When Vic Finkelstein, the veteran disability rights activist, was imprisoned under the apartheid regime in South Africa, he recalls that, having insisted on the right to exercise, twice each day a black prisoner was detailed to push him “… round and round the courtyard (after I had been to the toilet)”. He remarks wryly that this was “[the] only time I have ever been given a free personal helper” (Finkelstein, 2002).

Forty years on, in another country, and under somewhat different conditions, direct payments legislation (the 1996 Community Care Direct Payments Act; the 2000 Carers and Disabled Children Act; the 2002 Community Care and Health (Scotland) Act) means that someone who has been assessed for community care can now be given a budget and choose how to spend the money allocated to them. If they want to pay for someone so that they can visit friends, go to a meeting, eat out at a restaurant, buy helpful equipment, spend time away from home or simply buy help with the basic tasks that use up all their energy, then the choice is theirs. As the website of the UK Department of Health (DH) explains: “Direct payments create more flexibility in the provision of social services. Giving money in place of social care services means people have greater choice and control over their lives, and are able to make their own decisions about how care is delivered”. (DH, 2004a).

For Vic Finkelstein and other disabled people, direct payments came into being as the result of decades of campaigning against a society which turns disabled people into dependants without choice, control or independence in their lives. Their organisations, the Union of Physically Impaired Against Segregation, the Disability Alliance and the British Council of Disabled People (BCODP), have been at the head of an international movement that sought and still seeks to establish a citizenship-based, human rights-defined case against disabled people’s exclusion from society (Campbell and Oliver, 1996). With the establishment by Act of Parliament in 2000 of the UK Disability Rights Commission came the incorporation in policy terms of independence and participation as rights:

The views and experiences of people using direct payments and the people they employ to provide their support are of immense importance, and this book would not be complete without them. Chapter Nine includes a number of contributions from direct payment users, and personal assistants who were asked to write about their personal experiences of direct payments. Their words bring direct payments to life: they are the voices of experience.

The use of biography and autobiography today, compared with only 20 years ago in the UK, is now ubiquitous in work with vulnerable people in care settings. Biographical materials exist implicitly and explicitly in a variety of forms, from documents (such as case notes, patient histories, and care plans) to more journalistic public accounts in the media following instances of abuse or fatal accident, as well as in service users’ own accounts often presented in the form of life storybooks, or audiovisual recordings. The use of autobiography and biography has also become a common research tool in health and social care settings in the form of life stories and histories, oral history, narrative studies, and biographical interpretive methods. Collectively, these have come to be known as ‘biographical methods’ (Bornat, 1994; Walmsley, 1995; Chamberlayne et al, 2000, Bornat, 2001; Bornat, 2002; Coleman, 2002; Webster and Haight, 2002).

In tandem with this shift towards a more subjectively understood idea of care has been the claim by some authors, though not all, that such approaches empower participants, enabling them to take control of their own stories, to reverse roles with researchers, to claim ownership, to retain the right to interpret rather than allow the ‘academic gaze’ to take over, and even to bring about change in the direction of their lives (Bornat, 1989; Frisch, 1990; Booth and Booth, 1998; Hirsch, 1998; Thompson, 2000). Whether or not any of these empowering outcomes is measurable or achievable remains a focus for constant debate.

In this chapter, we make our own contribution, exploring ways of positioning biographical research and practice on a top-down/bottom-up matrix. In so doing, we arrive at a more questioning appraisal of claims for empowerment through biographical work. Questioning, but not necessarily being judgemental. It is not our intention to recommend or suggest that any one positioning on the matrix is more or less desirable than any other. In what follows, we offer a matrix as a form of self-evaluation and reflection on research processes. In doing so, we consider such issues as ownership, power in research relationships, presentation, structure and process.