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Rupturing Concepts of Disability and Inclusion

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PROLOGUE<br />

burdens, or, in fact, as potential death. My gaze on such otherness became centred,<br />

not around the notion <strong>of</strong> the distressed <strong>and</strong> suffering stranger, but <strong>of</strong> the potential<br />

sibling; <strong>and</strong> therefore, <strong>of</strong> imagined relationships.<br />

I recall my mother’s willingness to ‘mind’ people with disability for parents to<br />

go out. I remember the respect shown to the Spastic Centre building located a few<br />

streets away, <strong>and</strong> the way the work inside was held in the highest regard. This was<br />

work never visited but always reified. And I recollect the disallowing <strong>of</strong> certain<br />

language; for example, to call someone a ‘spastic’, a ‘retard’, an ‘idiot’, or a<br />

‘simpleton’ received similar rebukes to that reserved for blasphemy. I have since<br />

<strong>of</strong>ten wondered why these actions, though subtle, were so dominant. Obviously,<br />

the stillbirth had had a large impact. But this had not been the totality <strong>of</strong> my<br />

parents’ experiences. I am sure, though, that the influence <strong>of</strong> different experiences<br />

initiated particular moral responses.<br />

My father, a war veteran, was a labourer, employed as a council worker, then a<br />

gardener. My mother, though employed for a short time, mainly shared her skills in<br />

a volunteer context. So their different experiences were ones lived by the<br />

embracing <strong>of</strong> hardship always in tension with determination to seek betterment,<br />

‘rightness’ <strong>and</strong> success, <strong>of</strong>ten at personal cost. This has been their gift to their<br />

children; <strong>and</strong> to any community in which they have lived. But these actions,<br />

performed on the margins, are invisible to popular media portrayal or public award.<br />

These actions are primarily acknowledged in the private lives <strong>of</strong> those in accepting<br />

relationships. Therefore, I have gained an embodied inheritance – my body has<br />

been inscribed with compassion, sensitivity, respect <strong>and</strong> empathy; captioning a text<br />

about difference formed in my imagination from the seeds <strong>of</strong> my parents’<br />

experience. So it was somewhat inevitable that some <strong>of</strong> these texts were to become<br />

expressed in another medium, namely a vocational choice.<br />

After completing secondary school in the mid-1970s, I chose to undertake<br />

training to become a registered general nurse at a large metropolitan hospital some<br />

700 km from home. This was, in my eyes, an inferior choice. I had always yearned<br />

to study medicine, but this proved to be an unachievable goal. Undertaking nurse<br />

training, though seemingly gender-appropriate <strong>and</strong> romantically endorsed as a<br />

‘helping’ pr<strong>of</strong>ession, proved to be an achievable nightmare! During the three <strong>and</strong> a<br />

half years <strong>of</strong> being at that hospital (3 years <strong>of</strong> training plus 1/2 year employed as<br />

a registered nurse), I could never feel comfortable with the militaristic style <strong>of</strong> the<br />

pr<strong>of</strong>ession. Compliance to ‘authority’ through the surrendering <strong>of</strong> any sense <strong>of</strong> self<br />

was not only comm<strong>and</strong>ed, but any form <strong>of</strong> non-compliance brought reprim<strong>and</strong> <strong>and</strong><br />

humiliation. Status was hierarchically determined from senior medical staff down,<br />

<strong>and</strong> this was played out in every arena. This included the staff dining room where<br />

one could only sit within the bounds <strong>of</strong> pre-determined areas, according to status.<br />

The ethos <strong>of</strong> the hospital was configured on the premises <strong>of</strong> power, expert knowledge<br />

<strong>and</strong> authority, all <strong>of</strong> which covertly depended on a dialectical relationship with<br />

vulnerability, naivety <strong>and</strong> submission. The latter descriptors represented, then, the<br />

experience <strong>of</strong> subservient groups such as nurses <strong>and</strong> patients; groups which overtly<br />

depended on the dominating forces.<br />

xviii

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