Involving People with Disabilities in Crisis Management Research

Other conference contribution, 2024

In the Swedish research project ‘From Passive Recipients to Active Resources’ (2021–2024) managed by Chalmers University in Sweden, human factors and universal design approaches have been utilized. People with various types of disabilities and their interest organizations were involved as co-creators in the development of inclusive crisis management methods and strategies. By viewing people with disabilities as active resources rather than passive recipients, researchers could tap into their experiences and knowledge, gleaning important insights.
 
A key finding from the co-creation research process was that people with disabilities are more likely than others to be negatively affected during a crisis or catastrophe. During the Covid-19 pandemic, for example, a disproportionate number of people with intellectual disabilities died, even though this group was not more ‘physically’ sensitive to the virus. This observation aligns with the theoretical discussion on vulnerability, which emphasizes the importance of analyzing risk and vulnerability using an intersectional lens.
 
Another important finding was that many individuals with disabilities possess the physical and cognitive ability to assist themselves during crises and disasters, provided they have access to the right information and understand what actions to take. This underscores the vital importance of effective, tailored risk and crisis communication that reaches everyone. Many people who end up requiring assistance during emergencies could have managed on their own, thereby freeing up resources for others, if only they had access to information.
The co-creation process also found that people with various communication difficulties face similar challenges and have similar needs during crises and disasters. An insight relates to communication aids. As many people with intellectual disabilities have limited language skills, they need different kinds of communication aids, both to make themselves understood and to understand others.
 
One example is a so-called ‘communication passport,’ a printed folder that persons with disabilities such as aphasia or intellectual disability can always bring with them in principle, but especially during crises. The communication passport contains important and personalized information about their communication challenges and needs, contact information for relatives, and needs for additional support, etc.
Another alternative involves the use of picture symbols, which can aid in comprehension and serve as a communication tool for individuals with speech difficulties, enabling them to show their intended messages via pointing.
 
To conclude, these alternative communication methods and aids can be crucial for understanding and assisting individuals with specific needs, like persons with aphasia, autism, and intellectual disabilities. The options are all examples of so-called ‘augmentative and alternative communication’ (AAC), involving methods and tools to support or replace spoken or written communication. Other AAC methods can include text-to-speech technologies, communication displays and computers, such as tablets with speech-generating programs, as well as pictures and videos to complement speech.