Feature Issue on Crisis Management for People with Intellectual, Developmental, and Other Disabilities

The discourse of disability inclusion in the disaster context has been my core interest for more than a decade. Through my professional work with an international non-governmental organisation (NGO) that pioneered disability-inclusive disaster management in Indonesia – Arbeiter-Samariter-Bund Office for Indonesia and The Philippines (ASB IDN PHL) – I learned about efforts to realise disability inclusion in disaster and humanitarian in practice, including the experience of working with people with disabilities themselves. Only recently did I shift to understanding the issue from academic and research lenses, which allows me to critically question and understand disability-inclusive disaster management practices, including those of my own.

The views from these two quite distinct vantage points, however, paint a similar picture: research and community practices that take into account the rights, needs, and participation of people with disabilities have not been widely discussed and materialised accordingly, leading to a scarcity of knowledge and practice on responding to the specific needs of this community group in disaster emergencies. This article presents my reflections, based on what I practiced and investigated, on disability-inclusive disaster preparedness and response at the policy and practice level, underpinned by meaningful involvement of people with disabilities, using Indonesia as a case example. I then draw recommendations for future advancement of sustained community inclusion in the disaster context by encouraging equal partnership between people with disabilities and humanitarian actors.

The emerging role of people with disabilities in disaster situations in Indonesia

Disability organisations were generally not known as leaders of community intervention initiatives. Studies that place attention on organisations in low and middle-income countries found that they performed three main functions: advocacy, service provision, and skills development. Primarily, their function was as advocacy organisations whose role was to sensitise government and promote disability rights. In their service provision role, the organisations act as ‘channelling’ organisations to deliver aid and services funded by government or private donors to people with disabilities as target beneficiaries.

My 2017-2019 study with three grassroots organisations demonstrated that they could act beyond their usual works and actively contribute to and lead disability-inclusive disaster preparedness projects in their local communities during the 2015 – 2016 period (Pertiwi et al., 2019). They were able to do this due to funding support from an international organisation that became the catalyst for actions. The funding was granted based upon their developed knowledge and competence in disability-inclusive disaster preparedness acquired in disability-inclusive disaster preparedness programmes in 2014-2015, organised by ASB IDN PHL. The three organisations were Klaten Association of People with Disabilities, Care for Disabled People (Bantul), and Indonesia Association of People with Disabilities, Padang office. The organisations identified the main reasons why people with disabilities are typically excluded from disaster preparedness activities, developed ideas, and sought funding to self-organise. They led initiatives to address the reasons behind exclusion, and worked alongside disaster/humanitarian stakeholders to ensure the needs and voices of people with disabilities were taken into account.

At the practical level, the three organisations collected and disseminated timely information about how people with disabilities are affected by Indonesia’s frequent earthquakes, tsunamis, and volcanic eruptions. This information was used to raise awareness about the presence and specific needs of people with disabilities. It also influenced changes in government planning and practice at village and district/city levels, and among NGOs. All three disability organisations provided government, NGOs and community groups with the knowledge and skills needed to include people with disabilities in disaster preparedness through sharing their experiences, conducting training and providing education. The three organisations further created spaces for engagement and dialogue with disaster/humanitarian decision-makers and programme implementers in their local areas, promoting what they had learned in their projects, and influenced these stakeholders to act on inclusion. Representatives of the organisations were later invited to join mainstream disaster preparedness and response decision-making forums in their localities. This provided opportunities for advocating for greater inclusion and collaborative action to sustain the disability-inclusive disaster preparedness and response initiatives in their local areas beyond the life of their projects.

The organisations’ works were influential and their actions as a whole contributed to the collective effort on reducing risk, building resilience to disaster, and eventually saving lives. On this note, if we take a step back and consider the organisations’ positions prior to leading their project, it is clear that they have undergone a transformative process. From an initial position of being recipients of NGO-led disability-inclusive disaster preparedness supports, they now initiate their own projects as confident leaders of disability-inclusive disaster preparedness initiatives. They are acknowledged as valued contributors and an integral part of mainstream mechanisms.

Supportive disaster governance poses opportunities to sustained inclusion

Post-2015 has seen a paradigm shift in acknowledging the need for inclusion of people with disabilities in disaster preparedness and humanitarian response and a further emphasis on their role as contributing stakeholders. Some substantive direct references on disability and inclusion; an “all-of-society” approach that invites participation of government, non-government, and civil society organisations; and leadership of people with disabilities are available in the Sendai Framework for Disaster Risk Reduction (Sendai Framework) (United Nations for Disaster Risk Reduction [UNDRR], 2015). The first-ever World Humanitarian Summit in 2016 called for inclusion of those at greatest risk, including people with disabilities, and recommended promotion of active participation and leadership of this community group (United Nations 2016).

In-country progress for supportive governance following international commitments to disability inclusion, in the case of Indonesia, sparks optimism. The results of my analysis of whether Indonesian laws at national and local levels meet the requirements of the Sendai Framework show that within the Indonesian governance framework, people with disabilities have evolved from being conceptualised as members of a vulnerable group to being perceived as stakeholders with varying degrees of participation in all phases of disaster management. Indonesian disability and disaster laws have guaranteed the rights of people with disabilities to be protected and to access services according to their specific needs in all phases of disasters. The more recent regulations have also come to acknowledge people with disabilities as active contributors in disaster preparedness, response and recovery, providing an avenue to expand on the practices of the three organisations.

Further, it is clear across disaster management laws and regulations that achieving the goal of disaster-resilient communities requires collaborative efforts, with an emphasis on the engagement of local actors. Nevertheless, while this mechanism offers an opportunity to sustain inclusion of people with disabilities in local disaster preparedness and response programmes over time, we need to be mindful of the readiness and capacity of non-disabled disaster/humanitarian actors to work with disability organisations. Having experienced as a humanitarian worker myself that the sensitivity and knowledge on disability inclusion did not come naturally, it is clear that continuous interaction, dialogue and partnering with people with disabilities themselves is imperative for these organizations to maintain readiness.

Pathways to sustain inclusion through an inclusive partnership

Considering these reflections, which were informed by practice and evidence, I propose that mainstream disaster/humanitarian organisations and disability organisations engage in an inclusive and equal collaborative partnership and create spaces to co-design, deliver, monitor and evaluate disaster/humanitarian programming as a way forward for sustaining community inclusion in the disaster context. Such partnership is expected to improve inclusion, ethics, quality and accountability of humanitarian response programme, which in turn benefits greater inclusion of people with disabilities at the community level.

There are at least three crucial milestones to realise the partnership. First, mainstream humanitarian organisations (Government/NGOs) could develop a database of disability organisations in their localities that can potentially be their partners in future disaster preparedness or response programmes. Consider engaging early with these organisations to allow spaces of learning in pre-disaster situations, rather than during a disaster situation, when meaningful engagement and learning could be compromised.

Second, focus on building capacity that will enable meaningful partnership. It could start by conducting a joint-capacity assessment of both disability and humanitarian organisations in relation to disability-inclusive disaster preparedness and response as a basis to create priorities and plan for the capacity development that is crucial to organisational confidence and knowledge to act on the issue when disaster strikes. It is also important to highlight capacity-sharing among humanitarian and disability organisations because each actor has unique technical expertise. Emphasis should be put on organisational and financial management, particularly for disability organisations to enhance their capacity as operational disaster/humanitarian actors.

Last, government and donors with disability or disaster interest could provide equitable opportunities for disability organisations to access adequate financial resources in the same way as other civil society organisations. Funding appears to be a crucial element in catalysing action and change at the community level, particularly with grassroots organisations. Inclusive partnership with humanitarian organisations could enhance financial accountability through more intensive mentoring and technical assistance.

Related Content