Portrait of the Artist's Mother: Dignity, Creativity and Disability

By Fiona Place

Portrait of the Artist's Mother is a memoir and an examination of the politics of disability. The author describes the pressure from medical institutions to undergo screening during pregnancy and assumptions that a child with Trisomy 21 should not live, even though people with Down syndrome do live rich lives. Years later, Fiona's son, Fraser, has become an artist. His prize-winning paintings have been exhibited in galleries in Sydney and Canberra. How does a mother get from the grieving silence of the birthing room through the horrified comments of other mothers to the applause at gallery openings? This is a story of commitment to the idea that all people, including those who are 'less than perfect,' have a right to be welcomed into this increasingly imperfect world.

• Language: English
• Publisher: Independent Publishers Group
• Release date: Apr 1, 2019
• ISBN: 9781925581768

Book preview

References

Chapter 1

GIVING BIRTH

I was an ordinary woman, an ordinary woman on all fours giving birth. The next moment, a mother who had relinquished all duty of care.

On Saturday 17 February 1996, at 2.45 pm in a busy Sydney maternity hospital, I gave birth to a live, crying newborn. A newborn with almost perfect Apgar scores. But instead of elation and joy, instead of sparkling sentiments and congratulatory words spilling into every nook and cranny of the room, the delivery space collapsed into an uneasy silence, into whispers of palpable disquiet. A stillness no mother would find pleasing.

Or manageable.

I knew something was amiss, knew all was not as it should be. My first hint of trouble occurring as my baby slithered out of me. Unlike my first-born, this baby had not thrust open the walls of my birth canal, had not caused me to fear I would tear wide open. Yet, while I knew instinctively something was wrong, at another level I didn’t have a clue and told myself that the baby’s softness, its lack of robustness, could simply be a second birth thing, or something that in retrospect would easily be classed as irrelevant. Easily explained away.

I stopped inhaling the gas and crumpled down onto the floor. I was free. With the blood on my legs, the blood on the floor — the blood of a job well done — I had become a mother for the second time. Given birth to a boy for the second time. However, my primal instincts would not be subdued, and there was a voice telling me that my journey into motherhood might not be as straightforward as it had been the first time round. That it had already veered off course. And as I looked upwards, looked towards my husband Anthony, I couldn’t summon any words.

Not one.

Speechless, I took his outstretched hand and pulled myself upright. I then steadied myself against him, allowing the tenderness of his arm and the warmth of his flesh to take hold, before shuffling the six or so steps from the birthing mat to the bed. With each step I experienced a growing sense of apprehension, a violent swirl of emotions that made me both want, and violently not want, to make eye contact with my son.

Letting go of Anthony’s hand, I climbed up onto the bed. Once seated, the moment hung. Waiting. For me to take charge. But there was no way I could prepare myself other than to pull the flimsy bed sheet up over my naked body. My apprehension was overwhelming.

However, once I was handed my son, when I did first search into his eyes for that moment of recognition, that moment I would cherish and recollect forever. I was immediately overcome by a strong yearning to push the looming dread aside and talk the small talk parents usually do when they hold and gaze adoringly at their newborn for the very first time.

Isn’t he beautiful? Doesn’t he have your eyes, my ears and your nose?

And in a voice that wanted to feel excitement, that wanted to expand and fill the room, in a voice that wanted to be comforted and reassured, I found myself asking Anthony if he too thought our son had ‘downsy’ little eyes. I wanted him to say yes, to agree with me, but to also say my observation meant nothing. That yes just like Imogen, the daughter of close friends, our son had exquisite almond-shaped eyes.

I wanted my observation to be swept up, to be made ordinary and part of the everyday. Wanted the man I had chosen to have children with chat and reassure me. To circle us with love. To employ his own Bachelor of Medicine and Bachelor of Surgery to shelter our son from the growing unease, the foreboding that was beginning to suffocate any feelings of warmth or joy. I wanted him to dismiss my musings, to refute the medical knowledge now threatening to choke off any feelings of happiness. Of pride.

I didn’t, or couldn’t, realise that he too might be wondering. In my post-birth effervescence, I couldn’t appreciate that Anthony might be thinking our son’s eyes were too almond-shaped, his head too small, and his ears too low-set. In my post-birth desire to be a mother showered with love I couldn’t understand that Anthony, like me, might be in pain, might be experiencing distress. And want to protect me.

Protect us.

However, neither privacy nor intimacy were on the agenda. And only minutes after giving birth I was asked to hand over my newborn son to allow the paediatric registrar to examine him. To observe him for any signs of disorder. There were after all legitimate concerns. Our son was red. Tomato sauce red. A red too intense not to signify anything.

I watched from my bed as the paediatric registrar undertook his examination, each moment of his observing wounding my heart. There was something deeply dehumanising about his looking. Deeply unpleasant. Yet, if the truth be known, I too had looked, I too had noted the signs, the ‘stigma’.

I had been taught to ‘see’ as a paediatric student nurse. Taught to notice the signs of abnormality in the newborn especially the appearance of a simian crease on his or her palm. The crease — a single crease that extends across the palm of the hand, formed by the fusion of the two palmar creases — was unusual and resembled that found in higher primates, in non-human simians such as monkeys and apes.

He may have a small head and low-set ears, but he doesn’t have the telltale sign, the simian crease.

I wanted to shout out, to let loose with pride.

In other words, there was still plenty of room inside my head for doubt, for the possibility of good news, enough space for me to continue harbouring any number of reasons for his floppiness.

His difference.

I still remember the enormity, the loud female voice as it smashed through the silence. Did you have an amniocentesis?

The question hit.

Hit hard.

And at the same time didn’t hit at all. Still woozy from the effects of the nitrous oxide, still wanting to experience the elation of having given birth to a second son, I couldn’t take in the portent, the significance of the midwife’s request for information.

I simply said no, that I had chosen not to have the test. I also found it an odd question. Almost rude. I was, after all, still trying to comprehend why there were no smiles. No warm words of congratulations. No welcoming rush of wonder towards my newborn.

Towards the baby Anthony and I had made.

Wanted.

And instead of bathing in the precious awe of a new life, I found myself up against a considerable headwind. Without warning, ice-cold gusts were slapping at my cheeks, burning with a ferocity I had never imagined, never believed possible.

I was to be managed, processed and moved out of the delivery suite as quickly as possible. I wasn’t special. There was nothing to applaud.

Do you have private insurance? the midwife continued.

Yes, I replied, wanting to be polite.

Then we’ll put you in your own room.

I knew being allocated my own room signalled bad news, but I still allowed myself to feel special, to feel encouraged by the idea of my own ensuite, my own space. I couldn’t, however, be that naïve. I did know the allocation had been decided upon because it was presumed I might be upset, might be depressed, might even be angry if I roomed in with mothers whose babies had been deemed ‘normal’.

I might need a space to cry.

It was also assumed Anthony too might need a space to express his anger.

We were deemed a risk — a possible volatile mix of outright disbelief and unimaginable grief.

We might need to rage furiously.

We didn’t.

We did though wonder, while holding our new son in the privacy of our own room, while adjusting to the circumstances in which we found ourselves, if his redness, his probable polycythaemia as noted by the paediatric registrar — a condition in which there are too many red blood cells — might also explain his difference. We did wonder if his floppiness, his low muscle tone could be explained away by an exposure to a virus during pregnancy, did wonder if he really was as different as everyone seemed to think.

We needed to latch on to these thoughts as a way forward, as a way of protecting ourselves against the swift and brutal biology as destiny attitude of the medical staff.

But we also did know.

I still remember the exact moment of recognition. Still remember looking into Anthony’s eyes and him beginning to say, Yes, they do think he has Down syndrome, when we were interrupted by a knock at the door. It was the paediatric consultant Jerome Black, a Fellow of the Royal Australasian College of Physicians, the same consultant we’d had with Angus, our first-born. Jerome was visibly shocked. Uncomfortable. And rather than engage in any great-to-see-you again chat he got straight down to business.

You’re both intelligent people, he said. You know what we are thinking.

We could see the tragedy, witness the disaster in his face. Jerome’s eyes betraying an inability to fathom how two tertiary-educated professionals could have allowed this to happen. Could have gotten themselves in this most unenviable situation.

True, it was not what Anthony and I had planned, not what we had wanted, but even then, even under the harsh spotlight of the professional, we knew we were united, we were solidly there, solidly behind our son. We also knew our immediate task was to put Jerome at ease, to make him comfortable with our tragic birth outcome, while managing our own need for time and space.

Anthony and I agreed to the chromosomal studies, but we also requested that Jerome run a viral screen to rule out the possibility that our son had been exposed to a virus in utero. Jerome looked doubtful, but in deference to our friendship, to the fact Anthony was a doctor and had studied medicine contemporaneously at the same university, he agreed.

We needed a wild card, needed the possibility of some path other than that mapped out by a chromosomal study. Needed to push back against the categorising of our son. We needed a space with possibilities, a space with hope.

The other issue, the more pressing issue, Jerome told us after examining our newborn, is your son’s probable polycythaemia.

And shifting his gaze to Anthony, he began talking doctor to doctor, explaining how our son’s hyper-viscosity was putting his central nervous system and gastrointestinal and renal systems at risk. He also told us his heart rate was falling and he wasn’t adequately regulating his body temperature. I think we should act, he advised. You can have 24-hour access, but I need to take him to intensive care now.

We both nodded.

On this issue, the health and wellbeing of our son, we understood the need for swift intervention. And I was pleasantly surprised to see Jerome take the time to carefully and securely wrap him in a second bunny rug. Give me half an hour, and then you can come down, he said, wheeling the crib out of the room.

Left alone with so many uncertainties swirling around the room I gazed out the window. The glass hadn’t been cleaned in a while, but through the streaks of grime, over the rooftops and between the trees I could still make out the tiny blue patches of Sydney harbour — only a few small specks of the shimmering water were visible, but even they comforted me, grounded me.

I could sense Sydney in my veins. Feel Sydney pulsate. Feel firmly at home. Though, I also jokingly told Anthony, my post-birth ‘state’ definitely far outweighs the meaning of our city’s name.

Derived from Saint Denis, the French patron saint of headaches and hangovers — my post-birth discomfort was far greater than any Sydney rum-induced headache or hangover.

Those hard-drinking convicts, I continued, may have drunk themselves blotto, but they had nothing on the pain of childbirth.

Then, turning myself away from the window, turning myself gently back to the main event I looked at Anthony. So, what shall we name him? I asked quietly, slowly.

It was something I knew we could focus on, something we could do. Something we hadn’t as yet thought about in earnest. Something that may help to relegate the pain to the back seat. Spencer, Declan and Cameron all came to mind, as did Jackson, Cooper and Max, but the name that kept returning to our lips, kept returning to our effort to restore some tranquility, some sense of order, was Anthony’s suggestion, Fraser.

F-r-a-s-e-r.

It was an uncommon name, but on saying it out loud to one another we decided it was the one.

A name that could, a name that would, take our son anywhere.

There was enough time for me to freshen up. So before heading off to the Newborn Intensive Care Unit (NICU), I had a short, sharp shower.

In my ensuite.

My unexpected ensuite.

I wanted to soothe myself, bring myself down several emotional notches after the intensely traumatic experience of giving birth. My vagina and its stitch-repaired tear required a forceful spray of alternating warm and cool water.

Finished, I gently patted myself dry and dressed in a pair of Anthony’s soccer shorts and t-shirt. Clothes that comfortably fitted a post-birth me.

The half-hour finally up, we left our room for the NICU, with Anthony insisting I keep to a post-birth pace, a pace in tune with a woman who has just given birth. Hurrying, he told me, wouldn’t solve anything.

Wouldn’t change what already was.

Hi, I’m Fiona and this is my husband Anthony, I said by way of introduction to the nurse at the reception desk. We’re the parents of baby Pollock, of Fraser.

Fraser, she said, gently guiding us towards his crib. What a handsome name.

The atmosphere in the NICU was very different to that of the delivery suite. The focus was no longer on our son’s genetic abnormality, on a poor outcome, but rather on his health and life in the now. Pulling up a chair I sat as close as I could to his crib and gently stroked his cheek, gently whispered his name, gently told him I loved him.

Over and over.

My breasts hurt from the fullness of my milk, and I was relieved when Jerome suggested I try and feed Fraser. I smiled towards Anthony, and in anticipation, seated myself comfortably and watched on as he gently picked Fraser up out of his crib, softly kissed his forehead, then handed him to me.

I held Fraser against my breast and brushed my nipple across his lips. Fraser, however, didn’t find it easy to latch on, and stay latched on, and only sucked for a few seconds. It wasn’t enough to relieve my discomfort, but it was immensely satisfying. Immensely normalising. I smiled again towards Anthony. And again, he smiled back.

It was a start.

A beginning to our nurturing of Fraser.

I stayed with Fraser for most of the night, only now and then returning to my room for brief periods of what could loosely be described as sleep. Periods during which I lay down and closed my eyes.

Each time I returned back to the NICU I admired my son’s calmness. For no matter how much they poked or prodded his small body, his grace under pressure was remarkable. His ability to settle himself, to compose himself after each and every interruption, was humbling.

But he was not progressing; he wasn’t feeding enough or keeping his temperature within an acceptable range. Early on Sunday morning, Jerome advised we consent to a partial plasma exchange transfusion. To the insertion of an umbilical venous catheter so that a certain amount of Fraser’s blood volume could be removed and replaced with saline.

Jerome told us this would decrease the internal friction, decrease the thickness of his blood and allow for better tissue perfusion; allow his organs to receive the necessary oxygen to function properly and minimise the risk of any long-term neurological damage. He also told us the procedure was not without its own risks and was still considered controversial in neonates, that is in infants less than four weeks old.

We tried to assess the risks, to understand if the dangers — including blood clots, infection or high blood pressure — outweighed the benefits, but we were too tired, too overloaded with information. In the end we decided to trust Jerome, to accept what he believed was best for Fraser.

To our enormous relief Fraser came through the procedure with flying colours and within hours was more alert, more hungry and, simply, more himself.

On Monday afternoon he was discharged from the NICU and allowed to join me in my room. Where I breastfed him. Bathed him. And slept when he slept.

Anthony visited as often as he could, usually with 23-month old Angus in tow. Angus seemed to like the idea of having a brother, seemed to understand there was a new family member, but he was more intent on controlling the remote of the television set, on watching cartoon after cartoon. I too had planned on watching television, had planned on my second baby being a breeze. And while Fraser did sleep, and in some ways was easy, other aspects of caring for him were far more complicated, far more time consuming.

For example, his low muscle tone and larger than average tongue made it difficult for him to suck, to draw in an adequate supply of milk, which meant feeding times were by necessity far more frequent and far lengthier than they had been with Angus. Similarly, bathing him required more dexterity than it had for Angus, because his floppiness made it harder and more tiring to keep him safe, to keep his head above water while gently washing his body.

Yet despite these minor difficulties, I still wanted to luxuriate, to enjoy the short period free from domestic chores and focus on how Fraser was like any other baby. But the staff had other ideas. The medical and nursing staff were worried.

Why hadn’t this mother cried?

Didn’t this mother get ‘it’?

I wasn’t behaving as expected.

I wasn’t in tears, fretting and desperate for answers.

As a consequence, I found myself the recipient of a series of lectures, the social worker seemingly intent on making sure I was under no illusions, no misapprehensions. With red information folder in hand, the middle-aged woman had not only pulled up a chair close to Fraser’s crib in the NICU, but later, even when I thought I had made it clear to her that she was not welcome, kept pulling a chair up close to my bed, and confiding, over and over that, yes, my son may walk, may even talk, but he would never cook, never drive, never understand danger, never live independently.

Never, never, never …

The nursing staff occasionally augmented the list of nevers, each having their own take on the matter, but whatever they said, the message remained the same. Your son will need care, will need looking after for the rest of his life.

You, your marriage, and your family will never be the same.

Anthony told me to ignore the ‘never’ talk, to ignore the social worker and let her and everyone else’s negativity run off me like water off a duck’s back. But I couldn’t; I didn’t want to hear the word never or one of its corollaries special needs, disability support services, or respite services one more time.

I wanted to be left alone, to shape my own experience of my son. To pull away the labels, to push away the disturbing mixture of pity and condemnation and feel the warmth of his body against mine, to love him without thinking, without questioning.

I had had enough.

And on the Wednesday morning I took aim.

First, I fed and settled Fraser, then I showered and made myself look presentable. I put on a hint of foundation and as a force de majeure decided to add a touch of lipstick, some fire engine red to my lips.

I waited for Fraser to fall asleep and then headed around to the nurses’ station. I do not remember all of what I said, or how I said it, but I did request the social worker be banned from visiting me. That I had had enough of being exhorted to cry and release my anger. But as calm as I was, I could see the nurse hesitate, so I smiled and reassured her.

I’m just not angry, I told her.

But you do understand your baby has Down syndrome, she pressed. Don’t you?

I paused.

And almost cried.

We’re only trying to help both you and your husband, she continued. Only trying to offer support.

I understand, I replied, making sure my voice didn’t waver. But Anthony and I are resourceful people and if we need support, need to contact a social worker in the future, then we will. You don’t have to worry about us.

If you’re sure then, the nurse replied. If you’re really sure, then I’ll make a note.

Yes, I said. Make a note.

As if, Anthony and I would say to one another in the privacy of our own room, or during late night phone calls — as if we ever needed to be weighed down by such negativity — a negativity that seemed to know no bounds.

The problem was we didn’t feel weighed down by what the staff felt we should be weighed down by. The never talk was their talk, not ours. The anger and disappointment at a ‘flawed’ birth outcome was their anger, not ours. We weren’t looking for anyone or anything to blame.

We felt sad.

Sad for Fraser.

Sad for our family.

But we also trusted our instincts and were determined not to believe all we had been told.

During the first few weeks of Fraser’s life our determination expressed itself in different ways. We kept open alternative explanations, occasionally telling one another the viral tests would prove them wrong. We also lay close to one another at night and talked of our belief in the sheer force of parenting and the capacity of unconditional love. Yes, in our hearts we knew the viral tests were a waste of time, in our hearts we knew what the chromosomal tests would show, but we needed time. Needed to come to our own understanding of Fraser.

Of the life, gently nestled, between us.

Twenty-one years on, and the shock, the heartache and the deep sense of sadness have lifted. More than lifted. And I am incapable of imagining a life without Fraser. Incapable of imagining my life could be better without him.

I love Fraser.

Adore Fraser.

Moreover, I consider it a privilege to have been chosen to be his mother. An honour to guide him into adulthood. However, I would be lying if I said it had been easy. Plain sailing. A walk in the park.

It hasn’t.

When I gave birth to Fraser the medical opinion of the time judged me. From a twentieth-century perspective I, Fiona Elizabeth Place, had given birth to a neonate displaying signs and symptoms of Trisomy 21.

Down syndrome.

My neonate had been judged. Judged less than acceptable. Imperfect and unworthy.

I, too, as his mother had been found wanting.

On that Saturday afternoon I was deemed guilty of behaving irresponsibly during pregnancy; of recklessly giving birth to a newborn whose life was bound to be one of tragedy, constant ill-health and relentless suffering.

To this day my crime has not changed. I still stand charged. What has changed though is that 21 years on I can reflect on the context of my alleged crime. These days I can identify the chill and understand the manner in which Fraser — the manner in which his particular body, his particular face, his particular spirit — has become unacceptable.

Deplorable.

Unpardonable.

I am seen by many as a danger. As having failed to understand the new rules, the new paradigm of successful motherhood. A paradigm offering choice.

Liberation.

My assumed rejection of such values — of modernity, progress and equality — making me unfit, unsuitable as a role model for younger women. The next generation of mothers.

I, however, will not be silenced.

Fortunately, I am not alone.

Not the only woman causing trouble.

Creating mischief.

There are others. Some high profile.

Witness, for example, the outcry in 2008 when US Republican vice-presidential candidate Sarah Palin proudly allowed the public to view the face of her baby with Down syndrome. To see her love for Trig. A baby she had knowingly given birth to.

According to many health professionals, including doctors such as Dr Andre Lalonde, executive vice-president of the Society of Obstetricians and Gynaecologists of Canada, Ms Palin risked derailing the all-important process of prenatal testing and termination. According to Lalonde she risked undoing all the campaigning, all the public health initiatives that have seen Canadian eradication rates rise to up around 80–90% of ‘affected’