Rupturing Concepts of Disability and Inclusion

PROLOGUE
which caused us tremendous concern and that was the church’s insistence that
these 4 to 5 people could not be included with their peers in Sunday School. They
had to be in a ‘special class’ with a ‘special teacher’; and this special class just
happened to be made up only with these particular 4 to 5 people. This caused us a
lot of heartache and prolonged discussion. However, it was one battle we would
not win; so the only acceptable outcome for us was to go to another Uniting
Church where we were not subjected to such restrictions.
Another memorable event was the birth of our first-born son after being with the
children 18 months. I distinctly remember the stares of people when I would go out
shopping etc. Their looks spoke the words, “The poor thing. Four like that, and
she’s trying again!” Pregnancy, birth and breastfeeding weren’t just new experiences
for me as a mother. It was the first time for everyone. Our son, Luke, was born
with bright red hair, a considerable talking point amongst all who saw him. But no
comments were as poignant as the questions Desmond asked. Peering in through
the nursery window, he turned and asked, “How is his hair going to grow? Do we
have to water it every day?” What seemed to be ludicrous questions, perhaps
encapsulated the particularity of his life. Brought up in a ‘hospital ward for
handicapped children’, there had been no exposure to ordinary family activities
such as being with babies; nor had there been any one person who could tell him
stories from his own babyhood. There were no anecdotes; there were no photographs;
and there was no knowledge of how a baby’s hair grows!
Everyone loved Luke. Wally was absolutely enthralled with a baby in the house.
Luke became a great playmate. Trudy loved feeding him, cooing in her dulcet
tones of “Are you hungry, Baby? Here. You have it!” It was during the pregnancy
and afterwards, that we could note some distinct differences between Trudy and the
others. Having lived with her family for the first 6 years of her life, she appeared to
be much more aware of others; and showed a degree of compassion and care
simply not there with the boys.
As Luke turned 2 years old, there were some other events which brought their
own idiosyncrasies. Roslyn, aged 10, came to live with us from the children’s unit.
This commenced another ‘it doesn’t matter’ experience as Roslyn had a persistently
runny nose. We were battle-hard by this stage, so within 6 months she had ear,
nose and throat surgery to correct the problem.
Friends and relatives were starting to subtly suggest that it was not in the best
interests of Luke’s developmental well-being for him to be in a house with 5 others
with intellectual disability – views that we would readily dispute if anyone said
them openly. However, by this time, I was pregnant with our second child, and it
looked like the purely heavy emotional and physical demands could not be
sustained with 2 small children; so we made the very difficult decision that we
would have to resign with Kate’s birth. And this is indeed what happened.
However, the time leading up to the point of separation was made harder with
Trudy’s health taking more uncertain turns. Her diabetes had been fairly stable
since the diagnosis of Coeliac Disease, with very few hypoglycaemic attacks.
However, out of this stability came about four months of life-threatening difficulties.
Numerous times, we were wakened during the night to hear her thrashing around
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