Access to schooling spaces for my child with Down Syndrome : an autoethnography.

Abstract

As part of the Indian diaspora whose ancestors were indentured labourers brought to South Africa to work in the sugar plantation (Mishra, 1996) with little scope for education, I repeatedly heard the expression ‘the only way to escape poverty is through education’ from my grandparents and parents. The access I had to schooling, and the opportunity to complete, provided me with a passport to tertiary education, a privilege only a few of my siblings had. The importance of education was instilled in me from my childhood and it was a natural expectation when I became a parent, to want access to good quality education for my own children. My pursuit of access to schools for my daughter with Down syndrome was an immense challenge with no guarantees in the South African context. I have undertaken this study to reflect on nearly fifteen years of formal and informal schooling for my daughter, Tiara. In an effort to purposefully engage the reader on the subject of schooling spaces and access to it, I considered autoethnography most suitable for the task. It offers me the scope of using personal experiences as principal data and the latitude to express those experiences in a mosaic format by intersecting and sometimes collapsing it with those of others. These ‘others’ consisting of four women, are part of a community of practice, and predominantly parents of children with Down syndrome who interact within my social space. This allowed a wider interpretation of my experiences in relation to others. Their cameos which emerged from semi structured interviews conducted at a time and place at their convenience are captured alongside mine as episodic nodal moments. In choosing autoethnography as the methodology, greater consideration was given to the issue of ethics to ensure confidentiality and respect of all informants. Three of the informants each have a child with Down syndrome. The fourth informant is an academic who is a prolific researcher in the field of Inclusive Education. Her input is from a dual perspective of having a sibling with disability and being a key role-player in the crafting of policies pertaining to inclusive education in South Africa. These reflective accounts were excavated predominantly through qualitative method of memory work. While memory-work is broadly recognized as a profoundly felt emotional experience, it is first and foremost a research tool (Cadman, Friend, Gammon, Ingleton, Koutroulis, McCormack, Mitchell, Onyx, O’Regan, Rocco & Small., 2001). Memory work entailed chronicling past events in as much detail as possible with occasional stimuli to trigger recall. A coalescing of all chronicles and cameo accounts pertaining to access to schooling spaces for children with Down syndrome is followed by thematic analysis. This is discussed in a mosaic format with all chronicles and cameos interwoven. A created multidimensional model of access, influenced by Nind and Seale (2010) helped unpack the enabling and disenabling aspects of experiences of accessing schooling spaces for children with Down syndrome. This is done to shed insight on the state of South African segregated schooling in public education, in both mainstream and special needs and the challenging experiences of access to inclusive schooling spaces for children with Down syndrome. The data suggests that despite enabling legislation, implementation of inclusive policies reflects gaps, primarily in lack of political will and sustained effort. Physical access into a school did not necessarily mean that Tiara had enabling access to and meaningful participation in the spectrum of schooling experiences: systemic, curricular, social, pedagogical, spaces and practices. Parental advocacy has historically contributed to the evolution from medical deficit model to social justice but the need for endurance to continue the fight for accessible inclusive spaces continues to be unyielding.