In 1995, a magnitude 7.3 earthquake struck just 16 kilometers from Kobe, a port city in Japan. The quake caused more than $80 billion in property damage, and more than 6,400 people died. The city’s disabled residents were uniquely impacted, as they risked losing benefits provided by local governments if they moved from areas of damage. Moreover, they had trouble finding affordable and accessible housing.
Anthropologist Karen Nakamura notes that “the independent living (IL) movement had started in 1986 in Japan after some men and women with disabilities had visited and interned at IL programs in the United States and came back.” An essential part of the movement is its intention to give disabled people the resources to live in their communities rather than in nursing homes. Centers for independent living (CIL) provide “attendant care services, independent living training and transitioning services, peer counseling, running of sheltered workshops, and so forth” for its members.
The Mainstream Association, one such CIL, was founded by disability activists in 1989. Left homeless after the earthquake, Tsutomu Shimoji, who earlier had been able to leave a nursing home due to the association’s support, was forced to leave Kobe temporarily. He and other disabled peers moved to Nagoya City, where an independent living center had petitioned the city government to support quake victims. With their own needs met in Nagoya, Shimoji and and a compatriot could turn their attention to helping Mainstream Association support more disabled people back in Kobe.
“They raised $250,000 in two weeks, all from private donations,” Nakamura writes. “It allowed them [Mainstream Association] to purchase their own building, an open design created specifically around the needs of people with disabilities.”
Inequities in and slowness of the Japanese government’s response to the Great Hanshin earthquake, as it would later be called, led to some legislative reform. A new law “made it easier for socially-minded non-profit organizations to incorporate.” And reforms to the Support Payment Plan in 2003 “transformed the independent living movement” by “providing the mechanism by which a CIL could fund itself.”
“The idea of CILs funded by the Support Payment Plan caught like wildfire,” Nakamura explains. “Designed for people with mild to moderate needs, the Support Payment Plan quickly became a mechanism for people with severe disabilities to move out of institutions or their parents’ homes and live independently.”
However, just a year later, new legislation that would cut the amount the government would cover for a personal attendant was on the table. In 2004, the national Ministry of Health, Labor, and Social Welfare in Tokyo proposed a “Grand Design” that would integrate disability care into another program, with the result of “substantially“ reducing payments for attendant care services.
“With the support of an attendant, many people with moderate to severe disabilities who had been institutionalized for decades were living independently for the first time,” writes Nakamura. Bewildered by this threat to their newfound independence, disabled people and their allies staged a series of protests in front of the Ministry of Health, Labor, and Welfare building in Tokyo.
“The Ministry had not foreseen the degree to which the Grand Design would be criticized and withdrew the proposal from consideration,” Nakamura writes. “Demonstrators argued that it made no sense for disability care to operate as an insurance program.”
When Nakamura last visited the area in 2006, she found that the future of the independent living centers was up in the air. But she hopes that the focus on local support for disabled people “may be exactly what [is] needed in the next chapter of the disability movement in Japan.”