Global Disability Justice In Climate Disasters: Mobilizing People With Disabilities As Change Agents
An estimated one billion people worldwide were living with a disability as of 2015.1 Roughly 80 percent of disabled people live in resource-poor nations, and thus many disabled people are highly vulnerable to climate change impacts and disasters.1 Yet disability is often overlooked in the development of policies and practices to deal with climate-related risks and disasters even when sex, socioeconomic class, and race are considered.2 Disability remains largely invisible in how government agencies and humanitarian relief organizations operate, even though the consequences are grave, particularly for disabled people of color and other groups that have historically been marginalized on the basis of ableism, racism, and other systems of oppression. For these reasons, the principles of disability justice need to be integrated in climate and disaster preparedness policies and practices.
In this article we draw on our collective experiences as deaf scholars and practitioners active in the climate change and disability-inclusive disaster risk reduction space. First, we define disability justice and discuss the multiple vulnerabilities of disabled people to disasters and climate change. Then, using brief case studies, we show that disabled people are agents of change in climate justice and emergency preparedness efforts spanning the globe, including in Australia, the US, and regions hosting disabled refugees from developing countries. We suggest questions to disaster and health management practitioners that center disability justice in agency practice and disaster planning.
Disability Justice
Briefly put, disability justice is a framework that applies across disabilities and that values “access, self-determination, and an expectation of difference.”3 It goes beyond the single-issue, civil rights–based approach that White, affluent disabled people have customarily led, acknowledging that rights are often more symbolic in practice and that disabled people may be unable to assert their rights due to physical, financial, and structural barriers.4 Disability justice recognizes no hierarchy of disability and calls for an intersectional movement that connects disabled people with other groups affected by historical systemic oppression to press for structural changes not unlike those required for achieving health equity. According to the Robert Wood Johnson Foundation, structural change “requires removing obstacles to health such as poverty, discrimination, and their consequences, including powerlessness and lack of access to good jobs with fair pay, quality education and housing, safe environments, and health care.”5 Disability justice aims to align itself with other movements working toward liberation, including environmental justice, racial and class justice, restorative justice, and LGBTQA+ equality.
Disabled people differ enormously in their disabilities, identities, and cultures. People with sensory, intellectual, mental health and psychiatric, neurodiversity, physical and mobility, and learning disabilities can experience climate change and disasters differently, “all complicated by race, class, gender, immigration, sexuality, welfare status, incarceration, age and geographic location.”6 Making broad generalizations about what disabled people “need” and concomitant best practices is impossible. Yet instead of basing access to social supports on individualistic and independent assumptions, disability justice views access as calling for collective actions and interdependent relationships. It embraces the strengths that disabled people of color, particularly from resource-limited settings, can bring to climate movements, such as their knowledge of injustice and their ability to organize effective collective aid efforts.
Disability In Climate Change And Disasters
Disability intersects with both climate change and disaster policy and practice. Many local, national, or multinational government agencies and nonprofit organizations are active in reducing or preventing disaster risks through mitigation efforts, planning for potential disasters, providing effective emergency responses to minimize hazards, and helping with the often daunting process of reconstruction and recovery.7 In parallel, for at least the past thirty years similar entities have attempted to anticipate potential adverse climate impacts on sectors such as agriculture, cities, and human health. In addition to reducing climate risks through fewer carbon emissions, those actors have begun developing plans for adaptation to these risks.
In recent years many countries have endorsed national and international policies that support the inclusion of people with disabilities in both climate change emergencies and humanitarian settings. Similarly, a growing number of government agencies and aid organizations have produced disability-specific reports to help prepare for disasters. However, these efforts often amount to accessibility in name only, and they do not necessarily translate to accessible and equitable practices on the ground.
To improve outcomes in terms of disability justice, policy makers, organizations, and on-the-ground practitioners should consider the multiple vulnerabilities that disabled people may manifest.8 Worldwide, disabled people are often among the most economically and socially marginalized in their communities, partly because they have less access to education and employment. Disabled people, particularly women, are disproportionately poor, and higher rates of poverty among disabled people can lead to further adverse health impacts due to a lack of access to routine medical care, rehabilitative services, or assistive devices. Importantly, disabled people are vulnerable to climate change and disaster risks not necessarily because of their disabilities but, rather, their lack of effective access to information, support, and services.
Climate change and disasters raise significant concerns for disabled people in particular.
Climate change and disasters raise significant concerns for disabled people in particular. First, existing disabilities mediate whether and how people are physically, mentally, socially, or spatially susceptible to climate harms.9 For example, people who have mobility issues can be less ready to relocate quickly out of a perilous situation or may be abandoned in a rushed evacuation, as occurred during Hurricane Katrina in the US. Some disabled people may be physiologically more likely to suffer adversely from heat or smoke—compounded by pollution they may already be exposed to. Disabled people also may be economically excluded from geographical areas with lower climate risks (for example, in city neighborhoods with high tree coverage or away from floodplains).
Second, disabilities can affect whether and how people can gain access to information and resources that would enable them to prepare for, manage, and adapt to disaster and climate health risks in a timely way. Disabled people need to know about whether and when these risks could affect them. Yet information about bushfires, heat waves, and sea surges might not be in accessible formats (such as captions or audible messages). Moreover, lower-income disabled people may struggle to afford adaptations to climate risk, such as backup generators to power ventilators. They also may confront extra barriers to obtaining technological solutions (for example, mobile phones, computers, and internet access). In addition, they may face the “digital divide” and illiteracy, both of which are more widespread in developing countries.
Third, disabilities can intersect with “creeping” forms of disasters and climate impacts in ways that are difficult to observe and anticipate. For example, the capacity of disabled people to gain access to water, food, and housing as basic needs will affect their health, yet how climate change might reshape this access is rarely on the policy agenda.8 In resource-poor settings, disabled people may lack access to potable or running water or may need to travel across inaccessible terrain to access water and food. Disabled people in resource-poor nations have differential access to sanitation as a result of physical, social, and technical barriers.10 Moreover, in lower-income regions from India to Africa, heat and drought are already damaging agricultural production, making food access less stable and more costly. This means that disabled people who have adequate access now may lose access in the future because they lack the social and economic power to retain it. Disasters and climate change impacts can be newly disabling for everyone, in that storms, bushfires, floods, heat waves, and food- and waterborne diseases can inflict physical, health, and mental injuries on all people.
Case Studies
To illustrate how disability is overlooked in responding to climate-related health impacts and planning for disasters, and also how disabled people can lead collective aid efforts, we consider case studies from different global regions.
2019–20 Black Summer And 2022 Floods In Australia
Australia drew worldwide attention for its 2019–20 bushfires and the 2022 floods. Recent government reports show that repeated disaster events have magnified Australia’s lack of emergency preparedness, disproportionately affecting disabled people.11 Although these reports hold the government accountable, they nonetheless still fail to understand the needs of disabled people—let alone recognize their experiences and knowledge—in preparing and responding to emergencies.12 This was the case with previous disasters such as the 2013 Blue Mountains bushfires and the 2017 Northern Rivers floods, where instead of integrating disability needs into community and disaster preparedness services to begin with, support was provided to disabled people only during both events’ disaster response and recovery efforts.12
This reactive approach was prevalent again during the 2019–20 bushfires and 2022 floods in New South Wales and South East Queensland.13 Emergency information was unavailable in multiple formats; evacuation centers remained inaccessible for people with physical disabilities; disruptions to essential services for disabled people involving health, social care, transportation, and food were disproportionately experienced; and disabled people’s homelessness escalated even more as a result of living in disaster-prone areas. Disabled people’s organizations and government and private disability services in Australia, which are seen as vital assets in supporting disabled people, were equally ill prepared to assist those affected either because of their lack of disaster knowledge, skills, and training or as a result of being affected by disasters themselves.14
These exclusionary practices have disabled people’s organizations and disability services calling on the Australian government to establish stronger mechanisms to support disabled people at all levels of emergency planning and response. This includes heightening disaster awareness and preparedness by co-developing tailored public emergency notifications and messaging in accessible formats, as well as monitoring mechanisms to ensure accountability for meeting needs and an accessible community platform for disabled people and their families to receive emergency information and resources. As a country, Australia must do more to understand the barriers that disadvantage disabled people and must change the ableist institutional cultures embedded within emergency services to better recognize these barriers.15
Heat Waves In The Pacific Northwest
Creeping climate impacts are disproportionately affecting disabled people. Worldwide, heat waves are becoming increasingly common, intense, and lengthy.16 One example is the unprecedented heat wave in the Pacific Northwest during July 2021, for which cities in Oregon, Washington, and British Columbia were unprepared. Approximately 800 people died across the region from heat stroke, with many more seeking medical aid.17 Governments, however, do not track the impacts of heat waves on disabled people, so it remains unclear how many of those affected had disabilities.
Nonetheless, community groups and disabled activists know that many disabilities and ongoing physical conditions make it harder to survive even moderate heat. For example, more than seventy million people globally live with autoimmune diseases that can greatly diminish their ability to regulate body temperature.16 Some residents in Vancouver, British Columbia, and Seattle, Washington, reported suffering from heat exhaustion at 85° F (30° C), needed to take cold baths every two hours, and could not afford air conditioning.18 People with spinal cord injuries may be unable to sweat, and people with mast cell activation syndrome can find their allergic reactions flaring. Similarly, people with diabetes, hypertension, heart disease, and neurological disorders struggle in high heat.18 Importantly, policy makers and service providers often do not think of these as disabilities.
Air conditioning and cooling places can help greatly. Yet as the Pacific Northwest heat wave showed, cooling places can be few, poorly publicized, and difficult for disabled people to reach.19 Service animals also can be prohibited. In addition, cooling places might not offer the medical equipment and electricity charging systems that disabled people need, and they can also lose their power and might not have backup generators. Heat waves often see power utilities blacking out whole areas to reduce grid demand, jeopardizing the welfare of people who depend on ventilators, dialysis machines, and other medical devices.
Moreover, governments and nongovernmental organizations often assume that disabled people only need information about how to keep cool and that providing cooling places will suffice. In reality, many impoverished disabled people cannot afford a powerful air conditioning unit, which in some cases can consume up to 75–100 percent of their monthly welfare support income.18 As of 2018, 26 percent of disabled Americans lived below the federal poverty level, compared with 10 percent of their nondisabled peers, as a result of unemployment, poor educational access, and employment discrimination.18 Moreover, public support programs may disincentivize disabled people from earning more or saving.18 As a result of a confluence of these factors, many disabled people are thus trapped in poorer-quality housing that may lack air conditioning.
To overcome these problems, reforms to disability support or entitlement programs and the provision of affordable housing are essential structural changes. To reduce climate impacts generally, cities could also invest in urban forests and cooler road surfaces, mandate building design for cooling (for example, white roofs), and subsidize cooling technologies for those who need them.19
Disasters And Humanitarian Efforts Led By Disabled People From Developing Regions
Climate change, population growth, settlement in unsafe areas, lack of early warning systems, and ongoing violent conflicts have exposed disabled populations to unforeseeable threats.20 Disabled people are less likely to know whom to approach for help and assistance before, during, and after a disaster.21 Yet humanitarian responders in developing regions struggle with the knowledge, skills, and capacity needed to support disabled people.
Redressing this, the pioneering Charter on Inclusion of Persons with Disabilities in Humanitarian Action, established at the 2016 World Humanitarian Summit, called for stronger disability representation in all disaster settings.22 Humanitarian actors can benefit from adopting a local knowledge approach. The lived experiences that disabled people have from previous disasters are instrumental in developing accessible solutions and practices, enabling actors to better prepare for and respond to future disasters. Aligning with international treaties and policies that countries have endorsed, such as the United Nations Convention on the Rights of Persons with Disabilities and the Sendai Framework for Disaster Risk Reduction 2015–2030, a 2019 report on disability-inclusive disaster risk reduction collated by three international humanitarian agencies explored cases from twenty countries.20 Findings indicate that the co-development process enabled disabled people to take greater ownership of emergency response and mitigate the effects of disasters.
Examples of the capacity of disabled people’s organizations in developing nations to address disasters and climate migration, as well as those fleeing armed conflicts, include a disability-led coalition of Filipino disabled people’s organizations that developed a replicable five-day training-of-the-trainers program manual, “Lahat Handa” (“Everybody Ready”).23 This manual was tailored to enable disabled people to engage and train government stakeholders on disability-inclusive disaster risk reduction plans, policies, and practices. In addition, the Lebanese Association for Self-Advocacy (LASA) built a peer support network for Middle Eastern refugees with intellectual disabilities and their families on adapting to life in a different country through art activities and the co-development of tailored, easy-to-read materials.24 In Greece and Kenya, the establishment of disability inclusion and advisory committees, led by and for disabled people, worked with disabled refugees on accessible assessments for essential services and living arrangements in refugee camps.25,26
Disabled people’s organizations are often critically important in the absence of economic or governmental support.
In developing regions, disabled people’s organizations are often critically important in the absence of economic or governmental support. In Puerto Rico, during the hurricanes and the COVID-19 pandemic, these organizations met critical basic needs including home support services, food delivery, benefits and employment assistance, and family violence protective services, along with housing and physical rehabilitation.27
Discussion
Worldwide, disabled people frequently lead the way in devising community-based, collective support efforts. In the San Francisco Bay Area, for example, during the 2016–19 series of California wildfire conflagrations, groups of disabled people coordinated complex programs for checking on each other, obtaining masks and air filters, and swapping and charging batteries for those who needed them.28,29 They did not just help fellow disabled people but also supported impoverished people of color and homeless people. This carried into the COVID-19 pandemic. In China, similarly, disabled people formed powerful mutual aid networks around COVID-19.30
A Call To Action
Disaster planners do not think about how diverse disabled people engage with the world differently.
The cases we describe here pose the issue of why disability continues to be largely invisible or treated superficially in disaster planning and climate change policies. Reasons include organizational practices and ways of thinking that are inherently ableist and exclusionary. Disabled people do not fit neatly into the mental templates that disaster planners and climate analysts hold about what people can and cannot do during disasters. Ableist assumptions are often built into infrastructures and technologies for informing people, mobilizing aid, or rebuilding after damage.31 Disaster planners do not think about how diverse disabled people engage with the world differently. As a result, disabled people may be forgotten during flood or fire evacuations.
In turn, organizations tend to sideline disabled people as knowledge-makers and experts. This entrenches the dominance of ableist experiences and knowledge, with organizations typically not hearing from disabled people about their situations and concerns. Emergency management officials may fail to consider the valuable contributions that disabled people have made to efficient and practical disaster planning and response, rooted in their ingenuity navigating an inaccessible world. More fundamentally, organizations can reflect prevailing social attitudes toward disabled people in their regions of operation. Globally, disabled people may be seen as a “backward” or “incapable” population in need of charitable help. In some places and cultures, disabled people experience gross devaluation as community members. When supplies were scarce during COVID-19, disabled people in the US were perceived as not “deserving” support by some medical practitioners and state and federal government officials, especially when able-bodied people might face less assistance, which led to exclusion of certain disabled people from priority access to ventilators or vaccines.32
Questions To Be Addressed
To begin changing such pervasive oppression, we call on policy makers and practitioners to address the following questions in developing disability-inclusive climate and emergency preparedness policy and practices. These questions emerge from the lived experiences that diverse disabled people have expressed during numerous climate and disaster failures, as seen above. Instead of applying a prescriptive, standardized framework, the questions can be answered in different ways, according to the heterogeneous situated conditions of disabled people and disaster and emergency managers. They center disability justice by emphasizing that disability is intersectional and that action grows out of disabled people’s knowledge and recommendations.
Who Are The Disabled In Particular Places And Situations?
Disability is more diverse, hidden, and prevalent than policy makers think. Disabled people come in different forms and contexts spanning intellectual, physical, sensory, mental health, and aging, as well as chronic illness that might not be readily visible. Many disabled people have multiple disabilities and often have intersectional identities—that is, as people of color, women, refugees, seniors, or LGBTQA+. Disaster and climate managers need to think more creatively to appreciate how the effects of disasters and climate impacts may propagate across complex, diverse communities.
Are Disabled People Being Tracked Before, During, And After Disasters?
In our case studies, disabled people were invisible, partly because government agencies did not compile statistics, map their presence, or identify whether they were being injured.33 Emergency preparedness efforts to put disabled people on registries so that emergency responders may identify disabled people needing assistance have had mixed success, as some disabled people are reluctant to be forced to disclose their disability publicly. Thus, the true magnitude of harm to disabled people remains obscured. The onus currently lies with scholars in the disability, public health, and climate change spheres to collect data of their own initiative to highlight significant disparities; in addition, governments must take on more responsibility. The Washington Group on Disability Statistics is one effort to internationally standardize statistics for inclusive policy.
Is Policy Really Inclusive Of Diverse, Intersectional Disabled People?
Disaster and health practitioners may state that their information is “accessible,” but it is not always inclusive for everyone. Is the information delivered in multiple formats to reach people with different access needs? Information may be provided in dominant languages, such as English, but is it also provided in multiple languages to meet the needs of disabled people from minority groups? For deaf people, sign language or captioning must be included, and for people who are blind or have low vision, audio descriptions and alternative communication modalities are needed.
Is Policy Aimed At Equity, Not Just Equality?
Many disaster and health practitioners assert that they adhere to equality principles by ensuring that information is accessible for all. Yet they may neglect the equity part of the equality process. Merely because there is access to information does not mean that it is equitable for everyone to access. Gaining access to information and resources may lead to substantial costs that disabled people are less able to meet. Accessible media provided via technology might not be accessible to low-income disabled people without devices or the internet. Planners and responders should attend more to low-tech solutions, such as pen and paper, and find ways to eliminate technology access costs by subsidizing them for disabled people in need.
Does Policy Recognize Disabled People As Knowledgeable Agents Of Change?
The cases we have described, particularly from developing countries including the Philippines, Greece, Kenya, and Lebanon, illustrate how disabled people have much more knowledge about how they are being affected by disasters or climate impacts than they are usually acknowledged to have.34 They know what they need know to reduce their risks, and they have been creative, fostering new ideas in emergency response. Research shows that despite barriers, some disabled people see themselves as resilient and self-sufficient before and during emergencies.35
Large organizations, including UN agencies or the Red Cross, can benefit from more representation of disabled people with lived experiences of disasters and as refugees in humanitarian leadership capacities.
Does Policy Actually Build Disability Justice Into The Structures That We All Live In?
Mainstream organizations are eager to prepare for and respond to large-scale disasters affecting disabled people, yet they are less inclined to respond to what is perceived as “smaller scale” crises that are no less consequential. An example of such a crisis is when disabled people cannot meet basic needs because of their disabling social environment (for example, employment-related poverty) and thereby face higher climate vulnerability. These underlying structural issues must be addressed for disabled people and organizations to better prepare for and respond to climate disasters.
Recommendations for governments and nonprofits include planning cities that reduce climate risks; creating educational, employment, health care, and housing policies that improve the socioeconomic conditions of disabled people; and supporting adaptive measures and technological access for disabled people. Such structural conditions are rarely integrated into climate and disaster adaptation planning.36 One example of how this can happen is supporting legislation that would enable disabled people to obtain health care in the chaotic aftermath of disasters. In the US, since 2018, the Partnership for Inclusive Disaster Strategies has collaborated with federal legislators to propose the Disaster Relief Medicaid Act. This act would provide uninterrupted access to Medicaid services if recipients were forced to evacuate across state lines, which can prevent institutionalization during disasters.
Who Is Accountable For Monitoring Disability Inclusion Efforts?
Accountability is fragmented across different entities. Different countries have varying levels of adherence to climate policies, as well as legal protections and rights afforded to disabled people. Government agencies, companies, and nongovernmental organizations are seldom accountable to the lived experiences of people who are enduring climate injustice—as seen in the persistent lack of authentic actions to reduce carbon emissions in countries such as Australia, China, and the US. Further, foundations, corporations, and governments need to be held accountable by funding disability-specific disaster relief efforts, particularly those provided by disabled-led organizations.37
Accountability mechanisms need to be created to ensure that disability justice is being implemented.
Accountability mechanisms also need to be created to ensure that disability justice is being implemented. The international UN Convention on the Rights of Persons with Disabilities provides an emerging framework that recognizes the human rights of disabled people in countries that have ratified it (the US is not among these countries).38 Critically, governments, nongovernmental organizations, and international institutions must consult with, and include, disabled-led organizations and disabled people on the ground both before and after climate disasters. For example, Accessible Climate Strategies, the Disability Mobility Initiative, Off-the-Grid Missions, and the Global Alliance for Disaster Resource Acceleration are already providing missing knowledge and expertise in tackling climate adaptation challenges. Disabled people must have a permanent seat at the table in all policy planning and action.
Disabled people and disabled-led organizations should also drive disability justice audits of local, national, and multinational agencies and nongovernmental organizations working on humanitarian responses, disaster planning, and climate adaptation to examine whether they are actually partnering with and empowering local disability nongovernmental organizations.39 A disability justice audit goes beyond a compliance audit that simply checks whether a rights framework is being met by valuing the contributions of multiple marginalized disabled people with intersectional identities.
Are Disabled People Being Included In Climate Policies And Actions?
At this time, disability justice and climate change policy remain poorly integrated. Given that people with disabilities disproportionately experience the negative effects of climate change, disability justice movements argue that ignoring the requirements of international climate change treaties such as the 2015 Paris Agreement (for example, for emission reductions) will threaten the rights protected by the UN Convention on the Rights of Persons with Disabilities.40 The UN Framework Convention on Climate Change currently has nine constituencies, and none of them specifically addresses disability. National and international disability organizations advocated for change at the UN Climate Change Conference in Glasgow (COP26) summit, but they face ongoing resistance.41
Key players in climate change policy and climate justice movements must consider the following questions: What are the ethical and moral implications for including disabled people in efforts to mitigate the impact of climate change? How can global disability rights organizations be included as part of the climate change justice movement?42 How can the strengths that disabled people of color from resource-limited settings bring to climate movements be better embraced?
Conclusion
Governments, civil society, and mainstream nonprofit organizations in both the climate change and emergency preparedness and response sectors can learn from disabled-led, disability-inclusive disaster risk reduction initiatives worldwide. The participation of disabled people in the disaster and humanitarian sectors has led to reframing disabled people as active leaders, advocates, and support providers, not passive recipients of aid, and enhancing capacity through more comprehensive, appropriately tailored accessibility initiatives. Such efforts foster disability justice by mitigating the impacts of climate disasters on disabled people worldwide.
ACKNOWLEDGMENTS
All authors substantially and equally contributed to this article. This is an open access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) license, which permits others to distribute, remix, adapt, and build upon this work, for commercial use, provided the original work is properly cited. See https://creativecommons.org/licenses/by/4.0/.
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