Rupturing Concepts of Disability and Inclusion

PROLOGUE
One thing that did come to our attention very quickly was that Trudy had
incredibly foul-smelling diarrhoea, for which we sought medical attention. The
local doctor thought that it may have been due to intestinal parasites, and
prescribed medications, for her and the rest of the household. When these were
ineffective, we sought to find out some of her medical history from the institution.
We were informed that they were aware of the diarrhoea, and likewise had tested
her for parasites. However, as nothing had shown up, they could not make any
other conclusions other than that she was somebody with Down Syndrome, and
people such as this weren’t very hygienic, so episodes of diarrhoea could be quite
predictable. Basically, this was something we all had to live with.
From our medical backgrounds coupled with our suspicions of some of the
inherent shortfalls of some practices, Bob and I weren’t convinced. Although she
was interacting more easily, and occasionally would smile, her diabetes was still
considerably unstable; subjecting her to other medical opinions. Unfortunately,
these were often unpleasant and negative. A memorable example is when she was
unconscious from a hypoglycaemic episode at 2am while we were away at a camp.
Needing an injection of dextrose, we had to seek medical attention from a local
doctor in the small town. Whilst reversing her unconscious state, he felt obliged to
tell Bob that personally he felt that all children such as these (with Down Syndrome)
should be put down at birth, and not cause a burden to society.
This was not to be the only time we were confronted with this sort of opinion.
Such notions of dispensability could emerge in very different contexts. A new
road-safety policy of the time had declared that all children traveling in cars needed
to wear seat-belts. However, the taxis which transported children to special schools
were often allowed to carry over seven children - obviously unable to wear seatbelts.
However, when the government department responsible for enforcing the
new laws was questioned about this disparity, their response was that children such
as these were exempt from the law, and therefore the ambition for safety offered by
the law did not apply to such children.
There were other instances where well-being ‘didn’t matter’. Because of his
particular facial features, Desmond had an incredibly small palate. However,
orthodontic dental treatment was denied for some years because junior dental
officers declared that having a small and ineffective bite didn’t matter for someone
like Desmond. On another occasion, Simon had dental treatment which required a
local anaesthetic. We weren’t informed that this had been given, therefore neither
were we informed that he should not have eaten anything that would have required
biting for a few hours. Afterwards, he had lunch, and consequently bit into his
numbed lip, leaving a large laceration. We took him to a doctor for treatment only
to be told that, because he had an intellectual disability, he would not be caring
how he would look in the future; therefore, because it wouldn’t matter, it would not
be worth suturing his lip. Once again, we were forced to use the response which we
had now had to retort to many times. It ‘did matter’ to this person because of
his/her humanity and no reason otherwise would be acceptable. At times it was
even necessary to situate this claim by suggesting that if this child was the
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