Joan Tronto defines care by three activities: maintaining, continuing, and repairing. These activities give care a maintenance quality, which is problematic given that caring often takes place within contexts of inequality and domination. Empirical research with paid support staff and people with intellectual and developmental disabilities (IDD) illustrate these problems: care practices tend to reinforce the social exclusion of people with IDD, particularly for people with challenging behavior. Yet, support workers’ care practices can facilitate a better quality of life for (...) people with IDD. This improved style of support maps onto Tronto’s fifth phase of care, caring with, which hinges practices of care on democratic principles of justice, equality, and freedom. As such, democratic care requires activities that Tronto excludes from care, including creativity, disruption, and pleasure. I use empirical research from the field of IDD to show how support workers and people with IDD practice creative, disruptive, and playful care to challenge persistent forms of exclusion, inequality, and stigma. (shrink)

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 Tilley's research of self-advocacy organisations in the UK, this article problematises some key ethical issues within the role. (shrink)