Rupturing Concepts of Disability and Inclusion

PROLOGUE
them as sacrificial philanthropy; whilst friends and relatives involved with the
church told us we were fools!
The decision was made. So with a one-year old marriage, we prepared to move
to a suburban, white, Spanish-style house situated approximately one hour west of
the metropolitan city. After 4 months of working in the workshop, and a trail of
doormats and damaged bicycle hubs behind me, my husband and I moved in with 4
young people who had lived in this house for a year - their inaugural houseparents
had recently left, but were living in the same town. So began an incredible
experience for the next four years.
Who were these people? Firstly, there was Angela, aged 17 years, the eldest and
the “leader”. Having Down Syndrome, she had been institutionalised since birth,
living in a hospital children’s unit until she was 12, then at another institution until
she was 16. She had never known her family. Then there was Simon, 11 years old,
institutionalised since a toddler because his autism-like characteristics could not be
understood within his family and had resulted in instances of abuse. Desmond was
9 years old, and had been removed from his mother as a baby, because the state
had deemed her incapable of caring for him. His bilateral hearing loss had not been
discovered until he had been sent to school at 8 years old to prepare him for
transfer from the institution. The youngest and the smallest (size 6 for clothes) was
Wally, aged 8. Having Down Syndrome had been the reason for his ‘hospitalisation’
since birth, because, it was said, his wealthy parents could not come to terms with
the social embarrassment of having such a child. The boys, being under 12, had
come from the children’s unit where Angela had lived.
It is not unusual that, when writing about such people, their defining deficits
are noted. Their incapacities and inadequacies in relation to their intellectual
incompetencies, traditionally dominate descriptions of their personhood. However,
these were not the deficits by which we learnt to focus. Their life had been determined
by the lack of personal histories - stories and photos; the lack of familial relationships;
the lack of life’s everyday experiences; the lack of educational opportunities;
and the lack of choices: these were the deficits inflicted by a stigmatising society
which took little responsibility for such actions. Therefore, the malignancy of these
occult deficits flourished in nutritious social media constituted by institutional
excesses of routine and depersonalisation; chemical restraint; and physical and
emotional abuse - all ‘practised’ as medicalised care.
Our initial observations supported these conclusions. More than one of the
children were still on tranquilising medication - one of our first activities was to
ask a medical practitioner to justify this action. No justification could be found
other than that it was a remnant of institutional care where it had been used for the
purpose of behaviour control to enable better compliance to routines. On this basis,
we set about to cease the medication.
Another startling feature of this new household was the way everyone fought to
do basic household tasks, such as washing the dishes, vacuuming etc. Again, another
remnant from where there had been no access to such activities. There were other
indications of well-ordered lives, beds always well made and personal belongings
placed protectively in personal spaces such as bookshelves.
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