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Nind and Seale (2010) multidimensional and universal model of access speaks to all categories.
The UN Convention on the Rights of the Child (UNCRC) formally acknowledged in international law that children are the subjects of rights, not merely beneficiaries of adult defense (Lansdown, 2001). Article 12 of the Convention acknowledges that learners who are able to articulate their points of view should be provided platform in which to do so. As consumers of services, more than goods (Sinclair, 2004) learners have a right to indicate their predilections and influence the type and value of what is issued to them. This indicates that the quality of service provided does not fully address learners’ needs. In an expression of commitment to increase children’s participation, the UNCRC Article 12 acknowledges children’s participation and views, ‘where possible’ to be considered in conjunction with age and understanding. The qualifying statement ‘where possible’ is subject to age, maturity and level of understanding, which are factors for “conditional participation”. Tisdall, Gadda &
Butler (2014) in being mindful of children and young people’s involvement and its
transformative possibility noted that “it’s not up to the child to prove his capacity, it should be presumed he has”. Why this is important is that professionals may decide for children. May (2004, p. 70) is of the view that this is “crucial to issues of access [because] if participation is conditional, the access to community will also be conditional”. This extends into addressing context of children with profound intellectual impairment where adults are consulted to interpret on the child’s behalf as a proxy. Access and inclusion are not just concepts for academics, politicians and practitioners. These concepts are understood by parents of CWDS and young people through phrases ‘nothing without us’ and ‘count us in’ in slogan or phrases in mission statements of many DSA nationally and internationally.
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important in the human rights/ social justice model and is acknowledged. However, with the focus of this study being my experiences intersected with parents and their experiences I dabbled into the general scholarly work related to autoethnography. Although some reading did not relate to access, schooling or DS, but most helpful in understanding autoethnography (Keefer, 2010; Starr, 2010; Ellis & Bochner, 2000; Wall, 2006; Chang, 2008;Butler, 2009) It is Ellis and Bochner (2000), who explain three central aspects of autoethnography: the
“research process - ‘graphy’, culture - ‘ethnos’ and the self - ‘auto’” and Reed-Danahay (1997) who indicates that writers of autoethnography may vary their emphasis on these aspects. This method of inquiry, as Ellis and Bochner (2000) continue to explicate, is “usually written in first-person voice, and autoethnographic texts appear in many forms – short stories, poetry, fiction, novels, photographic essays, personal essays, journals” (p. 739).
Autoethnography is becoming the research method of choice for those extending what
constitutes the qualitative borders through concentrating on a singular focus “in the life of the researcher, as the central aspect of study” (Keefer, 2010, p. 207) emphasising the personal and intimate (Butler, 2009) and chronicling self as a way to understand self and others (Chang, 2008). To understand the intricacies of this further, Starr (2010) helped me with comparative characteristics when she outlined with its qualitative method bias, autoethnography is
embedded “where the individual’s study of one’s self within a culture replaces the researcher- as-observer stance present in more traditional ethnographic forms” (p. 4). I was persuaded that this method would allow me to incorporate my views, thoughts, and story as a valid part of the study (Denzin, 1989; Reed-Danahay, 1997). My intention in this study resonates with Sarah Wall (2006) that, “the intent of autoethnography is to acknowledge the inextricable link between the personal and the cultural and to make room for the nontraditional forms of inquiry and expression” (p. 146)
My initial hesitation was to express personal stories, feelings and emotions knowing that I am potentially exposing myself up to criticism with the reflexivity, inward made outward, the private made public. Reassurance to persevere came from Ellis and Bochner (2000) who express that “vulnerability can be scary, but it also can be the source of growth and understanding” (p. 752).
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I am aware that this in itself may be limiting yet also believe that as the individual undergoing the experiences with Tiara, I am in a favourable position to describe my personal encounters and experiences more intimately and accurately than anyone else. In a comment about the value of inner knowing Duncan (2004, p. 4) affirms the subjective view presented in
autoethnographic research. This sentiment is supported by Kleinknecht (2007) who states that
“the auto-ethnographer’s intimate knowledge of the cultural and social setting in which he/she is situated can help the audience to ‘understand human group life through the lens of one individual’s experience” (p. 243). It offers me an opportunity to present detailed or “thick description” of life experiences within the context of accessing schooling spaces for my child with DS and liberate the experience which was until now, cloistered (McNeil & Chapman, 2005). ‘Thick description’ as described by Ponterotto (2006) is presented in this study. I will strive to capture the emotions, thoughts, senses, context and motivations that will lend believability to its occurrence as the reader is able to cognitively and emotively ‘place’
themselves within that context.
The discussion that follows, point towards the researchers who offered me inroads towards improved understanding of my research focus.
I found Holt (2001) fascinating from the perspective of using a reflective logbook as his primary data for his course. He incorporated his individual philosophy with previous experience to negotiate the contextual expectations that he had of the university and the university, of him. Duncan (2004) offered insightful ideas on methodological rigour and offered me reassurance through guidelines in answering some of the problematic aspects I was encountering and of times when I found myself having inner dialogues as I reflected on
aspects I was contemplating, including or omitting. Duncan emphasized rigour in the research process. I came across Couser (2005) who provides an analysis of a one first person narrative expressing capability of self-representation “Count Us In: Growing Up with Down
syndrome”, “a collaborative narrative by two young men with the syndrome in question. Not only is the title cast in the imperative mood—”count us in”— the subtitle puns on “up” and
“down” in a way that challenges conventional ideas about mental retardation, such as that those with it never really mature” (p. 107)
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In trying for a closer synchrony of my experiences on access, schooling and Down syndrome collectively, from an autoethnographic perspective, I located John Quicke (2008). In
Inclusion and Psychological Intervention in Schools: A Critical Autoethnography, he describes schools as “complex, social, cultural context” (p.V) where inclusive thinking is a struggle. Through various narratives he excavates inclusion using critical autoethnography. In summation he suggests that understanding what barriers to inclusive access exist, the reason for their presence and then work to remove them will contribute towards creating an inclusive environment. I found his work engaging and found his passion for inclusion so endearing and believable. Hanekom (2012), undertook an autoethnographic study to reflect on the physical and emotional journey two parents experienced in finding a suitable schooling context for their child who was medically diagnosed with “Pervasive Developmental Delay – Not Otherwise Specified (PDD-NOS), an Autism Spectrum Disorder”. She employed co-
constructed narratives and followed a chronological sequence of events though the discussion was more thematic. It was easy to identify with her struggles and the poetic yet realistic manner in which she expresses her experiences. Her use of metaphors tapped into my appreciation for the English language. The idea of co-constructed narratives reinforced and extended from the personal into the broader social context. Murray’s (2000) autoethnographic account connected on a personal level with me as I read of her transparency in sharing with the reader her vulnerabilities as she writes of her son and the secrets of mothering. Her son has DS, and on this maternal level, I found kinship.
These examples go beyond telling stories. They provide academic accounts with defensible interpretations. The work “does not consist solely of the researcher’s opinions but are also supported by other data that can confirm or triangulate those opinions” (Wall, 2008, p. 5).Beyond these limited examples, I struggled to locate an autoethnographic study on access to schooling specifically for a child with DS. This very gap allows for my study to be inserted as a contribution to the body of knowledge. I return to elaborate on autoethnography as my preferred methodological choice, in Chapter four.
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