Commentary | Mark Bookman and Carolyn S. Stevens, Empathy, Equity, and Empowerment: Lessons to Learn from Disability Studies During a Pandemic in Japan and Australia
The COVID–19 pandemic has disproportionately affected disabled people by limiting access to social services like caregiving and assisted transportation, while at the same time opening up new possibilities for collaboration and mutual empowerment with nondisabled individuals. In this article, we reflect on how disabled people have navigated the pandemic in Japan and Australia to highlight models to emulate and cautionary tales of what to avoid for advocates, policy makers, and other parties committed to creating truly equitable and inclusive societies.
Japan and Australia have fared better than many other post-industrial nations when it comes to their pandemic response. Japan showed signs of success in the first half of 2020 with high compliance rates for mask wearing and contact tracing efforts that kept rates of infection low. Australia’s border closures and lockdown measures similarly protected it from the worst of the pandemic. At the time of writing, there is little to no community spread in Australia, though international borders are likely to be closed until mid 2022. Japan was initially seen globally as a model of public health compliance for most of 2020; and while there are now alarming outbreaks in urban centers, the government is still promising a muted Olympic and Paralympic Games later this summer despite widespread opposition.
Friends and colleagues in Australia are already moving back to classrooms and offices, and reminiscing about Netflix binging and sourdough baking that carried them through the worst of the pandemic. In Japan, people are enjoying the Golden Week holidays and planning their conferences for the remainder of the academic year. Together, they laugh about the early days of struggling to adjust to life online. These are stories to tell our grandchildren, they say.
There are also other stories that we need to tell: stories that show the collective experiences and imaginations of diverse communities as they respond to this once-in-a-century event. Why do marginalized voices matter? By investigating how disabled and nondisabled people have come together to overcome local caregiving issues and brainstorm solutions to global communications problems, we can prepare ourselves for challenges that may arise in future.
“By investigating how disabled and nondisabled people have come together to overcome local caregiving issues and brainstorm solutions to global communications problems, we can prepare ourselves for challenges that may arise in future”
In both Japan and Australia, the pandemic has exacerbated barriers in the built environment, generating cracks in the nations’ “care economies” and challenges for many disabled people. During “regular” times, disabled individuals often depend on friends, family, and caregivers to overcome obstacles that hinder their access to supplies and services like food and transit. However, in moments of crisis like the present pandemic, caregivers may be unavailable due to emergent social and financial obligations. This was certainly the case for Stevens, whose family went 59 days without any of the four face-to-face services they were receiving for their twenty-year-old daughter in Australia. Bookman, for his part, had several home helpers quit and could not find replacements to assist him with eating, bathing, and other tasks in Japan.
Another important aspect of the “care economies” in both countries ruptured by the pandemic are solidarities forged through disabled people’s participation in structured events and social services. Indeed, cancellations at such facilities significantly impacted disabled individuals by magnifying emotional distress. While we all feel sadness in isolation, many members of disabled communities are prone to severe consequences, and depression can quickly escalate into a life-or-death situation. Stevens’ daughter was able to adjust to a new routine in a matter of weeks after her support networks shut down, but fretted over the possibility of losing connections permanently as many people transitioned into different jobs. Bookman was similarly frustrated by lost opportunities to troubleshoot challenges in his daily life with specialists in various fields, which resulted in him struggling alone with failed relief policies.
If the pandemic broke apart disabled and nondisabled populations in Japan and Australia, it also helped unite them, as evidenced by the transition to remote education and employment. As stay-at-home orders took effect in both countries, nondisabled people pivoted to services like Skype and Zoom, often with little to no preparation. The sudden shift created an array of challenges that disabled people were uniquely positioned to resolve. Bookman has observed how members of Japan’s disabled communities, who had long used remote communications technologies to circumvent barriers in their built environments, volunteered their knowledge and expertise to shape inclusive settings for groups of disabled and nondisabled individuals. Along similar lines, Stevens found inspiration in her daughter’s experience of the pandemic, which was not defined by existential dread, but instead characterized by resilience.
In essence, the pandemic has made experiences of precarity, vulnerability, inaccessibility, and exclusion tangible for both disabled and nondisabled people, encouraging new modes of collaboration and mutual empowerment through the formation of empathetic relationships. Such relationships provide a promising avenue for the creation of equitable global societies. However, we must be cautious as to not equate empathy across diverse demographics with a complete understanding of their needs and wants: physical, social, medical, and otherwise. Disability simulation exercises in which nondisabled people are temporarily given access to diverse perspectives through the use of wheelchairs, blindfolds, and other technologies have shown how empathy with only certain aspects of impairment can lead to misunderstandings. We must keep in mind that disabled and nondisabled populations have overlapping, but not identical, encounters with barriers and use their expertise accordingly when ‘making access.’
Going forward, nondisabled individuals must enjoin their disabled counterparts to contribute to the creation of laws, policies, and social services utilizing their years – even decades – of experience navigating hostile environments, schools, workplaces, and other spaces. Indeed, such enjoining must take place at multiple and interlocking scales of activity: local, regional, national, international, transnational, and otherwise. Comparing our pandemic experiences in Japan and Australia has hinted at the relationship between local resonances and global transformations. While barriers to disaster relief management in both countries are grounded in local care economies, the solutions they uncover will likely be exported to global contexts. When that happens, interested parties must keep in mind the limits of empathy as discussed above and avoid ‘one-size-fits-all’ fixes that might create hardship for diverse demographics. By doing so, they will bring us one step closer towards the realization of an equitable society.
Mark Bookman is a historian of disability policy and minority social movements in Japanese and transnational contexts. Currently a Visiting Researcher at the University of Tokyo, Mark’s publications can be found in peer-reviewed journals such as The Asia-Pacific Journal: Japan Focus and public-facing media outlets like The Japan Times. Outside of the academy, Mark also works as an accessibility consultant. He has collaborated with government agencies and corporate entities in countries such as Japan, the United States, and Canada, as well as the International Paralympic Committee and UN, on projects related to inclusive education, equitable environments, and disaster relief for disabled communities. Twitter: @mbookm01
Carolyn S. Stevens is Professor of Japanese Studies and Director of the Japanese Studies Centre at Monash University. Trained in sociocultural anthropology, her most recent major publications include the co-authored Sounding Out Japan: a sensory ethnographic tour (2021), The Beatles in Japan (2018) and Disability in Japan (2013). She is also the Editor-in-Chief of Japanese Studies, a Routledge imprint. Twitter: @StevensCaro
To cite this Commentary, please use the suggested entry below:
Mark Bookman and Carolyn S. Stevens, “Empathy, Equity, and Empowerment: Lessons to Learn from Disability Studies During a Pandemic in Japan and Australia,” criticalasianstudies.org Commentary Board, May 12, 2021; https://doi.org/10.52698/SAAX6873.