPD. The role of the disability commissioners can ensure that the national coordination mechanism provides scope for civil society participation in monitoring the implementation of the convention and also to hold the governments accountable for failing to implement the provisions of the CRPD.

     

  7. It is important for civil society organizations to have information on how many state parties have actually identified the national focal points, an independent coordination mechanism and a platform for the civil society to participate in the implementation and monitoring of the CRPD. This information should be made available with the CRPD committee supported by the Office of the High Commissioner for Human Rights (OHCHR).It is equally important that when non –compliance to article 33 of the CRPD is included in the List of Issues (LoI) by the CRPD Committee while considering the national reports of the state parties, it should become a responsibility of civil society organizations to follow up on this issue and ensure compliance by the governments.

     

  8. Appointment of independent mechanisms such as the National Human Rights Institutions (NHRIs) is one of the effective ways of ensuring that the process of monitoring is impartial and based on the principles of human rights. It is critical for the civil society organizations to note that National Human Rights Institutions identified as independent authorities to monitor the implementation of the CRPD should be compliant to Paris Principles.A survey conducted in 2011 by the Canadian Human Rights Commission[1] highlighted a growing trend to appoint ‘A Category’ accredited National Human Rights Institutions to become independent institutional mechanisms to monitor the implementation under Article 33(2) of the CRPD.

     

  9. Finally, we note another example of preferred practice from the National Human Rights Commission of India, which has played a key role in monitoring the implementation of the CRPD by appointing persons with disabilities as Special Rapporteur on disabilities within the commission to follow up on issues related to implementation of the CRPD. A core committee of disability experts has also being constituted by the Human Rights Commission to advice the commission on the rights of persons with disabilities. This could be yet another preferred practice in the realm of human rights institutions functioning as independent mechanisms at the national level.