More than one in four Americans, or over 70 million people, report living with a disability, according to 2022 data from the Centers for Disease Control and Prevention. Census Bureau data from the same year indicate that one in 10 working-age adults reported having a disability. As we age, most of us will face some type of disability—most commonly musculoskeletal or neurocognitive.
Historically, institutionalization was the norm for people with disability. The Americans With Disabilities Act of 1990 seeks social equity for this community, including an end to “the unnecessary segregation of people with disabilities,” and recognizes that allowing people to stay in their homes is an important way to facilitate this. However, accessible housing is still in short supply. Current estimates are that less than 5 percent of all homes in the United States are accessible, with appropriately configured sinks, counters and bathrooms, and less than 1 percent are wheelchair-accessible. The lack of accessible housing is linked to disparities in emergency preparedness. During a natural disaster, it becomes even more challenging to evacuate people from homes where they cannot easily move around.
While there are resources for emergency preparedness, including the federal government’s Ready website to help with personal planning, there are challenges in how communities apply the A.D.A. in alerting and evacuating people living with disability. For instance, Ready recommends that each household have a disaster plan that includes accessible transportation for evacuation, adding one’s name to emergency management registries, and maintaining a supply of medications and assistive devices. If a disability limits one’s ability to communicate, that individual should also have printed cards or electronic data to aid communication with emergency workers.
But as a nurse who specializes in chronic pain and disability, I can state that these individual-level solutions may not be sufficient to ensure that Americans with a disability are not left behind in emergency responses. Inadequate alert systems, incomplete evacuation strategies and misinformation caused by, for example, a lack of qualified American Sign Language interpreters can all result in delayed or ineffective evacuation. In addition, many of the patients that I work with have limited resources for transportation. Even during ordinary times, a lack of inclusive transportation can mean missing essential health appointments; during an emergency such as the California wildfires, it can be fatal.
Barriers to equity in emergency preparedness are often attributed to the specific needs of people with disability, such as the need to transport service animals and assistive devices. But while the A.D.A. requires equal access to transportation for people with disabilities and their working animals, this equity is not always experienced in real life. This day-to-day challenge can be exacerbated during life-threatening emergencies like wildfires and hurricanes. When communities are inadequately prepared to evacuate due to infrastructure deficiencies, including limited transportation options, inaccessible housing, evacuation options, and unqualified A.S.L. and native language interpreters, unfathomable losses could result.
Self-determination, independence, productivity, integration and inclusion are the core values of the Developmental Disabilities Assistance and Bill of Rights Act of 2000. When achieved, these values aim to promote equity. Housing choice is key to enabling people to live how they want to live. Furthermore, housing choice should not limit access to emergency planning. Instead, emergency preparedness should be improved to account for difference among community members. Planning for difference is an essential part of achieving these values, as it allows people to determine how they want to live in a world that isn’t accessible.
To pursue inclusion of all people, emergency preparedness should incorporate the creation of a robust infrastructure generating more accessible housing and emergency alerts interpreted in a variety of languages, including A.S.L., with a focus on people in need of evacuation assistance. People living with disability should be included in emergency preparedness planning.
It was easy to experience “compassion fatigue” in the face of the sheer volume of distressing images coming from the California fires. But instead of closing our eyes and minds to such images, let’s ask: How do we enhance our emergency preparedness to provide access for all? To become the hands and feet of Jesus and see those who have been marginalized, we must stop assessing the value of our neighbors based on whether or not they are normal and instead view each person as inherently valuable and God-designed.
