Published 20/7/18

Ahead of the Global Disability Summit on 24th July, Lepra Chief Executive, Geoff Prescott, explains why inclusion must be the key focus, and why new commitments must not overshadow or dilute the work that is already in progress:

The UK will host its first ever Global Disability Summit, in London on 24th July, calling upon decision-makers all over the world to ensure the rights, freedoms, dignity and inclusion for all persons with disabilities.

The summit will not only provide people with disabilities with a platform to be heard but will also provide an opportunity for them to be at the forefront of decision-making that affects their own lives.

By hosting the summit, the UK has taken a positive pivotal role in this area and will urge those attending to make progressive, lasting commitments, with people living with disabilities at the core.

These new commitments signify a renewed enthusiasm for disability rights; however, existing pledges to tackle disability inclusion must not be neglected.

One hundred and sixty-four countries have ratified the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD).

Many governments have passed laws and claim to be tackling disability inclusion. Yet the reality does not match the claims, legislation or the UNCRPD.

Efforts must be intensified to ensure these existing pledges are fully implemented to ensure that no one is left behind.

Inclusion must be at the heart of all aid, development and humanitarian efforts. This is not the same as equality; inclusion requires extra, specific positive steps over and above equality to ensure disabled people are included and integrated into all parts of everyday life.

Scope of disability

A major challenge we must overcome to achieve inclusion is the common view that disabilities are purely physical. Mental health is very slowly becoming recognised as a disability, however, figures regarding mental health issues are generally under-reported and there is still a long way to go to achieve global recognition of this disability.

Yet, disability is actually far broader than just physical and mental. For many, including people affected by leprosy or lymphatic filariasis (LF), disability is also socio-cultural.

For example, being divorced, married-off early, isolated from your community, shunned by peers and prevented from working, result in the same effect of social exclusion and disability. Disability is a limited concept and needs to embrace a holistic and wider scope to include physical, mental and socio-cultural issues.

 

Removing stigma to achieve inclusion

 Lepra was founded in 1924 as the world’s first anti-leprosy agency focused on inclusion. This means helping people affected by leprosy stay in their own community and not confined to “colonies,” hospitals and sanatoria.

From the outset, we have fought against the prejudice and exclusion experienced by people disabled as a consequence of leprosy. Yet to create a permanent change in society’s mindset requires all governments, NGOs and communities to continue to work together to fulfill existing commitments to remove the stigma and promote inclusion. New commitments, whilst laudable, risk muddying the water.

Currently, over 40 million people are living with disabilities caused by leprosy and LF. Many experience severe discrimination and are often ostracised from their community. Together we must continue to remove this stigma and discrimination which currently prevents people affected by leprosy and LF from full integration and inclusion in society.

 Leprosy and LF interventions are complex and include long-term treatment such as self-care.  An integrated mental health component into LF and leprosy interventions is necessary to prevent issues of treatment adherence and outcome.

Our self-help groups in India, Bangladesh and Mozambique help to address all aspects of disability and promote inclusion.

Through the peer to peer support provided by the groups, people can learn new skills needed to regain confidence, independence, and an income to combat the socio-cultural issues associated with the disease.

Our work with communities to educate people about leprosy and LF and remove the stigma ensures people affected can regain their rightful place as active members of their community

Actions speak louder than words

I am proud to attend the summit and recognise that new commitments will help to refocus the world’s eye on disability in the short term; however, commitments which already exist must be fulfilled.  

Rather than add to the pile of unfulfilled promises, our commitment at the Global Disability Summit will be to advocate for meaningful implementation of what has already been claimed and so make it a reality.

You can help us reach disability inclusion sooner - donate now to help us reach more communities and provide the self-help groups and health education needed to remove the stigma and create a fairer, more inclusive society.

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