A Different Way of Looking

Jan Gothard, Greater Expectations: Living with Down Syndrome in the 21st Century (Fremantle Press, 2011), 368 pages, $26.95.

It’s uncomfortable, isn’t it. Pudding-basin haircuts, baggy clothes, the special bus. The grandmother who shakes her head every time and says, “If only you’d had the test!” The pity of the neighbours, and the overwhelming relief in their voices as they say to each other, “Thank God that never happened to us.” The little tragedies, the little angels, the little darlings. The child who turned out not to be the child you’d always dreamed of having, and the number of people out there—in your own family, in clinics and schools and hospitals—who agree with you, and who want to make sure that this disaster never happens again.

This new book provides an outstanding insight into the changes that have taken place in the lived experience of Down syndrome since the 1950s. Although its data is taken from Western Australia, there is plenty there that other parents and people with Down syndrome could also relate to anywhere else in Australia, both urban and rural. Jan Gothard has interviewed or spoken to more than sixty people in the course of preparing this book, and almost all of them are pseudonymous. Most schools, hospitals, clinics and other institutions are de-identified, and it is easy to see why: some of these families’ experiences demonstrate the lack of sensitivity, compassion and decency shown to them by staff in publicly-funded institutions in a country with laws specifically forbidding the types of behaviour shown here.

This is powerfully demonstrated by the opening paragraphs on the case of Christopher Derkacz, a toddler with Down syndrome whose foster-mother took him to a Perth hospital in 1979 when he had croup. Within hours Christopher was dead, untreated and not resuscitated, because his life was considered not to be worth saving. The resulting court case showed only too clearly the dangers faced by people with Down syndrome left to the mercy of ignorant and uncaring staff; there is no doubt that Christopher was not the only casualty in the decades-long struggle by parents and families and supporters to have their children taken seriously as human beings.

This book is ideal not only for those who are close to the Down experience, but also for those who know nothing about it—those who grew up in the era of hateful haircuts and shuffling day trips; those who knew only of the “special” bus or the “special” school or the “special” workshop; those who grew up calling these kids (and each other) “spaz” and “slow learner” in the playground. Gothard introduces and deals with these common stigmata early on in her book, signs of difference just as potent as palmar creases and slanted eyes. Down syndrome is a complex phenomenon with different presentations and different potential disabilities, which are briefly and clearly explained by Gothard: just like anyone else, no two people with Down syndrome are alike in their capacity to learn, grow, change and develop.

Parental attitude is also just as critical to the healthy development of these children. Gothard sensitively explores the spectrum of parental responses to their child’s diagnosis and the growing relationship with their child as a well-rounded human being with likes, dislikes and personality of their own. The first and most critical decision parents make is, of course, whether their child continues to live or not. In Chapter 2, “Making Choices”, Gothard is quite frank about the very high rate of termination of pregnancy: between 2004 and 2008 in Western Australia, 90 per cent of all pregnancies where Down syndrome was diagnosed prenatally were terminated. Without that prenatal diagnosis, the figure is lower at 62 per cent, and the remaining 38 per cent are those who were not diagnosed with Down syndrome before birth, or who were diagnosed but were allowed to live.

There are of course no statistics available on the number of these prenatal diagnoses that were inaccurate, although anecdotal evidence suggests that many women who are told at the ultrasound stage that they have a Down syndrome baby, and who choose not to proceed with other invasive tests and to keep the pregnancy, have gone on to deliver perfectly healthy non-Down-syndrome babies. Allowing for the fact that no test is ever 100 per cent accurate, the unintentional loss of non-Down-syndrome children to termination also has to be factored into the equation.

Some parents are able to describe vividly the responses from doctors and nursing staff: an obstetrician who, amazed at a mother’s decision to keep her baby (she was the first he had encountered), promised to “brush up” on caring for a Down syndrome neonate. But he didn’t, and the baby was born with critical heart problems that could have been treated earlier, had he kept his promise. Or there was the delightful obstetrician’s nurse who informed an expectant mother over the phone, “Honey, you’ve got a Downs on board”, and later informed her that if she didn’t terminate, in five years time her husband would be sick of the whole thing and would leave her.

Gothard explores the full range of responses to these difficult situations: mothers unable to tell their other children, who once told are completely unfazed and are instead excited and accepting; unsupportive husbands who are now their Down children’s biggest fans. She speaks also to parents who had their Down child in the days of institutionalisation, and of their battles to keep their child at home. The Slow Learning Children’s Group formed in the 1950s began the drive to keep their children at home or in alternative accommodation to Western Australia’s notoriously overcrowded Claremont Mental Hospital. 

The message of Gothard’s book is overwhelmingly positive: this is do-able; this is a child you love, and who loves you; there are all sorts of possibilities and potential ahead. Some mothers were told their child would not breast-feed, only to find to their delight that this was completely untrue. Another distraught mother saw a psychologist who unwittingly put her on the path to recovery:

He said, “I do have a group of mothers who live their grief and they wallow in it and they socialise with other women who are in it and that’s how they want to be.” I just thought well, I don’t want to be there.

One parent in the USA has used the analogy of planning a trip to Italy but ending up instead in Holland—not where you planned to be, but not such a bad place, once you get over the initial shock. Parents in Gothard’s book also speak candidly about subsequent pregnancies: to test, or not to test; and if tested, what they would have considered in the event that they were having another Down syndrome child.

The patronising attitude to “little darlings” and “angels” is also quickly laid to rest: Gothard’s informants with Down syndrome are articulate and lively, and the parents have no illusions about their children’s ability to be as naughty as the next child or teenager. In Chapter 3, “It’s Not a Disease, You Know!”, Gothard provides accessible information on the various medical conditions which children and young adults with Down syndrome may be more prone to, while at the same time exploding the myth that all Down syndrome people will live short, sickly and burdensome lives, with heart trouble, breathing difficulties and weight problems. One couple were overwhelmed with the medicalised negativities:

We were presented with a file and a list of about 362 medical things that could go wrong and we just shut it again … we thought, at some point, that we might open it again later when we felt stronger, but I don’t think we ever did!

Some of this comes out of a self-righteous clinical culture that punishes people for having a Down syndrome child when they should have chosen to terminate the pregnancy; some of it is actually well-meaning. Either way, it can be overwhelming, but Chapter 4 follows up on this with an outline of existing support services, identifying their strengths and weaknesses.

Chapter 5, “Learning to Be Normal, Learning to Be Disabled”, on the gradual integration of people with Down syndrome into the state and private education system, is absolutely fascinating. Gothard has captured the off-the-record conversations with teachers and principals that made it clear that certain children were not welcome in certain schools, and how they would be treated if the parent made a case of it and complained to the Education Department. Anyone who has had a child with a learning difficulty of any kind will be only too familiar with some of these conversations and the need to search long and hard to find the right school for their child’s needs. Some families interviewed by Gothard have used home-schooling as a supplement to or substitute for regular schooling, with excellent results.

Having survived prenatal screening and the various difficulties in accessing decent education, what happens when a person with Down syndrome makes the transition to young adulthood: the workplace, independence, love and relationships? In Chapters 6 and 7, “School’s Out” and “We’ve Got to Outlive Him!”, Gothard addresses the myth of the “perpetual child”, and speaks with people with Down syndrome who are living independently, working, mobile and healthy. But there are other families less well off, and some who still dread their child outliving them, or becoming a “burden” on others.

One of the outstanding strengths of this book is that Gothard has spoken to people living all over the state—in remote areas, in country towns, and in indigenous communities. In some ways, the remoteness of a community can be a help, as there is less interference and if there is a large family, more obvious support. But for most families, the distance from good quality medical support and education and employment opportunities makes life harder than it should be.

Most people living in remote areas would tell you that this is true for them as well, not just for families with a Down syndrome member. Gothard has a gift for demonstrating that a person with Down syndrome actually faces much the same challenges as anyone else, and this is consistent throughout the book. Any child going to a new school, or leaving home for the first time, faces these agonies; again, when a child is sick or suffering, or when they lose their job or break up with the love of their life.

Life expectancy for people with Down syndrome (that is, the 38 per cent who are allowed to be born in the first place) has increased dramatically over a relatively short period, but social acceptance has not yet caught up. Gothard illuminates the double bind in which so many people with a mental illness or disability find themselves: they want to integrate, but find it hard to form lasting friendships with “normal” people. So they tend to congregate with others who are on their level—ghettoising their relationships until they either become very lonely and isolated in the community, or are effectively reduced to relating only to other people with the same difficulties as themselves. Such mini-communities may be safer and more enjoyable for many people with Down syndrome, but they can also be profoundly limiting.

Cultural differences can be equally problematic. “Sunil” is unable to tell his family in India that his teenage daughter has Down syndrome:

I grew up in a community of Muslims, Hindus, other people. But anyway, all these people have got one thing in common. If something’s wrong with your child, my child, his child, her child, it’s God’s curse on you. I’m not arguing the Australian perspective, I’m not arguing what’s wrong or right, but arguing my point of view from my Indian background.

Sunil’s daughter has in fact visited the family in India three times, but he has explained away his daughter’s quietness as being due to shyness. This may seem incredible to Australian readers more familiar with Down syndrome, but children are highly disposable in India, either through abortion or abandonment, and his family may simply have never seen a person with Down syndrome before.

Sunil identifies an “Australian perspective” which is comfortingly different, and yet other parents found that no matter how Australian their background, someone was looking to blame them for their child’s disability: comments like “Oh well, you know, we haven’t had anything like that in our side of the family” were especially irritating. The high abortion rate is no surprise: any family which allows itself to be burdened by what other people think, which believes what they see on television advertisements, which is obsessed with physical perfection and the acquisition of as much wealth as possible, will not be happy with a child with Down syndrome. It is also no surprise that the mainstream schools where these children suffered the most were not what the English would call “bog standard” government schools, but the all-girl private secondary schools, where standards of materialism and physical perfection reign supreme (I know; I went to one, and I didn’t even have Down syndrome—and nor did anyone else at that school).

Gothard’s book is an invaluable introduction to the lives and loves of people with Down syndrome, without any sentimentality or pseudo-spirituality. She also provides some pointers for a manifesto towards improving opportunities even further, and for having, as the title suggests, “greater expectations”. The people with Down syndrome who Gothard has interviewed simply do not see it as a problem; they know it exists, but for them, it does not exist—rather, they exist. Gothard’s daughter Maddie, who has Down syndrome, knows that she has it, but simply sees it as the reason she needs a bit more help to get where she is going. It is, as Gothard says, simply a different way of looking.

Philippa Martyr is a historian. She is currently writing a history of Claremont Mental Hospital, Western Australia, and is a regular contributor to Quadrant.