Rupturing Concepts of Disability and Inclusion

PROLOGUE
hardships in terms of access and opportunity; but most importantly, understanding
of their particular experiences and needs.
Misinterpretation and ignorance manifested itself in many forms. From my
position as a Supplementary Services Worker in child care services, I saw parents
and families continually be subjected to ‘professionals’ who thrived on discretionary
opinions. I found myself in somewhat of a liminal position - on the threshold
because of the knowledge gained as a pseudo-parent, and of now being employed
as a professional worker with newly- acquired university knowledge. But I found
the same sort of misused power active in the context of professionalism that had
underpinned my nursing experience some 15 years earlier. I saw people making
decisions about worth, desires and opportunities from the security and distant
isolation of nice workplaces, rarely daring to visit families in their own environment.
These decisions were made with the power that could determine someone’s access
to services, to education, and to financial entitlements. I also saw first hand the
despair of invisibility felt by families as they struggled to be understood and heard.
But most alarmingly, I was exposed to the crippling effects of guilt constantly
imposed on parents by a society who determined that these conditions were selfimposed.
I heard stories of how parents were told that their child’s condition had
been the result of parental sin; for living in particular relationships; and for not
choosing certain moral paths. And I found it disturbing that these assessments
were propagated by different Christian churches. A paradox was evident - publicly,
churches were involved in service activities; whilst privately, certain members felt
they had a right to police what they perceived as expressions of the immorality of
society. Somehow, legislation and professionalism couldn’t address these realities.
A couple of years later, we again lived in the large metropolitan city. One evening,
we received a telephone call from a friend to tell us that Trudy had been admitted
to a hospital. She was very unwell, and cancer of the liver was suspected – the
diagnosis confirmed, in fact, a couple of days later. When we visited her that night,
we effectively turned the clock back to the late 1970s. She was sitting up in bed
when we arrived about 8pm. Her meal tray, which had been distributed around
5.30pm, was still on her bedtable. With an intravenous drip in her arm, and crying
with each small mouthful because of pain, she was endeavouring to eat her dinner,
committed to her lifelong discipline of needing to eat everything provided to meet
her dietary requirements. We immediately engaged in conversations of the past,
and again to hold her had a small, yet still significant, effect.
When a nurse did come to attend to her, I asked if Trudy could have something
for the obvious discomfort she was in. His reply was that she had been offered an
injection a couple of hours earlier, but had grizzled when they tried to give it to
her. He then declared how they assumed she mustn’t like needles; and how they
can’t waste these drugs, “you know”, so it was decided to abandon the attempt.
Pulling out my nursing survival tool kit which I surprisingly discovered I still
carried, I made an icy response. It seemed quite unimaginable to me, and now
hopefully to him, how this young woman with insulin-dependent diabetes requiring
two injections a day since she was 6 years old, could be scared of needles. I then
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