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Conflict and cooperation

The participatory process of people with disabilities in disability policy making in Japan
Conflit et coopération. Le processus de participation des personnes handicapées à la politique du handicap au Japon
TAKAHASHI Ryoko
p. 45-58

Résumés

L’article analyse l'implication des collectifs de personnes handicapées et des organisations connexes dans le processus d’élaboration des politiques du handicap au Japon et envisage de nouvelles formes de collaborations pour résoudre les problèmes politiques à venir, en s’appuyant sur l’étude des mouvements sociaux, des interactions stratégiques et de l’action collective coopérative. Il montre, dans un premier temps, comment la question de la dépendance persistante des personnes handicapées vis-à-vis des institutions résidentielles et des membres de leur famille s’est imposée comme un problème fondamental de la politique japonaise du handicap, à la suite de la tragédie de Tsukui Yamayuri-en en 2016. Il retrace ensuite les grandes lignes de la politique japonaise du handicap depuis les années 1960 afin de bien saisir l’origine du problème en relation avec les mouvements des personnes handicapées et de leur famille. Deux exemples de coopération avec des collectifs de personnes handicapées et des organisations affiliées, qui ont eu lieu dans les années 2010, au moment de la ratification de la CDPH, sont présentés. Enfin, des pistes de collaboration plus étroite entre les collectifs de personnes handicapées et les organisations apparentées, en particulier les organisations de parents/familles, sont proposées en vue de favoriser l’émancipation des personnes handicapées vis-à-vis des institutions et de libérer les familles des responsabilités de leur prise en charge.

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Notes de l’auteur

Acknowledgements

This work was supported by a JSPS Grant-in-Aid for Scientific Research (KAKENHI) Grant Number 20K02084.

An earlier version of this paper was presented at the EHESS Seminar “French-Japanese perspectives on disability: Welfare policies and social participation in the age of technology” on March 10, 11 and 12, 2022.

Texte intégral

1. Introduction

1I have conducted comparative research between countries on disability policies and on the participation of persons with disabilities, from the perspective of the development and social movement of disabled people’s organizations (hereafter referred to as DPOs), and have found that while the history of the DPOs and their participatory process in disability policy making varies, the conditions necessary for the concerns of people with disabilities to be successfully reflected in disability policy are common to all countries, including Japan. They are: 1) the establishment of DPOs as autonomous organizations that serve as a foundation of identity for people with disabilities and work to reduce the social disadvantages they face; 2) the formation of DPO coalitions across disability categories and the expansion of domestic and international DPO networks; 3) DPO strategies tailored to the political situation in each country; 4) the use of international cooperation frameworks such as the Convention on the Rights of Persons with Disabilities (hereafter referred to as CRPD) (Takahashi, 2017, 2019).

2Japanese DPOs have also amplified their voices and built on efforts to improve disability policy in order to address the challenges faced by people with disabilities. However, there are still many problems with Japanese disability policy, as indicated in the Concluding Observations on the Initial Report of Japan by the United Nations Committee on the Rights of Persons with Disabilities, released in September 2022. In particular, with regard to Article 19 - Living independently and being included in the community, the fact that “[the Committee urges the State party to] take expedited measures to end the institutionalization of persons with disabilities, including children with disabilities, by redirecting its budget allocations from the placement of persons with disabilities in residential institutions towards arrangements and supports for persons with disabilities for living independently in the community on an equal basis with others” is one of the biggest problems, both present and future, concerning Japan’s policy for persons with disabilities.

3The aim of this paper is to provide an overview of the involvement of DPOs and related organizations at milestones related to institutionalization/deinstitutionalization and community living in the process of disability policy making in Japan, and to examine the direction and potential for collaboration in solving future policy issues.

4In analyzing the actions taken by DPOs as social movement organizations, I referred to social movement studies focusing on strategic interactions (Jasper, Moran & Tramontano, 2015) and cooperative collective action (McCammon & Moon, 2015). Jasper, Moran and Tramontano (2015) noted that “players in a social movement attempt to influence other players, whether through conflict or cooperation, in a strategic manner.” “Conflict and cooperation,” which is also the title of this paper, occurs not only between DPOs but also between DPOs and other organizations. The other organizations include parent/family organizations, medical, welfare, educational, and other professionals, government and bureaucratic officials, and social service providers. This paper will sometimes refer to parent/family organizations, because parents/families of people with disabilities were one of the main constituents of social movements for people with disabilities, acting from the position of responsibility-bearing caregivers and advocates demanding improvement in welfare policy for people with disabilities and in the social attitudes toward them.

5I outline this paper as follows; Firstly, I will identify a fundamental problem with Japanese disability policy, which has consistently depended on residential institutions and family members to care for people with disabilities through a case study of the conflicting opinions of the DPOs and the families of the facility residents with regard to the policy after the tragedy of Tsukui Yamayuri-en in 2016. Secondly, I will provide an overview of disability policy since the 1960s in order to clarify the origin and history of this problem in relation to the DPO movement and the movement of disabled-person parent/family organizations, based on previous Japanese disability studies. Thirdly, I will examine two examples of cooperation on the part of DPOs and affiliated organizations which took place in the 2010s, based on documents such as the minutes, parallel reports and lecture records of the DPO members who were involved in the creation of the parallel report in order to take advantage of the greatest opportunity to improve disability policy in accordance with the framework for international cooperation, which was created by the ratification of the CRPD and the subsequent review by the United Nations Committee on the Rights of Persons with Disabilities. Finally, I will suggest the possibility of further collaboration between DPOs and related organizations, especially parent/family organizations, in order to free people with disabilities from institutions and liberate families from caregiving responsibilities.

6The approach adopted in this paper allows the issue of family dependency in Japanese disability policy, which is often regarded as a cultural feature, to be analyzed from the perspective of DPOs’ participation strategies in disability policy as social movement organizations, a common component across countries.

2. A case of conflict between DPOs and the families of the residents after the tragedy of Tsukui Yamayuri-en

7In 2016, at Tsukui Yamayuri-en, a residential care facility for people with intellectual disabilities, 19 residents were killed by a former employee. Japan ratified the CRPD in January 2014 and enforced the Act for Eliminating Discrimination against Persons with Disabilities in April 2016. The incident took place despite increasing momentum towards inclusion of people with disabilities, and it caused great shock in Japanese society.

8The incident brought to our attention the many challenges facing Japanese disability policy. The facility was set up by Kanagawa Prefecture in 1964, during the period when the Japanese government promoted institutionalization. There were about 150 people with disabilities living in the facility at the time of the incident. Their ages ranged from 19 to 75 (with an average age of about 50), the longest length of stay was 52 years (average 18 years), and about 80% of residents were severely disabled (Kanagawa Prefecture, 2017). Following the incident, there has been a great deal of debate over the future of the residents admitted to the facility: whether the facility should be rebuilt or whether there should be a transition to community living. Family members of some of the residents advocated for the reconstruction of a facility of the same size, at the original location, and expressed strong unease concerning community living and deinstitutionalization. They were in support of institutions as places where children with disabilities would be able to live in safety after their parents passed away. On the other hand, DPOs claimed that large residential facilities have become anachronisms and that smaller-sized, community-based living arrangements constitute the international standard (Takahashi, 2020). The underlying reasons for this conflict were a chronic lack of welfare services that would allow people with disabilities to live in the community. Bottom line was family members had to bear the burden of care without receiving information about welfare services that would support people with disabilities living in the community (Narita, 2020). We would argue that the problem lies in Japanese welfare policy itself, which relies on families to provide care for people with diverse care needs, including those with disabilities. Families, especially parents of people with disabilities, feel strongly that they are burdened with the responsibility of caring for their children with disabilities until their own death (Takahashi, 2022).

9A lack of welfare services, the dependence on families and the consequent delay of deinstitutionalization are described in the parallel report submitted by the Japan Disability Forum to the United Nations Committee on the Rights of Persons with Disabilities in March 2021 (I will examine the process of drawing up this report). The report presents data on the current lack of progress in transitioning people with disabilities into local communities, and analyzes the causes as follows:

[…] the lack of progress in transition to the community in light of a shortage of social resources, including places to live in communities due to policies that presuppose dependence on family, and the lack of such resources being supplemented by residential institutions.

[…] approximately 120,000 persons with intellectual disabilities and approximately 73,000 persons with physical disabilities currently live in residential institutions, and the number of residents in such institutions was only reduced by 8,000 persons with intellectual disabilities (6%) and 14,000 persons with physical disabilities (16%) in the ten-year period leading up to 2015. There has been no progress in transition to the community from residential institutions or parental homes, with the number of persons on waiting lists to enter residential institutions assumed to exceed the number of persons leaving institutions, and not all persons with disabilities are able to exercise the right to choose where and with whom they live.

[…] the Basic Guidelines for the 4th Welfare Service Plan published by the Ministry of Health, Labour and Welfare (April 2015 to March 2018) set a target of at least 12% of the 132,000 persons living at residential institutions (as of the end of March 2014) transitioning to community living in the four-year period leading up to the end of March 2018, but only 5.8% have actually transitioned to community living. As a result, the target was lowered to 9% in the 5th Basic Guidelines (April 2018 to March 2021) and further lowered to 6% in the 6th Basic Guidelines (April 2021 to March 2024), and no effective strategy for transition to the community has been implemented. (Japan Disability Forum, 2021: 28)

3. Development of Japanese disability policy and institutionalization/deinstitutionalization1

  • 1 This section is a significant modification of Takahashi (2022: 24-7).

10In this section I will briefly explain the history of the development of Japanese disability policy related to institutionalization and deinstitutionalization, and examine the question of how it came to be taken for granted that families should take care of people with disabilities in Japan, drawing on previous disability studies research.

11While Western countries shifted their policies for persons with disabilities from institutionalization to deinstitutionalization and community living during the 1960s and 1970s, Japan promoted the construction of residential facilities and psychiatric hospitals.

12From the 1960s to the beginning of the 1970s, when Japan enjoyed rapid economic growth and the national welfare budget was greatly increased, welfare services for people with disabilities were developed. For example, household-task and care support by helpers began to be provided on the premise that care was to be conducted by family members. However, there were strict income limits to access this service. As the inadequacy of welfare measures for people with severe disabilities and the heavy burden of care placed on their families came to be recognized, priority was given to the construction of long-term residential facilities (Tsuchiya, 2002).

13Alongside the promotion of this type of disability policy, there was the formation of associations of families, especially parents, caring for a family member with a severe disability at home and lobbying the government for such facilities. Moreover, Zenkoku Jusho Shinshin Shogaiji (sha) wo Mamoru Kai [The Nationwide Association for Children (Persons) with Severe Physical and Intellectual Disabilities], founded in 1964, was very influential. It was established by the parents of mentally and physically disabled children, with the support of doctors who engaged in their medical care and counseling. In the 1960s, this association had great influence on the legalization of facilities for children with severe disabilities and their subsequent expansion. The association emphasized parents’ duties and bonds, and delivered their requests to the government without conflict. They succeeded in forming a good relationship with the government and the ruling party and received cooperation from them. Parents active in this association believed that they were doing as much as possible as parents, and they asked for public support only when needed. Facilities were expected to provide security for the children even after their parents’ death (Kubota, 2015).

14Thus, the families were not only in a passive position of having been forced to assume caregiving responsibilities, but also in a position of actively calling attention to their roles and responsibilities as family caregivers, thereby demanding the government to improve the welfare of people with disabilities, especially through the construction of facilities (Hori, 2014).

15Innovative DPOs like Aoi Shiba no Kai strongly condemned the values upheld by certain families, accusing them of being paternalistic and oppressive toward individuals with disabilities. Aoi Shiba no Kai, a relatively small yet pioneering group of people with cerebral palsy, was particularly vocal in criticizing the sympathy often directed at people with disabilities and their families, as well as the eugenic ideologies that denied the right to life for those with disabilities (Tateiwa, 2010). Around 1970, criticism of large facilities for people with disabilities emerged at Fuchu Ryoiku Center set up by the Tokyo Metropolitan Government. Activism in opposition to the center’s regimented way of life, which lacked privacy and self-determination, was carried out by some of the residents and their supporters. This led to the start of a movement that rejected the image of people with disabilities as being in the custody of their families; they were considered to be individuals with their own distinct interests and assertions who should live independently. In the latter half of the 1970s, this came to be referred to as the “independent living” movement (Tateiwa, 2010).

16After the oil shock, which effects lasted from 1973 to the mid-1980s, the number of residential facilities for long-term institutionalization increased, but the stagnation of the Japanese economy brought about the idea of a “Japanese-style welfare society” in which families were deemed to take an important role as unpaid caregivers, and they were increasingly expected to bear that responsibility.

17Some new parent/family movements also emerged. An organization named Sentensei Shishi Shougaiji no Fubo no Kai [Association of Parents of Children with a Congenital Disability of an Extremity] was established in 1975 and represented a different type of parental movement from the one mentioned above. While this organization initially claimed that it was parents’ responsibility to explore the causes of their children’s disabilities, by the 1980s, it began adopting a more positive perspective on disabilities, rooted in the belief that people with disabilities are not necessarily unhappy. Statements by people with disabilities who accepted their condition, as well as criticism of parents’ attitudes and political positions on the part of a DPO, brought about this change in attitude. Moreover, advancements in prenatal diagnostic technology and increased efforts to prevent disorders led to a growing sense of urgency. In other words, there was a perceived threat in denying the existence of people with disabilities by choosing not to give birth to children with disabilities (Hori, 2014). Another example is Tanpopo-No-Ie [Dandelion House], founded in 1973 by mothers of children attending special-needs schools, with the goal of creating a societal space for children who had graduated from those schools. The initiative gained support from a broad range of community members beyond just the parents. The parents involved rejected the care-focused institutions that had been established in the 1960s at the request of parents, seeing them as unsuitable for children who had graduated from special-needs schools. They resisted the social norm of isolating people with disabilities from society and attempted to find places for them in the community other than institutions and homes. An example of activities they would support would be holding a concert in which people with disabilities played musical instruments on stage. There were two new perspectives in this movement: deinstitutionalization with the goal of breaking the isolation of people with disabilities from society, and defamiliarization, which resisted the social norm of moving children or families with disabilities out of sight, i.e. imposing closed relationships on children with disabilities and their parents (Hirashima (Seki), 2019). These viewpoints reflected resistance against exclusion from society.

18From the 1980s, the trend towards normalization, symbolized by the designation of 1981 as the International Year of Disabled Persons, prompted a change in policy axis from institution-centered welfare for people with disabilities to living support in the community, including living with family. It also facilitated the participation of DPOs in policy making. DPOs that negotiated with the government asked for income security to enable independence from parents and a guarantee of care. Tsuchiya (2002) pointed out that DPOs that negotiated with the government in the 1980s worked on the two important topics of income compensation and care coverage. They contributed to the establishment of a basic disability pension system with the idea that financial independence from parents would reduce the burden on parents, but they avoided making an issue of parents depending on daily life care and assistance resources.

19In the 1990s, the disability policy trend finally changed direction from institutionalization to support for community living. Tsuchiya (2002) also pointed out that the term “community” came to be used frequently, and in the late 1990s, the term “family” disappeared from government disability plans and policies. Although home-based welfare policies for people with severe disabilities progressed, family care and the associated burden did not disappear; rather, they were hidden. Thus, the responsibility placed on families and their role as caregivers came to be regarded as acceptable and were no longer mentioned. As DPOs lobbied the government for persons with disabilities to be able to lead independent lives, the unintended consequence of their strategy of disassociating themselves from the problem of the caregiving burden placed on families is that until the present time families continue to bear the responsibility of caregiving.

20From the 1990s, Japan’s so-called bubble economy burst, and because of the prolonged recession that ensued, funds have still not been allocated to the supply system to provide adequate social resources for supporting a transition to community living. The result is that private care provided by families and a welfare system that is dependent on residential institutions continue to this day.

4. Development of the disability movement and policy participation through conflict and cooperation

21The beginning of the DPOs’ movement and their advocacy role was not at all late compared to Western countries. They developed while criticizing disability policy, negotiating with the government, and sometimes conducting courtroom battles. From the 1980s, DPOs participated in domestic policy making, formed coalitions across disabilities and expanded domestic and international networks. In 1986, DPI-Japan, and in 1991, the Japan Council on Independent Living Centers, were formed as associations of domestic DPOs. In the 1990s, an international network was created in anticipation of the United Nations’ Asian and Pacific Decade of Disabled Persons (1993-2002) and the establishment of the CRPD. In 2002, the 6th DPI World Assembly took place in Sapporo. In 2004, the Japan Disability Forum (hereafter referred to as the JDF) was formed, focusing on various DPOs, including family and professional groups. In the first decade of the 21st century, they also participated in the formulation of the CRPD.

22The movement of people with disabilities has been brought into the mainstream through various means, and DPOs have become more involved in the policy-making process. However, the participation of representatives of persons with disabilities in government disability policy in a formal, substantive, and egalitarian manner was first achieved in 2010 (Takahashi, 2017). The Committee for Disability Policy Reform, the first such committee with representatives of people with disabilities making up half of its members, discussed the general direction of disability policy. Its composition reflected a desire for a different strategy from those adopted previously about participation in policy making. Furthermore, the parallel report was another example of DPOs applying pressure for the reform of government disability policies using the CRPD framework. This represented a difficult and novel way for DPOs to engage in policy-making, and it appears that a process of trial and error was required to determine the most effective strategy to pursue.

4.1. The committee for disability policy reform

23The Committee for Disability Policy Reform (hereafter referred to as the Committee), which met from 2010 to 2012, was established at a time when the disability movement was becoming more involved and influential in the disability policy making process. This was an official government committee established to reform domestic legislation for persons with disabilities in order to comply with the CRPD, with more than half of its members being persons with disabilities or related parties. Instead of bureaucrats being in charge of the Committee, Mr. Higashi, a lawyer who had been active in DPI-Japan and the JDF, served as the Committee’s secretary-general. Additionally, in order to facilitate the participation and accommodate views of various persons with disabilities, assistants and supporters accompanied the participants, and information provision guarantees and meeting strategies were devised while ensuring inclusion of their respective disabilities (Sai, 2010).

24The creation of this committee, with a structure and management approach that ensured the meaningful participation of persons with disabilities, represented a major milestone in the history of Japanese welfare policy development. It came about immediately after the change of government following the defeat of the conservative Liberal Democratic Party in the House of Representatives election of 2009.

  • 2 These reports were also produced in “easy-to-understand versions” with ruby characters or easy expr (...)

25The Committee sometimes experienced significant conflicts of opinion due to the different positions and the diversity of its members. However, determined not to miss this rare opportunity, through discussions, coordination and cooperation, it was able to achieve the goal of ratifying the CRPD, which entailed substantial reform of domestic disability policy. The Committee succeeded in producing reports that provided direction for the reform of the law system for persons with disabilities.2

26Reflecting on the conflict and cooperation among the organizations that made up the Committee, Secretary General Higashi stated the following at the final meeting held in March 2012:

While I think that [the participating organizations] made a lot of unreasonable requests, I really appreciate the fact that as the discussions progressed, you were not limited to the opinions of your own organization, but rather discussed the issues from the perspective of how we should put the ideas together as a whole. I believe that the first and second report, as well as the framework proposal, were made from such a perspective, rather than just asserting your own opinions. In this sense, I am deeply moved by the fact that this was the first time in the history of welfare in Japan that we were able to discuss such a matter together, even though each of us has a different standpoint. (Cabinet Office, The minutes of the 38th committee for Disability Policy Reform: 46)

27Today, it is evident that the change in government was ultimately short-lived and can be seen as a groundbreaking yet limited political shift. I would like to focus on the point that resolving conflicts of opinion on the part of DPOs and affiliated organizations was very difficult, and achieving it through cooperation was the disabled people’s movement’s “first experience” of participating in the policy making process. In other words, for Japanese DPOs, the approach of collaboration within a public policy-making committee was a novel strategy. They took advantage of the opportunity to engage in policy making under a liberal administration, something that hadn’t been possible under the long-lasting conservative government. It can be said that the strong desire to ensure the direction of policy change based on the spirit of the CRPD bore fruit.

28Although the creation of a committee where DPOs and related organizations could participate and have their voices heard in policy decisions came later than in Western countries, it can be said that Japanese DPOs effectively leveraged the positive pressure from international cooperation to ratify the CRPD, building on their previous accomplishments.

4.2. Parallel reporting by the JDF

  • 3 The JDF consists of the following organizations: Japanese Federation of Organizations of Disabled P (...)

29Another example of both conflict and collaboration is the process by which the JDF prepared a parallel report to be submitted to the United Nations Committee on the Rights of Persons with Disabilities (hereafter referred to as the UN Committee). The JDF consists of 13 national-level organizations3 with different perspectives and opinions, including DPOs representing various disabilities; support groups such as those made up of family members of people with disabilities; welfare service providers; professional organizations, etc. It was necessary for the JDF to coordinate different perspectives and opinions expressed by these organizations in order to create the parallel report. In particular, organizations such as the Japan National Group of Mentally Disabled People and the Japan Bar Association prepared and submitted parallel reports defending their own perspectives, despite their engagement in favor of a single disability type and profession.

30The parallel report is an independent report submitted by the civil-society organizations of a country to the UN Committee as part of the process of reviewing the implementation of the CRPD in that country. It can introduce data that are not fully provided in reports submitted by governments, display a different perspective on the situation and the challenges persons with disabilities in the country face. They can be highly influential with regard to the evaluation and recommendations of the UN Committee’s Concluding Observations (Sato, 2017).

31The JDF’s parallel report was compiled mainly through discussions with the Parallel Report Special Committee, whose members were selected from each JDF member organization, as well as by holding regional forums in three locations in Japan. Document-based interviews were also conducted with organizations for disabilities not represented among JDF member organizations, as well as organizations in related fields.

32Examples of themes that caused conflicts of opinion among the participating organizations in the process of preparing the parallel report include differences in views on deinstitutionalization and the need for residential facilities, and differences in views on inclusive education and special-needs education (Sai, 2021). These are also issues that have persisted in the disability movement since the 1970s.

33The following are statements by Mr. Sai from DPI-Japan, who participated in the drafting of the JDF’s parallel report, reflecting on various strategies for overcoming conflicts of opinion.

34The first concerns strategies regarding the overall policy for preparing parallel reports:

Members of the drafting team within the Special Committee got together to create a draft of the parallel report. As part of our strategy, we decided to include as many opinions as possible, organizing them rather than cutting some out, since we were a group of 13 organizations. This way, there would be many fewer instances of groups saying whether their opinions were included or not, each group would be more interested in the report, and it would be easier to explain what had happened when we took it back to our own group. (Sai, 2021: 95)

35The second statement concerns the reconciliation of conflicts regarding deinstitutionalization and community living:

In a sense, [the process of] creating the parallel report itself is also a strategy. Article 19 [of the CRPD] deals with institutions and independent living, while Article 24 deals with education, which is a difficult area. For Articles 19 and 24 in particular, we teamed up with people with different ideas and held many individual meetings to draw them up. For example, in the case of Article 19, we, DPI-Japan, are an organization that advocates for the closure of residential facilities as soon as possible, based on the idea of deinstitutionalization. However, due to the scarcity of social resources, there are quite a few people who have to rely on or need facilities if the conditions are right. This is where opinions were divided. Initially, some people thought that it would be good to increase the budget for welfare of people with disabilities, including for residential facilities […], we had many discussions with people from different organizations who were implementing such different ideas. […] We held a study session on the implementation of independent living in the community for people with intellectual disabilities. We also went on a tour of a facility that people who wanted to keep residential facilities recommended DPI-Japan members should definitely see. After a series of constructive dialogues, we settled on the conclusion that the parallel report should be based on the transition to community living. However, terms such as “deinstitutionalization” and “closure of residential facilities” were not used in the parallel report due to a request not to use them because they sounded too strong. (Sai, 2021: 96-7)

36Various processes were engaged to reach a compromise for all participants to agree on – for example, by including all of the different opinions rather than leaving some out, listening to the arguments of the opposing sides, learning from each other, having dialogues to find a basis for agreement, and examining the expressions and language to be used.

37Here is another example of overcoming conflict and achieving cooperation. The third statement concerns reconciling the differences in thinking around inclusive education and special-needs education:

[Article 24 of the CRPD] “Education” was of greatest interest to all organizations when preparing the parallel report. They were divided between those who wanted to promote inclusive education such as DPI-Japan and those who wanted to enrich education for children with disabilities by separating them from the other students in order to promote special-needs education. […] When I suggested that the system should be changed to one where the general principle is that all students belong to a regular school in their local community but where students and their parents are allowed to choose a special-needs school if they wish, I was initially told that I should not use the term “general principle” because it would make special-needs schools the exception. As a result of further discussions, [in the end] we agreed that the general principle of the educational system should be attending regular schools in the local community, with special-needs schools and special-needs classes available based on the decisions of the students and their parents. […] We endeavored to find a compromise such that both organizations with opinions like those of DPI-Japan and organizations with differing opinions could agree on the viewpoints expressed in the parallel report, and we made a significant effort to create a parallel report where all participants’ voices were represented. […] I think it was very good that we were able to come to a common understanding that there is something wrong with the fact that the number of children is decreasing while enrollment in special-needs schools and classes is increasing. (Sai, 2021: 97)

38Here too, discussions to reconcile differences of opinion on inclusive education led to a compromise being found that all could agree on. At the same time, it can be said that the shared awareness of the current situation reached through the discussions formed a basis for future cooperation. A shared understanding emerged among DPOs regarding the key issues in Japanese disability policy, specifically deinstitutionalization and inclusive education. The fact that parallel reports were established through cooperation has important implications for future disability policy and the participation of DPOs.

5. Conclusion and remaining issues: Possibility of cooperation beyond the conflict

39In concluding this paper, I would like to return to the fundamental problem of dependence on residential institutions and families in Japanese policies for persons with disabilities and to consider the potential solutions and strategies for cooperation with persons with disabilities, concerned parties, and especially their parents/families.

40After the conflict of the 1970s between family groups and DPOs with regard to facility construction, as well as the deinstitutionalization and community transition that took place in the 2010s after the tragedy of Tsukui Yamayuri-en, deinstitutionalization became a key issue in the process of drawing up parallel reports. During the preparation of the JDF’s parallel report, conflicting views of organizations on deinstitutionalization eventually converged through a series of constructive dialogue efforts toward a common position that supported a transition to community living. It can be said that a new starting point for changing the Japanese welfare policy system for persons with disabilities has been established, overcoming the conflict between parents/families of persons with disabilities and DPOs over whether to continue residential facilities or deinstitutionalize their residents.

41The parallel report submitted by the JDF to the UN Committee in March 2021 outlines ways to change the situation as follows:

[The State Party should] Revise the mechanisms under the current health and welfare services for persons with disabilities that limit the use of services based on the type and degree of disability and the existence of family members and housemates. Shift to mechanisms based on the social model/human rights model, which respect the needs of persons with disabilities and determine the provision and amount of services according to their needs in daily and social life. (Japan Disability Forum, 2021: 30)

42The long history of placing the primary responsibility for supporting the lives of people with disabilities on their families has created a vicious cycle in which people with disabilities are unable to exercise their right to choose where and with whom they live; and when their families are unable to care for them, institutions and hospitals become their primary options, hindering their transition from residential facilities and homes to the community. The shift to a welfare services mechanism based on a social and human rights model for people with disabilities will also end the situation that has long forced parents/families of people with disabilities into the position of “informal and unpaid caregivers without rights” in order to compensate for the lack of services.

43It is important for DPOs and parent/family organizations to cooperate with regard to the transformation of Japanese policies for persons with disabilities into a system based on a social model / human rights model, as this will lead to the liberation of not only the persons with disabilities themselves, but also their families who have been positioned as “caregivers” and “advocates” not for themselves but for their family member with a disability. The movement to promote deinstitutionalization and community transition for people with disabilities may require a proactive strategy for positioning and coordinating with the families of people with disabilities. It will be necessary in the future to take the viewpoint that the families of people with disabilities are also ordinary citizens with their own needs, in order to promote the emancipation of family caregivers and, ultimately, deinstitutionalization (Takahashi, 2022).

  • 4 In my presentation at the EHESS Seminar “French-Japanese perspectives on disability: Welfare polici (...)

44While there is still no international consensus on recognizing family members who provide daily care as rights holders with distinct needs, several countries have established legal frameworks and social services to support family caregivers. Some examples are the right to family leave, the right to secure re-employment opportunities, respite care service, and a caregiver allowance paid as wages to family members who provide care for the disabled person.4 The idea of guaranteeing rights for family caregivers and compensating them for their labor allows them to be viewed as ordinary citizens with their own needs rather than “informal unpaid caregivers without rights.”

45Along with the movement to promote deinstitutionalization and to transition people with disabilities to the community, family members of persons with disabilities came to have a “hidden existence” in the 1990s (Tsuchiya, 2002). In the future, what kind of existence will they be considered to have? Is it possible to consider a move towards incorporating a guarantee of family caregivers’ rights and the legitimate recognition of informal family caregiving labor into disability policy within the movement of people with disabilities in Japan? This is another issue to be addressed in future research.

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Bibliographie

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Notes

1 This section is a significant modification of Takahashi (2022: 24-7).

2 These reports were also produced in “easy-to-understand versions” with ruby characters or easy expressions for people with intellectual disabilities and others, which also indicates progress in providing and sharing information with parties having various disabilities.

3 The JDF consists of the following organizations: Japanese Federation of Organizations of Disabled Persons, Japan Federation of the Visually Impaired, Japanese Federation of the Deaf, Japan Council on Disability, Japan National Assembly of Disabled Peoples’ International, Inclusion Japan, Spinal Injuries Japan, National Federation of Associations of Families with Mental Illness in Japan, All Japan Association of Hard of Hearing and Late-deafened People, Japan Deafblind Association, Japan National Council of Social Welfare, Japanese Society for Rehabilitation of Persons with Disabilities, Japan National Group of Mentally Disabled People.

4 In my presentation at the EHESS Seminar “French-Japanese perspectives on disability: Welfare policies and social participation in the age of technology” held on March 10, 11 and 12, 2022, I discussed the French law for the equality of rights and opportunities, participation and citizenship of people with disabilities [La loi pour l’égalité des droits et des chances, la participation et la citoyenneté des personnes handicapées]. This law, which was passed in 2005, explicitly provides for caregiver [aidants, aidants naturels, aidants familiaux] support such as respite care, the right to family leave, and the right to secure re-employment opportunities. In addition, the newly established caregiver allowance is paid (in legal terms) by the disabled person himself/herself as wages to family members who provide care for the disabled person. In this case, the disabled person is legally considered an employer (Mitomi 2016: 172).

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TAKAHASHI Ryoko, « Conflict and cooperation »Alter, 19-1 | 2025, 45-58.

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TAKAHASHI Ryoko, « Conflict and cooperation »Alter [En ligne], 19-1 | 2025, mis en ligne le 19 mars 2025, consulté le 15 juin 2025. URL : http://journals.openedition.org/alterjdr/9021 ; DOI : https://doi.org/10.4000/13izz

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TAKAHASHI Ryoko

School of Regional Development Studies, Kanazawa University
takahasi[at]staff.kanazawa-u.ac.jp

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