Note on Language: This article uses identify-first language (“disabled persons”) and person-first language (“persons with disabilities”), reflecting the varying preferences within the disability community. However, for consistency and brevity, this article will primarily refer to these individuals as “DPs.”
Introduction
When disaster strikes, persons with disabilities suffer disproportionate harm. This is because the unique access and functional needs (AFNs) of this population are frequently inadequately or completely unaddressed by existing disaster mitigation policies and systems, with only 8% of disaster risk management (DRM) plans addressing the specific needs of persons with disabilities. The failure to effectively include the AFNs of disabled persons (DPs) in disaster preparation and recovery has been termed “benign neglect,” yet there is nothing benign about the consequences of this exclusion, which include disproportionately high death tolls, high rates of post-disaster institutionalization, and reduced long-term recovery in education, housing, and employment. Without meaningful policy change, this harm will continue to increase as the climate crisis worsens.
To ensure the development of effective and inclusive disaster risk management (DRM) policy, DPs must be involved in policymaking and formulating strategy. Recent social movements have advocated for the direct participation of disabled persons in such policymaking– an approach that has increasingly gained political acceptance across the globe.
Models for Effective Inclusion
The past several decades have seen the emergence of multiple models for effective inclusion of people with disabilities in DRM systems and structures. These models include disability rights movements’ principles, international frameworks, and successes in countries across the globe, such as pushes in Indonesia to empower disabled persons organizations (DPOs) to create and execute these policies.
The global disability community should be considered the primary authority on disability inclusion. After decades of activism from the disability community, the 1990s saw the passage of a myriad of disability rights legislation across the globe, including the Americans with Disabilities Act in the United States. These new laws represented a shift in understanding disability rights to involve a positive obligation to include people with disabilities, as opposed to only a negative obligation not to discriminate against people with disabilities. Reflected by the disability rights movement’s treatise “nothing about us without us,” direct participation and active inclusion of DPs is essential in policymaking or programs which relate to disability issues either directly or indirectly.
Building upon the disability rights movement, many disability activists have embraced activism toward “disability justice.” Disability justice emphasizes the way ableism intersects with other forms of oppression. This movement adopts 10 core principles, including intersectionality, leadership of the most impacted, and interdependence. “Nothing about us without us” and other principles of the disability justice movement provide the model and reasoning for DP leadership in DRM and other disability-adjacent spheres.
In recent decades, some of the principles established by disabled activists have been recognized by international agreements, such as the 2006 Convention on the Rights of Persons with Disabilities (CRPD), which was developed with active participation from disabled persons. Article 4(3) of the CRPD echoes the treatise “nothing about us without us” by affirming that states have a positive obligation to “closely consult with and actively involve” disabled persons, through Disabled Persons Organizations (DPOs), when developing policies that directly or indirectly involve issues related to this group of people. More recently, as the international community began to recognize the disproportionate impact of climate change and disasters on disabled people, the need for DP/DPO participation in DRM became more apparent. Accordingly, the 2015 Sendai Framework for Disaster Risk Reduction identifies disabled people (among other marginalized groups) as stakeholders in disaster mitigation and recovery.
Aligning with this principle, some states, such as Indonesia, have begun to develop more equitable disaster mitigation policies by moving past merely including DPs in policy development toward promoting their active participation throughout DRM preparation and execution, including in supervisory roles. By instead educating DPOs in DRM and positioning these organizations as independent leaders in the creation and implementation of these policies and structures, Indonesia vastly improved disaster preparedness for local disabled persons. Though these DPOs had no prior experience in disaster mitigation, these disabled leaders were better able to identify the specific AFNs of the local population, which allowed these DPOs to develop specific, community-based solutions for addressing these needs in the case of an emergency. Despite these measurable successes, Indonesia has still not been able to apply these programs uniformly across the country, as not all jurisdictions have adopted such policies or enabled the capacity building of DPOs.
United States: Promising Developments and Further Recommendations
The United States should look to these models of effective inclusion– the disability rights movement, international frameworks, and the Indonesian example— to create its own DRM policies and systems that address the access and functional needs of individuals with disabilities through centering leadership of disabled persons and their organizations.
Beyond the domestic level, the United States is a signatory of the CRPD, recognizing the principles of this framework. At the domestic level, the United States has recognized the importance of affirmative inclusion of disabled people, as opposed to mere non-discrimination, through statutes such as the Americans with Disabilities Act. Looking specifically to disaster risk management, its Federal Emergency Management Agency (FEMA) has recognized DPs as specific stakeholders in disaster mitigation and recovery. While an important start, this recognition has failed to ensure AFNs are adequately addressed by DRM policies throughout the country. FEMA’s top-down approaches to eliminating this exclusion, such as establishing the Office of Disability Integration and Coordination, have failed to adequately permeate the policies of local disaster mitigation offices. Instead, the U.S. should follow Indonesia’s bottom-up example by engaging local DPs to serve as leaders of policy development and execution in their communities. As in Indonesia, FEMA should increase the disability community’s capacity to do such work by providing DRM education and more formally recognizing the importance of DP leadership.
To this effect, the United States should establish Disabled Persons Task Forces (DPTFs), composed of local DPs through independent DPOs, to work semi-autonomously parallel to local disaster mitigation offices. The goals of each DPTF should be to 1) identify the AFNs of the local population and best practices to effectively address these AFNs in DRM policies and 2) recommend steps the locality should take to move towards universal design in its DRM structures and systems in order to increase access to the greatest extent possible.
To ensure uniformity across the country’s different state and local jurisdictions, the requirement to establish these task forces, as well as subsequent regulating and compliance monitoring, should come from FEMA. FEMA is likely to have the most widespread impact on local and state DRM offices, given they all rely on FEMA funding for their policies and systems. As such, FEMA can promote uniformity by conditioning the receipt of certain grant funds for state and local DRM offices on the establishment and progress of these task forces, which passes a conditional spending analysis.
Of course, the prerogatives of the Trump administration, which include dismantling programs and policies related to diversity, equity, inclusion, and accessibility (DEIA), pose a challenge to such a proposal and pose dangers to existing policies meant to ensure DRM policies and programs adequately serve disabled people.
Conclusion
In order to reduce harm to persons with disabilities, conform with international norms relating to the stakeholder status of the disability community, and align with the disability justice movement, the United States should implement DP and DPO leadership at the local level to work towards truly inclusive disaster risk management policies and systems.
Author: Jacquelyn Wycoff is an Editor of the International Law Society’s International Law and Policy Brief (ILPB) and a J.D. Candidate at The George Washington University Law School, where she is concentrating in International and Comparative Law. She has a Bachelor of Arts from American University’s School of International Service in International Studies with thematic concentrations in Identity, Race, Gender, and Culture and Justice, Ethics, and Human Rights.
Editors: Max Laurie and Fatma Nur Calisici