Towards equal and active citizenship: pushing the boundaries of participatory research with people with learning disabilities

People with learning disabilities have been traditionally marginalised and silenced, and their perspectives have long been ignored. Self-advocates have specifically called for greater involvement in research as one way to combat this long-term societal exclusion. Developing a more meaningful and inclusive research agenda is one way in which people with learning disabilities can become more equal and active citizens.
The focus of this seminar series is participatory research with people with learning disabilities. The proposed seminar series has two broad aims. Firstly, to critically examine the unacknowledged or underexplored tensions and challenges to what might be considered full or genuine participation by people with learning disabilities in research. The seminar series will therefore explore and critique the arguments relating to:

1) Whether and how people with learning disabilities can participate in data analysis.
2) What is possible in relation to developing innovatory participatory methods for involving people with high support needs in research.

The second aim of the proposed seminar series is to seek to stimulate innovative developments in methods by synthesising the achievements in relation to participatory research methods with people with learning disabilities and acting as a catalyst for thinking and action in these two undeveloped areas of participatory research.

Linked to these two aims, our proposed seminar series has the following objectives:

1)To host an inclusive seminar series in which people with learning disabilities, their support workers, PhD students, early career researchers and experienced researchers and co-researchers all have opportunities to present and contribute to discussions and other related activities;
2)To host an accessible and interactive seminar series in which a range of methods for engaging seminar participants are adopted in order to enable all participants to critically engage in the debates;
3)To host an interdisciplinary seminar series in which researchers from a range of disciplines (e.g. psychology, sociology, social work, education, disability studies and computer science) contribute to the debates;
4)To promote knowledge transfer from previous ESRC funded projects that have explored and examined inclusive and participatory research with people with learning disabilities and in doing so advance our theorisation of inclusion, participation and co-production;
5)To critically evaluate the potential for cross-fertilization of methods and knowledge in the fields of participatory research with people with learning disability, children and young people and older people.

Participatory research emphasises that people with learning disabilities are not passive subjects of research and have knowledge and expertise that can contribute to high quality research. Participatory research therefore emphasises partnerships, the sharing of power and transformation of the lives of participants. These ideas are particularly relevant to current policy initiatives regarding "putting people first" in the transformation of public service delivery. For example, in adult social care contexts the term "co-production" is frequently used to frame policy and practice, where the emphasis is on active input by service users into the improvement of services through collaborative relationships with staff who are confident and able to share power and accept user expertise. There are concerns and debates however regarding the potential of co-production to genuinely transform public service development. Two such concerns centre on different interpretations regarding who is enabled to co-produce and at what stage in service transformation, co-production takes place (planning, design, commissioning, management, monitoring or evaluation). These debates will be informed by the seminar series through its focus on people with high support needs and data analysis (e.g monitoring and evaluation).

The most direct beneficiaries of this research during its life course are those who participate in it, which will include:

- people with learning disabilities who do research
- people with learning disabilities who are involved as self-advocates, sponsors, reviewers, commissioners and users of research
- people who support people with learning disabilities to be actively engaged in research and advocacy work.

Also closely linked in time and space are those people with learning disabilities who participate in research about them and their lives conducted by seminar participants during the process and soon afterwards. Our intention is that such participants will enjoy greater and more meaningful involvement in that research because of the growing capacity (particularly methodological and conceptual confidence and competence) gained through engagement with the speakers and involvement in the workshops. Moreover, participants with profound and multiple impairments and high support needs, who would have been excluded previously as 'too hard to reach' and engage, will begin to be involved in participatory research at some level.

In the longer term, the seminar series outcomes will stimulate further debate, research and capacity building and broaden this kind of impact to greater numbers. Moreover, developments in the field should reach policy makers and funders of research whose horizons may be expanded by greater understanding of the potential for research to be inclusive and the potential for involvement in research to meet other social and civic engagement goals.

The final seminar dedicated to knowledge transfer with participatory researchers working in other domains, such as with children and young people, or with older people, is intended to enrich the impact further. This will enhance the civic engagement in research not just of the target group of people with learning disabilities, but of other groups with whom participatory research is gaining ground and valued as important for their social inclusion.

Also going beyond the immediacy of impact, a crucial factor is not just the direct benefits for those connected with participatory research, but the indirect benefits for others because of the findings from such research. This is likely to include research in the crucial fields of education, health and social care and to include people with learning disabilities, their families, and people providing support. The capacity of service providers to be inclusive of people with learning disabilities is likely to be enhanced by research that is rigorous and inclusive and that generates findings that have been shaped and influenced by the key stakeholders at the heart of it. Thus the impact of these seminars will extend to touch people's quality of life and well-being as well as push the boundaries of public engagement with research and policy development.