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)

The realities of long‐term care call for a refurbished, concrete concept of autonomy that systematically attends to the history and development of persons and takes account of the experiences of daily living.

It will be seen how in place of the wealth and poverty of political economy come the rich human being and rich human need. The rich human being is simultaneously the human being in need of totality of human life-activities — the man in whom his own realization exists as an inner necessity, as need. Marx, Economic and Philosophical Manuscripts of 1844 Svetaketu abstained from food for fifteen days. Then he came to his father and said, `What shall I say?' (...) The father said: `Repeat the Rik, Yagus, and Saman verses.' He replied, `They do not occur to me, Sir.' The father said to him... `Go and eat! Then wilt thou understand me.' Then Svetaketu ate, and afterwards approached his father. And whatever his father asked him, he knew it all by heart.... After that, he understood what his father meant when he said: `Mind, my son, comes from food, breath from water, speech from fire.' He understood what he said, yea, he understood it. Chandogya-Upanishad, VI Prapathaka, 7 Kanda When you love a man you want him to live and when you hate him you want him to die. If, having wanted him to live, you then want him to die, this is a misguided judgment. `If you did not do so for the sake of riches, you must have done so for the sake of novelty.' Confucius, Analects, Book 12. 10. (shrink)

Developments in the provision of care and support services for disabled and older people across developed welfare states have led to the expansion of personalisation (sometimes called cash-for-care, direct payments, care payments, etc.) schemes, whereby cash is paid in substitute for care services and support. Although these schemes vary considerably in their scope and operation (sometimes paying carers directly, sometimes enabling disabled and older people to act as direct employers, sometimes mixing paid and unpaid care), they share the characteristics of (...) commodifying care and support services and will have a potentially profound impact on the relationship between individuals, families, communities and the welfare state. Although the schemes have been evaluated within their own national contexts, little work has been done so far to explore the theoretical implications of their development and extension, particularly from an ethics of care perspective. This paper intends to fill that theoretical gap by drawing on comparative evidence from several schemes across different national contexts to develop an analysis which draws on feminist theory and an ethics of care approach to examine (a) the gendered policy outcomes and impact of such schemes; (b) a feminist analysis of the governance implications of personalisation; (c) the implications for the gendered division of work, particularly between paid and unpaid care work and between different groups of paid and unpaid carers; (d) an ethics of care analysis of the impact of personalisation over the lifecourse of disabled and older people, and carers; and (e) a discussion of the relationship between commodification, empowerment, citizenship and choice drawing on the work of care ethicists. It will draw conclusions about the outcomes of a range of types of personalisation schemes and thus have implications for theory, policy and practice. (shrink)