This manuscript is an incomplete draft for just discussion, so please do not cite.

Why Disabled People Called for Independent Living: Japan’s Experience
Shunsuke Hirono(Doshisha university Ph.D student)
1. Background to My Presentation and Critical Perspectives
First and foremost, my presentation focuses on why disabled people took action forindependent living. As detailed below, independent living means that disabled people
live separately from residential facilities and their parents. In this study, I address
what caused disabled people to take action for independent living given that otherJapanese studies lack such perspective. A crucial point for discussion is that eventhough disabled people and their parents sought the construction of additional
residential facilities prior to the movement for independent living becoming active, it isunclear why disabled people stayed away from the facilities and demanded otheroptions later. The answer to this question is predictable; disabled people found it
uncomfortable to live in such facilities. So why then was action taken to call for the
residential facilities? Was it impossible to predict that the disabled would faceinconveniences and uncomfortable situations in such residential facilities? I aim toclarify the issues in this report.
2. What is Independent Living?
I think that independent living for disabled people has two aspects. First, it entails
setting disabled people free from shackled environments (home and live-in residentialfacilities). Second, it enables disabled people to manage and take responsibility for theirown lives.
Given this line of reasoning, action for independent living for disabled people can bedefined as; first, setting them free from shackled environments; second, enabling themto manage and take responsibility for their own lives; third, seeking the necessaryresources(accommodation,nursingcare,incomeguarantees,andmeansoftransportation) to achieve the first two goals; and fourth, creating local communities
that are disabled people-friendly.
3. The Entire Landscape of Historical Backgrounds
The 1960s: Problems with residential facilities became clear. (On the whole, however,residential facilities were in a more advantageous position.)1This manuscript is an incomplete draft for just discussion, so please do not cite.

1970: Disabled people protested about living at a residential facility in Tokyo andcalled for independent living.
Around 1972: Disabled people began to take action and called for the installation ofelevators at a Kyoto subway station due for construction.
1973: The Tokyo metropolitan government launched a system to dispatch nursing care
workers to people with serious and profound handicaps affecting the entire body,
including those suffering from cerebral palsy.
1970: A disabled child was killed in Kanagawa and local residents appealed for reduced
punishment for the criminal. Disabled people’s organizations protested against
this.
1976: A wheelchair-bound disabled person and his nursing care worker tried to ride abus, but the driver refused to carry them. This became a contentious issue
because disabled people in wheelchairs were not allowed to ride buses at the time.
1979: Internal debate among members of movement groups representing disabled
people over schools for disabled children.
* During this time period, activities for disabled people were individual-based and they
typically left their residential facility or home on their own to pursue recreation
activities. The disabled also caused conflicts with the aim of changing society. However,the system for dispatching nursing care workers to the disabled (particularly those inurban areas), which was launched in 1973, became a significant part of the disabled
people’s movement.
1979: Edward V. Roberts visited Japan.
With the support of Duskin Co., Ltd., a group of Japanese disabled people madean inspection visit to the United States in 1980.
1981: The International Year of Disabled Persons (IYDP)
1983: Judith E. Heumann and Michael Winter visited Japan to hold training seminars
on independent living.
1984: The Japan Center for Independent Living was established in Kyoto.
1986: The Human Care Association was established at Hachioji in Tokyo.
1988: The Public Nursing Care Association was established.
Subsequently, centers for independent living were widely established in many
parts of the country. The 1980s and 1990s were characterized by the commitmentof disabled people to act as organizers in the provision of services.
2003: Support systems facilitating independent living for disabled people were launched.
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This manuscript is an incomplete draft for just discussion, so please do not cite.

Many centers for independent living operated as nursing care offices.
2005: The Law to Encourage Self-Reliance Among the Handicapped was enacted.
Protest demonstrations over the burden of service fees were held.
*In the 1990s, independent living for disabled people was guaranteed and promoted by
the establishment of centers for independent living and the development of public
nursing care systems. In particular, a financial support system for independent living
introduced in 2003 secured a variety of services and laid significant foundations forindependent living for disabled people. Furthermore, in contrast to previousgenerations, many disabled people were now committed to organizing services. After theintroduction of the financial support system in 2003, more and more disabledorganizations conducted coordinating tasks for the dispatch of social caregivers. This
worked well and enhanced the provision of stable public nursing care services andenabled not only highly motivated disabled people but also many other disabled people
to realize independent living. Meanwhile, disabled people also became users ofindependent living services in which caregivers are coordinated by nursing care offices(Watanabe 2011). Disabled people were free to choose their favorite care workers. In
such circumstances, disabled organizations became more like independent living service
providers than activity groups for the disabled. This cannot be described as fully
undesirable, but if this trend continues, the directors of independent living support
centers are likely to become “ordinary” support providers of public nursing careservices.
4. Why Did the Movement for Independent Living Begin?
As mentioned above, this study focuses on why disabled people moved to take action for
independent living. I will closely examine the situation in the 1960s that was referred toearlier. Essentially, prior to the development of support systems, independent living fordisabled people was considered dangerous. So why then did disabled people want tomove away from their parents and residential facilities?
4-1 Home as a Problem
In 2011, the word home is generally considered to have positive implications. For
example, home services are considered to be a significant support for both disabled andelderly people. However, the word had negative implications 50 years ago and implied3

This manuscript is an incomplete draft for just discussion, so please do not cite.

that a person had nowhere to go. That is, staying at home meant that you were in needof your family’s care and attention.
I will delve further into the details of this situation. First, what did family mean todisabled people? Family hindered a disabled person’s freedom, in exchange for which
they received the necessary assistance. The following are two statements made bydisabled people on the subject:
I stayed in a small room all day long. Actually, my family did not allow me to get out of theroom. In summer, when I opened the window, children who happened to pass by my housethrew dogs’ excrement and stones at me. However, despite such harsh treatment, I wanted
to play with those kids. My grandparents always said to me, “Emiko, you play with dolls.
Dolls do not bully you.” (Emiko Iwatate [1978], I Want to Go to School, Tsuge Shobo
Publisher, 19)
I stayed at home every day 20 years ago (1961). At that time, I spent much time with mymother. Eating and watching TV were my only diversions. (Text omitted.) Now, I cannot
imagine my mother cleaning my bottom just as she did in those days. I well remember thefear of thinking about what I would be like after 10 or 15 years passed. I imagined a double
suicide with my mother then. (Kazuaki Akiyama [1981], Journey to Self-Reliance: Visitinga British cerebral palsy sufferer, self-publishing, 2-3)
In the eyes of disabled people, family members supported their survival, but were also ahindrance to their freedom. Disabled people also felt uncomfortable with family support.
Their uncomfortable feelings were amplified as their family members changed.
According to reports compiled by organizations representing the disabled, disabled
people were often taken care of by their brothers and sisters after their parents had died.
In addition, when those brothers and sisters died, nephews and nieces adopted thecarer’s role. Disabled people felt more uncomfortable when their parents died and theirbrothers and sisters became caregivers because new family members became involvedin their care. Disabled people placed a heavy burden on family members and thisconsequently made them feel more awkward and uncomfortable than when theirparents were the primary carers. The key point is that family members can act as both asupport and a hindrance to a disabled person.
Of course, it is both improper and oversimplified to regard family members as ahindrance to disabled people. From the family’s standpoint, they are often on thereceiving end of discriminatory treatment levied by the general public because of the4This manuscript is an incomplete draft for just discussion, so please do not cite.

reality of having a disabled person in their family, which induces the family toencourage the disabled person to stay at home. Socially, family members are supposed
to raise disabled children without causing inconvenience to others. “Family love” is thekeyword. In addition, mothers of Japan’s disabled children often feel a sense of guilt.
Another important point is that prior to the development of public pension systems,
children were considered to be significant assets to parents in their retirement;
extrapolating, it is apparent that disabled children were regarded as defective assets.
In consideration of these factors, the situation surrounding disabled people andfamily members can be approached in the following three ways. First, from thestandpoint of family members, they cannot avoid being on the receiving end of
discriminatory treatment and this often induces family members to keep disabledfamily members out of the public eye. Second, from the standpoint of disabled people,
such behavior effectively controls and restricts their freedom and makes them feel more
uncomfortable. However, they have no alternative but to rely on their family for support
in their daily life. Third, because parents typically predecease their children, otherfamily members must assume the carer’s role and this leaves disabled people feelingawkward and uncomfortable. The combination of these factors can induce the disabled
to live in residential facilities and away from family.
4-2 Transformed Evaluations of Residential facilities
As noted above, after the 1960s, disabled organizations called for the creation of more
residential facilities. The following two points should be noted. First, disabled people
who had actually experienced life in such residential facilities were in the minority
among the organizations calling for change. Second, those who wanted to use
residential facilities were divided into two different categories.
For example, one disabled person looked upon residential facilities as ideal places inwhich to live:
Considering my life after the death of my parents, I strongly hope that I can live in close
collaboration with cerebral palsy sufferers, however many years later it may be in thefuture. (Kimishima, 1960: 4)
On the other hand, another disabled person considered residential facilities to be thesecond best choice:5

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As an individual person, I simply want to have my own family. I do not want to either livewith my parents throughout my life or live with others at residential facilities. Neither
choice makes it possible for me to have my own family. It just forces restrictions on me andgives me a hard time with how to deal with human relations. All these things mean thatpeople with serious disabilities experience no happiness. However, we cannot commit
suicide just because we cannot live as we like. Under these tough circumstances, we haveto think about a way to improve our conditions and try to pursue happiness as hard as
possible. Residential facilities are necessary in that sense. (Tomoi, 1961: 7)
These two opinions have one significant thing in common; both individuals think thatliving in a residential facility is better than staying at home. Information gaps about
live-in facilities affect whether the disabled evaluate those facilities positively ornegatively. The two disabled individuals above evaluate residential facilities incomparison to staying at home instead of regarding those facilities as ideal places inwhich to live.
The requests made for the construction of more residential facilities were based onthese factors. In this context, it is notable that some disabled people requested more
residential facilities and others, simultaneously, pointed out problems with theirconstruction. This was quite natural in the sense that disabled people’s requests forresidential facilities were based on comparisons with staying at home. The following are
excerpts from two books that present critical views of residential facilities before 1970:
On the third day after I had moved to the facility, I did not have bowel movements in themorning due to an unfamiliar lifestyle there and I had one around 3 p.m. At that time, I
needed someone’s help for my bowel movements. I called the nurse, feeling uncomfortable.
She did not come quickly. Looking at my desperate situation, Mr. A, who lived with me inthe same room, went to call her on crutches. She appeared shortly and grumbled, “Youshould not call me for after-hours bowel movements next time.” (Text omitted) She also
said to me, “You rock the boat here. Get out.” She knew that I had nowhere else to go and if
I got out of there, I would be in trouble without social capability. An order to get out of theplace was a declaration of death to me. I had no other choice but to live with her harshtreatment. (Hiroko Kimura [1967], The Autobiography of My Life, the Earth Society, 50-51)
One day, I could no longer stand living in the room I used at that time. I asked a care
worker to change my room I had believed that the care workers at the facility understooddisabled people. However, unexpectedly, the care worker swore, “This facility is the only
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place that supports crippled people who live for nothing.” This verbal abuse deprived me ofevery hope and glow of life. I felt helpless and escaped from the place with nothing but theclothes on my back. (Motoko Koshiba [1960], Even With Slow Steps, Inoue ShoboPublisher, 217-218)
A common factor detected from these relates to the restrictions placed on going out andon times for eating and bowel movements. Furthermore, in both cases the disabledindividuals were forced to leave the residential facilities as a result of the harsh words
and uncaring attitudes metered by the care workers. It was certainly true that disabledresidents in the facilities had nowhere else to go at the time and this inevitably resulted
in unequal relationships between staff and disabled residents. In the eyes of disabled
people, the desperate conditions meant that they faced similar problems to those athome, even though they had moved to a facility to escape an uncomfortable homeenvironment. These circumstances and experiences prompted disabled people to takeaction for independent living.
5. Conclusion and Suggestions
5-1 Conclusion
The focus of this study was to identify why disabled people took action in support ofindependent living. This study also considered why disabled people requested theestablishment of more residential facilities before they began to take action. The
following points answer these questions.
1. The requests for residential facilities by disabled people were based on dissatisfaction
with awkward and uncomfortable home environments.
2. Disabled people residing at home lived with restricted freedom in exchange for whichcare and attention was provided by their family.
3. Disabled people residing at home could not avoid changes to their primary carer asfamily circumstances changed, resulting in more awkward and uncomfortable livingconditions.
4. Few disabled people had actually experienced life in a residential facility and many7

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disabled people wanted to reside in residential facilities.
5. However, care workers within such facilities often displayed an arrogant andpatronizing attitude, believing they were being generous and kind by providing support
to helpless disabled people with nowhere else to go. This clearly was not an ideal
situation for disabled residents.
6. When disabled people decided to leave residential facilities, they did not consider
returning home since they had sought to escape from uncomfortable living conditions
there. This induced disabled people to take action for independent living.
5-2 Suggestions
1. As in Japan, South Korea’s rate of retired household expenditure as a proportion of
public expenditures is high, while public expenditure on the unemployed is low.
Therefore, it is conceivable that family plays a large role in providing care and attention
for disabled people. On this basis, it is likely that disabled Koreans are prompted toreside away from their family members as in Japan.
2. Similar to Japan, South Korea underwent rapid modernization. The motivation forfamilies to provide care and attention to disabled people has therefore reduced and thishas increased the demand for residential facilities. In the meantime, as the Convention
on the Rights of Persons with Disabilities suggests, the idea that disabled people havethe right to choose where to live will also become more ingrained. It is likely, therefore,that some groups will emphasize the need to resolve the awkward and uncomfortableconditions faced by the disabled in their homes. Other groups will note problems withresidential facilities. This leads to the logical conclusion that securing alternative living
conditions is necessary.
3. It is clear that the requests made by disabled people for residential facilities and thedemands for independent living are based on common logical threads.

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