Liz Tilley

The Conundrum of Training and Capacity Building for People with Learning Disabilities Doing Research.

Background This study explores the training involved when people with learning disabilities take their place in the community as researchers. This was a theme in a recent UK seminar series where a network of researchers explored pushing the boundaries of participatory research. Method Academics, researchers with learning disabilities, supporters and other inclusive researchers considered important themes arising from presentations about developments in participatory research. The paper emerges from critical reflection on these rich discussions. Results A seminar series is a form of research training and capacity building, albeit a dynamic, interactive and collegial one. More formal training in research skills for people with learning disabilities is being developed but raises questions regarding the best contribution people with learning disabilities can make to the research process. Conclusion There are various models of training for inclusive research, but these need to be reciprocal if they are not to undermine the inclusive goal.

Negotiating a third space for participatory research with people with learning disabilities: an examination of boundaries and spatial practices

The focus of this article is participatory research with and by people with learning disabilities. Drawing on discussions that took place across a series of seminars, we use the concepts of space and boundaries to examine the development of a shared new spatial practice through creative responses to a number of challenges. We examine the boundaries that exist between participatory and non-participatory research; the boundaries that exist between different stakeholders of participatory research; and the boundaries that exist between participatory research with people with learning disabilities and participatory research with other groups. With a particular focus on participatory data analysis and participatory research with people with high support needs, we identify a number of ways in boundaries are being crossed. We argue that the pushing of new boundaries opens up both new and messy spaces and that both are important for the development of participatory research methods.

Exploring the Ethical Underpinnings of Self-advocacy Support for Intellectually Disabled Adults

Self-advocacy organisations support people in a wide range of political activities, alongside providing key social networks. The emergence of formalised self-advocacy for intellectually disabled people marked an important cultural shift. These groups soon became associated with the pursuit of social change and the attainment of rights. The role of the self-advocacy support worker, working together with self-advocates, has been pivotal. However, studies have shown there has been concern over the relationship between self-advocates and those who advise or support them. Both parties are aware of the potential tensions of supporters teaching people skills to take control, to manage their workers, whilst, perhaps inadvertently, assuming a powerful position in the relationship. This interesting paradox hints at ethical complexities inherent in the role. A key challenge facing these support workers is how they can support their employers to run successful organisations, without ‘taking over’. Using material from both Chapman and Tilleys research of self-advocacy organisations in the UK, this article problematises some key ethical issues within the role.

The changing face of parent advocacy: a long view

This paper reviews the history of parent advocacy in the UK on behalf of and with people with learning disabilities since the mid-twentieth century and reflects on the role of the academy in illuminating and documenting its story. It argues that parent advocacy has flourished at times of change and challenge, and has seen a revival since austerity began to bite. In the twenty-first century parent advocacy has mutated into working with, rather than for people with learning disabilities, a development to be welcomed, given the cuts to services, and the impact of ‘welfare reform’. This once more united voice is manifested in the launch of Learning Disability England in June 2016.

Between speaking out in public and being person-centred: collaboratively designing an inclusive archive of learning disability history

Abstract The Living Archive of Learning Disability History is being developed by an inclusive team of researchers both with and without learning disabilities. We argue the archive is important in making publicly visible the lives of people with learning disabilities. Yet – drawing on thinking that came out of our collaborative workshops – we also identify alternative imperatives, that you might want to have control over how you share your personal memories and stories, with whom, when you share them and for how long. We show how we are responding to these different ideas in the design of the Living Archive in order to create pathways between two traditions that have emerged through self-advocacy: ‘speaking out in public’ and ‘being person-centred’. We outline our research on consent processes to ensure that our archive builds capacity for as many people as possible to consent while also offering a legally compliant ‘Best Interests’ process in line with the requirements of the Mental Capacity Act, England and Wales (2005). We argue that deploying and actively navigating between the different political logics of ‘speaking out in public’ and ‘being person-centred’ offers a way forward for ongoing debates concerning community engagement in archives, museums and heritage.