Effective Lobby for Inclusion of People with Disabilities

Take-aways from DCDD’s Learning Session

On 21st of June Dutch Coalition on Disability and Development organized a knowledge session together with the Leprosy Mission with the theme of “Effective Lobby for Inclusion of People with Disabilities.” We had the honour to receive a guest speaker from India: Pradeep Bagival, who has worked for several UN agencies and USAID as a disability advisor, as well as served as the Assistant Commissioner for Disabilities for the Government of India. Currently, Pradeep works as a Head of Advocacy in Leprosy Mission, combining his passion for advocacy and commitment to disability rights together with helping to ensure that the rights of people affected by leprosy feature high on the agenda of INGOs, national governments and the UN.

In her welcoming introduction, Lieke Scheewe, the Coordinator & Policy Advisor of DCDD, addressed the importance of acknowledging the great diversity which exists within the disability movement. While persons with disabilities all face similar negative assumptions about their abilities, different groups (e.g. people with albinism, autism, visual impairment, physical or intellectual disability or leprosy) all face very different types of barriers and challenges as well. We need to not only take these differences into account in our advocacy, but also stay aware of how we can build on these diversities as a strength of solidarity.

Human Rights-Based Approach

Pradeep emphasized the Human Rights-Based Approach in addressing the discrimination against persons with disabilities. Pradeep views the Human Rights-Based Approach through three pillars: Participation, Non-discrimination and Accountability. For example, political representation of persons who themselves have a disability is an excellent form of participation. Regarding non-discrimination, Pradeep stated that generally the stigma and discrimination towards disabilities has decreased, but minority groups within people with disabilities are still facing enormous stigma.

As one of these minority groups, Pradeep mentioned persons with leprosy. He gave an example from India, where there used to be 119 discriminatory laws against persons with leprosy-related disabilities – they were, for example, denied access to education and politics as well as rights to own property. Fortunately, because of successful advocacy, change is slowly taking place: in 2014, the Indian Ministry of Law and Justice proposed to repeal those laws discriminating persons with leprosy, and in 2019, the Indian parliament passed a bill to remove leprosy as a ground for divorce from 5 personal laws of India. However, a lot remains to be done in working towards ‘non-discrimination’ in practice. Lastly, speaking of accountability, Pradeep encouraged holding the governments accountable, when they are not abiding by the agreements, especially by making use of the human rights mechanisms of the UN.

Principles and Guidelines to Eliminate Discrimination against Persons affected by Leprosy and their family members

‘Principles and Guidelines to Eliminate Discrimination against Persons affected by Leprosy and their family members’ is an initiative of the Human Rights sub-commission from 2004, adopted by the UN General Assembly in 2010 and endorsed by the Human Rights Council. The Principles and Guidelines are legally binding in all 22 leprosy priority countries (i.e. where leprosy is most prevalent) as well as obligatory to implement for countries that have ratified human rights treaties. Pradeep emphasized the importance of the Principles and Guidelines, because the stigma and discrimination does not only affect the persons with leprosy but their family members too. Families affected by leprosy tend to lose their social capital, which is otherwise a crucial safety net, especially in village communities. Families get isolated when neighbours, religious groups and other social structures abandon them due to fear of contracting the disease. Pradeep raised a concern that despite the binding and obligatory nature of the Principles and Guidelines, a review conducted in 2016 revealed that discrimination still continues.

Good governance

Finally, Another important topic of Pradeep’s speech emphasized the crucial importance of good governance – he underlined, that without good governance, we are not going to reach inclusion, neither the Sustainable Development Goals. When asked what to do in the situation where there is a lack of good governance, Pradeep’s answer was clear “Advocate! Civil society has an important role in improving and promoting good governance -– use the media, the UN system, and specific research studies to provide evidence – tell them why exactly good governance is needed.”