Playing with Words: People with learning disabilities and their personal assistants
Sandra Dowling, Val Williams, Joe Webb, Marina Gall.
Ten years ago, a project called ‘Skills for Support’ showed that support staff, despite their best efforts, face tensions between the protection of disabled people and the empowerment of their decisions. Over the intervening ten years, new legislation about decision making has been implemented with the 2005 Mental Capacity Act in England and Wales, the second principle of which requires support staff and PAs to take ‘all practicable steps’ to support decisions. Existing policy and law therefore combine to foreground choice and control, and support for the active agency of all disabled people, including those with learning disabilities. However, there are still tensions, and since 2011, a whole raft of difficult, sometimes abusive and neglectful practices by statutory services has come to light. These issues are not just about statutory services. In 2017 the death was reported of a young man whose bowel condition was exacerbated by his own choices and preferences, which were respected unduly by his support workers in his ‘supported living’ accommodation. It is thus even more urgent to understand better how PAs can provide support which allows people with learning disabilities to become decision makers, and to develop a sense of control over their lives. At the same time, it is urgent that we understand better how to ensure people are safe and that their basic needs are met.
This part of our research aimed to record naturally occurring interactions between people with learning disabilities and their personal assistants or support workers. We used a Conversation Analysis (CA) approach in order to explore intervention and change in this type of talk, with the following research questions:
a) How can everyday decision making be facilitated in people with learning disabilities?
b) Can workers learn how to improve their practices through video interaction analysis?
Our goal was not just to replicate previous research, but also to investigate how far this type of detailed Conversation Analysis (CA) could be effective in understanding social practices and change.
We collected 9 hours, 6 minutes of video involving nine people with learning disabilities interacting with eight PAs or supporters, in a range of everyday situations such as people’s own homes, going to the shop, visiting a park, engaging in leisure or domestic chores. Some of our data also took place in a workplace pottery project, where people with learning disabilities were supported by two members of staff in creative activities to produce high-quality pottery for sale. Unlike conventional CA, we also recorded initial interviews and took data back to participants in their dyads to discuss our findings and their learning. These interviews helped us to see more precisely what could be changed.
Finally, we were very privileged in this part of our project to work with the Misfits Theatre Company, a local group of actors with learning disabilities. By viewing excerpts from the video data, they were able to bring their own insights to bear, based on their experience of having support in their lives. They used creative methods to re-imagine the scenes on the videos, and developed and filmed their own drama based on the data.
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