As you can see I am a person with Down's syndrome, which means that I have one extra chromosome in every cell in my body. My grandmother's friends wanted to
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pray for me to become 'normal' but my mother asked them rather to pray that I would receive the support to reach my full potential as a Down's syndrome person.
(Sheri Brynard: Extract 1 from her speech at her graduation, 2012).
I take my cue from Davis and Sumara (2006) who state that “a knower’s knowledge
necessarily affects the ways a phenomenon is perceived and how the knower acts in relation to that phenomenon. (p. 15). In trying to gain an understanding of school as a social system necessitates my simultaneous consideration of the multiple and complex layers of dynamic nested activities that are continually at play. Whilst working through the intricacies of my child’s abilities, I was exploring the unchartered terrain of discourse on disability, access, and schooling identifying for myself the various layers of dynamic interrelated nested activity. To inform myself, I initially started reading about ‘one extra chromosome’ of DS (Davis, 2008;
Buckley, 2000; Skotko, 2005) which led me to interpretations of disability (Terzi, 2004), inclusion (Buckley and Bird, 2000; Muthukrishna, 2011) and incrementally brought me to access (Ribot & Peluso, 2005; Nind & Seale, 2010). It was Ellis and Bochner (2000) who offered me the avenue of autoethnography through which the ensemble can be compiled and presented as a personal and academic offering to the reader.
My raising a child with a disability involves negotiation, part of which is adaptation. The greater and more demanding concerns were about her future. The primary concern was located in admission into an inclusive mainstream schooling context. For me, inclusive education meant full immersion in a mainstream school, with frequent occupancy in a regular mainstream class, accessing partial or full benefit of allotted instructional time as
recommended by Rynders (2005), whereas special schools tend to focus on skills of self-care and independence and minimising the academic expectations of learners. Inclusion within education implies that children who were formerly trained and educated in special schools are now allowed to attend any ordinary school and participate in classes with their ‘normal’ peers (Klompass, 2008, p. 3). Clearly, abilities vary from one child to another and it is no different with DS. CWDS are not a homogenous group, although most tend to be within the mild to moderate learning disability range. CWDS “are capable of learning in the mainstream
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classroom but they often advance at a slower level” (Davis, 2008, p. 271). This is reinforced by George Evan’s expression that “every [child] can learn, just not on the same day, or the same way”.
This leads me to consider in greater detail the notion of access and explicit participation.
It is necessary to contextualize and expand what the concept ‘access’ means in order to measure its efficacy in practice. It must be understood that in this study, it is more as an implementable rather than a political idea. Access, as a concept, has been functional or implicit in many contexts including economics, politics, technology, medicine and education, but explicit research dealing specifically with CWDS participation in inclusive setting is concentrated in the UK. In tandem with access is the issue of participation. ‘Participation’, as a term is considered as having multiple meaning including ‘taking part’, ‘being present’.
Additionally, it may refer to contexts of consultation or transference of power. In such a context, the participant can affect the outcome in decision making by being provided with relevant information, (Franklin & Sloper, 2007). When contemplating ‘participation’ for CWDS in a mainstream inclusive setting, it should be characterised by meaningful involvement: being present, taking part, being consulted and allowed as the learner to be instrumental in the outcome processes. In unlatching the practicality of implementing this idea, Franklin and Sloper (2006) offer the following explanation that resonated with my expectation, “meaningful participation must be seen as a process, not simply an isolated activity or event” (p. 726). The research work of Rabiee, Sloper, and Beresford (2005) with children of youth who do not use speech for communication draws sharp attention and alignment to issues of access, schooling spaces and DS, the main issues on which this study focusses. A crucial element in achieving the overall aim of participation, is the need to
“develop communication methods, which can maximize children’s communication potential to express themselves and address the barriers they face. The other key component for effective participation is to recognise the fact that communication is a two way process requiring others to learn and understand how a child expresses herself/himself.” (Rabiee, Sloper & Beresford, 2005, p. 386).
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In synchrony with the notion of ‘participation’, is the element of learning. Lave and Wenger (1991) critique the association of learning ‘situation’ with a ‘simple location in space and time’ in their model of learning as ‘legitimate peripheral participation’ in a ‘community of practice,’ These theorists consider their views on situated learning as involving a much more multidimensional and relational perspective in which “agent, activity, and the world mutually constitute one another” (pp. 32-33).
The forgoing insights highlight the need for me to look more deeply into the issues of access, the principal theory upon which this study is constructed. A better understanding of what I mean by access, and how access can be promoted or achieved, is fundamental to all children and their geography of schooling. The composite group of CWD are tacitly incorporated within this particular study focus of CWDS. This segmentation could increase understanding of what specific target group experiences and possibly increase generalisability of CWDD.
Having broader and deeper understanding will provide the rationale for promoting it. ‘Access’
is a useful concept and term that gets right at the heart of calls for the dismantling of a disabling society. It is about people, their families, their allies and advocates, their potential and their ambitions. I will return to this discussion later in this Chapter. At this juncture, it is necessary to position interpretations of disability with schooling ahead of that detailed
consideration of access, so that the related questions of how and why may coalesce to a mosaic of understanding their overlaps and interconnectedness, when looked at collectively.