Why disaster registries are harmful for people with disabilities

By Sigrid Wang

Disaster registries are databases created by governments or emergency management agencies to identify people who may need additional support during emergencies. These systems typically invite individuals to provide information such as their address, contact details, medical needs, mobility limitations or other factors that could affect their ability to access services during a disaster. Registries are usually voluntary and are promoted as a planning tool to help responders allocate resources or prioritize assistance for people with specific needs.

The reason to take a disability-inclusive approach to disaster risk management is because people with disabilities face high risks during and after disasters. Evidence shows that their mortality rates can be several times higher than the general population [1]. These disparities not solely come from disability itself but from longstanding structural barriers such as discrimination and inadequate access to education, employment and healthcare. Disasters magnify these inequalities, further limiting access to information and the ability to reach safe shelter or obtain assistance. Additionally, disability intersects with factors such as gender, age, race and poverty, making the disadvantage experienced of many individuals even worse. These conditions demonstrate that disaster risk management cannot be effective or equitable unless it addresses the unique needs, rights and lived experiences of persons with disabilities.

Disaster registries are often framed as neutral tools for public health planning, but for people with disabilities they represent a long-term surveillance with significant risks. These systems typically collect extensive personal information including demographic data, medical histories and self symptoms such as PTSD or functional limitations [4]. While these data points are treated as routine in emergency management, they are sensitive for disabled individuals. People often misunderstand their health conditions. These misunderstanding are sometimes used as excuses to make decisions for them. Disaster registries rely heavily on experts to determine who qualifies as in need of assistance, which can unintentionally silence the people they aim to protect. Instead of allowing disabled individuals to articulate their own needs and priorities, these systems often frame assistance as something to be prescribed from above like emergency managers and government agencies. This top-down approach reinforces a paternalistic logic, which is it assumes others know better, while sidelines disabled voices at the moment when self-advocacy and autonomy are most critical [3].

Moreover, once stored in databases, this information can be accessed or shared in ways those people never consented to. Rather than providing protection, registries risk exposing disabled peopleto increased discrimination and a loss of control over how their disability is used [2]. Firstly, this can enable discrimination in housing, insurance, or service eligibility when agencies use disability records to label someone as high-risk. Besides, in emergencies, responders may rely on registry data to make decisions overriding individuals’ own choices because the system marks them as vulnerable. Finally, if poorly protected, medical and mobility data can be exposed through data breaches, leaving disabled people vulnerable to identity theft, scams or exploitation. In short, the same information collected to protect disabled residents can easily become a tool for exclusion, surveillance or harm.

To reduce the risks associated with disaster registries, emergency planning should prioritize the voices and autonomy of people with disabilities. Involving disabled individuals directly in planning and decision-making ensures their needs are accurately understood. Personal preparedness and community-based support networks should be strengthened instead of relying solely on centralized registries [2]. Sensitive data must be carefully protected, with clear limits on who can access it and for what purpose. Flexible communication tools, such as smartphone apps and wearable devices, can allow people to signal for help in real time, giving them more control over their safety during disasters.

While intended to help, disaster registries can unintentionally create false security, compromise privacy and reinforce a paternalistic approach. By centering autonomy, respecting privacy and focusing on community-based solutions, disaster management can become safer, more equitable and truly inclusive for people with disabilities.

References

[1] Global Facility for Disaster Reduction and Recovery. (2017). Disability inclusion in disaster risk management: Promising practices and opportunities for enhanced engagement. Washington, DC

[2] Green, M. (2025). Los Angeles weighs a disaster registry. Disability advocates warn against false assurances. KFF Health News

[3] Kailes, J. I. (2017). Disability inclusion in disaster risk management: Promising practices and opportunities for enhanced engagement. Global Facility for Disaster Reduction and Recovery.

[4] Petrsoric, L., Miller-Archie, S. A., Welch, A., Cone, J., & Farfel, M. (2018). Considerations for future disaster registries. Disaster Prevention and Management, 27(3), 321–333. https://doi.org/10.1108/DPM-01-2018-0026