Uppeldi og menntun - 01.07.2014, Blaðsíða 98

Uppeldi og menntUn/icelandic JoUrnal of edUcation 23(2) 201498
Behind the qUest for tales, stories and liVes
of the grand narrative of disability, which makes the counter narrative important in
battling exclusion and disabling views (Stefánsdóttir, 2008).
An overemphasis on our power and influence as researchers should also be avoid-
ed. This runs the risk of underestimating the power possessed by the narrators, and
in turn, reproduces the grand theory whereby people with intellectual disabilities are
rendered as passive, incompetent and easily manipulated. In our experience, people
with intellectual disabilities are able to subvert the conditions of research, even when
the researchers’ views or those of significant others are belittling.
Despite the best interest and efforts to make intellectual disabilities research par-
ticipatory and inclusive there seems to be a tendency to underemphasize how these
studies and narratives add to the construction of the label of intellectual disabilities.
Bogdan and Taylor (1994) reject the idea of intellectual disabilities (or ‘mental retarda-
tion’ as they call it) as an absolute condition and claim that it is socially constructed.
They argue that the label is associated with stigma and people labelled as intellectual-
ly disabled are at risk of being viewed as deviant and consequently rejected by society.
Keeping that in mind it seems relevant to be aware of our contribution, as researchers,
to the construction or deconstruction of this label that has historically been viewed
in negative terms. This brings us back to Dan’s story about deterritorialising and re-
territorialising relationships between a self-advocate with intellectual disabilities and
his mother. As researchers and advocates, we need to question our decisions about
how we tell these stories, where we decide to freeze the picture and how that deci-
sion influences the construction of intellectual disabilities and iterates or opposes the
grand theoretical narrative. Perhaps we can never fully escape the seductive powers
of the grand theory, but by engaging in reflexivity and continually questioning and
challenging our practices, in collaboration with our narrators, we might be able to
contribute to a more inclusive construction of the humanity of people with intellectual
disabilities.
Concluding remark
If we look carefully enough we can see how narrative research collaboration between
people with intellectual disabilities and academic researchers can produce further
stories, accounts, perspectives, and understandings. Even by employing critical and
inclusive research approaches we are always at risk of promoting disabling views of
people with intellectual disabilities through the impact of our presuppositions. We
have been collaborating with people with intellectual disabilities for over 15 years and
have learned how committing to inclusive practices enables us to look again at the re-
search process and, equipped with appropriate theoretical tools and analytical lenses,
seek out the ways in which people with intellectual disabilities challenge exclusion-
ary constructions of their humanity. We have come to understand the importance of
asking questions about how people with intellectual disabilities want to be presented
and that we should not underestimate their abilities to resist our presuppositions and
power position as researchers. Although the primary goal of our research is to add to
the knowledge of the lives of people with intellectual disabilities for the purpose of