I started reading on ethnography and Down syndrome and was struck by the work of Kliewer (1998). This ethnographic study examined school literacy experiences of ten young learners with Down syndrome over two years. Menear (2007) conducted a study on individuals with Down syndrome in the UK, focussing on parents’ insights, of levels of fitness and quality of health of their CWDS. It was identified that “fitness levels and obesity in individuals with Down syndrome may be related to sedentary lifestyles, social and recreational opportunities, or low motivation to be physically active” (p. 67). Another ethnographic qualitative study on the college experience of an individual with Down syndrome was conducted at a Jesuit University in the Midwest in USA, by Hamill (2003). The finding was that irrespective of the cognitive disabilities of a person with DS, his or her qualification academically for entrance into a university is secondary to the experience and opportunity provided for the person to have a college experience. This study addressed related issues of access from a higher
education standpoint. It delighted me to see an oasis of opportunity available to young people with DS (p. 351). Trenholm and Mirenda (2006) conducted an exploratory survey to ascertain literacy experiences of various age groups of CWDS in the contexts of home and community.
Collaborative research by Kliewer, May Fitzgerald, Meyer-Mork, Hartman, English-Sand, and Raschke (2004) focused on “Citizenship for all in the literate community: An ethnography of young children with significant disabilities in inclusive early childhood settings”. This study showed that educators who exploited the learning technique of children’s personal narratives were successful in developing “literate citizenship” for all learners collectively, in inclusion classrooms. This was based on the premise that learners with disabilities had ability to create and make meaning of written texts.
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I went on to reading a few scholarly work that employed autoethnography, starting with Ellis and Bochner (2000). Adopting a free flowing conversational style, the story itself captures the method. It was focused on an individual keen on pursuing dissertation using the methodology of autoethnography. My choice of autoethnography allowed for a free flowing piece of personal writing imbued with reflection. I contemplated the highly interactive therapy
sessions and thought about how this could work for my own study. It was Murray (2012) who unobtrusively helped me see the value of my study as she too sought to promote appreciation for the human experience and challenge, and shift practices around the subject of
developmental disabilities where DS is also situated. When I perused the autoethnographic study ofLazarsfeld-Jensen (2014), who explored disability by incorporated the “genealogical approach”, which Foucault was associated with, concentrating on issues of deafness and blindness. It is explored from multiple perspectives: “historical, social, and personal”. I did not deliberate on the prospect of a genealogical approach for my own study as the context was far removed from my own.
I was in a quandary about which would be the most suitable and began to ask myself
questions presented at the outset of my study, my critical questions. I read more voraciously and after what seemed like unremitting gestation I was drawn to Sparkes (1996, 2000). He presented a balanced approach and allowed me to engage with his writing style and genre. He initially considered his work as narrative and later categorized it as autoethnography as it does meet the description of what constitutes autoethnography with its connection of personal and cultural components. His writing flows in a fluid, seamless and inviting manner to me: I, as he suggests “attempt to take you as the reader into the intimacies of my world. I hope to do this in such a way that you are stimulated to reflect upon your own life in relation to mine”
(p. 467).
I found a niché.
I felt relaxed and reassured, more so through reading subsequent comments about his
misgivings and gradual development as a researcher using autoethnography until he was able to frame his personal story with substantial and relevant theory. This strengthened his
confidence to tell his story and weave it into pertinent theory. The insights gleaned, from a
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reading, of his work and critiques of it, encouraged me to attempt autoethnography. My intent on utilising personal experiences as the impetus led me to find rapport with Sparkes’s (1996) handling of autoethnography. I position myself to connect the personal lived experiences whilst netting and weaving to integrate the stories of other role-players into that lived
experience. My journey of experiences is coloured by what I observed, what I now choose to write on, and how others will interpret and respond to what I write. Readers, too, may relate or identify with my experience in so far as interpreting my work will be subject to their own experiences. Jointly, or independently, meaning is generated from the words I have used to capture these experiences. Admittedly, there were fleeting moments when I doubted myself.
This was due to exposure and focus on traditional research and writing conventions I employed in a previous study, which for a long time I considered the only legitimate way to gain acceptance from the reader and academia.
I surrendered and embraced that autoethnography will allow me the latitude to express realistic issues, which may be construed ordinary by some but contribute to authenticity I needed for the study. I have not followed a chronological pattern; instead, the incidents are piece-meal and details may not be structured or linear but they are drawn from experiences that are real and captured as believably as possible. Patton (2002) alludes to the same format when he states that “autoethnography speaks to the reality and importance of the seemingly mundane because rich details excavated are essential to the authenticity of autoethnographic study; those details are not structured, linear or even logical, but they are very much drawn from the reality of practice” (p. 111).
I then plunged myself into the world of research that principally used autoethnography as the vehicle to inquire and probe. I took time to read what was placed under the microscope and how they went about doing that. As I was a teacher for over twenty years and as a teacher of English who enjoyed the variety of ways in which ideas were expressed, I also slid under the layers of meaning that were couched within each journal article and book I read.
The phenomenon of the ‘what’ of my study was ‘access’, ‘schooling spaces’ and ‘Down syndrome’. I leaned on authoethnography as a developing qualitative research inquiry practice to ask: “How does my own experience of this culture connect with and offer insights about
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this culture, situation, event, and/or way of life?” (Patton, 2002, p. 84). According to Glense (2006), “the autoethnography begins with the self, the personal biography. Using narratives of the self, the researcher goes on to say something about the larger cultural setting” (p. 199).
Increasingly, researchers (Smith, 2005; Wall, 2006) see a need to better incorporate self into research as a means of exploring sociocultural issues, as well as relieve the researchers from having to speak for others, because self is the source of data.
I examine the focal aspects by looking outward at the schooling system and its enabling or disabling policies, and inwardly at the experiences I have had with my daughter to access schooling. The benefit of adopting autoethnography as the preferred approach is borne by the avenue it offers for “doing something meaningful for myself and the world” (p. 672).
The rewards and ramifications of this type of approach are many. As the researcher “I am not trying to become the insider in the research setting. In fact, I am the insider” (Duncan, 2004, p. 3). Autoethnography provides that space for my own ideas and experiences as researcher, mother and activist to be included. Autoethnography “acknowledges and accommodates subjectivity, emotionality, and the researcher's influence on research, rather than hiding from these matters or assuming they don't exist” (Ellis & Bochner, 2010, p. 122). This study will present a record of the world of Tiara I have been a part of (the lived experience) and express how I gradually make sense of that world of schooling or lack thereof. It will document and analyse critical incidents as I purposively engage with what I have come to know.
Autoethnography involves the researchers’ recollection and reflection. One of the ways of recalling is through memory work. Alerted by Chang (2008) that memory is both a friend and foe. I will proceed to expound how the arriving at the intimacies of my world had to be unhurried and, bearing in mind that when it is assembled, the triadic balance of “research process (graphy), on culture (ethno), and on self (auto)” is met.
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