Neither–Nor

A Young Australian's Experience with Deafness

First Edition

By Paul Jacobs

Categories: Biography / Memoir
Series: Deaf Lives
Imprint: Gallaudet University Press
Paperback : 9781563683503, 176 pages, April 2007
Ebook : 9781563683855, 176 pages, September 2009
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Excerpt

Prologue
She Wasn’t Meant to Die
 

I am the reason my mother died. It was March 4, 1975. Ann Jacobs was thirty-three. I was three months old. I killed her.
Mum was admitted into Melbourne’s Alfred Hospital on Christmas Day 1974. Her health fluctuated but worsened progressively in the following weeks. At the worst stage my father brought me to her sickbed to liven her spirits, but it wasn’t enough. The doctors discovered what was wrong when it was too late. Mum died of a massive hemorrhage. She was weakened by a heart condition suffered in childhood, and my birth didn’t help.
Few people got to farewell my mother. Her condition deteriorated rapidly, and when her parents heard the news that she was dying, they raced toward Melbourne from their home in Warrnambool in western Victoria. Half way through the 300-kilometer journey, their car spluttered to a halt in the night on a desolate stretch of road. They had forgotten to refuel in their haste. I don’t know how they got to Melbourne; but when they finally arrived, their daughter was dead.
In my favorite photograph, I am at Mum’s breast looking into her eyes, and she is touching my tiny lips with a finger. I have mannerisms that are not my father’s and have often wondered if they are mine alone. Amputees often report “feeling” their missing limb. Mum’s presence is like that for me. The emotional connection between us has never left me. She is always there, but she’s not.

Mum was cremated at the Springvale Crematorium in northeastern Melbourne three days after her death. She was given a Humanist funeral by her own request. As a child, she was baptized and attended church regularly but later rejected the superstitions, myths, and rituals of Christianity in adulthood. My Anglican grandparents never had this intellectual or spiritual awakening in the course of their long lives. They simply believed what they were told when young.
The funeral took place in a bland room: no elaborate architectural designs suggestive of the church’s material wealth or the illusion of heaven, no priest dressed in purple and white, no justification of human tragedy by reciting biblical passages, and no cross, which has become the eternal symbol of the man Jesus Christ of Nazareth. It was just a room with people seated in pews and a rostrum beside a coffin wherein my dead mother lay.
I don’t know how my grandparents reacted to being in such a godless place. Maybe they were too shocked to resist, but I do know they were distraught that their daughter was to be cremated and not buried in Warrnambool. They begrudged Dad for it later, but said and did nothing at that time. But who could believe in an interventionist God after what had happened a few days previously? It was an evil, plot-less twist of fate. She had wanted a baby, had tried for four years to have me. And she paid the ultimate price. If not for me, she could still be alive today.

I have no memory of the funeral but am sure that the epicenter of that day’s grief was my father and me. Family members have told me that throughout the ceremony, I was wrapped in a shawl in my father’s arms. My warmth, smell, gurgling, and promise of a new life must have been a surreal contrast to the cold stillness of Mum’s coffin.
I believe it was then that the devotion Dad had for Mum was transferred to me. I became his reason for living, his hope. This love and protectiveness wasn’t one-way. I am sure I sensed Dad’s profound distress and clung to him. My survival depended on him and, being too young for speech, it was a baby’s only way of nurturing and protecting him.
I know there was one certainty during that very uncertain time: the urge to compensate for the loss. Something special was going to happen. That powerful feeling gave me a passion for life. And this book reflects that passion.

Table of contents

Contents
Prologue: She Wasn’t Meant to Die
My Life Wasn’t Supposed to Begin This Way
The Wicked Stepmother
Handicapped?
The Mentor
They Don’t See Me as Deaf
Beyond the Divide
The Invisible Disability
The Garden of the Dead
A Date at “Macca’s”
The Ganga Man
A Call to Adventure
The Deaf World
Michaela
The Language That Has No Name
Pookie and Snoogums
Guilt?
Aussie, Aussie, Aussie! Oi, Oi, Oi!
A Rip
An Emotional Bonsai
A Herald of Change
Whatever Happens
Florentine Acquaintances
Three Candles in St. Mark’s Cathedral
England
Asylum
The Voices of the Damned
Back to School
You’re Not Here to Kill Me, Are You?
Getting Out of There
Life in the Sane World
Home Again
Afterword

In the fifth Deaf Lives volume, Jacobs tells of searching in Australia and Europe for an identity that has yet to be invented, as being neither deaf nor hearing, but an in-between.

 
 

Description

The Fifth Volume in the Deaf Lives Series
Born in Melbourne, Australia, in 1974, Paul Jacobs lost his mother when he was three months old. When he was five, he lost most of his hearing. These two defining events formed the core of his being. He spent the first two decades of his life “coming to terms with being neither Deaf nor hearing — a neither/nor, an in-between — and a person with a social identity that had yet to be invented.” His memoir, Neither—Nor: A Young Australian’s Experience with Deafness, recounts this journey.
Jacobs excelled in sports and the classroom, but he never lost awareness of how he was seen as different, often in cruel or patronizing ways. His father, a child psychologist, headed a long list of supportive people in his life, including his Uncle Brian, his itinerant teacher of the deaf Mrs. Carey, a gifted art teacher Mrs. Klein, who demanded and received from him first-rate work, a notetaker Rita, and Bella, his first girlfriend. Jacobs eventually attended university, where he graduated with honors. He also entered the Deaf world when he starred on the Deaf Australian World Cup cricket team. However, he never learned sign language, and frequently noted the lack of an adult role model for “neither—nors” such as himself.
Still emotionally adrift in 1998, Jacobs toured Europe, then volunteered to tutor deaf residents at Court Grange College in Devon, England. There, he discovered a darker reality for some deaf individuals — hearing loss complicated by schizophrenia, Bonnevie-Ullrich Syndrome, and other conditions. After returning to Australia, Jacobs recognized what he had gleaned from his long journey: “Power comes from within, not without. Sure, deafness makes one prone to be stigmatized. Yet having a disability can act as a stimulus for greater personal growth, richer experiences, and more genuine relationships.”

 

Paul Jacobs is a doctoral candidate in the Deafness Studies program at the University of Melbourne, Victoria, Australia.