Fraser Pollock with his drawing 'Whimsical City'

Portrait of the Artist's Mother         
by Fiona Place   
Spinifex Books, North Geelong VIC 2019

Fiona Place gave birth to Fraser Pollock in 1996. Fraser is now an acclaimed Sydney-based artist. He also has Down syndrome. This joyful and deeply moving book interlaces the many aspects of Fiona's and Fraser's lives to craft a compelling story. It leaves many varied imprints on the heart of the reader. It is not difficult to move through the short chapters, and wonderful lessons are learned through Fiona's skilful storytelling.

The tone is set with that wounding jab from a midwife; “Didn't you have the amniocentesis?” The battle lines are drawn.

In one sense, it is a book about prenatal testing and the pressure to terminate less-than-perfect lives. But then, it is so much more. Ultimately Fiona reveals that prenatal testing and termination are a crucial but hidden element of a contemporary community. The ripple effect from these discrete “simple” procedures is vast in scope and quality.

Yet even her condemnation of the medical profession and much of the wider community, with its “biology as destiny” attitude — a recurring theme — seems generous. Perhaps this is because the unconditional love of a mother for her child was easily a match for that “professional” attitude. Love conquers all; Fraser proves it. 

“High Noon”, by Fraser Pollock 

I loved Fiona's earthy and very real descriptions of pregnancy and birth. She brims with penetrating observations of both herself and others. At the same time, she knows the point at which she can no longer understand another's thoughts and emotions. Without presuming anything about anybody else, her perspective is fully grounded in reality, both emotional and material.

So that when she writes this, I am listening intently:

“I have to uphold my belief it is a woman’s right to abort but it feels sad and deeply ill-advised. Perhaps if Fraser were unable to walk, unable to talk I might feel differently, I might support termination without thought. Without a worry. I don’t know. “

As a writer she is both confident and ambivalent. And as a mother, both capable and vulnerable. Aren't we all?

The birth story, the first chapter, brought me to tears. I recognised those emotions and experiences. Yet what she was put through was galling, particularly the intrusion of the social worker, sitting by Fiona's bed as she recovered from birth, who insisted on lecturing her about all the “nevers” for her son; he would never cook, never drive, never live independently. It was a “disturbing mix of pity and condemnation.” Wanting to be left alone to shape her own experience of her new baby (what a beautiful expression!), she requested that the social worker be banned from visiting her.

But this was just the beginning of what she describes as “a negativity that knows no bounds.”

Her searching questions haunt the book: could prenatal diagnostic services be making some lives, such as her son's, more difficult? Is the increasing medicalisation of women's bodies really about “choice”? She describes in detail the endless demands on mothers to “get it right”, the endless suggestions and opinions that are masquerading as “facts”. The “myth of the subhuman, the substandard” that has been perpetuated through medical opinion. And she speaks with authority; she trained as a nurse and her husband, Fraser's father, is a psychiatrist.

These “choices”, these “facts” that confront women during pregnancy and throughout motherhood are not necessarily signposts to progress. Oftentimes they weigh heavily on women's shoulders and threaten to cut them off at the knees. “So, you've had a mongol?” — this was spoken by a nurse at the baby health clinic. These comments are etched into Fiona's memory. I wondered if Fraser remembered them too.

So when it came to her third pregnancy (Fraser was the second of three boys) the “choices” and “facts” continued to weigh on Fiona as she was forced to consider whether or not to accept prenatal testing. It was a decision she did not want to make. It brought her and her husband to tears. Both parents were highly educated and resourceful, yet tender-hearted and acutely aware of all the contradictions and frailties of the situation.

The unfolding of her identity as the mother of a child with an intellectual disability was like watching a portrait being painted. But the reader has the advantage of hindsight. She fought for her place in the world as a regular mother, and I emerged with a deep admiration for the resilience and courage with which she simply mothered her children. You see, to many outsiders her son's birth was an avoidable tragedy. Some expressed that sentiment openly.

And because it was “avoidable”, Fiona describes that she “felt the need to continually stitch myself back into what it meant to be a mother… this made it extremely difficult for me to find my way into the club known as ‘motherhood'…”

She is at all times real and unpretentious. A low point in her life is described here, and I apologise for the long quote but you will not regret reading it:

“You don’t know what it is like,” I crumpled. “You don’t know what it’s like to have mothers out there who think I brought my difficulties on myself. That I ‘chose’ to have a child with a disability. I do know I do a reasonably good job, an OK job, but it never looks like that. It only ever looks to them like I am a failure. A woman who is constantly struggling, a woman who only ever says no.”

No, I can’t do that, no I can’t join you. I can’t go to the park, to the movies, to the restaurant, to the beach. All I ever say is no. No, no, no …

“I’m always on the outer, always different. And I hate being different,” I whispered, tears beginning to roll down my cheeks, “I just want to be normal.”

 “But I am sure of one thing — I do know my situation confronts other women. That I always remind them of what can go wrong. Of what they’re glad they’ve escaped. And they don’t like me reminding them.” I paused, sniffled and wiped my cheek. “I don’t like always having to play that role,” I told him.

“And it’s made doubly difficult by the increasing availability of prenatal screening. It’s not like having a child with autism or cerebral palsy. No, my having a child with Down syndrome is seen as a ‘choice’. And because I chose it, I don’t deserve any help, any support.”

The book moves effortlessly between themes, sometimes providing a deeply personal narrative, and at other points explaining the science and epidemiology and history of disability. A fascinating history, disturbing at times. She talks about the global feminist movement to resist prenatal testing and the eugenic terminations that are intended to follow it. She pays homage to the resistance movement against the “industrialisation of baby-making.” And mentions, in what I believe is an allusion to a looming crisis for women, that there are many things we could test for and “prevent” by termination: autism? childhood leukaemia? schizophrenia? breast cancer? heart disease? myopia? average IQ? Where does it end?

Yet it is not Fiona's way to criticise. Every time, she offers an alternative. Even at Fraser's birth, she was digging for new streams. She and her husband were searching for the “possibility of some path other than that mapped out by a chromosomal study… We needed a space with possibility, a space with hope.” I think they found it, through the power of unconditional love, and with much perseverance.

It seems, then, a radical understatement when she writes that the way we think about disability as a community directly affects her son, his opportunities, and his life choices. It feels almost trifling when she writes; “I believe it is time we reassess what it means to live with a disability, to critically question the ways in which we portray and understand disability.” That is to put it mildly.

Pro-life advocates would talk about “search and destroy”, eugenic abortions and ableist medical professionals, and I believe this language is appropriate. There’s no space for mildness here. Disability advocates would denounce “inspiration porn” — inspiring stories of people with disabilities who do great things (with the subtle message that those who don't do great things just need to try harder). I waited for her hard-hitting analysis of maternal health policy, disability services, the healthcare industry. It never came. I thought that polemic would have been well justified, given her story. Yet she steadfastly provided a gentle, generous narrative.

In the end, Fiona is not a social critic or policy analyst. Nor is she angry or bitter. She is an advocate for people with intellectual disabilities, and she is a writer and a mother. She doesn’t seem to be “against” anyone at all. In fact her remarkable powers of introspection made her an even more credible witness to the powers that we have within us all, rather than looking outward to blame others. She dares to write about shame and to call us to understand ourselves:

“It is only when we can acknowledge all aspects of ourselves — the good and the not so good – that we can hope to live peacefully, both now and in the future.”

While she laid no blame, I somehow felt a stinging accusation, perhaps unintended by the author. A kind of guilt, maybe, that I have not always used my own powers for good.

Women have great power to affirm and support other mothers. Conversely, we also have the power to tear each other apart. I stood condemned when Fiona wrote: “I was definitely still not fine with the looks of pity from other mothers. Not OK with the way they would give me a wide berth whenever I took Fraser with Angus to childcare. Not OK that most would not even acknowledge Fraser. Not OK about the way my birth outcomes seemed to elicit the worst from many mothers, many members of the wider community.”

Was I ever one of those mothers? Did I avoid, ignore, comment cruelly? Have I been self-absorbed and self-interested, judgmental or pitying? Have I conducted my life merely as an autonomous individual rather than a person in community? Probably yes to all. May there be much forgiveness for women like me who do not have a special needs child and who just do not understand. May we avoid the trap of idolising individualism and “success”.

Individual and autonomous choice is a modern myth. The idea that we are self-contained moral agents is a deception that serves the economy. It does not serve humanity. It is a deception that we use to absolve ourselves of our mutual responsibility, and to blame others for their troubles.

Radical feminists, unlike liberal feminists, are committed to questioning the social context of women's “choices” like prenatal testing, cosmetic surgery, prostitution, reproductive technologies, and so on. Spinifex Press, the feminist publisher of Fiona's book, enables women to authentically tell their stories alongside a robust analysis of the broader circumstances and histories. We are irrevocably connected to everyone else. No woman is an island.

I end this review with a chunk of Fiona's conclusion, so powerful that it deserves quoting.

Perhaps one day Down syndrome will no longer be considered a condition that requires routine termination of a pregnancy. Perhaps one day it will be a considered a condition with which you can bring new life into the world. And not an experience to avoid at all costs.

With advances in medicine I hope there will come a time when our current public commitment to detecting and terminating lives with this genetic difference will be seen as misguided. As a wrongfully exclusive practice. And that the narrative of what it means to have this genetic difference will change, that more hopeful and life-affirming narratives will emerge and the current detect-and-reject narrative will lose its currency.

This is a joyful book. Amongst the difficulties of having a child with Down syndrome, in the end nothing remains but love and joy for her son and her family and her life.

Selena Ewing is a freelance researcher and writer with 20 years of experience in the field of public health, bioethics, and women’s health. She blogs maybe once a year at www.selenaewing.com. 

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Selena Ewing is a freelance researcher and writer with 20 years of experience in researching, writing and speaking about public health, bioethics, and women’s health. She blogs maybe once a year at www.selenaewing.com.