Free Articles from Interaction 28 Issue 2 Perceptions can not control reality ... | Page 2

interaction : v28/2/’14

Through the lens of our culture we perceived that Julius was “special” and so we
expected that his life would be spent in “special” places and subject to “special”
rules. In this sense, “special” was a word that served to exceptionalise and separate
him and that did not feel special at all. We, Julius’ parents, like previous generations,
grew up through a time when people with disability were kept away from others and
mainstream society, defined by institutional segregation of one form or another.
Those assumptions and that “reality” were so deeply entrenched that it did not occur
to us to question their basis or validity.
“Inclusion”? We had never heard the term and when we finally did, we were
skeptical at first because it was an idea that seemed to go against everything that we,
as non-disabled people, thought we knew about people with disability and what
they needed. Until then, we had not had the opportunity to imagine any better; we
did not grow up with children with disability, in the family or at school, and we had
not worked in a workplace with adults with disability.
Our perceptions of Julius and his path were ultimately determined by a set of cultural
assumptions or beliefs that shaped our expectations about our son and his condition,
including aspects of it such as intellectual impairment. We did not consciously
reflect upon or articulate those assumptions or beliefs in any way but they were the
ready-made prism through which we viewed Julius and which informed the range of
questions we asked and how we asked them.
One crucial assumption that we made was that people should be “normal” and that
falling within a “normal” range is more right or legitimate than not. When you think
about disability and functional impairment, if you accept the categorisation of
people into “normal” and “abnormal”, then you are necessarily seeing a person with
a disability from a “deficit” perspective, as being “less than” and therefore not fully
belonging. After all, these are the questions that are asked of us as parents, as soon
as our children come into contact with the “human services” professions; “What is
his IQ? What can’t he do? How ‘severe’ is he?” Things that determine the types of
services and how much funding Julius will get, also define him by “how abnormal?”
In some way, it would have been easy to accept that perception of Julius and to start
shaping his reality from that position. Fortunately for all of us, we also came into
contact with others in our early journey who dared to reject that perception and to
replace it with an alternative vision based on the recognition that human variability,
including the experience of disability, is as universal a reality as the fundamental
need for each and every member of our human family to be included and to belong.
And this inclusionary vision sounded so much closer to what we had in mind for all
of our children than the separate “special” world that was being offered to Julius. So
we embarked on a road less travelled by families like ours, although in some ways it
is also the road more familiar, because it is the same road we had always hoped to
travel as a family although somewhat bumpier than we envisaged.

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Australian Institute on Intellectual and Developmental Disabilities