Rupturing Concepts of Disability and Inclusion

She cries.
Her blue eyes squint.
Her skin is pink.
The warmth of her touch expresses life.
The miracle of birth has occurred;
And she is perfect.
PROLOGUE
THE QUILTER’S JOURNAL
Our baby did not cry.
The blue of her eyes matched her skin.
Her little cold hand was warmed by tears
When she touched our memories forever.
So perfect; yet so lifeless.
Only God knows
Why we lost Karen as a daughter and sister.
But now we have the gift of Sarah;
Whose love and joy
Illuminates thirty-three years of memories.
Thanks be to God. 2
When I was about seven years old, I went with my parents to the cemetery to visit
the grave of my paternal grandmother who had recently died. On the way out, my
parents took the time to go to another grave – a small grave. It was the grave of my
sister. At that time, and in that place, I learnt that my mother had given birth to a
baby girl between my brother and me. She was a big baby – over 5 kg; and the
birth had been quite traumatic. My mother had needed to recover; so, little did she
know of the cloud of despair that had descended into the delivery room. Karen was
stillborn; and my mother never saw her or held her. However, my father had briefly
sighted his daughter; and he remembers her beauty; a memory acutely rekindled
when, some 33 years later, he saw his second granddaughter shortly after her birth.
My parents were told that, had my sister lived, she would have had significant
brain damage, and been quite affected intellectually. Quite probably, she would
have had cerebral palsy.
What happened in the cemetery that day was more than my parents passively
telling me some family history. This was my first memorable touch with what is
now described as ‘disability’; and that experience was to lead to an enduring,
active and embodied response to people perceived as disabled. From my childhood,
this familial event formed my gaze of such others. I did not see people as tragedies,
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