Nothing about us without us

Disabled people’s organisations play a crucial role in implementing disability policies, with Timor-Leste offering a good example of success.

The Australian Government’s new policy on disability inclusive development is like many policies: a mix of evidence-based direction-setting and aspirational objectives, based on beliefs about what ‘should’ be achieved in a particular context or sector.

A central element of disability inclusive development policy is support for and reliance on disabled people’s organisations (DPOs).  These organisations comprise people with disabilities who have come together to share experiences and advocate for systemic change, and are increasingly seen as the voice of people with disability in policy and programming processes.  They benefit people with disabilities themselves, as well as governments, development agencies and donors who otherwise struggle to reach this often inaccessible but substantial minority of the population.

The national DPO in Timor-Leste, Ra’es Hadomi Timor Oan (RHTO), began just 10 years ago as the peak body for people with disabilities and has grown significantly, now with over 600 members.  At RHTO’s recent annual general meeting, the chairman, Mr Joaquim Soares, made a speech highlighting achievements, and in particular noting the significance of all staff of RHTO being people with disabilities, who work in most of the 13 municipalities.

Highlighting the RHTO’s critical work in influencing government policy and programs at national and community levels, as well as raising awareness of rights at the community level, his speech was a reminder that RHTO’s current priorities are inclusive education, physical accessibility, livelihoods, advocacy, inclusive health and sports activities. It was also a reminder that all DPOs need to balance core responsibilities to members with responding to emerging opportunities, such as engaging with government and development partners.

Consistent with the nothing about us without us disability inclusion principle, DPOs are best able to identify, articulate, communicate and advocate for policy priorities.  In particular, they have capacity in three areas: to work on the priorities of people with disabilities themselves; responsibility for participating in government policy-setting and implementation; and engagement with aid partners and donor governments.

In Timor-Leste, RHTO’s support enables people with disability to meet, to express their priorities and enhance their understanding of rights.  RHTO helps members to understand benefits of collective approaches, to consider ways to participate in community life, and to benefit from and contribute to national development.  This is resource-intensive work and the process of reaching people with disabilities outside urban areas and facilitating regular meetings has proven challenging, not just in Timor-Leste, but across the Asia Pacific region. Inaccessible transport and negative attitudes, among other factors, limit best efforts.

Until recently, almost no governments in the region had disability policies or laws, but signing the Convention on the Rights of Persons with Disabilities (CRPD) has triggered most to make a start. Progress reporting requirements are now focusing more government attention and DPOs are increasingly asked to participate in policy-setting, implementation and data collection.  This recognition of the voice of people with disabilities is positive but can result in capacity challenges for DPOs.  Expectations of their roles imply DPOs should have specific elements of capacity, but there is little research about this globally except for a Pacific study in 2013.

As DPOs establish governance systems, produce plans and train staff, they also need to develop capacity to participate in government committees.  DPO staff find themselves in complex contexts, one day defining building codes and the next, establishing inclusive education protocols.  Attitudes to people with disability in most developing countries tend to place them at the bottom of the power pyramid, so having a voice and influencing leaders’ decision-making can be a big leap for all concerned.

Engaging with international aid agencies and donor governments can be both beneficial and challenging for DPOs.  In recent decades, some DPO leaders have been active and successful internationally, for example in negotiating the CRPD and ensuring references to disability in the Sustainable Development Goals (SDGs).  Also, DPOs’ roles and responsibilities have been boosted by references in CRPD.  In the RHTO example, an impressive submission on the rights of children with disabilities under the Convention on the Rights of the Child was recently prepared, with support from partners, to supplement the Government of Timor-Leste’s report, which hardly mentioned children with disabilities. In Pacific countries, regional approaches have enabled DPOs to access some capacity and program support, but funding can be short-term and uncertain.  Even when partners have a good understanding of the rights of people with disabilities, differences in cultural values and priorities require respectful navigation.

Access to sustainable resources and respectful support are critical for DPOs’ existence and their ability to respond to both members’ and partners’ expectations. Government, partner and donor policy implementation, including Australia’s disability inclusive development policy, is more likely to succeed when DPOs can contribute confidently and when their priorities are understood and respected.

Support for DPOs needs to be long-term to enable them to achieve their own plans and capacity objectives.  The emerging capacity of DPOs should be taken into account when partners expect engagement on their own priorities.  As governments, partners and donors learn about effective disability inclusive approaches, so will DPOs develop capacity to engage with governments and global partners: both will take time.