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I now enter the foray of access and allow Thomas and Loxley’s (2007, p. 1) argument that thinking about inclusion and inclusive education which has extended into new terrains, sometimes so overused as to lose meaning, to lead the course of the discussion.
2.9 Access: its place and spatial consideration together with legislative framework
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than inclusion or participation. Like inclusion, access has become part of the fabric of our discourse about education and community, pervasive and often unquestioned. The word
‘access’ has not been on this scope of journey and it has acquired less baggage along its way.
The concept of access, pertinent to schooling for children with DS has being relatively under- researched under the umbrella of learning disability therefore it warrants further and deeper insights: not exclusively ‘what it is’ but includes ‘how it is experienced’
Access is interpreted differently depending on subject and perspective: medical (Martin, Roy
& Wells, 1997); environmental resources (Ribot & Peluso, 2003); sports (Devas, 2003);
curriculum (Peter, 1992); leisure (Thompson & Emira, 2011) and education (Buckley & Bird, 2006; Lalvani, 2012; Nind & Seale, 2010). Nind and Seale contend that access touches upon all aspects of human and social networks including physical access, knowledge, power, relationships, advocacy and participation. This study focuses predominantly on schooling spaces and the impact access has for my CWDS and is considered in conjunction with Nind and Seale multidimensional model.
Research was conducted by Martin, Roy and Wells (1997) in an effort to establish experiences of health-care services for people with intellectual impairments and carers, with a follow up after a year showed that there were improvements in health through screening but the challenge was with transport to get to the service provider.
Ribot and Peluso (2003) consider access in the context of US, to be comparable to ‘a bundle of powers’ than to its association with ‘bundle of rights’ as used in property. The distinction is that the former can be applied to a broad spectrum of social relationships which contribute or restrict benefits from resources, which they argue is not the case with property relations. They submit that power arises from or courses through the ‘intended and unintended
consequences’, an expression, which I found very useful in the context of schooling as it also has intended and unintended practices effected through various strata of government, policies, implementers, designers, management personnel, with potential to affect social relationships They define access as the facility to gain advantage from resources “including material objects, persons, institutions, and symbols” (p. 3) which have bearing on learners and parents
61 as ‘consumers’.
Devas (2003), offers a detailed description of support for people with learning impairments.
The suggestions include individualised programmes to specific facilities depending on
specific needs and abilities. The emphasis is to make available broad access by paid personnel and general administration staff and understanding by support staff on skills they need to have to accommodate any adjustments that people with learning impairment may require.
My personal experience of limited access to leisure activities for my CWDS found connection with Thompson and Emira’s (2011) study in the UK with focus on parental and caregivers’
experiences and perceptions in securing opportunities for children with Autistic spectrum disorder (ASD) to access and participate in leisure activities. He recommends further research into inclusive practices to consider aspects of leisure activities to encourage parental
engagement. A telling statement of the attitudes of people in authority to CWDD is captured in this quotation I came across on the internet. It reads: “They say every child matters, but they do not” is an indictment on adults, if the needs of all CWD are not treated with equal care as their counterparts.
Nind and Seale (2010) endorse the view of Ribot and Peluso (2003) who explain that access is often discussed in terms of “getting to somewhere”, “being part of something” and, crucially, being able “to derive benefit from things”. This takes the concept beyond the simplistic notion of merely getting through the door to somewhere or something, and into the realm of what happens thereafter. Access, like inclusion, is more than about place. It is more ambitious than the integration notion of being allowed in (as long as one fits and behaves). It carries the notion of rightful and active participation. May (2004) problematised the notion of
participation by suggesting that the term is used in different ways implying different levels of participation from simply taking part (superficial, being here) through to involvement ( integral, active). Participation is defined by Treseder (1997) as a process “where someone influences decisions about their lives and this leads to change” (p. 4) In synthesising insights of participation from various sources, the key elements I extracted are: reciprocity, views are heard and valued, consultative decision making, support, positive contribution to school and local community. To me these phrases and expressions collectively imply inclusion and
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agency: more than hearing and listening but willfully seeking to convert gestures and
exercises into tangible processes. In my discussion, participation will be subsumed as part of access. Nind and Seale (2010) do not focus their theorising on specific developmental delays or diagnosis but offer a universal model.
On reading of “advocacy”, “physical”, “knowledge”, “participation”, “power”, “relationship and communication”, and “quality of life”, as factors to unlocking meaning of access, I saw its value to my study as it started to form part of the theoretical understanding. For the purpose of this PhD study, an emergent model focusing specifically on access to schooling spaces for CWDS, is adapted from information available from Nind and Seale (2010).
Figure 4: Representation of Nind and Seale’s, multidimensional UNIVERSAL model of access alongside emergent multidimensional SPECIFIC model of access.
Emergent model of access for CWDS Multidimensional and specific model of
access Represented Multidimensional
Model of Access Nind and Seale (2010, p.)
Multidimensional and universal model of access
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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.