Establishing a UK-Japan inclusive research network in intellectual disability: Co-producing a roadmap for belonging
Lead Research Organisation:
The Open University
Department Name: Faculty of Wellbg, Educ & Lang Sci(WELS)
Abstract
What does it mean to belong in one's community? And what does it take to feel 'at home' where you live? These are essential questions for everyone, but they are particularly pertinent for people with intellectual disabilities, many of whom experience entrenched exclusion from mainstream society, despite policy commitments to promote inclusion and independence at international, national and local levels. Research in both the UK and Japan has demonstrated that despite government efforts to close large institutions and promote community living for people with intellectual disabilities, the effects of such social policy initiatives have been weak in relation to people with intellectual disabilities' health, wellbeing, education, and employment. Opportunities for people with intellectual disabilities to participate in society and cultural life are limited, with research indicating high levels of loneliness, isolation, prejudice and abuse in both the UK and Japan.
This proposal is concerned with developing a UK-Japan inclusive and interdisciplinary research network that addresses the issue of belonging for people with intellectual disabilities. Its focus will be to identify a community of academics, people with intellectual disabilities, family members, practitioners and policy-makers who are interested in the issue of belonging. Tied to this, the project will have an explicit focus on the role of family and self-advocacy in relation to belonging, and will explore how future collaborations in this field can be supported by high quality inclusive research.
The project will host two 5-day inclusive research exchanges. This will enable an inclusive team of academics, people with intellectual disabilities and family advocates from Japan to visit the UK, and vice versa. During each of the research exchanges, a number of activities will take place. These include:
1) the convening of a 2-day inclusive workshop for up to 30 people on the topic of belonging using creative and innovative methods to enable a wide range of people with intellectual disabilities and their supporters to participate;
2) a seminar exploring what is required to develop skills and capacity in advocacy, with a specific focus on how family and self-advocates can work together more effectively for change;
3) a seminar focused on inclusive research practice and developing more effective systems for sharing knowledge (methods and findings) related to inclusive research projects; and
4) meetings focused on areas of future research collaborations and bid development.
Throughout the duration of the project the academic research team will hold regular virtual meetings to plan the research exchanges and undertake follow up actions.
We anticipate that the innovative and highly inclusive nature of these research exchanges will forge international connections in the field of intellectual disability, belonging and advocacy that have the potential to enhance theoretical understandings of belonging that can have a genuine impact on policy and practice; develop capacity for family and self-advocacy through mutual knowledge exchange and support; and create new mechanisms to share knowledge and practice of inclusive research with intellectually disabled people.
Specific outputs from the project will include: two academic papers (one written in English and one in Japanese) on the topics of belonging and advocacy; two conference presentations about the network in both the UK and Japan; a report that outlines a 'roadmap for belonging' (with accessible versions in English and Japanese); information and resources about the network made available on the Open University's free and publicly available OpenLearn platform; and bid development work with the aim of submitting a high-quality application to a potential future bilateral UK-Japan SSH research call.
This proposal is concerned with developing a UK-Japan inclusive and interdisciplinary research network that addresses the issue of belonging for people with intellectual disabilities. Its focus will be to identify a community of academics, people with intellectual disabilities, family members, practitioners and policy-makers who are interested in the issue of belonging. Tied to this, the project will have an explicit focus on the role of family and self-advocacy in relation to belonging, and will explore how future collaborations in this field can be supported by high quality inclusive research.
The project will host two 5-day inclusive research exchanges. This will enable an inclusive team of academics, people with intellectual disabilities and family advocates from Japan to visit the UK, and vice versa. During each of the research exchanges, a number of activities will take place. These include:
1) the convening of a 2-day inclusive workshop for up to 30 people on the topic of belonging using creative and innovative methods to enable a wide range of people with intellectual disabilities and their supporters to participate;
2) a seminar exploring what is required to develop skills and capacity in advocacy, with a specific focus on how family and self-advocates can work together more effectively for change;
3) a seminar focused on inclusive research practice and developing more effective systems for sharing knowledge (methods and findings) related to inclusive research projects; and
4) meetings focused on areas of future research collaborations and bid development.
Throughout the duration of the project the academic research team will hold regular virtual meetings to plan the research exchanges and undertake follow up actions.
We anticipate that the innovative and highly inclusive nature of these research exchanges will forge international connections in the field of intellectual disability, belonging and advocacy that have the potential to enhance theoretical understandings of belonging that can have a genuine impact on policy and practice; develop capacity for family and self-advocacy through mutual knowledge exchange and support; and create new mechanisms to share knowledge and practice of inclusive research with intellectually disabled people.
Specific outputs from the project will include: two academic papers (one written in English and one in Japanese) on the topics of belonging and advocacy; two conference presentations about the network in both the UK and Japan; a report that outlines a 'roadmap for belonging' (with accessible versions in English and Japanese); information and resources about the network made available on the Open University's free and publicly available OpenLearn platform; and bid development work with the aim of submitting a high-quality application to a potential future bilateral UK-Japan SSH research call.
Planned Impact
The impactful nature of this project is built into its design, with inclusivity and co-production embedded from the outset. In both Japan and the UK we have discussed the planning of this project with family and self-advocates, which has enabled us to begin identifying potential contributors to the two inclusive teams that will participate in the research exchanges. We envisage that there will at least three non-academic constituencies who will benefit from the activities. These are: people with intellectual disabilities (including self-advocates, but also people not yet involved in self-advocacy groups); family advocates; and service providers/practitioners. The project also has the potential to have impact in policy circles, although the benefits in policy terms are likely to take longer to be realized (see the pathways to impact document for more information).
People with intellectual disabilities and family advocates who participate in the project are likely to experience immediate benefits in a number of ways. The members of the 'core team' who participate in the research exchanges will benefit from developing new connections, skills and knowledge related to direct involvement in an international inclusive research project. For self and family advocates involved in the research exchanges, the project provides a unique opportunity for in-depth discussions about belonging, as well as the specific factors that shape the growth and sustainability of different forms of advocacy. Experience and expertise will be shared within a mutually supportive team. We anticipate that this process of knowledge exchange will contribute to increased confidence amongst self and family advocates, who will then disseminate the learning within their own contexts. In the UK, we anticipate this leading to more wide-ranging discussions about belonging and what is needed to facilitate this within (and beyond) education, health and social care services. In Japan, we anticipate that the research exchanges will help to drive further developments in self-advocacy. In both countries, we hope that the research exchanges will open up fruitful conversations about how self and family advocates can work together more effectively to help improve the lives of people with intellectual disabilities and to enhance their sense of belonging.
Beyond the core team, the project will also benefit a wider constituency of people with intellectual disabilities and their families by extending emerging discussions about what it means for people with intellectual disabilities to 'belong'. Until very recently there has been little explicit recognition of the importance of belonging to people's health and wellbeing. This project offers an opportunity to bring more people into the conversation about belonging (ie what it is, can, or should be) and to identify the stakeholders, resources, systems and processes that need to be in place to help more people experience a sense of belonging. Ultimately we anticipate this project being a key step in helping to extend the reach and significance of discussions about belonging for people with intellectual disabilities, by exploring and developing its utility and relevance as a framework for policy and practice.
Finally, we anticipate that the project might also benefit those engaged in developing policies and providing services for people with intellectual disabilities. Policy developments in the field of intellectual disability (both the UK and Japan) have been driven by a focus on independence, autonomy, person-centredness and social inclusion over the past 20 years. But as the literature shows, these policy objectives have had a limited impact on people's lives. The project affords an opportunity to explore (inclusively) the potential of belonging as a future policy focus in the UK and Japan and to identify mechanisms that might serve to support its realization in practice.
People with intellectual disabilities and family advocates who participate in the project are likely to experience immediate benefits in a number of ways. The members of the 'core team' who participate in the research exchanges will benefit from developing new connections, skills and knowledge related to direct involvement in an international inclusive research project. For self and family advocates involved in the research exchanges, the project provides a unique opportunity for in-depth discussions about belonging, as well as the specific factors that shape the growth and sustainability of different forms of advocacy. Experience and expertise will be shared within a mutually supportive team. We anticipate that this process of knowledge exchange will contribute to increased confidence amongst self and family advocates, who will then disseminate the learning within their own contexts. In the UK, we anticipate this leading to more wide-ranging discussions about belonging and what is needed to facilitate this within (and beyond) education, health and social care services. In Japan, we anticipate that the research exchanges will help to drive further developments in self-advocacy. In both countries, we hope that the research exchanges will open up fruitful conversations about how self and family advocates can work together more effectively to help improve the lives of people with intellectual disabilities and to enhance their sense of belonging.
Beyond the core team, the project will also benefit a wider constituency of people with intellectual disabilities and their families by extending emerging discussions about what it means for people with intellectual disabilities to 'belong'. Until very recently there has been little explicit recognition of the importance of belonging to people's health and wellbeing. This project offers an opportunity to bring more people into the conversation about belonging (ie what it is, can, or should be) and to identify the stakeholders, resources, systems and processes that need to be in place to help more people experience a sense of belonging. Ultimately we anticipate this project being a key step in helping to extend the reach and significance of discussions about belonging for people with intellectual disabilities, by exploring and developing its utility and relevance as a framework for policy and practice.
Finally, we anticipate that the project might also benefit those engaged in developing policies and providing services for people with intellectual disabilities. Policy developments in the field of intellectual disability (both the UK and Japan) have been driven by a focus on independence, autonomy, person-centredness and social inclusion over the past 20 years. But as the literature shows, these policy objectives have had a limited impact on people's lives. The project affords an opportunity to explore (inclusively) the potential of belonging as a future policy focus in the UK and Japan and to identify mechanisms that might serve to support its realization in practice.
Organisations
Publications
Ledger S
(2021)
"Everyone has a story to tell": A review of life stories in learning disability research and practice
in British Journal of Learning Disabilities
Sunman J
(2020)
Our Friends Across the Pacific: Belonging in the UK and Japan
in Community Living
| Description | The outcomes of our inclusive network discussions can be grouped under three key areas: 1. Translating 'belonging' into Japanese was not easy. There is no direct translation. The closest word is 'Shozoku', which means being a member of a group. In Japan, it is important for people to feel part of a group (Shozoku). But this can sometimes bring negative feelings. Being part of a group might be limiting, or create social pressures. It can make someone feel that they cannot have a different type of life.In Japan and the UK, a key policy of the past two decades has been 'social inclusion'. In practice, social inclusion has often focused too much on getting people into work, and has ignored other parts of people's lives. We need to go back to the original vision for social inclusion. The idea of 'belonging' might help us do this. 2. We learned people with learning disabilities and carers in Japan do not have to fight so hard for their basic needs to be met. Welfare provision in Japan is better resourced than in the UK and it is easier for people to access help if they need it. More people with learning disabilities undertake paid work in Japan and this does not always affect their benefit entitlements. However, not all the work for people with learning disabilities in Japan is 'good' work, and sometimes it is poorly paid. 3. Self-advocacy has not been very successful in Japan. This is possibly because: • Western ideas about self-advocacy are often focused on the individual: 'speaking up for myself', 'exercising my rights', 'making my own decisions'. In Japan, it can be difficult for people to assert their own wants and needs. This is true for people with and without learning disabilities. • There may be less reason to fight the system because people's basic needs are met in Japan. Self-advocacy often grows when people are desperate for change. • We know that some people get involved in self-advocacy because it provides social connections and a 'reason to get up in morning'. Because more people with learning disabilities work in Japan, there may be less time (and motivation) to take part in self-advocacy activities. We also learned that the sharing of life stories was an enabler of understanding between cultures. |
| Exploitation Route | The outcomes of this research can be used to support international inclusive research in the field of learning disabilities. While ambitious in design, the project showed that inclusive international is possible with sufficient time, support and resourcing. Indeed, many of the outcomes of this project could only have come to fruition through its inclusive, participatory approach. We hope that the project inspires others to develop cross-country inclusive research for people with learning disabilities. Our project report gives ideas for how to develop and deliver such projects. We hope the research helps to develop capacity for more inclusive research in countries that do not have a history of conducting inclusive research. We are already beginning to see growth in Japan, with a number of inclusive projects having secured Japanese funding since the completion of this project. We also saw the power of inclusive research in action, and how it can help to build confidence and skills. Japanese colleagues commented that inclusive research could be a path to self-advocacy for some people. This may resonate in other international contexts. We hope that this project reinvigorates interest in the role of life stories in supporting inclusive research, improving health and social care practice, and promoting social change for people with learning disabilities. |
| Sectors | Education,Healthcare,Government, Democracy and Justice,Culture, Heritage, Museums and Collections,Other |
| URL | http://www.open.ac.uk/health-and-social-care/research/shld/sites/www.open.ac.uk.health-and-social-care.research.shld/files/files/UK%20Japan%20report%20on%20learning%20disability%20and%20belonging.pdf |
| Description | Since completion of our project, three core project partners in Japan have secured funding, linked to our original project. All have non-academic impacts in train: 1) Hiromi Moriguchi (Tenru University) secured funding in 2020 from The Suntory Foundation to create a series of 'manga' life stories of people with learning disabilities in Japan and the UK. This work is now complete and will be exhibited in Japan's Manga Museum in 2022. 2) Parent carer Azusa Omori secured funding from Japan's Ministry of Education, Culture, Sports, Science and Technology 2020 to create a film about the experiences of learning disabled people in Japan and the UK. This film will be used as a resource to improve understanding and awareness of disability in schools and colleges. 3) Chie Kasahara (Sophia University) received funding in 2021 from Japan's Ministry of Education, Culture, Sports, Science and Technology to conduct a 3 year inclusive research project to explore the participation of learning disabled people in the planning and assessment of welfare services. Additionally, in 2022 Liz Tilley and colleagues drew upon findings from this project to deliver a webinar on on Life Story Work, presented to the NIHR Health & Social Care Workforce Research Unit's Making Research Count series. This webinar led to an invitation from a Local Health and Social Care Workforce Development Lead for the Open University team to deliver a programme on life story training in their local area. |
| First Year Of Impact | 2021 |
| Sector | Communities and Social Services/Policy,Education,Culture, Heritage, Museums and Collections |
| Impact Types | Cultural,Societal,Policy & public services |
| Description | Life Story Work with People with Learning Disabilities |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Webinar to health and social care practitioners exploring how life story work can contribute to person-centred practice. |
| Year(s) Of Engagement Activity | 2022 |