Beyond tokenism, toward resilience: furthering a paradigmatic shift from intersecting narratives of disaster and disability realities in East Java, Indonesia

Abstract

The often-neglected intersection between disaster and disability in disaster management initiatives perpetuates a disproportionate impact on people with disabilities, reinforcing existing barriers and eroding overall resilience. Through an exploration of personal perspectives among 17 people with socially determined, self-identified disabilities amidst Indonesia’s disaster landscapes, we seek insights on amplified risks but also resilience pathways carved through cumulative exposures. Despite infrastructure barriers exacerbating disaster anxieties, there was resilience exhibited by people supporting one another through wisdom gained from repeated exposures, thus countering their exclusion. Findings also reveal societal forces sustaining unequal marginalization through stigma, yet unexpectedly cultivating solidarity as disability groups unite amid crises. Herein lies an appeal to leverage currently overlooked capabilities by meaningfully engaging disabled experts with lived experience navigating exclusion to guide context-driven strategies that fill gaps when systems fall short. We thus respond to calls for inclusive paradigms championing priority-setting participation of people with disabilities in directing equitable resilience initiatives benefitting all. Looking ahead, at the intersection of disability and disaster, the stage is set for more participatory efforts that embed disabled individuals as leaders to champion inclusion and social justice in the face of intensifying risks as more equitable communities are built.

IMPACT STATEMENT

This research explores the lived experiences of 17 people with disabilities during disasters in East Java, Indonesia. Despite growing government commitments to disability inclusion, people with disabilities still face amplified risks and barriers when catastrophes hit. The study reveals how inaccessible infrastructure, fractured communication channels and dismissive attitudes sideline disabled citizens, obstructing evacuation and access to essential post-disaster services. However, the conversations also spotlight remarkable resilience as participants supported one another by sharing wisdom accrued through recurrent turbulent exposures. Hence while validating exclusion, findings uniquely contribute textured insights illuminating sociocultural forces shaping both adversity and solidarity. Looking ahead, the study underscores twin imperatives: dismantling barriers perpetuating unequal treatment amidst crises, alongside championing participatory involvement of disabled individuals to guide context-driven strategies that fill gaps when systems fall short. Ultimately, the research calls for inclusive paradigms that embed disabled experts as leaders to champion accessibility, social justice and equitable resilience.

Keywords:

• Disability-inclusive
• disaster risk reduction strategies
• inclusive health
• people with disabilities
• reduce inequalities

Reviewing Editor:

• Komalsingh Rambaree
• Social Work and Criminology
• University of Gävle
• Gävle
• Sweden

Subjects:

• Disability Studies – Sociology
• Social Policy

Introduction

The pursuit of disability-inclusive approaches to disaster risk reduction and management (DRRM) signifies a vibrant, albeit imperfect, response to growing demands for equitable and sustainable development paradigms, notably across disaster-prone regions of Southeast Asia where recurrent catastrophes amplify ingrained poverty and inequality (Asian Development Bank, 2021). In Indonesia, where people with disabilities reside among high-risk groups continually exposed to such catastrophes, the government has acknowledged the obligation of factoring marginalized communities into national strategies (World Health Organization, 2011). However, implementing disability-inclusive DRRM has proven challenging owing to limited awareness of disability matters in disaster management circles (Knox & Haupt, 2015; McEntire, 2007); insufficient allocation of resources for disability-inclusive DRRM (Manyena et al., 2013); and the sidelining of people with disabilities from decision-making procedures (Guidry-Grimes et al., 2020). Within Indonesia’s East Java Province, people with disabilities face even more struggles in accessing and engaging in DRRM efforts, thus heightening their susceptibility to disaster threats (Pertiwi et al., 2019).

East Java, with its varied geography, remains highly susceptible to various natural disasters, as underscored by the considerable damage and fatalities inflicted across Malang and Blitar districts in the province during the 2006 Yogyakarta earthquake. Given the pronounced disaster risks confronting East Java, prioritizing inclusive DRRM, especially for vulnerable groups, such as people with disabilities, has emerged as a compelling prerequisite. The East Java Provincial Government has accordingly commenced measures to address this issue, including integrating disability factors into disaster management plans, founding disaster-resilient communities and furnishing training programs for disaster management staff. However, several obstacles persist impeding implementation, including scarce resources, infrastructure deficiencies, limited disability awareness among personnel and under-representation in decision-making, with which hinder the gradual progress toward realizing a truly inclusive approach.

While some progress has been made in East Java, significant gaps endure more broadly across Indonesia’s complex emergency landscape. Pursuing disability-inclusive disaster management has gained rhetorical traction through national frameworks yet faces uphill struggles converting principles into provincial and district reality amidst prevailing awareness, capacity as well as coordination shortfalls. Hence, the need persists for empirical research attuned to local challenges that may inform contextualized strategies to engender greater disability inclusion amidst crises. In East Java, particularly, understanding the lived experiences and perspectives of people with disabilities comes with intrinsic significance, potentially clarifying tailored pathways and providing an evidentiary base to guide approaches that are more responsive to the priorities and requirements of this vulnerable group during disasters.

In this study, we seek to identify the barriers and challenges impeding the empowerment and resilience of people with disabilities when confronting disasters in East Java, Indonesia. Our overarching goal is to advance understanding of the individualized challenges faced by people with disabilities during disasters in East Java. Specifically, we aim to address the following key research questions: What are the unique risks, obstacles, and needs encountered by people with disabilities in disaster situations in East Java? With the examination of problems and prospects surrounding disability-inclusive disaster management approaches, this study points to reveal potential strategies to mitigate risks and empower people with disabilities to actively contribute to more robust, equitable disaster planning within their communities.

Disability-inclusive disaster risk reduction and management (DRRM)

An expanding body of scholarship on inclusive approaches to DRRM underscores pleas for heightened responsiveness regarding the wide-ranging requirements and pronounced fragility of people with disabilities when confronting catastrophes. Yet, sizable obstacles still persist in successfully and meaningfully operationalizing disability-inclusive DRRM (Goodwin-Gill & McAdam, 2017; Pica, 2018), highlighting notable gaps between principled aspirations espoused in academic and policy domains and on-ground execution barriers faced by marginalized disabled communities.

From one critical standpoint, existing academic inquiry has much indicated the pitfalls of orthodox disaster management approaches that have frequently discounted the explicit tribulations encountered by people with disabilities, engendering their alienation during catastrophe events (D. Alexander et al., 2012; Eade, 1997). Those disasters are very much, at the very least, inflaming ingrained barriers which disabled individuals routinely confront, including physical, cognitive, attitudinal and societal obstacles. As one would expect, the marginalization of people with disabilities across DRRM spheres precipitates systemic inequities, rendering substantial segments of the population profoundly vulnerable amidst catastrophes (Rouhban, 2014; Saban, 2016).

In light of these concerns, the promotion of disability-inclusive approaches has arisen as an imperative, where disability-inclusive approaches refer to intentionally including and integrating the rights, perspectives and participation of people with disabilities across policies, programs and services (Asian Development Bank, 2018). This aligns with the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), which upholds disability inclusion and accessibility across all aspects of society (United Nations, 2006). Recent years have witnessed growing efforts to implement inclusive approaches across development sectors such as education; healthcare; water, sanitation and hygiene (WASH); and beyond as part of furthering rights and opportunities for people with disabilities globally. Such momentum extends to disaster risk reduction and humanitarian contexts as well, especially emphasized with the intensified recognition of the disproportionate disaster impacts shouldered by disabled communities coupled with their underrepresentation in existing DRRM decision-making processes (Stough et al., 2016).

Representatives of the disability community have increasingly called attention to remedying these systemic marginalization and barriers across disaster planning policies, pointing out the requisite approaches to dismantle obstacles and strengthen inclusion (D. E. Alexander, 2016). Extensive research has also chronicled a disquieting pattern of people with disabilities facing disproportionate calamity impacts, exhibiting drastically higher mortality alongside intense struggles to access support following disasters (Marshall, 2020; Reid, 2013). For instance, clarifying this negligence of inclusion, the 2011 Japan earthquake and tsunami saw doubled mortality rates among disabled relative to non-disabled citizens (Shek-Noble, 2023). This tragedy lays bare major omissions in prioritizing accessibility across prevailing disaster response paradigms, serving as a pressing example underscoring the need for disability inclusion in planning and relief efforts. Clearly then, there is an urgent need to implement more disability-inclusive and human-rights-based approaches across all areas of DRRM to ensure equitable protection and support for, especially, marginalized groups, such as persons with disabilities.

Operationalizing disability-inclusive approaches to DRRM constitutes a multidimensional endeavor necessitating a holistic comprehension of the interplay between disability and disaster (Villeneuve, 2018). Integral frameworks, including the Sendai Framework for Disaster Risk Reduction and the UNCRPD, spotlight active participation across disaster planning to progress inclusive paradigms. However, effectuating these principles relies on building requisite resources, expertise and capacities to embed accessibility within protocols (Craig et al., 2019; Dar et al., 2014). Accordingly, initiatives, such as cultivating affiliations with disability groups and investing in their disaster management capabilities can offer pathways for customizing supportive policies and practices that address this community’s distinct needs when facing calamities (Chapman & Kirk, 2001; Eisenman et al., 2009; Few et al., 2022).

Despite the increasing commitment to promoting disability-inclusive disaster risk reduction approaches, intricate intersections between impairment, catastrophes and mitigating vulnerability engender formidable contestations (Wester et al., 2017). These complex layers demand tailored disaster management paradigms attuned to address the many requirements and perspectives of disabled communities in a meaningful, relevant way (Klein et al., 2019; Kuran et al., 2020). It is within this context that integrating granular comprehension of the needs and adversity confronted by people with disabilities proves vital for response protocols to empower and augment the resilience of this group when facing calamities (Clements & Casani, 2016).

Our research interprets prevailing knowledge gaps regarding the individualized challenges people with disabilities face during disasters, alongside probing the efficacy of inclusive disaster risk reduction initiatives. Contextualizing lived perspectives remains to be called for, especially given sizable concerns regarding advancing inclusion in Southeast Asian emergency planning contexts where layered barriers frequently amplify vulnerability amid flashes of progress (Hoffmann & Blecha, 2020). Our research aims to address this gap by seeking to understand the complex experiences across the spectrum of disability, which is essential to conceive robust systems aligning planning and relief efforts with disabled individuals’ priorities (Vatsa, 2004) while looking ahead to collaborative reform efforts upholding rights across emerging governance ecosystems.

Research methods

The paradigm of social constructivism encapsulates the perspective that individuals’ perceptions and interpretations of their experiences are shaped not solely by their intrinsic qualities, but moreover by the social interactions and cultural influences that mold their worldview (Adams, 2006; Hirtle, 1996). This paradigm holds particular significance when investigating the challenges faced by people with disabilities in East Java, Indonesia, where interpreting the sociocultural contexts that shape their experiences is crucial to avoid remaining shrouded in obscurity (Ivanoff & Hultberg, 2006). Of particular note, recognizing the agency of people with disabilities involves acknowledging that societal dynamics and norms impact their lived realities, rather than simplistically attributing their experiences to impairments alone (Jonassen, 1991). To expand the current understanding of disability-inclusive DRRM, we embraced a qualitative methodology (Dowling et al., 2016) that enables a subtle exploration of the perspectives of people with disabilities regarding disasters. As Clarke and Braun (2013) and Creswell et al. (2006) highlight, this approach sensitively captures tangled social phenomena and human experiences that quantitative techniques may overlook. Thus, our objective is to employ this approach to elucidate the challenges confronted by people with disabilities during disasters, with the broader goal of informing strategies that augment their resilience and empowerment.

We used a phenomenological research design (Moustakas, 1994) to gain deep understanding into the personal experiences of participants during disasters. This approach let us explore in detail the perspectives and emotions of participants regarding disasters, as well as the broader social and cultural factors influencing their challenges. Aligning with the social constructivist approach of the whole study, the phenomenological focus on the meanings within participants’ personal realities matched our goal to shed light on the societal forces shaping the experiences of people with disabilities during disasters. Ultimately, by gathering profound insights into participants’ real-life experiences with disasters, this approach enabled a nuanced understanding of the barriers, opportunities and potential empowerment strategies related to inclusive disaster management in East Java.

Ethics and researcher positionality

This study obtained ethical approval from the Institutional Research Board (IRB) at the Faculty of Social and Political Sciences of Airlangga University (Approval No. 4159/UN3.FISIP/III/PT./2023), affirming its conformity to ethical principles in conducting research with human participants. However, as the research involved engaging a potentially vulnerable population of people with disabilities to recount sensitive experiences, extra precautions were taken to safeguard participants’ wellbeing. Protecting against psychological distress represented an ethical imperative, with provisions instituted for participants to freely pause or withdraw from recounting distressing disasters memories. Additionally, participants were invited to provide confidential feedback on their wellbeing, which we, as researchers, monitored to ensure any desired extra support could be activated after the interviews.

Confidentiality was also prioritized, with interview transcripts and recordings subjected to rigorous anonymization practices and securely encrypted to prevent potential privacy violations. Moreover, repeated notifications during study recruitment and informed consent procedures explicitly emphasized that participation was completely voluntary without any direct or implied coercion, nor penalties for withdrawing. In this informed consent process, participants were detailed on the measures taken to minimize distress, maintain confidentiality and uphold voluntary involvement, underscoring respect for participants’ autonomy in the research process.

Importantly, the research team also critically reflected on the gap stemming from their lack of lived experience with disability, involving considerate efforts to sensitively capture participants’ perspectives. While encompassing expertise across domains, such as public administration (ES), policy implementation (AK) and qualitative methodology (ANS and PAFA), no members of the research team identified as having a disability themselves. Recognizing this experiential disjunction, semi-structured interviews were intentionally designed to be adaptable based on participants’ unique communication support requirements, with disability advocacy organizations closely consulted to match appropriate accommodations. Furthermore, establishing rapport and trust was prioritized by allocating time for participants to openly discuss concerns and have questions answered on their own terms, explicitly foregrounding their subjective narratives rather than assumptions. With a thorough navigation of complex considerations in research ethics and positionality, this study upheld ethical standards while respecting participant dignity and perspectives.

Participant recruitment and sampling

A thoughtful, layered approach attentive to nuance was necessary to glean insights from those at the intersection of disability and disaster. Initial collaboration with disability advocacy groups helped identify diverse participants spanning differences in gender, age, background, disability types and disaster exposure. While this diversity afforded a multifaceted lens, it constituted only the first layer of sampling deliberation. Simply put, diversity alone lacked the crucial second layer of securing participants with lived experience navigating this precarious intersection of impairment and emergency. Hence, purposive and snowball sampling techniques were deployed to identify information-rich participants with extensive experience illuminating this nexus of vulnerability. After securing ethical approval, we employed these approaches to select a cohort of 17 participants who have lived experience of disabilities and have experienced disasters in East Java, Indonesia (see Table 1). The objective was leveraging lived wisdom from these participants to unveil nuances in how people negotiate risks, barriers, resilience tactics and empowerment in disasters through a disability lens. As Patton (2002, p. 273) notes, purposefully sampling those with rich lived experience provides vivid insider perspectives that enhance understanding of the explored phenomenon, stating ‘information-rich cases are those from which one can learn a great deal about issues of central importance to the purpose of the inquiry’.

Table 1. Sociodemographic and disability characteristics of participants.

Participant	Gender	Age	Type of impairment(s)	Disaster experience	Place of residence
Participant 1	Male	27	Physical disability	Flooding and earthquake disasters	Surabaya
Participant 2	Female	41	Sensory (visual) disability	Flooding disaster	Malang
Participant 3	Male	62	Compounding disabilities (physical and medical condition)	Earthquake and fire disasters	Kediri
Participant 4	Female	53	Physical disability	Flooding and fire disasters	Jember
Participant 5	Male	25	Medical condition	Flooding disasters	Banyuwangi
Participant 6	Female	33	Compounding disabilities (sensory and physical)	Earthquake disaster	Blitar
Participant 7	Male	29	Sensory (hearing) disability	Fire disaster	Malang
Participant 8	Female	47	Physical disability	Flooding and earthquake disasters	Surabaya
Participant 9	Male	59	Sensory (visual) disability	Earthquake disaster	Pasuruan
Participant 10	Female	42	Physical disability	Flooding and fire disasters	Probolinggo
Participant 11	Male	68	Physical disability	Earthquake disaster	Surabaya
Participant 12	Female	55	Sensory (visual) disability	Flooding disaster	Sidoarjo
Participant 13	Male	26	Physical disability	Flooding and fire disasters	Jombang
Participant 14	Female	61	Sensory (hearing) disability	Flooding and earthquake disasters	Mojokerto
Participant 15	Male	52	Physical disability	Earthquake and fire disasters	Malang
Participant 16	Female	37	Compounding disabilities (physical and mental condition)	Flooding disaster	Pasuruan
Participant 17	Male	44	Physical disability	Flooding and earthquake disasters	Surabaya

As noted, additional considerations were vital when determining the scope of the sample, with an emphasis on including a range of disability types in order to reveal variations in barriers and needs between physical, sensory, mental health conditions or compounding impairments. Likewise, participants’ age and gender aligned with intersectionality theory’s attention to how identity factors shape marginalization (Kimberly, 1989). Incorporating life stages and gender perspectives could elucidate how evolving contexts and sociocultural dynamics interact with disability and vulnerability across one’s lifespan, seeking not token inclusion but nuanced depth and illumination. In keeping with an inclusive framework, the methodology also welcomed both formal disability status and self-identification, prioritizing the latter given the complex interplay of medical, functional, barrier and identity factors. This approach extended to embracing a spectrum of perspectives, including some affirming disability, others expressing negative views and still others rejecting the label while describing disability-based barriers, all of which were anticipated and accommodated.

Data collection

The data collection strategy deliberately aligned raw lived experiences with bigger-picture policy landscapes through two complementary qualitative approaches – semi-structured interviews centered on capturing unfiltered disability perspectives and document analysis contextualizing those frontline insights within broader institutional disaster management contexts. This intentional integration of ‘on the ground’ direct perspectives sourced directly from people with disabilities with a macro-level analysis of relevant organizational and government documents was strategic. Examining personal narratives alongside formal policy and legislation documents enabled crucial ‘triangulation’ whereby findings could be confirmed and validated by cross-verifying consistency and convergence across these data sources encompassing both fine-grained lived experiences and big-picture bureaucracies (Creswell & Clark, 2011).

Interviews

Semi-structured interviews constituted the core data source given their power to directly capture textured first-hand accounts of participants’ experiences at the intersection of disability and disaster. The flexible and conversational format fostered rapport and offered adaptability to organically explore perspectives while probing key research questions regarding risks, barriers, tactics, empowerment and advancements related to inclusive disaster management. The interview questions (see Table 2) probed participants’ previous disaster encounters, communication and infrastructure accessibility challenges, interactions with first responders and relief organizations, disaster preparedness levels and perspectives on enhancing disability inclusion. Follow-up queries and probes elicited elaboration on relevant insights that emerged, achieving rich description during interviews that lasted 45–60 min, taking place both virtually via Zoom and in-person to eliminate accessibility barriers to participation. The dialogic style fostered open sharing, allowing participants to steer conversations, with interviewers listening intently and asking clarifying questions without assumptions, thus placing participants’ voices, emotions and recommendations at the center while gathering textured lived experiences.

Table 2. Interview questions.

Area of focus	Questions
Previous disaster encounters	Can you describe your experiences dealing with disasters that have impacted your community in the past?
	How did you get information and alerts about the emergency unfolding? Were those communication methods accessible to you?
Accessibility challenges	What major obstacles or barriers did you confront regarding communication, mobility, transportation, infrastructure or securing essential medical services during the disaster?
	Were you able to safely evacuate and access emergency shelters and facilities? What specific challenges did you face?
	(Probe) Could you describe examples of infrastructure or services that were inaccessible or posed risks to you, and how those could be improved?
Interactions with emergency services	Can you describe your interactions with first responders and governmental/organizational emergency relief services during the disasters you endured?
	How responsive were emergency personnel and volunteers to your specific access requirements as a person with disabilities?
	(Probe) In what ways did formal emergency responses overlook or fail to address your needs?
Disaster preparation	How prepared did you feel to handle the risks and challenges of the disaster situations you endured based on available resources and support systems?
	What further disability-inclusive planning or protocols would have helped mitigate some of the struggles you confronted?
Perspectives on inclusion	What recommendations or advice would you offer governmental organizations and emergency planners to make disaster management approaches more accessible and responsive to people with disabilities?
	How can your expertise and experiences dealing with disabilities in disaster contexts contribute to planning improved strategies in the future?

Documentary evidence

Relevant DRRM policies, governmental reports, organizational materials and news documents were analyzed to contextualize participant experiences within the broader strategic landscape (Bowen, 2009). These documents provided background details on organizational initiatives, action plans, legislation, funding, challenges and debate related to inclusive disaster management regionally. Specific documents reviewed included Indonesia’s National Disaster Management Agency strategic plans, district capability assessments and non-governmental scoping papers regarding disability inclusion efforts (see Table 3). Document analysis complemented the interviews with wider contextual understanding across organizational and government levels regarding advances and persisting gaps in inclusive DRRM.

Table 3. Documentation catalog of disaster/disability-related records.

Area	Documents (source reference)	Details	Challenges and debates	Potential solutions/recommendations
Organizational initiatives	BNPB (2020) District Capability Assessments (Bandung, Kulon Progo, others) Regulation of BNPB No. 14/2014 ASB Indonesia Report on Disability Inclusion in Disaster Management	BNPB plans mention integrating disability but lack concrete implementation strategies. Some districts acknowledge disability needs but lack dedicated action plans. Regulation provides framework but enforcement and monitoring are weak. NGOs such as ASB Indonesia advocate for inclusion but face limited reach and funding.	Inadequate resources and expertise for disability-inclusive planning. Lack of coordination and collaboration among stakeholders. Limited awareness and understanding of disability needs among disaster personnel. Dependence on external funding for NGO initiatives.	Allocate dedicated funding for disability-inclusive programs. Build capacity through training and technical assistance for government and NGOs. Improve data collection and monitoring of disability inclusion efforts. Establish clear guidelines and standards for inclusive disaster plans, developed in consultation with DPOs.
Action plans	Kulon Progo District Action Plan for Disability Inclusion (2023–2025) Indonesia’s National Action Plan for Disaster Risk Reduction (latest)	Kulon Progo has a dedicated action plan with specific measures for disability inclusion. National action plan lacks concrete measures and timelines for implementation.	Policy implementation gaps hinder effective disability inclusion. Difficulty translating national policies into local action plans. Lack of accountability mechanisms for ensuring disability inclusion.	Develop national action plans with measurable targets and indicators relevant to disability needs. Provide technical support and funding to districts for implementing disability-inclusive action plans. Strengthen monitoring and evaluation with indicators that track progress toward achieving disability inclusion goals. Hold government agencies accountable for achieving disability inclusion goals.
Legislation	Law No. 24/2007 on Disaster Management Indonesia’s Ratification of the UNCRPD (2011) UNDP Assessment of Indonesia’s DRR Efforts	Existing disaster management law lacks specific provisions for disability inclusion. UNCRPD ratification creates obligations, but legal framework needs harmonization. UNDP report highlights gaps between legislation and implementation.	Insufficient legal framework for enforcing disability rights in disaster situations. Gaps between national legislation and local implementation. Lack of awareness and understanding of legal obligations regarding disability inclusion.	Harmonize national disaster management legislation with the UNCRPD and Sendai Framework principles. Enact specific laws and regulations on disability inclusion in disaster management. Develop clear legal guidelines for accessible emergency response and evacuation procedures. Raise awareness and understanding of disability rights and legal obligations among government officials and disaster personnel.
Funding	BNPB Internal Report on Resource Allocation ASB Indonesia Report on Funding Mechanisms for DRR	Limited government funding for disability-inclusive initiatives in disaster management. Reliance on external donors and NGOs for funding is unsustainable and creates uncertainty.	Inadequate financial resources hinder comprehensive disability inclusion efforts. Lack of sustainable funding mechanisms for long-term programs.	Increase government funding for disability-inclusive programs. Develop innovative financing mechanisms such as public-private partnerships and social impact bonds. Allocate portions of emergency response budgets for disability-specific needs. Build capacity for fundraising and resource mobilization within NGOs and DPOs.
Challenges and debates	DPO Report on Discrimination in Disaster Management District Assessments on Accessibility NGO Report on Communication in Disaster Preparedness BNPB Report on Emergency Response	Stigma and discrimination against persons with disabilities remain prevalent. Lack of accessible evacuation shelters, emergency services and information. Difficulty identifying and reaching persons with disabilities during emergencies.	Address stigma and discrimination through awareness campaigns and educational programs. Improve accessibility of disaster preparedness resources and information in multiple formats. Invest in accessible communication technologies and trained sign language interpreters. Strengthen community-based early warning systems that reach and engage persons with disabilities. Provide targeted training for disaster personnel on responding to the specific needs of persons with disabilities.

Data analysis

An iterative, analytical strategy drawing on grounded theory techniques (Glaser & Strauss, 2017) was systematically implemented through stages of data familiarization, open coding, constant comparison, saturation assessment, respondent validation, deductive augmentation and consolidated thematic integration. The iterative sequence commenced with repeated close readings of transcripts and documents to immerse in participants’ narratives regarding challenges faced at the intersection of disability and disaster. Initial line-by-line open coding induced salient categories by disaggregating narrative data into constituent meaning units and coding these fragments based on conceptual commonalities oriented around living amidst vulnerability. These early codes captured participants’ perspectives by disaggregating their narratives and selectively reassembling conceptual fragments into categories reflecting common ideas within disability-disaster lived experience.

Coding underwent refinement through constant comparison, deliberately contrasting coded extracts across the dataset to assess relative dimensionality and refine categorical boundaries. The criterion of ‘saturation’ was leveraged to confirm adequate sampling depth had been reached, with data collection intentionally continued until new interviews and documents elicited redundant rather than novel insights (Guest et al., 2006). In keeping with member-checking procedures aimed at enhancing credibility, the preliminary analysis phase involved preparing summaries of key emerging themes, organizing supporting quotes and crafting open-ended questions to solicit participant perspectives. These preliminary outcomes were shared in one-on-one exchanges with a diverse subset of participants across dimensions including gender, age and disability type. While assessing the credibility and resonance of key themes based on their lived experiences, participants had the opportunity to offer additional context, correct potential misconceptions stemming from researcher perspective gaps, and confirm diverse viewpoints were represented with integrity rather than marginalized.

Post-saturation, the consolidated codes and categories were systematically synthesized into integrated thematic structures using axial coding procedures (Corbin & Strauss, 1990). This involved selectively reassembling conceptual fragments into coherent explanatory schemes while mapping interconnections across categories. It was at this stage of reconsolidation that selective integration of external disability-disaster concepts was implemented to complement the data-driven codes. This mixed approach thereby drew primarily from inductive codes fundamentally rooted in participants’ narratives themselves while judiciously augmenting with complementary deductive themes from wider theory where clearly reinforcing dataset insights. For example, the external concept of ‘vulnerability amplification’ within disaster scholarship helped enrich interpretive depth regarding how exclusion from preparedness efforts exacerbated risks for people with disabilities. This was integrated given its reinforcing fit with the recurring categorical theme of unaddressed complex requirements making disaster navigation profoundly more difficult. Thus, blending conceptual inputs maintained analytic authenticity by only incorporating externally derived concepts when clearly resonant with categories intrinsically emergent from the coded data itself.

Results

East Java faces a complex array of natural disaster threats including earthquakes, volcanic eruptions, flooding, landslides and tsunamis owing to its geography encompassing coastal, mountainous and urban regions. Recent major disasters impacting the province include the 2006 Yogyakarta earthquake which resulted in over 5700 deaths and economic losses surpassing USD 3 billion nationally, alongside the 2018 Sunda Strait tsunami which claimed over 400 lives in the Banten area of West Java. Considering this pronounced exposure to catastrophic risks across Indonesia, disaster management has emerged as a pivotal governance priority handled by various bodies, involving multiple governmental agencies across national, provincial and district levels.

The National Disaster Management Agency (BNPB) serves as the centralized authority steering preparedness policy and emergency response coordination countrywide. Respective provincial and district Regional Disaster Management Agency (BPBD) offices contextualize strategies to local needs while collaborating on resource mobilization. With intensified disaster threats looming nationwide, these governmental structures have implemented various resilience-building initiatives including risk mapping projects, community preparedness training and infrastructure reinforcement efforts.

However, disability inclusion in disaster planning remains starkly limited across governmental initiatives in Indonesia including East Java. While some provincial regulations technically require addressing disability access needs, implementation gaps abound regarding concrete action plans, resource allocation, monitoring mechanisms and multi-stakeholder coordination strategies tailored to disabled citizens. At the grassroots level, disability advocacy groups have slowly emerged to fill voids in equitable policy implementation, campaigning for reforms, accessibility infrastructure and assistance protocols catering to varying impairment categories. At the same time, these organizations frequently concentrate on specific disability types, such as wheelchair users or visual/hearing impairments, failing to realize comprehensive inclusion.

Furthermore, reliant on volunteer efforts and external project funding, their activity has centered on advocacy campaigns more than comprehensive service delivery. These resource constraints have limited their ability to scale impact, as they remain only negligibly incorporated as partners within formal governmental disaster management systems. Nonetheless, some groups have piloted preparedness training to enhance member disaster resilience, displaying initiative despite minimal funding. Still, without adequate resources, community reach, relief capabilities and structured coordination integration, even the most well-intentioned grassroots disability organizations often struggle to meaningfully uphold disability rights when catastrophes strike.

Culturally, discriminatory societal attitudes coupled with inadequate legal protections impose pervasive hardships for Indonesia’s disabled populace estimated at over 12 million citizens nationwide by WHO estimates as of 2022. Stigma and exclusion obstruct access to public spaces and essential services while restricting socioeconomic participation for disabled individuals already wrestling with medical, mobility or communication challenges daily. This ingrained marginalization amidst everyday life magnifies vulnerabilities and uncertainty when disasters strike, further denying disabled citizens equitable access to prepare for or receive emergency support, exacerbating risks of harm. While recent national policy frameworks including Indonesia’s National Action Plan on Disability and ratification of the UNCRPD display increasing rhetorical recognition of disability rights and inclusive development principles, translating such into localized action remains problematic.

It is in this context that sizable gaps remain between legal mandates and on-ground execution tailored to safeguarding Indonesia’s marginalized disabled citizens during catastrophes. With disaster resilience occupying the national spotlight under Indonesia’s 2020–2024 National Medium Term Development Plan (RPJMN), space has emerged for strengthening inclusion across preparedness and response protocols. Nonetheless, shedding light on granular experiences of disabled individuals during East Java disasters remains essential, providing an evidentiary foundation guiding context-specific planning and resource allocation able to uphold accessibility when adversity strikes.

In presenting the empirical results that emerged, we structured central themes reflecting this complex interplay of challenges and capabilities at the intersection of disability and disaster. We commence with elucidating the theme of ‘vulnerability amplified’ – how communication and infrastructural barriers intensified risks and anxieties for participants when disasters struck. We then transition toward the planning deficiencies participants continually confront, with the theme ‘locked out of safety’ highlighting gaps endangering disabled citizens when emergencies erupt. Finally, we close with the uplifting thread of ‘beyond survival’ – showcasing how some participants harnessed remarkable resilience by supporting others during storms of crises, despite confronting obstacles themselves. This thematic arc, spanning heightened marginalization to emergent empowerment, frames the ensuing results anchored directly in participants’ stirring lived experiences.

Theme 1. Vulnerability amplified: seeing disasters through disability

Physical impact

The conversations brought to light sophisticated perspectives on personal risk among people with disabilities during disasters, reflecting their perceptive understanding of the distinct needs and barriers they routinely navigate. With consideration to the pivotal role impairment types and severity play in informing risk outlooks and the capacity to leverage residual capacities to manage hazards, individuals detailed concerns aligned with their specific limitations.

Those with mobility impairments voiced particular apprehension about the accessibility of shelters and transport during mass evacuations, underscoring how widespread infrastructure deficits could critically hamper their responsive participation. Also, they elucidated how limited accessibility and inadequate access features prevalent in rural areas tend to further endanger already precarious circumstances when disasters strike. Similarly, individuals with sensory disabilities emphasized concerns about gaps in emergency alerts and communication systems, with several highlighting concrete struggles they have previously faced in securing timely informational updates throughout emergencies, consequently impeding their ability to prepare and react with effectiveness. While perspectives understandably varied across disability categories, a common thread emerged around refined understandings of amplified risk stemming from systemic infrastructural and information barriers.

Moreover, more severe forms of disability appeared to inform tangibly different outlooks on risk and associated coping strategies. Participants with extreme disabilities, including those managing multiple impairments, depicted experiencing more pronounced feelings of anxiety and fear as they grappled with heightened barriers to accessing emergency services and meeting basic needs during disasters. In contrast, those articulating relatively milder disabilities conveyed greater confidence and perceived preparedness in handling safety risks during disasters, primarily attributing this outlook to accumulated experience and the availability of social support networks.

I am genuinely concerned about accessibility issues in emergency shelters and transportation during evacuations. I experienced this firsthand when I had difficulty reaching the emergency exit during a previous evacuation due to narrow corridors and limited accessibility. This experience made me realize how inadequate infrastructure can significantly heighten the vulnerability of people with disabilities during disasters, especially in rural areas with limited accessibility. (Participant 16, Female, 37 years old, Compounding disabilities (physical, mental condition), Flooding disaster, Pasuruan)

Emotional/psychological impact

Further discussions made evident that individuals with more extreme disabilities tended to have markedly different perceptions of risk and associated coping strategies during disasters. Participants managing severe or multiple impairments depicted undergoing amplified feelings of anxiety and trepidation as they wrestled with heightened barriers to securing emergency services and fulfilling fundamental needs when catastrophe strikes. In contrast, those articulating relatively moderate disabilities expressed greater confidence and an enhanced sense of preparedness in navigating safety risks in disasters, mostly crediting such resilience to lived experience weathering prior crises alongside the buffer of supportive social networks.

As a matter of equal importance, it became apparent that personally undergoing a disaster could elevate perceptions for people with disabilities, especially if destabilized by haunting memories of previously enduring similar events. The cumulative emotional impact of serial exposure to disasters, coupled with hard-won knowledge extracted from repeated tribulations, appeared to engender pronounced anxiety and vulnerability around the prospects of impending crises. While resources such as specialized technologies and care services could bolster disaster coping capacity, their absence was linked to magnified apprehension and distress around inadequate preparedness. Likewise, individuals obstructed from accessible information and communication pipelines during emergencies depicted enduring uncertainty and informational voids concerning personal risk, eliciting further anxiety.

Having access to resources that can assist me, such as sign language interpreters, accessible information, and communication technologies, boosts my confidence and preparedness in managing personal risks during disasters. However, in their absence, I feel vulnerable and ill-equipped to cope with the challenges of a disaster. As an individual who is deaf, the lack of essential information and communication during disasters adds to my stress and uncertainty. I may not be able to understand what is happening or how to get help, which can make me feel even more scared and alone. (Participant 14, Female, 61 years old, Sensory (hearing) disability, Flooding and earthquake disasters, Mojokerto)

Indeed, the array of experiences has enlightened the complex interplay between vulnerability and resilience among people with disabilities when confronted by catastrophes. The findings pointed to the multi-sided factors capable of shifting the balance between precariousness and perseverance within disaster contexts. For instance, the possibility of severed infrastructure links or fractured service access during crises could impart acute endangerment for those with mobility limitations or reliant upon medical equipment, potentially having severe health consequences. However, the narratives also revealed pathways fostering an enhanced sense of capability during disasters, whether through the personal wisdom accrued from undergoing serial tribulations or the comfort drawn from established support networks. Individuals tempered by repeatedly navigating chaotic disasters portrayed greater self-assurance in managing contingencies and preparations when yet again thrust into turmoil. Similarly, those fortified by the backup of robust resources, such as specialized assistive equipment or emergency finances conveyed feeling more psychologically empowered amidst disasters, despite external disruptions.

Theme 2. Locked out of safety: preparedness left behind

Communication

At the core of the issue is the ongoing challenge faced by people with disabilities, as they frequently grapple with significant obstacles in disaster management and mitigation initiatives due to the insufficient attention given to their diverse needs. The complex requirements of this community, spanning essentials, such as accessibility, communication, and medical assistance, appear routinely discounted across prevailing disaster preparation and response mechanisms, critically obstructing their capacity to resiliently recover from catastrophe and dangerously escalating risk exposure. This oversight, rooted in substantial gaps in understanding and accommodating the specialized needs of people with disabilities during emergencies, inflicts particularly egregious harm upon those with mobility limitations, plunging them into grievous challenges and adversity. Participants noted emergency services and evacuation protocols often overlooking the tricky challenges confronted by those with disabilities during crises, resulting in neglect and amplified vulnerability.

Further discussion revealed that while most participants had undergone prior disasters and evolved personal strategies to fill recurring response gaps, systemic infrastructure limitations persisted jeopardizing access and mobility despite their adaptive efforts. Additionally, participants overwhelmingly emphasized reliance on informal disability support networks rather than formal governmental structures before, during and after disasters, owing to substantial barriers securing responsive assistance from official emergency channels. They described disability communities banding together to fill information and resource gaps amplified amidst crises that formal systems failed to address. Hence barriers rooted in inaccessible built environments and fractured communication pipelines continued exposing people with disabilities to disproportionate adversity across repeated disaster responses. Nonetheless, solidarity emerging through peer support networks helped disabled citizens share wisdom and resilience tactics accrued from recurrent turbulent exposures.

One time during the flood, I had trouble evacuating because there were no accessible routes or transportation options. I also could not understand the emergency information because it was not in an accessible format. I felt scared and alone. It is important for emergency services to consider the needs of people with disabilities, so we do not get left behind. (Participant 3, Male, 62 years old, Compounding disabilities (physical, medical condition), Earthquake and fire disasters, Kediri)

Infrastructure

It was also revealed that unexpected emergencies can underscore the critical necessity for inclusive infrastructure and accessible design in public spaces that proactively prioritizes the safety of all people, including vulnerable disability groups. The absence of such considerate accommodations risks exacerbating existing challenges and barriers faced by people with disabilities while intensifying deeply entrenched disparities within prevailing emergency management systems. Findings highlighted how shortfalls in adequate accessibility such as lacking ramps, absent tactile signage, or missing audio cues could severely obstruct navigation and mobility for many during evacuations, consequently elevating their exposure to potential harm or injury when disasters strike. Participants depicted scenarios wherein visually impaired individuals may frantically struggle to independently locate exit routes sans sensory wayfinding cues, while those relying on wheelchairs could find egress completely impossible without accessible exits when attempting to flee dangerous situations such as fires. Such oversights in implementing inclusivity heightened the dangers faced by disabled citizens during emergencies, foregrounding persisting inequities in safety protocols. And despite expanding rhetorical awareness of accessibility issues, the specific needs of people with disabilities appear to still become frequently overlooked when designing emergency plans and services in practice, leaving them profoundly more vulnerable amidst catastrophes.

Even though the government and organizations are trying to be more inclusive, emergency plans and services still do not take our unique needs into account. I have had trouble understanding the information provided during emergencies because it is often unclear and difficult to follow. And public spaces like sidewalks, buildings, and transportation are often not accessible, which makes it hard for me to evacuate or get help. This lack of consideration for our needs makes us more vulnerable during disasters and can have serious consequences. (Participant 6, Female, 33 years old, Compounding disabilities (sensory, physical), Earthquake disaster, Blitar)

Despite expanding government efforts and inclusive policies to promote accessibility, people with disabilities appear to still wrestle with sizable challenges in securing emergency services and information pipelines during disasters in practice. Discussions suggested the lack of genuinely inclusive and navigable infrastructure, scant training among frontline emergency responders on disability needs, alongside strictly limited provision of vital assistive technologies intensify the complex difficulties this group already shoulders during emergencies. As a result, people with disabilities – among the most institutionally vulnerable groups during disasters – increasingly view such well-intentioned governmental inclusion policies and frontline emergency response systems as substantively inadequate and wanting in genuine understanding of their needs, requiring urgent and overdue improvement.

I know firsthand how difficult it is for people with disabilities to cope with emergencies. Even though there have been some efforts to make disaster management and mitigation more inclusive, there is still a long way to go. Accessible infrastructure and assistive technologies are often lacking, making it hard for us to move around and access essential resources during emergencies. This leaves us more vulnerable to harm. (Participant 8, Female, 47 years old, Physical disability, Flooding and earthquake disasters, Surabaya)

Theme 3. Beyond survival: from a ‘burden’ to empowerment

While disasters can amplify marginalization and vulnerability for people with disabilities, who routinely wrestle with discrimination and neglect, the conversations also revealed the resilience and empowerment this community can exhibit during crises. Several participants depicted consciously shifting priorities from solely securing personal survival toward making active contributions to bolster collective response efforts, drawing strength by mobilizing established social support networks. Such agile participation in filling urgent needs showcased uplifting transformation, overturning obstacles through positive communal impact and increasing their sense of agency despite external barriers. As they collaborated in disaster response by marshaling wisdom accrued from past experiences, participants strengthened social ties and solidarity while rising beyond circumstances to claim empowerment.

I have learned a lot about the challenges of emergencies by experiencing them myself. But what has really helped me to cope with them is connecting with people who have been through similar experiences. Instead of just worrying about my own survival, I have found empowerment through helping others. I have been able to use my knowledge of accessibility and mobility to help people who need it. Despite losing my legs, I have found a new sense of purpose and fulfilment in helping others. These experiences have shown me that even in the face of adversity, we can still grow and contribute to our communities. (Participant 4, Female, 53 years old, Physical disability, Flooding and fire disasters, Jember)

Discussions revealed growing recognition that people with disabilities play an increasingly vital role in spearheading disaster resilience and community development. Through collaborative participation alongside peers and stakeholders, narratives indicated people with disabilities have positively transformed preconceptions from passive liability toward showcasing indispensable assets during emergency response. Demonstrating remarkable resilience and adaptability, many take active ownership in grassroots preparedness and real-time reaction, leveraging wisdom accrued from personal encounters with vulnerability. Hence their contributions in mobilizing specialized knowledge of accessibility and mobility to assist others during crises proved doubly notable given the marginalization this group routinely wrestles amidst disasters. Conversations suggested that when communities make concerted efforts to acknowledge and incorporate their unique insights, more equitably inclusive disaster planning can take shape to meet the needs of vulnerable groups – catalyzing more responsive, sustainable strategies benefitting all citizens through consciously collective participation.

I may have a disability, but that does not mean I cannot help others. I can do practical things like cutting onions, or I can share my knowledge of accessible routes. I know that we can all make a difference if we work together. We can build a more inclusive and resilient community by collaborating with each other. (Participant 10, Female, 42 years old, Physical disability, Flooding and fire disasters, Probolinggo)

While disasters can amplify marginalization and vulnerability for people with disabilities, who routinely wrestle with discrimination and neglect, the conversations also revealed the resilience and empowerment this community can exhibit during crises. Several participants depicted consciously shifting priorities from solely securing personal survival toward making active contributions to bolster collective response efforts, drawing strength by mobilizing established social support networks. Remarkably, conversations revealed some participants with cognitive disabilities and mental health conditions consciously resisting typecasting as helpless ‘burdens’ needing rescue, instead leveraging lived experience to support others during disasters through grassroots response efforts. They spotlight ingrained sociocultural stigma erecting barriers to securing assistance for psychosocial needs amidst crises. However, through solidarity with disability peers, several described discovering renewed purpose rallying to fill urgent information and care gaps by creatively adapting to volatile circumstances. Despite barriers erected by stigma, they discovered renewed purpose rallying peers to fill information and care gaps by creatively adapting – thus showcasing empowerment pathways forged even from positions of exclusion. As explained by Participant 17 (Male, 44 years old, Physical disability, Flooding and earthquake disasters, Surabaya), ‘We may face greater barriers, but we have gained strength by facing adversity that allows us to help others’.

Conversations illuminated that at the heart of this uplifting transformation lies the power of collaborative social support networks and solidarity purposefully forged among marginalized disability communities, enabling them to collectively transcend barriers and discrimination that have traditionally obstructed their disaster participation. By highlighting each other’s strengths and resilience while promoting participative agency, these grassroots networks have profoundly empowered people with disabilities to claim active roles as valued team players in emergency response contexts, filling pressing needs. The increasing emergence of such supportive webs assumes particular significance given widespread accounts of people with disabilities wrestling with accessing conventional top-down assistance channels during disasters when needs intensify for all, yet systemic gaps in understanding their requirements persist. Hence these networks enable marginalized individuals to fill voids left by mainstream response efforts through sensitively attuned support, providing a lifeline for many when crises erupt.

Discussion

With disasters disproportionately impacting disabled communities due to inadequate preparedness and exclusion from relief efforts, intensifying catastrophe trends worldwide underline the critical imperative of prioritizing inclusive strategies that embrace people with disabilities within disaster risk reduction initiatives. Our findings show manifold personal disaster perspectives among people with disabilities, exposing heightened risks but also resilience tactics leveraging collective supports and wisdom accrued through recurrent exposures. Participants surfaced much marginalization rooted in barriers that magnified vulnerabilities amid disasters (Chang et al., 2023; Stough & Kang, 2015); yet also displayed remarkable leadership, marshaling insights to guide emergency response when formal systems faltered. Hence while validating exclusion, our study uniquely contributes textured accounts illuminating sociocultural forces shaping adversity as well as solidarity – wherein promoting nuanced understanding of barriers while championing inclusive participation emerges as imperative.

Consistent with prior scholarship, our findings provide validating evidence that exclusion of persons with disabilities persists across current disaster systems, infringing on protections codified within global accords, such as the United Nations (2006). Resulting hardships encompassed fractured emergency information comprehension and mobility barriers jeopardizing escape alongside access to essential post-disaster services. Compounding struggles to secure sustenance, medical care and assistive technologies enabling functioning, participants cited adversities amid infrastructure fragility and inadequate disaster response processes – with disabilities exacerbating challenges. Therefore, even with ambitious global commitments, truly inclusive disaster paradigms continue to be largely unrealized (Harrati et al., 2023; Rao et al., 2022), with technical fixes insufficient absent attitudinal changes that uphold rights during turmoil.

From a more critical perspective, our disaster-disability lens not only discloses sociocultural forces perpetuating unequal accessibility protections through physical barriers, but also unveils stigmatization and dismissal of capabilities erecting less visible yet equally formidable obstacles to inclusion. Catastrophes brutally expose these engrained prejudicial barriers baked into systems and psyches over years of neglect – barriers that suddenly morph routine indignities into grave exclusion that threatens survival. Tragically, the extremity of disaster impacts lays bare systemic and social ableism that is too often concealed, as disabled persons’ compounded struggles for basic needs, mobility, medical care and communication access post-catastrophe spotlight the depth of everyday inequities and devaluation.

Yet, beyond the negatives uncovered, our lens also unwraps sociocultural forces fostering solidarity and resilience, as participants demonstrated remarkable leadership supporting collectives by sharing wisdom accrued through recurrent exposure (Stough et al., 2020). This compels reassessing orthodoxies that frame disabled citizens solely as passive recipients rather than as experts with pivotal disaster insights who mobilized grassroots response through activism when formal systems excluded their needs. Thereby our study uniquely responds to appeals from disability rights advocates to place lived experiences front-and-center in policymaking (International Disability Alliance, 2022) – aligning with calls to shift from tokenistic inclusion toward meaningful participation leveraging expertise to guide strategies benefitting all (Krahn et al., 2015).

Going forward, twin imperatives emerge: First, dismantling sociocultural and infrastructural barriers that perpetuate unequal treatment amidst crises by amplifying environmental obstacles and dismissive attitudes. Second, championing participatory involvement of disabled individuals and collectives is required to guide contextualized strategies, wherein the synchronized progress across both culture and structures promises authentic transformation. This demands embracing nuanced, intersectional risks and requirements within disability communities shaped by diverse social markers such as gender, ethnicity and age (Stough et al., 2017).

While our sampling incorporated some variability, participatory paradigms that situate disabled individuals as leaders shaping project direction provide vital pathways for non-disabled scholars to show humility while uplifting interventions guided by lived expertise (Vaughn, 2012). Such approaches uphold commitments within disability studies to elevate historically suppressed perspectives (Valle & Connor, 2019) by creating space for marginalized voices to guide processes addressing barriers they differentially face.

Moreover, participatory principles assume relevance regarding disaster and climate contexts by championing inclusive involvement and foregrounding justice amidst crises (Akinboye & Morrish, 2022; Pearson et al., 2024). Our exploratory study responds to appeals for empowering disability research that strengthens equitable practices and reshapes unjust power dynamics by spotlighting diverse expertise (Wertans & Burch, 2022). While initial, our critical lens and calls for participatory platforms offer vital springboards for solidarity across movements seeking inclusive resilience paradigms that leave no one behind – thereby spurring collaborative reform efforts upholding disability rights across emerging DRRM and climate governance ecosystems.

Advancing conceptual frontiers at the disaster-disability intersection

Our study makes several conceptual contributions advancing scholarly frontiers. First, while risks during disasters have received extensive focus (Neumayer & Plümper, 2007; Sakamoto & Yamori, 2009), insufficient scholarship spotlights sociocultural forces heightening adversity for people with disabilities when catastrophes hit (Smith et al., 2022). Our research addresses this gap by unveiling systemic stigma alongside dismissal of capabilities that magnify precarity – hardship amplified by built infrastructure flaws that abruptly block access, suddenly weaponizing mundane mobility obstacles. Thereby our conceptualization elucidates cultural perceptions erected over years through omissions in representation, participation and resources provision that disproportionately endanger people with disabilities during disasters serve as pivotal missing pieces explaining adverse impacts.

Second, our paradigm contributes by spotlighting sociocultural forces fostering solidarity during disasters as well – thus balancing the frequent singular focus on vulnerability. We spotlight remarkable resilience practices among participants leveraging cumulative wisdom derived from lived experience navigating recurrent catastrophes and routine exclusion. Thereby our conceptual framing brings into sharp relief the capabilities cultivated by people with disabilities resisting internalization of stigma through collaborative meaning-making within community that affirms dignity. Thereby, our conceptual framing brings into sharp relief the capabilities cultivated by people with disabilities resisting internalization of stigma through collaborative meaning-making within community that affirms dignity. These capabilities emerge from the very forces enabling marginalization yet catalyzing group solidarity and healing with which providing balance. Indeed, illuminating the sociocultural undercurrents perpetuating injustice alongside resilience provides vital balanced insights essential for holistic understanding and policy reform.

Third, our study furnishes conceptual building blocks validating calls to shift from damaging orthodoxies of disability as individual deficit toward affirmation of disabilities as rich intersectional identities and sources of cultural wealth cultivated in community against shared odds (Annamma et al., 2013). Indeed, the leadership displayed by participants marshaling support for peers compels valuing experiential wisdom accrued from navigating barriers – both during disasters but also through routinized spaces and systems that casually sideline accessibility needs absent dramatic duress. Here, our findings contribute philosophical validation to calls for elevating disabled empowerment in policymaking by substantiating arguments for codifying leadership provisions that facilitate participatory disaster governance processes.

Finally, conceptually our exploratory study makes strides toward participatory paradigms that may fuel future research co-created and co-led by people with disabilities at the frontlines of disasters and climate risk. Initial inroads responding to appeals to remedy exclusion in these spaces sets the stage for further efforts embedding people with disabilities as equitable partners within projects investigating the geographies of risk and resilience they traverse daily. Our conceptual foundation invites more radical collaborative vehicles that may match earlier calls for ‘nothing about us without us’ that galvanized civil rights efforts with action. Accordingly, philosophically, our lens and recommendations strive to enact both conceptual justice and more inclusive material realities with equal gravity.

Implications for policy and social change

Beyond advancing conceptual frontiers, our study findings carry significant implications for policy and social change toward more inclusive, participatory societal paradigms that leave no one behind. First, findings reinforce the imperative need for policy frameworks to uphold commitments encoded within agreements, such as the United Nations (2006) that guarantee equitable rights protections and accessibility for people with disabilities during disasters and hazards induced by climate shifts. Ensuring national and local initiatives actively implement – rather than passively publicize – inclusion represents a pivotal priority at the intersection of DRRM, climate action and disability rights.

Second, the marginalization and barriers surfaced point to major gaps in educating and building awareness regarding unique needs across infrastructure and information systems planning within emergency management, humanitarian response and wider resilience efforts. Our study reinforces calls for compulsory training, professionalization standards and monitoring mechanisms that inject considerations surrounding disability across major disaster governance institutions to transform cultures and capacities currently neglecting this demographic. Concretely, insights from our participants’ struggles showcase precisely where further education to spur attitudinal shifts must occur amongst first responders, humanitarian professionals and infrastructure architects designing the built environments that proved so brutally exclusionary when catastrophe hits.

Relatedly, our findings reveal implications for desperately needed policy and resource allocation toward making accessibility and inclusion an urgent mainstream priority rather than afterthought across urban and rural community development initiatives shaping lived spaces. In particular, intensified climate threats necessitate rapidly mainstreaming accessibility and universal design principles across public infrastructure systems undergoing modernization – such as transport, water, sanitation and energy – since integrating disability access across sectors proves vital to equitable, sustainable development.

Much more, participants’ leadership marshaling insights to assist collective response when formal systems faltered spotlights policy pathways to meaningfully support and fund disabled peoples organizations (DPOs). Our study makes evident DPOs’ vital bridging roles championing inclusion while filling gaps through solidarity-driven grassroots mutual aid when crises erupt. Ecosystems fostering community participation must institutionally empower and resource DPOs operating at climate and disaster frontlines with funds, capacity building, leadership roles and platforms to guide localized strategies. There, inclusive policymaking may match principled rhetoric with material commitments and accountability mechanisms to realize rights for those rendered disproportionately vulnerable.

Fundamentally and in the interests of justice, our findings ultimately reiterate calls by disability rights advocates for people with disabilities to rightfully gain influential priority-setting involvement in directing DRRM and resilience policymaking through platforms, such as the International Disability Alliance. Specifically, national planning processes must reserve and provide reasonable accommodations supporting equitable participation of disabled citizens alongside their representative organizations in disaster preparedness and climate adaptation dialogs. We highlight such accommodations enabling inclusive planning participation as an issue central to representational justice principles and moral imperatives for holistic, diversity-responsive policy frameworks.

Our modest study therefore carries hopeful signals regarding avenues for awareness-building, accessibility infrastructure modernization, DPO support and participatory involvement through which obstacles elucidated may inform policy and social change for a more inclusive society. Conceptually and ethically, our findings through the disability-disaster intersectional lens point to rich possibilities ahead should pathways be opened for greater visibility of diversity within human experiences, capabilities and sources of knowledge to create resilience.

Disclosure statement

The authors report there are no competing interests to declare.

Additional information

Notes on contributors

Erna Setijaningrum

Erna Setijaningrum is an Associate Professor and Director of the Master of Public Policy Program at the Department of Public Administration, Universitas Airlangga in Surabaya, Indonesia. She has taught courses at the department since 2000, covering policy and public service management, organizational behavior, public service measurement and performance, public sector capacity building, and public service administration. Setijaningrum’s research interests include public policy and service delivery, especially for marginalized groups, such as migrant workers, people with disabilities and homeless children. She serves on the board of the Indonesian Public Administration Association and holds membership in the Indonesian Association of Women’s, Gender and Children’s Studies.

Asiyah Kassim

Asiyah Kassim is a Senior Lecturer at the Faculty of Administrative Science and Policy Studies, Universiti Teknologi MARA in Shah Alam, Malaysia. Her research focuses on the challenges of implementing collaborative approaches to policy, governance and action for sustainable development. Kassim has worked on projects related to international science and technology cooperation, risk and disaster governance, sustainable urban development, climate change adaptation and global environmental changes. Her areas of expertise include community development, risk and disaster sociology, environmental governance and diplomacy, urban governance, social work and disability, and environmental issues. Kassim has also worked at the Australian National University’s Centre for European Studies and Centre for Policy Innovation, where she participated in international cooperation projects, including dialogues on science, technology, innovation and social issues from a global perspective, and collaborated with stakeholders on global environmental change issues such as human security, population, migration and food security.

Agie Nugroho Soegiono

Agie Nugroho Soegiono is a Lecturer at the Department of Public Administration, Universitas Airlangga in Surabaya, Indonesia, with a strong interest in public policy and administration, particularly in education and social policy. He currently serves as the Departmental Secretary, teaching courses in capacity building, comparative public administration and public policy. Soegiono has extensively published research on public policy and governance, with a specific focus on the digitalization of public services. His work examines the barriers disadvantaged groups face in accessing public services, and strategies to promote greater inclusion and participation in society. In addition to his scholarship, Soegiono is an active member of the Indonesian Association for Public Administration, where he has contributed to various initiatives aimed at enhancing the quality and efficacy of Indonesia’s public services.

Putu Aditya Ferdian Ariawantara

Putu Aditya Ferdian Ariawantara is a Lecturer at the Department of Public Administration, Universitas Airlangga in Surabaya, Indonesia, where his teaching fields include public policy, public policy design and formulation, disaster policy and management, state administrative law, organizational change and development and leadership. His research areas are public policy formulation and implementation, disaster policy and management, local governance and strategic management of the public sector. Ariawanatar also engages in community service activities that focus on empowering the local economy and culture. In addition to teaching, research and community service activities, he mentors students to participate in academic competitions nationally and internationally. Ariawantara also serves as a national reviewer for Student Creativity Program activities initiated by the Directorate of Learning and Student Affairs at the Ministry of Education, Culture, Research and Technology. He is also a member of the scientific association at the Indonesian Association for Public Administration.