MATRICULAS DE COMERCIO

‘Scientific research can never be wholly neutral, disinterested, or value-free

because the process of knowing always begins in concrete contexts and material conditions of people’s lives, together with the standpoints, perspectives or understandings of the knower’ (Henwood, 1993, p.5).

My approach to research was largely influenced by my background in disability studies. Coming from a social model of disability standpoint (Oliver, 1990), which focused on the societal barriers disabled people faced in a disabling society, I was aware that I had an epistemological preference that would shape my choices of research design and guide the research process. I needed to take data at face value as I chose to develop my findings from the ground up and this often proved difficult when having preconceived notions of social model

definitions of disability, which often did not always align with all those who were being interviewed. For example, some interviewee’s perspectives would view disability as an ‘individual problem’ which was a stance that challenged my own epistemological position.

I was committed to enabling participants to have power over the direction of the interviews and I encouraged participatory elements, in line with the principles of ‘Nothing about us, without us’ and the social model of disability (Oliver, 1990). This was a direct challenge to adopting a more positivist and scientific approach to research and other qualitative approaches to research which fail to

meaningfully include disabled people’s voices in the research process.

Therefore, it was important that the participants were considered as experts rather than ‘subjects’ of the research. A further consideration was the

importance of ‘doing no harm’, which has been a significant issue to disabled people traditionally deeming research as being unhelpful in meeting their needs (Oliver, 1992). Therefore, the research was focused on a topic that was of

‘practical relevance of her/his research to the lives of research participants’ (Stone and Priestley, 1996, p.703).

The appropriateness and ethicality of non-disabled researchers’ involvement in investigating the lives of disabled people has often been contested (Oliver, 1992; Branfield, 1998; Stone and Priestley, 1996; Hunt, 1981). Therefore, as initially viewing myself as a non-disabled researcher, I was conscious of this perspective from the offset. The following section considers this perspective and how it has developed over time.

Traditionally disability research has been largely perceived as unhelpful in the advancement of disabled people’s rights, as Oliver (1992) argues, research has often contributed to the exclusion and oppression of disabled people as opposed to addressing issues of inequality. Oliver (1992) states that:

‘As disabled people have increasingly analysed their segregation, inequality and poverty in terms of discrimination and oppression, research has been seen as part of the problem rather than part of the solution . . . Disabled people have come to see research as a violation of their experiences, as irrelevant to their needs and as failing to improve their material

circumstances and quality of life’ (Oliver, 1992, p.106).

Stone and Priestley (1996, p.701) reinforce this belief when stating that ‘decades of 'scientific' research have perpetuated the marginalization of disabled people’. This poses questions as to whether non-disabled researchers should be involved in the generation of knowledge about disablement. Branfield (1998) posed one of the most striking arguments in opposition to non-disabled people being involved in disability research. Branfield stated that:

‘The disability movement is our movement, where our voices and our actions determine the changes and redefinitions we want’ (Branfield, 1998, p.143).

However, Duckett (1998) argued that the binary between disabled people and non-disabled people is unhelpful when considering who should conduct

‘disability research’, stating that; ‘clear-cut and unproblematised distinctions between disabled and non-disabled people are too simplistic to take us far in our

understanding of the field’ (Duckett, 1998, p.626). This was my own experience as a researcher, with ambivalence about my own mental health condition that meant sometimes identifying as ‘disabled’ and at other times identifying as ‘non-disabled’ which is reflected on below.

In more recent years, new values and principles have been developed about doing disability research by moving away from positivist approaches and developing participatory and emancipatory methods. These methods involve disabled people throughout the research process and aim to counteract the power dynamics which often place disabled people as the research ‘subject’.

As discussed in chapter three, another significant aspect of my research

approach centred on the importance of lived experience. Boylorn (2008, p.490) states that lived experience includes:

‘[the] representation and understanding of a researcher or research subject’s human experiences, choices, and options and how those factors influence one’s perception of knowledge’.

This suggests that the world should be explored within the context of how it is lived and provides a useful way of ensuring people’s subjective experiences of welfare policy are at the forefront of this study (see chapter three).

The focus on lived experience can be perceived as at odds with the social model perspective as it challenges dualist notions and in essence, the social model is based on dualist notions of ‘disability’ and ‘impairment’. However, this notion is also one of the key criticisms of the social model’s theoretical understanding of disability. Shakespeare and Watson’s (2002) critique of the social model reflects this when arguing that there is an ‘unsustainable distinction’ between

‘impairment’ and ‘disability’ and suggest that an embodied ontology would offer the best solution to developing a more suitable theoretical understanding of disability. Within this study, it is important to note that aspects of both social model thinking and an awareness of the complexity of disabled peoples lived experiences are deemed as appropriate. They are utilised to understand how disabled people’s experiences are felt within the context of a disabling society.

As discussed in chapter three, Goffman (1968) identifies three types of identity and distinguishes between the ‘personal identity’, the ‘social identity’ and the ‘ego identity’, the latter which refers to how people feel about themselves. This is a useful tool for understanding how welfare reform has impacted on the

identities and identification of those in receipt of benefits. Therefore, the awareness that there are multiple layers of identity was also important to the methodological approach. Therefore, when carrying out the interviews I as exploring people’s naturally occurring descriptions of identity, from an awareness that there are multiple layers of identity.

This section has considered my approach to ‘doing disability research’ and explored some of the implications that arise from this. By understanding how research has traditionally been deemed as oppressive and inappropriate to the needs of disabled people, it provides an understanding of what not to do when researching alongside disabled people. By exploring the principles of doing good disability research, I was able to include disabled people’s voices in a

meaningful way and ensure that the research process itself was a positive one. It has also considered how the concepts of lived experience and identity are

utilised within this study and the tensions this raises when utilising a social model approach to disability. The following section describes the methods employed for data collection.