Rupturing Concepts of Disability and Inclusion

CHAPTER 2
In the context of illness, Frank describes three different forms of narrative -
restitution, chaos and quest. He states:
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Restitution stories attempt to outdistance mortality by rendering illness
transitory. Chaos stories are sucked into the undertow of illness and the
disasters that attend it. Quest stories meet suffering head on, they accept
illness and seek to use it. (Author’s emphasis) 149
However, in regard to people with intellectual disability and inclusion, narratives
may take other forms such as abandonment, segregation, and irrelevance, or
acceptance, presence and integrality. To the degree that these narrative forms exist,
or maybe dominate, as well as counterstories are formed, 150 will be explored in
later chapters.
As well as embracing stories, patchwork quilting, as an artform, is often
culturally embedded. At times, this embedding can be a counter-culture within a
dominant culture. For example, Eve Granick writes of the Amish quilt tradition in
Northern America, describing such “objects of art” as being crafted within a
specific purpose to reflect a distinct culture. 151
John Silber further elaborates:
Amish quilts served many purposes, and they represent many levels of
meaning – practical, aesthetic, ritual and interpersonal. ... The more we know
about the Amish and their lives, the deeper is our understanding of how this
particularly rich form of expression came to be and what it means.. 152
Analogies can be drawn from the Amish tradition of quilt-making to the design of
this research. The notion of ‘counter-culture’ is present. First, there is the artform
of a methodological process of this research embedded in the constructed and
marginalised culturation of disability. Second, patchwork quilting is seen as a
subversive artform of women to the traditions of male-dominated art of architecture,
engineering, painting, sculpture and so on. Using the quilting metaphor, allows for
articulation of the process of women challenging traditional notions of ethics, to be
likened to engagement in a subversive act of crafting. The latter is indeed laced
with irony for, as it will be explored later, women’s immorality has been an
historical – sometimes even contemporary – and dominant theme in aetiologies and
practices concerning intellectual disability. 153
Quiltmakers in the Amish tradition are committed to the disciplines of design
and humility. The quilt reflects a responsibility to the tradition of stark and
geometrical form, and the use of rich luscious colours and sweeping curves, subtly
being softened by the embellishment of thousands and thousands of minute
stitches. 154 Therefore, Amish quilts express harmony and contrasts. They appear
simple, but they require discipline and persistence, commanding and demonstrating
highly developed skills and sensibilities of the quiltmakers. 155 These are crafters
who are disciplined and responsible to the tradition of essence, but nonetheless
challenge the orthodoxy of substance. In a like manner, such is the methodological
requirements of this research. Whilst the researcher must be committed to the integrity
of the research project at hand, the substance of the process requires innovation and