Center on Disability Studies, University of Hawai'i at Manoa Pacific Rim International Conference on Disability & Diversity Image Description: Center on Disability Studies logo. Disability and Disaster: What to Know - What to Do Genesis Leong, Center on Disability Studies, University of Hawai'i at Manoa, Hawai'i, United States, genesisl@hawaii.edu Robert Stodden, Ph.D., Center on Disability Studies, University of Hawai'i at Manoa, Hawai'i, United States Joseph Kimuli Balikuddembe, Ph.D., Institute for Disaster Management and Reconstruction, Sichuan University and Hong Kong Polytechnic University, Chengdu, China Recommended Citation Leong, G., Stodden, R., & Balikuddembe, K. J. (2020). Disability and Disaster: What to Know - What to Do. Pacific Rim International Conference on Disability and Diversity Conference Proceedings. Honolulu, Hawai'i: Center on Disability Studies, University of Hawai'i at Manoa. Licensed under CC BY 4.0. This article is brought to you for free and open access by the Center on Disability Studies, ISSN 2641-6115. Image Description: Creative Commons license CC-BY icon. ---Page i--- Disability and Disaster: What to Know - What to Do Genesis Leong Center on Disability Studies, University of Hawai'i at Manoa, Hawai'i, United States Robert Stodden, PhD Center on Disability Studies, University of Hawai?i at Manoa, Hawai'i, United States Joseph Kimuli Balikuddembe, PhD Institute for Disaster Management and Reconstruction, Sichuan University and Hong Kong Polytechnic University, Chengdu, China Abstract: How do we advance the interdisciplinary aspects of the fields of disability studies and disaster studies by featuring and creating new evidence-based knowledge previously not shared with either field? And ultimately how will we weave disability cultures and disability-inclusive designs regarding persons with disabilities to be interwoven within the field of disaster studies? This article will share the beginning of a collaborative project between the Center on Disability Studies, USA, and Institute for Disaster Management and Reconstruction, China, aimed to develop a participant framework anticipated to be implemented as a symposium at the 36th Pacific Rim International Conference on Disability and Disaster (#PacRim2021). In addition, this article will provide presentation discussions of participant personal and expertise feedback relating to the development of the symposium topics. Keywords: Disability Studies; Disaster Studies; Inclusive Designs Knowledge Focus: Research/Theory Focus Topic Area: Post-Secondary Education Introduction Worldwide, but especially as found in the developing countries, the numbers of persons with a disability and aging have increased significantly over the past decades. It is reported that, over one billion (15%) of the world population live with some forms of disabilities, and of which 80% live in low and middle-income countries (WHO, 2018). On the other hand, the latest statistics showed that over 703 million persons worldwide are aged above 65 years (UN DESA, 2019). Further, over the past decades, climate change has increased the number of natural hazards and unnatural events (IPCC, 2007) -which lead to disasters that are disruptive to human lives and communities. According to Emergency Events Database (EM-DAT), over 68 million people were affected by natural disasters and 70% of it was reported in Asia and Pacific region (Guha-Sapir, 2018). Rarely are plans, procedures, or even considerations in place for the survival of the most vulnerable groups or people with special needs -such as persons with disabilities (PWD) and those aging into disabilities -are often disregarded or intentionally left ---Page 1--- behind during disaster responses and yet they are at the greatest risks. Additionally, on a daily basis PWD face multidimensional inequalities that disproportionately and adversely affect them due to barriers they face not only limited to their health, physical, mental and cognitive status, culture, ethnicity, geography and socioeconomic status (Hamidzada & Cruz, 2017; Nick et. al, 2009). These challenges are further and severely exacerbated during and in the aftermath of disasters. With this in mind, the significance and impact of this problem is expected to be immense, with numerous issues to be defined, clarified, and validated during the convening grant's proposed Symposium process entitled: "Disability and Disaster: What to Know - What to Do". As a global problem, the need for dialogue in numerous interdisciplinary areas will generate more accurate research aimed to understand the totality of the problem at hand. Thus, it is of critical importance for scholars, researchers, and professionals to develop an evidence-based understanding of the nature and size of the problem, as well as the possible solutions that might be developed and put in place to respond to this critical international issue. The proposed Symposia is the necessary response, the beginning of a BIG IDEA to address an emerging and immense issue -of disability and disaster which go hand-in-hand, and will serve as the first critical step to develop an interdisciplinary understanding of this issue, and thus potential solutions. Interdisciplinary: Disability Studies and Disaster Studies The magnitude of impact or change to be realized through the planning, development, conduct, and analysis/ or write-up of the proposed Symposia activities is projected to be significant and meaningful. 1) In response to the need for an interdisciplinary approach that encompasses humanities, that Symposium outputs will be guided by the 'three sets of engagement ' of Cho, Crenshaw & McCall's (2013) including 1) theory (analysis) - Share Research and Collect Research Needs: output includes a needs survey instrument and accompanying data; 2) application (discursive investigation) - Discuss and Develop Disability- Inclusive Policy: output includes analyzed data and discussion notes which will be summarized as an executive summary and report document; 3) praxis (inventions) - Apply Disability- Inclusive Policy: output includes print compilation and edited video tape of the presentations with the key points summarized for different audiences; and 4) praxis (inventions) - Establish Future Scholars: output includes contact directory of attendees and other persons working in this interdisciplinary area of study. The above outputs are projected to lead to outcomes of (1) increased awareness of the importance of the interconnectedness of disability and disaster to humanity; (2) increased advocacy and understanding of the critical need; and (3) the necessary momentum for next level activity -such as the provision of disability-inclusive publication policies, training and technical assistance to international communities. Ultimately, the goal is to create an academic publication (report, book or journal) that builds an interdisciplinary professional community. This goal will also lead to other continuity goals such as seeking further funding through other avenues and ---Page 2--- a manner that ensures long term involvement and investment in ensuring that PWD and those aging with disability are treated in more humanely and safely manner during and in the aftermath of disasters responses of all types. Method: Pacific Rim International Conference on Disability and Diversity 2020 To develop a 2021 Symposium that focuses on meeting the needs of the PacRim conference attendees that represents the diversity of disability community members, a presentation & discussion was provided at the 35th Annual Pacific Rim International Conference on Disability and Diversity on March 2, 2020 with Genesis Leong and Dr. Robert Stodden. The 30-min presentation included 25+ attendees who received a 10-minute overview of the 2021 Symposium theoretical approach, and opportunity for audience contribute their experiences and expertise to the following questions: * How do we advance the interdisciplinary aspects of the fields of disability studies and disaster studies by featuring and creating new evidence-based knowledge previously not shared with either field? * And ultimately how will we weave disability cultures and disability-inclusive designs regarding persons with disabilities to be interwoven within the field of disaster studies? The discussion was recorded and notes were recorded by one of the presenters, while the other presenter facilitated the discussion. Results: Disability and Disaster Needs In order to create a rich and informative #PacRim2021 conference experience on disability & disaster, the following section includes a collection of topics from advocates, researchers, professionals, community members. The notes taken from the 2020 Pacific Rim Conference on Disability and Diversity discussion were categorized and converted into a question format and listed below: Aging * How do we create more inclusive strategies for the aging population? Data * How do we create, and make available, data regarding people with disabilities who are affected by disasters? Dissemination * How do we make available emergency management procedures and resources for people with disabilities? How to find it? *How do we make available evacuation locations and procedures for people with disabilities? ---Page 3--- Dissemination (cont.) * How do we make available procedures on returning from an evacuation back home for people with disabilities? * How do we provide and connect emergency evacuation procedures for wheelchair users? * How do we provide emergency procedures for people with service animals? * How do we provide education on hazards, how to simplify the information? Community * How do we create more community partnerships, to help people with disabilities understand emergency strategies that have been created? * How do we create more community partnerships, to help people with disabilities contribute to the creation of emergency strategies? * How do we provide resources and programs that are available for people with disabilities to sign-up? Education * How do we provide and disseminate emergency procedures for parents of students in schools? * How do we provide more emergency information for education stakeholders? * How do we connect with education stakeholders who feel education is forgotten during an emergency? * How do we put school drills into action? Decision-makers * How do we include people with disabilities in the creation of government emergency strategies? * How do we create & enforce accessible communication? Caregivers * How do we provide community-based disaster preparation for caregivers? Trainings * How do we create response or recovery activities that integrate disability scenarios? * How do we educate and discuss post-disaster housing? Discussion Academia & research and practice share a symbiotic relationship, of which both will influence the circular evolution of each practice, however, all share an ongoing problem of narrow, singular disciplines and goals. Also, academia & research will focus on one primary ---Page 4--- topic (i.e. disability studies or disaster studies), or practice (i.e., disability services, education, etc.). The conference discussion aimed to approach the disability & disaster topic by recirculating the relationship between academic & research and practice by focusing on the needs more important. As a pre-COVID-19 concern in the United States, and with minimal threats internationally, the conference discussion included disability voices and/or disability ally voices representing advocates, researchers, professionals, and community members. Many of the concerns that were discussed reflect the current COVID-19 pandemic-disaster concerns. Themes that emerged included: * Need for Information Sharing - Whether representing voices as a disability service provider, parent, social researcher, concerned citizen, etc. the theme of information sharing was reflected. Participants often felt uninformed or concerned when relating to emergencies representing all three phases of disaster management: planning (pre- disaster); response (disaster); and recovery (post-disaster). More specifically, the need for information sharing that included disability data, strategies, resources, and training. * Need for Disability Representation - Similarly, participants were concerned with pre- existing relationships or roles. Participants felt uninformed or concerned with the lack of disability representation through the planning and response phase. More specifically, the need for disability representation to include people with disabilities during the development of emergency strategies, and the implementation of practice drills. * Need for Companion Strategies - Participants were concerned with supporting individuals or companions during a disaster. Participants felt uninformed or concerned with support beyond themselves or people with disabilities. More specifically, the need for companion strategies to include guide-animals, caregivers, or parents of children with disabilities. Conclusion In the midst of the largest pandemic-disaster of our time, COVID-19, the topic of disability and disaster is needed more than ever. And more specifically the role academia & research serve with intersectional approaches in order to avoid the perpetuating of inequalities that exist within disasters for people with disabilities. The conference presentation and discussion offered during the 35th Pacific Rim International Conference on Disability and Disaster contributed as a small portion of the primary step of the Three Sets of Engagement representing the theory or analysis within the accompanying data (Cho, Crenshaw & McCall, 2013). Themes that emerged from the first needs data collection included: information sharing, disability representation, and companion strategies. Further needs assessments are needed to create a well-rounded disability & disaster Symposium, especially to provide a symposium that extends beyond academia & research into practice. ---Page 5--- Authors Genesis Leong is a public information specialist at the Center on Disability Studies, University of Hawai'i at Manoa (UHM), and was recently the assistant editor/Journal manager of the Review of Disability Studies Journal. She is the program & call for proposals coordinator for #PacRim2020, a position that proceeds her 15-years of experience in organizing projects & events throughout the University of Hawai'i System. Her studies are focused on the interdisciplinary approach to Disability Studies & Disaster Planning Studies, and she is currently enrolled in the Disaster Management & Humanitarian Assistance program at the UHM, Department of Urban & Regional Planning. Image Description: Photo of Genesis Leong Robert Stodden, PhD is the founding director of the Center on Disability Studies, University of Hawai'i at Manoa and has more than 35-years of experience in conducting 100+ training and research projects across the areas of health, human services, and education for people with disabilities. As the professor emeritus/international ambassador, Dr. Stodden has worked extensively in Asia and other parts of the world and has more than ten-years of direct experience conducting research with vulnerable populations in the areas of emergency and disaster management. Image Description: Photo of Robert Stodden Joseph Kimuli Balikuddembe, PhD, is a Ugandan researcher and lecturer at the Institute for Disaster Management and Reconstruction of Sichuan University, China and the Hong Kong Polytechnic University. His work experience spans to over 10 years in both academic and non- academic institutions. Joseph is passionate and interested in carrying-out multidisciplinary research, particularly related to public health in disasters; climate-induced disaster; vulnerable populations (e.g. persons with disabilities and Albinos); injury prevention, disability and rehabilitation etc. He has published some of his research in BMC Emergency Medicine, Journal of Injury and Violence Research, PLOS Current Disasters, Physical Therapy, Travel Medicine and infectious Diseases, Oxford Research Encyclopedia of Natural Hazard Science, Disaster Prevention and Management Journal, and African Safety Promotion Journal etc. Image Description: Photo of Joseph Kimuli Balikuddembe References Cho, S., Crenshaw, K., & Mccall, L. (2013). Toward a field of intersectionality studies: Theory, applications, and praxis. Signs, 38(4), 785-810. Guha-Sapir, D. (2018). The emergency events database. In EM-DAT (Ed.), The Emergency Events Database. Brussels, Belgium: Universite catholique de Louvain (UCL) CRED Hamidzada, M., & Cruz, A. M. (2017). Understanding women's vulnerability factors to natural hazards in Afghanistan. DPRI Annuals, 60 B; 343-349 Intergovernmental Panel on Climate Change (IPCC). (2007). Summary for policymakers. In M. Parry, O. Canziani, J. Palutikof, P. van der Linden, & C. Hanson (Eds.), Climate change 2007: Impacts, adaptation and vulnerability. Contribution of working book II to the fourth assessment report of the intergovernmental panel on climate change (pp. 7-22). Cambrdige, U.K.: Cambridge University Press. ---Page 6--- Nick, G. A., Savoia, E., Elqura, L., Crowther, M. S., Cohen, B., Leary, M., Wright, T., Auerbach, J., & Koh, H. K. (2009). Emergency preparedness for vulnerable populations: People with special health-care needs. Public Health Reports, 124(2), 338. United Nations Department of Economic and Social Affairs (UN DESA). (2019). World population ageing 2019 highlights (ST/ESA/SER.A/430). New York: United Nations. Retrieved from https://www.un.org/en/development/desa/population/publications/pdf/ageing/WorldPopul ationAgeing2019-Highlights.pdf World Health Organization (WHO). (2018 January 16). Disability and health. Retrieved from https://www.who.int/en/news-room/fact-sheets/detail/disability-and-health. WHO: Geneva, Switzerland. ---Page 7--- ---END OF DOCUMENT---