In this chapter I describe my kin. This is a joint venture - we are related not by blood, but by the very fact that we share in a community of otherness. We are vicariously connected and do not always interact with each other on a regular basis. This is a community of shared experiences and practice; there is camaraderie between group members because of this. On
communities of practice Wenger, McDermott and Snyder(2002, p. 4) say that, ―Communities of Practice are groups of people who share a concern, a set of problems, or a passion about a topic, and to deepen their knowledge and expertise in this area by interacting on an ongoing basis.‖ Many of my participants know each other. It may be that we share similar impairments and are associated in the same support organisations and all of us share in the constructions of society‘s concept of disability. This area of kinship is advanced by other anthropological authors who say connectedness and kinship can be either familial or conceptual. Rapp & Ginsberg (2001, p. 535) have been noted as saying, ―We stress the cultural work performed by the circulation of kinship narratives through various public media, as an essential element in the refiguring of the body politic as envisaged by the advocates of both disability and reproductive rights‖.
Initially it was my intention to write ethnography, but I find I meet somewhere between a biomythography and communography. A
biomythography is something the medical anthropologist Kohrman (2003) describes as he pieces together a documentary on articles written by other members of the same community, sometimes retrospectively, of a person‘s life. ―Bio‖ alludes to the shortening of biography, which in some cultures
they abbreviate to bio and add data to create the word ―bio data‖, which is the same as a resume of one‘s life. Whereas the educational psychologist Sobrun-Maharaj (2002, p. 110) illustrates communography thus,
This label will describe research undertaken by a researcher who was a member of the community being described. As an insider, the researcher does not need to negotiate her position with the subjects and spend prolonged periods of time with them within an artificially created situation. As a member of the community, she has first hand knowledge of the perceptions of this group, which constitute their social 'reality'.
This later description could be a somewhat problematic assumption. There is an issue in that the researcher is more often than not in a power relationship over the research participants. The author‘s experience, was aa a teacher and an elder researching a community of students, although she happened to be ethnically similar to her research participants. Structurally it is still a top down study; she is doing it to those who are less powerful than her. The anthropologist Cohen (1995) has maintained this stance:
How do you know what the other person is thinking? How do you know that the other person is thinking? How can you discriminate between the other person's consciousnesses? The answer to the first and second questions, I cannot know for certain, leads inexorably to the answer to the third: I cannot. What we can do, what anthropologist's customarily have done, as recent work has shown us, is to use literary devices of one kind or another to convey in our authored texts the impression of such a discrimination. But it is one which we as authors have engineered.
(Cohen 1995, p. 3) What we can understand from this is that you cannot assume you are on the same ―wave length‖ of any individual. Even if we do have similar
Another critical friend of mine has reminded me I need to
define what my group is? Who are included and who are excluded? What makes them members? What do they have in common and how can I describe them as a group I can only allude to the fact the study identified what the participants sought, were disabled people and members of this research group have significant impairments and have been involved in the environment of tertiary education, for a longer period than other students. In other words there is an element of long length of time in both.
These vignettes or portraits of my participants are intended to set the scene, to show we are dealing with real people. Although their names have been changed and many are known to each other, it has been a logistical
nightmare to make sure each person‘s confidentiality is protected. Of course it is not possible to say your anonymity will not be identified by another member of the group, as there is a good chance their peers have a more intimate relationship than I and may be able to piece together their life experiences or match impairments with individuals. I needed to be a bit matter-of-fact and sort-of picked several areas to explain descriptions of these individuals like their impairment, how they live, a little historical background, my interaction with the participants, something on what they did at university and an attribute I think they have. Impairment is a
problematic term; I was troubled, in that one might associate the study as aligned with the medical model. But the social model of disability has some roots in scientific study. Feminist Crow (1996, p. 225) says in her Notes 1 that, ―Along with many disabled people I feel some discomfort at the word impairment because it has become so imbued with offensive interpretation. Perhaps we need to replace impairment with an alternative term‖. When trying to find the social model of impairment Hughes (1999, p. 328) cites
the UPIAS when it comes to the distinction between disability and impairment by stating,
Impairment: Lacking part of all of a limb, or having a defective limb, organism or mechanism of the body; Disability: The disadvantage or restriction of activity caused by a contemporary social organisation which takes no or little account of people who have physical impairments and thus excludes them from the mainstream of social activities.
This points to a much medicalised definition. Brunt & Chronis (2005) present a really powerful and inspiring book on the positive aspects on the lives of New Zealanders with disability without dwelling on aspects of their
medicalisation; the text is peppered with pictorials and a picture paints a thousand words. This strongly acknowledges that disabled people do attain high levels of efficacy and self worth.
Being an insider researcher has advantages, I wanted to tell the stories of the participants much the way they may want them related. Within insider research (personal accounts) and auto-ethnography identification with my peers, showed I was really just one of them. This lead to my writing an auto-ethnography. O'Reilly (2009, p. 171) elucidates by showing , ―Auto- ethnographers challenge the absent authorial voice of much realist
ethnography by front-staging their own character and experiences‖. She further extends this theme by saying that in contemporary ethnography is legitimised O'Reilly (2009, p. 189) says, ―That is, an awareness
ethnographies are constructed by human beings who make choices about what to research, interpret what they see and hear, decide what to write and how, and they do this all in the context of their own personal biographies and often ensconced in scientific and disciplinary environments‖.
Being an insider researcher has advantages, I wanted to tell the stories of the participants much the way they may want them related.
Somehow there appears to be a tenacious spirit in all members of the group. There is all too much negativity out there portrayed about people with
disability. Of course the word ―disability‖ in itself negates the ability of individuals. I wanted to draw this study out of the colonialist interpretation of other. I sent these stories back to my participants and waited. For my Masters research I had transcribed interactions between myself and participants saying to them, of course these are confidential, but in two cases ―loved ones‖ telephoned me flabbergasted they had been portrayed in that way. In the end no other person had access to my data and it really wasn‘t an issue for the transcriptions to be verbatim. Only the quotes I used needed to be accurate, the idea was for me to use the transcriptions only as raw data. I sent the vignettes back to my joint participants, not so much that I wanted them to massage and manage my perceptions of them, but out of respect. To make them feel included in this emancipatory and
collaborative research process. In my introductory letter to the participants I mentioned that in return for their consent I would keep informing them.