Not everyone experiences humanitarian emergencies in the same way. We know that people with disabilities are disproportionately impacted. This is not due to inherent vulnerability; it is the result of existing inequalities that are compounded by crisis and exacerbated by the way that humanitarian assistance is traditionally designed and delivered. This is well recognised: Article 11 of the Convention on the Rights of Persons with Disabilities (CRPD) promotes equitable approaches to inclusion in situations of risk and humanitarian emergencies, and the Sendai Framework calls for a disability perspective in all Disaster Risk Reduction (DRR) efforts+1.UNDRR, Sendai Framework for Disaster Risk Reduction 2015–2030, 2015 (www.undrr.org/publication/sendai-framework-disaster-risk-reduction-2015-2030).. However, even as the Sendai Framework was being agreed in 2015, people with disabilities in Vanuatu were absent from response and recovery activities in the aftermath of Tropical Cyclone Pam. This article considers the critical role of Organisations of Persons with Disabilities (OPDs) in humanitarian action, and how the Pacific Disability Forum (PDF) Regional Capacity Building (RCB) programme’s focus on a shared vision for the disability movement has led to significant improvements in inclusive DRR, response and recovery.
Context: disability exclusion in humanitarian settings
Disability inclusion within the humanitarian sector is a relatively new area, and the situation of people with disabilities is still often overlooked in preparedness, response and recovery efforts. Disability inclusion across DRR, prior to disaster, is often limited. Preparedness information is often unavailable in accessible formats, so many people with disabilities are less aware and prepared for a disaster. Research shows that 60% of people with disabilities in Vanuatu did not have information on what to do in an emergency before Tropical Cyclone Pam hit in 2015+2. Nossal Institute for Global Health, CBM Australia, Oxfam in Vanuatu, Vanuatu Society of People with Disabilities, Vanuatu Disability Promotion and Advocacy Association, Ministry of Justice and Community Services, Vanuatu National Disaster Risk Management Office, Disability inclusion in Disaster Risk Reduction: experiences of people with disabilities in Vanuatu during and after Tropical Cyclone Pam and recommendations for humanitarian agencies, 2017 (https://mspgh.unimelb.edu.au/__data/assets/pdf_file/0011/2567576/WEB-DIDRR-Report-14112017.pdf).. People with disabilities are also often left out of community disaster management and risk reduction; a UNDRR survey of over 5,000 people with disabilities across 137 countries found that 85% had never participated in these processes+3. UNDRR, Living with disabilities and disasters: UNISDR 213 survey on living with disabilities and disasters – key findings, 2013 (www.unisdr.org/2014/iddr/documents/2013DisabilitySurveryReport_030714.pdf)..
During disasters, poor or no consideration of physical accessibility means that people with disabilities may be unable to flee or evacuate safely with the rest of the community. Even if they can leave their home, long distances or difficult terrain may make it virtually impossible to reach shelter. Evacuation centres themselves may not be accessible due to stairs and other barriers; 74% of women with disabilities and 50% of men with disabilities reported barriers to access during Tropical Cyclone Pam in Vanuatu+4. Disability inclusion in Disaster Risk Reduction. Evacuation centres are public spaces, and gender norms mean that many women feel unsafe and lack the privacy they need. Women with disabilities in general are three times more likely to experience physical, sexual and emotional abuse compared to their non-disabled peers+5. UN Special Rapporteur on Violence against Women, its Causes and Consequences, Ms Rashida Manjoo, Report on violence against women with disabilities, 2012 (http://wwda.org.au/wp-content/uploads/2013/12/UN_SR_Report_2012.pdf). See also Ortoleva, S. and Lewis, H., Forgotten sisters: a report on violence against women with disabilities: an overview of its nature, scope, causes and consequences, 2012 (http://hdl.handle.net/2047/d20002563).. While there is limited information on the situation for women with disabilities in emergency settings, this likely compounds the safety and security concerns women with disabilities may have in relation to evacuation centres. The implications of exclusion when disaster strikes are dire. Tropical Cyclone Pam injury rates among people with disabilities were 2.45 times higher than for people without disabilities+6. Disability inclusion in Disaster Risk Reduction.
In the aftermath of disasters or humanitarian crises, when local responders and other actors begin to mobilise, people with disabilities are often overlooked and inadvertently excluded. Emergency food, water and health services are often inaccessible, and the standard set of food and non-food items often does not take into account the differing needs of people with disabilities, such as adapted feeding implements and assistive products, and additional continence and menstrual hygiene support. Accessible distribution points may also be inaccessible; after Tropical Cyclone Winston in Fiji these were located far away, location information was inaccessible and there was no support for people with disabilities to carry supplies back to their original location. OPDs played a limited role and were left out of key decision-making processes, which meant that the priorities and needs of people with disabilities were often overlooked.
Challenges to meaningful participation of OPDs
Since Sendai and the experience of Pam and Winston, humanitarian agencies are realising that effective disaster preparedness and response in the Pacific must include people with disabilities. Meaningful and direct engagement is key, in order to understand particular barriers and preferred strategies for removing these barriers, and to harness what people with disabilities can bring to disaster preparedness and humanitarian action.
People with disabilities are experts in their own lives, and humanitarian actors need to be able to access this expertise. OPDs can act as a conduit between humanitarian actors and people with disabilities. However, many people with disabilities face enormous barriers in accessing education, obtaining formal employment and accessing funding opportunities. This means that many OPDs lack human resources and core organisational funding. Many OPDs in the Pacific have only one or two paid staff members and rely on volunteers.
While inclusion in disaster preparedness and response is a key priority for people with disabilities and many OPDs, it is only one of many competing priorities for resource allocation. This means that humanitarian actors need to work with OPDs in a way that does not swamp the organisation, but builds core capacity and enables further resources to be allocated. OPDs in the Pacific, including PDF, consider this approach vital to their work.
A coordinated vision for the Pacific
In 2017 PDF, supported by CBM Australia, brought together 14 member OPDs from Pacific Island nations to develop a vision and coordinated priorities for disability-inclusive disaster preparedness and response. The strategy was developed as part of preparation for the roll-out of the Australian Humanitarian Partnership (AHP) Disaster READY programme+7. See www.australianhumanitarianpartnership.org/preparedness. AHP Disaster READY is currently being implemented in Fiji, Vanuatu, the Solomon Islands, Papua New Guinea and Timor-Leste., focused on disaster preparedness in the Pacific. National-level OPDs recognised that requests for technical input would increase as part of this programme, and wanted to ensure that they had dedicated staff with the time and mandate to engage, and avoid taking OPD leaders and other staff away from other priorities.
The result was the PDF Disability Inclusive Preparedness for Response Strategy, which sets out six key change areas that need to be addressed for inclusive and accessible humanitarian action. OPD capacity and resourcing is central. Having OPDs leading their own decision-making rather than always being pulled in the direction of other partners is a key goal of the strategy.
A catalyst for change
The strategy has proven to be the catalyst for a raft of changes that are redefining how people with disabilities are engaged in humanitarian access and inclusion efforts in the Pacific. PDF, national OPDs and CBM Australia have together leveraged the momentum and resourcing available under the Disaster READY programme and are building a more sustainable model of disability mainstreaming that has the rights and priorities of people with disabilities at its centre.
Through the process of strategy development, OPDs realised that human resources and technical capacity were key for building their work in this area. PDF and CBM Australia successfully advocated for funding for one full-time staff position dedicated to disability-inclusive humanitarian action in each national OPD in the five countries where Disaster READY is currently being implemented. Mainstream actors pay for these roles through a ‘Shared Services’ contribution model, and can tap into their expertise in disability inclusion, as well as learn from the lived experiences and perspectives of people with disabilities.
Confidence and capacity
The PDF and CBM Australia RCB programme prioritises funds to strengthen the capacity of people with disabilities and their representative organisations, so they can become more confident at applying their lived experience of disability and their knowledge of disability rights and inclusion principles to disaster preparedness and response issues.
To support OPDs while localised capacity is built up, a ‘triangle team’ has been developed. National OPDs are at the ‘pointy end’ leading engagement with humanitarian agencies in-country, with PDF and CBM available to support as needed and able to facilitate cross-country learning. This ensures that national OPD staff develop the skills and confidence to respond directly to requests for support. PDF and CBM provide the OPDs with development tools and training and mentoring support so that they can participate with confidence in community to national-level forums and broker relationships with mainstream actors. The programme also enables the five national OPDs to share resources and divide work among themselves to ensure the widest possible reach.
Participation and representation
This has resulted in improved partnerships with the mainstream humanitarian sector. OPDs are no longer seen as merely sub-contractors or implementers who can tick the disability box for mainstream organisations, and they are more confident engaging with humanitarian actors on their own terms. PDF has leveraged funding to establish a Preparedness for Emergency Response Unit with four staff to enable better engagement with regional cluster mechanisms.
In turn, OPDs are accessing humanitarian sectoral knowledge and the opportunity to influence the work of others. A key message is the importance of accessibility, not only of the built environment but also in terms of information, communication, transportation and services. As a result of this clear advice, national-level humanitarian partners are now seeing the importance of paying for reasonable accommodations to ensure that people with disabilities are included – and meaningfully engaging – in preparedness forums and activities.
Impact: inclusive response during recent crises
Tropical Cyclone Harold tore through several Pacific Island countries in April 2020. This time, due to the capacity development efforts of the PDF RCB programme, local OPDs were well-placed to coordinate an inclusive response, mitigating barriers and connecting with hard-to-reach communities. Through a collaborative effort, the Vanuatu Disability Promotion and Advocacy Association (VDPA) and the Vanuatu Society for People with Disabilities (VSPD) quickly mobilised to join post-disaster needs assessment teams and check what help people with disabilities in affected areas needed. VDPA staff have been sharing this information with all organisations to make sure the cyclone response and recovery reaches everybody.
OPDs in the Pacific are also playing a crucial role in providing an inclusive and accessible response to Covid-19. They are distributing emergency food packages and hygiene supplies to their members to ensure that basic needs are met, given current limitations to livelihood activities. OPDs are also sharing the lived experiences of people with disabilities and helping shape public health messaging so that it is disability-inclusive.
Lessons learned and conclusion
OPDs play a critical role in humanitarian action and must be involved in decision-making. They are best-placed to articulate the lived experience of people with disabilities and leverage local networks to identify and communicate with people with disabilities before, during and after disaster.
OPDs themselves should determine exactly what their roles should be. Time and space should be prioritised upfront to develop a clear vision and strategy, so that OPDs drive the direction of disability-inclusive response.
Partnerships are vital to enable disability inclusion and mutual learning between OPDs and humanitarian actors. A long-term capacity-building approach is needed so that humanitarian actors can access the valuable perspectives of people with disabilities, and OPDs can increase their understanding of humanitarian issues.
This article demonstrates how, by articulating a shared vision and priorities, the PDF and CBM Australia RCB programme has enabled OPD participation in humanitarian response and recovery in the Pacific. In the past, PDF and OPDs in the Pacific felt pushed aside or drawn into delivering on the priorities of others, and that disability inclusion efforts were often tokenistic. By taking the time to focus first on defining a strategy for the disability movement in the Pacific, OPDs were able to identify their resourcing and capacity development priorities, and direct their energies to these areas, in turn allowing them to provide quality disability inclusion advice and better influence the mainstream humanitarian sector.
This article also highlights the direct impact these efforts have had on inclusive DRR and recovery. The cost of exclusion during past disasters was significant and, while considerable work remains to be done, recent responses have moved beyond a one-size-fits-all approach, and humanitarian agencies are now seeking the perspectives and priorities of OPDs to better meet the needs of diverse community members. The work being done to ensure Pacific OPDs are at the decision-making table and feel confident to provide their disability inclusion perspectives to mainstream humanitarian stakeholders has, in the words of one national OPD member, ‘given us the power, not to do everything alone, but to share a vision that others can support us in achieving’.
Simione Bula is Regional Coordinator with the Pacific Disability Forum, and is currently leading the implementation of the Regional Capacity Building programme described in this article. Elizabeth Morgan is an Advisor with the CBM Global Inclusion Advisory Group. Teresa Thomson is a gender equality and intersectionality practitioner and founder of Paper Cup Consulting.