Meaningful Involvement of Persons with Disabilities to Promote Resilience

The bad experience after the 7-magnitude earthquake on August 5, 2018, shook Lombok Island, followed by the COVID-19 pandemic, making people with disabilities in West Nusa Tenggara (NTB) seem to be at their lowest point. However, the current situation is very different. They not only know about disaster management but are even trusted to be the main actors in various disaster programs, including the Disability Service Unit in the local government environment.

The situation experienced by people with disabilities when disaster strikes is truly difficult. Sri Sukarni, Chair of the Association of Indonesian Women with Disabilities (HWDI) of NTB Province, said that when a massive earthquake hit Lombok in 2018, she was forced to crawl out of the house. Sri did not have time to reach for her walking stick, let alone her wheelchair. “I could only do that after the strongest shaking had passed. Previously, in the midst of panic, I could only stay still while hugging my child,” she said when we met in mid-August.

Sri even admitted that she did not know why she had to rush out of the house at that time. She just followed the responses of the people around her. No one had ever told her what to do when an earthquake or other disaster struck.

As the leader of the organisation, Sri was reminded of the fate of her members. However, there was nothing she could do because she had to fight to ensure the safety of herself and her family in an effort to survive during the evacuation. Life support assistance was hard to come by. Confusion and despair struck because they did not understand who was authorised to help or at least could be asked for help. Sri gave an example: when most of the victims received assistance from the Subnational Disaster Management Agency (BPBD), the majority of people with disabilities did not even understand who and where the BPBD was.

Similar things were conveyed by Topan Mars Arifin, Chairman of the Indonesian Blind Association (Pertuni) of NTB Province. Not only when a disaster occurs but when they arrive at the evacuation site, people with disabilities experience multiple difficulties. There is no perspective on disabilities in all public facilities in the evacuation site, such as friendly bathrooms. People with disabilities also have great difficulty accessing them safely. Not to mention logistical assistance, which again equates to the needs of all refugees. In fact, people with disabilities have different needs according to their type of disability.

In addition to the lack of disaster knowledge and the unfulfilled needs of people with disabilities during disasters, according to Topan, there is also a factor of perception from outside parties, especially the government. Generally, they still consider and position people with disabilities as people who do not have the ability, so they only need to be assisted.

Young Expert Policy Analyst Sub-Coordinator of Disaster Management Cooperation of the NTB Provincial Disaster Management Agency (BPBD) Hidayaturrohman acknowledged this. He revealed that many local government staff do not yet have the mindset that people with disabilities have special needs and tend to think of them as having shortcomings. “This is one of the reasons why when a disaster occurs, no one differentiates the needs of people with disabilities from others. Everything is treated the same because it is not thought of,” he said.

When local governments and non-governmental organisations finally invite representatives of people with disabilities to meetings, it is usually because there are conditions for their involvement. “So they are like objects or attachments. Just invited without being involved in any discussion,” he said.

The door of opportunity began to open when Arbeiter-Samariter-Bund ( ASB), a non-governmental organisation, asked Sri and colleagues at HWDI NTB to be involved in rapid assessment activities for people with disabilities affected by the earthquake while the emergency response period was still in effect. The series of activities were carried out in two villages in North Lombok Regency, including increasing capacity for inclusive disaster management and techniques for conducting rapid assessments and their analysis.

It was then that Sri learned that in many locations, there were no evacuation routes that were friendly to people with disabilities. This means that, when combined with minimal knowledge, limited networks, and involvement as mere objects, the difficulties experienced by people with disabilities are multiplied, and the possibility of becoming victims during a disaster is even greater.

A different approach

The entry of the SIAP SIAGA Program into NTB in 2022 opens wider doors for people with disabilities. By prioritising the perspective of gender, disability and social inclusion (GEDSI), the NTB BPBD supported by the SIAP SIAGA program encourages the involvement of organisations of people with disabilities (opdis) in various activities, with one of the targets being to form a Disability Service Unit (ULD) at the NTB Provincial BPBD. ULD was formed as a realisation of a joint work forum as well as advocacy related to the rights of people with disabilities in disaster management by groups of people with disabilities and local governments.

Serious involvement, or meaningful involvement, has an impact on groups of people with disabilities as well as local government officials. “The difference is very clear to us. In the SIAP SIAGA Program, we were really involved from the beginning. From the planning. In addition to being given space to express opinions, our opinions are not just tacked on, but are indeed part of the points of consideration during the meeting,” said Sri.

According to her, since the first multi-stakeholder meeting involving her, the opportunity to express her opinion directly in front of the forum has been opened wide as equals. The meeting was in the form of compiling the Disaster Risk Assessment (KRB) and Disaster Management Plan (RPB) in North Lombok Regency. “It is not easy for opdis, especially women with disabilities, to build relationships with other institutions. Because the two main issues that we are fighting for, namely women and disabilities, are not things that usually receive special attention,” she added.

In these forums, Opdis representatives have the opportunity to campaign and encourage the issue of disability inclusion to be more integrated into development plans, especially regarding disasters. They also learn about disasters and strategic processes such as policy reviews.

Melting the ego

Topan also felt the same way. The involvement of people with disabilities in the SIAP SIAGA Program is not just as meeting participants but also as resource persons. “This has never happened before when talking about a program with the government. This approach model makes us at Pertuni feel comfortable expressing opinions and contributing more actively,” he said.

This sense of comfort is important because it turns out that only in activities supported by the SIAP SIAGA Program can organisations of people with disabilities (opdis) in NTB join and collaborate. Previously, they seemed to be separated by barriers, making it difficult to work together. Differences in interests and psychological barriers are among the causes of these barriers. By opening up equal space for opdis in NTB to be involved in various activities related to disaster management, these barriers can be broken down, and solidarity can be fostered.

Topan admitted that barriers between the opdis emerged because opdis were often only used as program attachments. Certain program managers felt that they were inclusive enough by involving only one or two opdis, so other opdis thought they did not get access. In fact, there are various opdis with their respective focuses, following the different types of disabilities.

By opening up a space that involves more options, they can finally melt their egos and pursue the same goal, namely to encourage policies that favour people with disabilities, with the realisation of ULD at the NTB Provincial BPBD as one of its targets. “Of course, after it is successfully realised and running well, we will together encourage the formation of ULD in all Subnational Apparatus Organisations (OPD) of regencies/cities in NTB,” he said enthusiastically.

In addition to HWDI and Pertuni, two other large organisations in NTB, the Movement for the Welfare of the Deaf in Indonesia (Gerkatin) and the Association of the Indonesian Disabled (PPDI), joined in the effort to form ULD. Their willingness to join was also based on their trust that they were truly the subjects in this process.

In addition to voicing special needs, this process is also used as a moment to socialise matters related to disabilities. However, according to Topan, in general, the people of NTB, including those in the government bureaucracy, still consider disabilities to be only related to physical, for example, not having hands or feet. Meanwhile, those with visual and intellectual disabilities are not regarded as people with disabilities. “This is also the goal of the ULD in the future,” he said.

Hidayaturrohman explained that the ULD has actually been regulated in the NTB Provincial Regulation (Perda) No. 4 of 2019 concerning the Protection and Fulfillment of the Rights of Persons with Disabilities. According to the regulation, the ULD is part of an institution or agency that functions as a provider of services and facilities for persons with disabilities. However, only two fields are mentioned as mandatory for organising it, namely education and employment.

” Actually, ULD in employment has also been formed. However, based on statements from friends in the opdis, their involvement is not like that of BPBD. Here, since the beginning of the process, we have really opened up space for their role; we tend to reduce their dominance,” he said.

The establishment of ULD in BPBD started in 2023. After going through many meetings, it finally narrowed down to the formation of a working group (pokja) consisting of opdis, the Disaster Risk Reduction Forum (FPRB), and BPBD. In addition to the four opdis mentioned, the LIDI Foundation, the Tulus Angen Community Foundation, and the Center for the Development of Disability Potential also joined.

The efforts finally paid off. The NTB Provincial BPBD inaugurated the ULD on December 3, 2024, coinciding with the commemoration of the International Day of Persons with Disabilities. The inauguration ceremony was attended by the Director of Preparedness of the National Disaster Management Agency (BNPB) Pangarso Suryotomo, Assistant III to the Subnational Secretary (Setda) of NTB Wirawan Ahmad, Chair of the NTB Disaster Risk Reduction Forum (FPRB) Rahmat Sabani, administrators of the NTB Provincial BPBD ULD, representatives of organisations for persons with disabilities in NTB, and development partners in NTB. With the launch, NTB became the fourth province in Indonesia to have a BPBD ULD. The other three provinces are Central Java, East Java, and East Nusa Tenggara.

Change of perspective

According to Hidayaturrohman, in the effort to form ULD, it is not only the fulfilment of the target that is important. The series of ULD formation processes involving opdis provide many lessons that will be very useful for other programs. “For us at BPBD, the process of forming ULD has brought extraordinary changes. We not only have an understanding of disabilities but also how to position them from being just objects of aid recipients to being part of policymakers. Previously, let alone involving them in planning, we didn’t even have data on disability,” he said.

Sri also acknowledged this. She felt that there was a change in perspective in BPBD, both at the NTB provincial level and North Lombok Regency, towards the operational aspect after the joint process in the SIAP SIAGA Program. In addition to being considered equal, now there is a special budget for disaster management for people with disabilities in both institutions. “Including in the West Pemenang Village, North Lombok, which has also started to budget specifically for the people with disability,” she said.

With these changes, the space for the opdis to increase knowledge and capacity in the process of formulating strategic policies, especially for people with disabilities in NTB, is increasingly open. This gives opdis a stronger foundation to carry out various other activities, including being involved in multiple programs held by different institutions and agencies. In 2023, for example, HWDI received a grant from Caritas Germany to run the Community-Based Disaster Risk Reduction (DRR) program in two villages in North Lombok Regency. This program aims to increase the understanding and capacity of village governments, communities, and institutions regarding inclusive disaster management.

Topan felt the same way. The process of encouraging the NTB BPBD ULD not only made opdis members increasingly understand various regulations related to the rights of people with disabilities but also opened up space for opdis members to dare to express themselves and convey their opinions. The existence of spaces that can encourage the courage to express themselves is closely related to the level of welfare of people with disabilities because it can increase self-confidence to be involved in various activities in the community, including accessing job opportunities.

Seeing the positive impact of the process of forming the NTB BPBD ULD, Pertuni is determined to encourage the existence of ULD at the district/city level. They are ready to share the process they went through during the formation of the ULD at the NTB BPBD and are even willing to place their members in all ULDs that have been formed. “The existence of ULD is very important for OPD and us. We are optimistic that collaboration, especially in the field of disasters, will continue because, in addition to commitment, there is also BPBD as the axis,” he said.

Capacity increase

Meaningful involvement of persons with disabilities in NTB in disaster management programs, one of which is implemented by encouraging the formation of ULD, has encouraged changes for both the OPDs involved and government agencies as service providers. Meaningful involvement by placing OPDs as an important part of the formation of ULDs, which is realised by, among other things, providing space for OPD representatives to become facilitators and discussion resource persons, as well as providing space for various OPDs in NTB to be involved, has increased the capacity of OPDs and their members. This is a provision for OPDs to continue to be actively engaged in other multi-party forums, especially those related to the rights of persons with disabilities. Meanwhile, for government agencies, a series of discussions in the ULD formation process can change perspectives so that OPDs are no longer seen as objects but rather as subjects of development whose voices must be heard and their rights fulfilled. That way, no one will be left behind in efforts to encourage resilience.