Makoto Nishi
In my childhood photo album, there is a picture from around 1975 of my younger brother, me, and a girl I no longer remember. I once asked my mother who she was. She said the girl was someone my father had cared for. My father was an activist who supported the deinstitutionalization of people with disabilities. I have vague memories of attending a party or going to the beach with my father and several adolescents with intellectual (or other) disabilities.
As time passed, I became a medical anthropologist, conducting research in Ethiopia and Uganda. Yet, my research in Africa had to be put on hold due to the Covid-19 pandemic. This disruption allowed me to initiate a new research project concerning how the pandemic affected autistic care in Japan. I started to talk to Ms. Kayo Takahashi, a friend of mine who is the mother of three children, including a daughter with autism and intellectual disability. She runs a small welfare service provider that supports children with developmental disabilities in a suburban area of Yokosuka. She has facilitated my interviews with parents, special education teachers, and disability welfare service operators, who shared their experiences during the pandemic.
Initially, I saw few threads connecting the ongoing research in Yokosuka to my childhood memories during the 1970s. As I explored the institutions, schemes, and legislation that govern the disability welfare services in Japan and tried to trace their origins, I began to reconsider the lingering impact of 1970s deinstitutionalization movements in shaping the milieu in which individuals with disabilities and their families live today.
At the 2025 Joint Annual Conference of the Taiwan Society for Medical Anthropology (TSMA) and East Asian Medical Anthropology Network (EAMAN), our panel entitled “Moralities, institutions, and familyhood in disability and long-term care in Japan” explored how Japan’s welfare schemes shaped the care practices. We focused on two key ideas: autonomy and familyhood. These ideas are mainly inspired by Koichi Yokozuka, a person with cerebral palsy and an influential disability activist in 1970s Japan who famously rejected parental care of disabled children. Instead, Yokozuka advocated for jiritsu seikatsu, a Japanese version of the independent living movement.
The panel addressed the challenges of autonomy and familyhood in disability and elderly care in contemporary Japan, along with their impacts on the policies and institutions of long-term care. The landscape of familial care has undergone significant changes since the rollout of the Long-Term Care Insurance System (LTCI) in 2000, followed by the implementation of schemes and acts concerning disability care in subsequent years. Both the government and private sector partners invested significantly in materializing those schemes. Despite the massive efforts, defamilization of daily care, which the 1970s activists believed was an essential aspect of jiritsu (autonomy/independence), remains far-reaching. However, new forms of care activism are emerging, such as independent living for people with Down syndrome (DS) in downtown Kyoto, and women in long-term care activities taking over public spaces on a remote island in Okinawa.
Ironically, jiritsu has been the guiding principle for Japanese welfare policymakers since the 1980s, when they started to consider a national long-term care scheme. However, the term was soon appropriated by the neoliberal arguments that reinterpreted jiritsu as “minimizing dependency on welfare schemes” rather than as increased autonomy of persons needing care. Yuki Tsujimoto, the first speaker on the panel, provided an overview of how some repercussions of the disability independence movement were reinterpreted by policymakers, drawing on 1990s draft papers that eventually became the LTCI in 2000—a national insurance system with tax-revenue subsidies. The scheme is characterized by two principles: the beneficiary-shares-the-cost rule and contract-based services between beneficiaries and private care service providers, which policymakers believed would promote jiritsu and curtail public expenditures. The Services and Supports for Persons with Disabilities (SSPD) Act, introduced in 2005, was guided by similar principles. Small-scale welfare service providers proliferated in subsequent years across the Japanese archipelago.
Meeting at a daycare center at Ikema Island Okinawa, Photo credit: author.
Elderly care after the LTCI system has continued to rely heavily on the hands of women, both as welfare service providers and as family caregivers. However, in some circumstances, the scheme helped women occupy public spaces in some unexpected ways. Mari Kagaya examined how LTCI has reshaped economic activities and gender relations in local communities, focusing on a local non-profit organization established by a group of women on Ikema, one of Okinawa’s islands, with a population of 520. The organization was established to provide long-term care services. It provides home-based care services that combine home visits with daycare and overnight-stay programs. The organization had 12 staff members, of whom 11 were women. Furthermore, it has developed various projects, including the Shima-date or “island revitalization initiatives” program, homestay programs, and children’s community centers. Their activities brought significant changes to the island’s political economy, which had once marginalized and often rendered invisible the values of care performed by its female members.
Fishing wharf at Ikema Island, Photo credit: author.
My own work delves into the social textures of disability welfare in Japan by tracing the trajectory of Taiyo no Machi, a disability institution established in 1968 in the suburbs of Kure, Hiroshima. The institution provided job skill training to its residents, a rare practice in Japan at that time. However, it soon found it difficult to pursue its goals as the policies shifted towards deinstitutionalization, backed simultaneously by the policymakers’ vision of suppressing public welfare expenditures and disability activists’ vision of ending segregation. The institution recently revived after being taken over by new management, which shifted the business towards daycare services, including ryoiku (cognitive rehabilitation and education) for children with developmental disorders. Looking back, the unique institutional makeup of Taiyo no Machi, which combines an admission facility with an income-generating workshop, represented a peculiar blend of old protectionism and the emerging aspiration for jiritsu, or the independence of persons with disabilities. However, since deinstitutionalization, family care practices have intensified, despite supports by an array of subsidized disability care schemes.
Disability care in Japan today depends heavily on familial care, and jiritsu, or the social and financial independence of persons with disabilities, remains a challenge. However, some people with DS strive to figure out a way to realize independent living. Yuki Takeuchi focused on Motoharu Sasaki, a person with DS in Kyoto, who has been practicing independent living since 2018, when he was 35. Independent living of persons with intellectual disabilities remains a rare practice in Japan. However, two individuals played vital roles in making this happen for Motoharu: his mother, Kazuko Sasaki, and his care coordinator, Junpei Hirokawa. What we have learned from Motoharu’s experience is that independent living is a viable option for individuals with DS in Japan, thanks to the welfare schemes outlined in the SSPD Act of 2005 and the support of dedicated care workers. However, it is achievable only through the careful fabrication of a set of viable practices and relationships by putting together a number of welfare schemes, none of which are designed to support the independence of persons with intellectual disabilities. Moreover, professional support (such as that by Mr. Hirokawa) to put the resources together is not available in most parts of Japan.
The tricky nature of jiritsu as independence/autonomy comes into sharper focus when its different dimensions are set side by side. Kyoko Aizaki explored how differences in policies and social environments between the UK and Japan shaped financial security, employment, and family relationships for individuals with autism. The focus was on how these differences impact the social inclusion and everyday lives of autistic people. The study examined the legal responsibilities and policies regarding the education of children with disabilities, including those with autism, by focusing on special needs education, medical diagnostic systems, and employment policies in Japan and England. Furthermore, interviews were conducted with adults with autism spectrum disorder (ASD) as well as parents of children with ASD, both in Japan and England. Through these interviews, the study explored how the policies of both countries affect the autonomy of autistic individuals, particularly in terms of their ability to live independently, engage in the workforce, and interact within their families and communities.
The key lesson emerging from this panel is that although massive investment in welfare schemes has reshaped Japan’s care landscape over the last few decades, jiritsu among those in need of care has hardly materialized in the way that 1970s activists once hoped. This evaluation is crucial, as it reminds us that the Japanese welfare system is a complex historical product containing conflicting goals and practices. The panel’s discussions also offer a critical perspective on why we must be wary of the tendency to render Japan’s welfare system as the original model for East Asian societies. By expanding this discussion through engagement with Taiwanese and Korean colleagues in this new network, I hope we will be able to disrupt conventional homogenizing narratives of “diffusion” in East Asia and foster a more rigorous understanding of diverse struggles for disability rights and elderly care.
Author bio: Makoto Nishi is a medical anthropologist at Hiroshima University, whose research concerns states of life at the intersection of disabilities or chronic health conditions, gender, and power. His past and present focus of research includes the HIV epidemic in Ethiopia during the health system transition and families with autistic children during the Covid-19 pandemic. His recent publications include: Curing Lives: Surviving the HIV Epidemic in Ethiopia (Palgrave Macmillan, 2023); “Care during ART Scale-up: Surviving the HIV Epidemic in Ethiopia” (BioSocieties 2023, 18(3), 567–585).