SUBJECTIVITY AND REFLEXIVITY

Doing ethnographic fieldwork requires a certain double perspective of the researcher’s subjective identification with, and her analytical objectification of the field (Hastrup 1991: 14). The researcher has to move from a position of proximity to a position of distance and vice versa. I was in the field almost every day doing participant observations or interviews, or both. As stated above I tape-recorded my observations and at night I wrote them down. During this fieldnote-writing-process a certain distance appeared, where there was room for more in-depth analytical reflections. So each day I had time to be in both positions; engaged in the field and reflecting upon my observations. Doing qualitative research made the impact of me as the researcher far more obvious than in its quantitative counterpart. Assuming that this kind of research is inherently structured by the subjectivity of the researcher required a dialogical perspective and reflexivity during the whole research process regarding this impact.

Questions appeared, such as whether it would be possible for me as an able-bodied researcher to carry out research with PWDs? Would my background as a nurse make any impacts? What about my age and my gender? Finally considerations concerning culture and language were obvious, including whether I as a white person could carry

22 out research with black people? I will now turn to a discussion of these aspects of my research.

2.4.1 Researching “others”

The notion of “otherness” is complex, and the recognition of some such “others” has been a major focus of critical concern in feminist, post-colonialist, critical anthropology, anti-racist, disability and other critical researches that may be broadly defined as anti-oppressive (Fawcett & Hearn 2004: 202). Indeed one then has to ask what is actually meant by “otherness” in relation to research. In some senses all those who are the subject of research are “others”, at least from the perspective of the researchers, in that they are different in relation to the speaking subject (ibid: 203).

However, one can also define “others” in a rather different way; as “others” in relation to the dominant social power relations and discursive constructions, such as PWDs, women, people of colour and others. Fawcett and Hearn refer to this as “societal otherness”. Looking at this “societal otherness” from the standpoint of disability, Henri Stiker has analysed a fundamental issue in contemporary Western discourse on disability; the cultural assumption that equality/sameness/similarity is ideal, an assumption that exposes society’s basic intolerance of diversity and individualism. The peculiarity represented by malformation or deformation provokes a kind of panic both internal and public. According to Stiker…”this panic is rooted in the fear of the different, for we desire similarity and, even more, we desire identicalness (Stiker 1999:

9). It is all about our desire to desire like others, to be and to have like others. This passion for similarity leads in full-blown or latent form to exploitation, repression and rejection (ibid: 11). This can be seen as determinant for the designation of “otherness”.

Within disability rights movements it has been argued that non-disabled researchers cannot research with authenticity and that they cannot share the emancipatory agenda of the social model⁷ of disability (Fawcett & Hearn 2004: 209). I believe that it can lead to marginalization if only those with direct experience of an area can research it.

The problems have to be noted with the argument that struggles against oppression produce voices that can speak “the truth” about disability in a united fashion and

7 The social model defines disability as mainly a socially created problem

23 formulate one standpoint only. More generally, a standpoint positioning, such as the one adopted within the social model of disability, has a potential to unintentionally create or reproduce the forms of “otherness” that they seek to counter. In my opinion research into disability carried out by a disabled researcher cannot on the basis of experience alone be seen to be more legitimate than research about disability carried out by a non-disabled researcher. It must be how the research project is conducted, how the participants are involved, how attention is paid to ethical issues and the extent of critical reflexivity, that have to be regarded as key factors.

2.4.2 Personal Background

According to Hans Georg Gadamer prejudices are incorporated, they are our pre-understanding. They are conditions of the possibility to achieve agreement through dialogue, a basis of understanding. We cannot release ourselves from our prejudices, but in the meeting with the incomprehensible our prejudices can be revealed (Hansen 2002: 28). I in fact met a foreign social world since I had never been in Africa before.

Mentally I had tried to prepare for this meeting; I knew I had to play the role of a novice learning new skills to be able to navigate in a new setting. Suddenly I was an

“other” in different situations. I knew that everybody, including informants would categorize me according to what Goffman calls my virtual social identity, meaning my appearance (including gender), my qualities and my occupation (Goffman 1990 [1963]:

12). I introduced myself as a nurse doing research in relation to a master degree. My intention was that the categorization as a (white) nurse would lead to some normative expectations regarding confidence, so that informants would feel comfortable in interaction situations. It is likely that my background as a nurse contributed to more intimate information regarding sexual problems related to disability, but it is also likely that simply being a “stranger”, who did not know the informants outside the space we were interacting in, made PWDs feel more comfortable. I could not tell their revelations to their family, friends or colleagues, I was not a threat. I was the

“stranger”, who according to Simmel could be “near”, because I was “distant”

(Gammeltoft 2003: 277). It is more complicated to assess my position as a white nurse in relation to my interaction with health workers. Here I may have been seen as a threat since it was easier for me to “judge” their practice and be aware of ethical issues

24 regarding their work. This may have influenced both the observed interactions with clients and interviews. That is why it was important to talk with both health workers and PWDs to confirm coherence and take notion of bias.

2.4.3 Aspects of Culture

Hardly any other term in the social sciences has acquired so many meanings and definitions as culture. Thus it is not meaningful to ask which definition of culture is the correct one. According to Spradley, though, ethnography always implies a theory of culture, because the essential core of ethnography is the concern with the meaning of actions and events to the people we seek to understand (Spradley 1979: 5). Spradley claims that in every society people make constant use of complex meaning systems to organize their behaviour, to understand themselves and others, and to make sense of the world in which they live. Therefore Spradley defines culture as….” the acquired knowledge that people use to interpret experience and generate social behaviour”

(ibid: 5). An important assumption implied by this definition of culture is that human experience and behaviour are largely products of symbolic meaning systems.

Spradley’s concept of culture has much in common with symbolic interactionism which also seeks to explain human behaviour in terms of meanings. Referring to Blumer, Spradley points out three premises on which symbolic interactionism rests:

• Human beings act toward things on the basis of the meanings that the things have for them.

• The meaning of such things is derived from, or arises out of, the social interaction that one has with one’s fellows.

• Meanings are handled in, and modified through, an interpretive process used by the person dealing with the things he or she encounters.

Spradley illustrates the third premise by comparing culture with a cognitive map; a map we make use of in relation to recurrent daily activities. The map is a guide for acting and interpreting, but it does not compel us to follow a particular course (ibid: 7).

Parallels can be drawn to the term pre-understanding discussed above, but the misconception of regarding culture as traditions and norms we are simply born into and

25 culture as determinating our way of thinking and acting, can make us to point to differences that hardly exists (Mogensen & Oberländer, forthcoming). Instead we should try to understand the complexity regarding culture. It does not make sense to talk about Ugandan culture as if it included a set of values shared by everyone. People are positioned in many different ways, some are disabled, some are religious, some are poor etc., “pure” cultures have never existed. What exists is a continuous process of people, who constantly negotiate, change and create their worlds (ibid: 8). This process is the issue in this study, but the complexity of culture is always seen from a certain perspective. Obliged to transparency, culture in this study is understood as social dynamic, without any specific definition, but with inspiration from the framework offered by symbolic interactionism.

2.4.4 The Role of Language

Doing field work requires inferences from three sources (1) from what people say; (2) from the way people act; (3) from the artefacts people use (Spradley 1979: 8).

However, a large part of culture consists of tacit knowledge. A way of grasping this tacit knowledge is by making interferences about what people know by listening carefully to what they say and by observing their behaviour and by studying artefacts and their use (ibid: 9). Much of any culture is encoded in linguistic form, thus language is the primary symbol system that encodes cultural meaning in every society, and language can be used to talk about all other encoded symbols. Does the credibility of data then depend on control of the local language? A survey on ethnographies found that anthropologists who speak the local language are statistically more likely to report witchcraft than those who do not. The interpretation was that local language fluency improves your rapport, and this, in turn, increases the probability that people will tell you about witchcraft (Bernard 1995: 145). I did not speak Luganda, but I was lucky that English was the official language in Uganda. All the health workers I talked to spoke English, but half of my interviews with PWDs required interpretation. Many PWDs do not attend school and learn English, so my limited use of interpretation might not reflect a general picture. This can be considered to be a bias giving a distorted view, since half of the PWDs in this study had attended school until secondary level, one was trained as a secondary schoolteacher and one had a bachelor degree. This does

26 not, however, influence the fact that PWDs do not make use of HIV/AIDS services, and somehow those speaking English had a tendency to reveal more about their experiences with discrimination. The latter might be due to the quality of interpretation.

Thus most of my informants and I were in the same situation, using English as our second language. So constructions of meanings were done from these positions and problems with semantics must be seen as a bias in this study although I tried to explore differences of significance.