Why Do Words Matter? Challenging the Language of Diagnosis {guest post}

Rebecca is the kind of woman who makes the decision not just to ‘cope’ through challenges, but to face them with resilience and positivity and embrace the transformative impact they have on her life. She is a woman I have long admired and I always appreciate her pragmatic and thoughtful views, as well as the proactive work she does in making a difference in the lives of those around her, especially in the Down syndrome community. I am also blessed to be able to call her a friend x 

Over the last few years our capacity to test for genetic conditions such as Down syndrome before birth has exploded. We now live in a world where a simple blood test can be used to screen pregnancies for conditions such as Down syndrome, Trisomy 18 and even chromosome microdeletions. This explosion in scientific capacity has unfortunately not been backed up with a similar increase in people’s understanding of disability and the modern reality of life lived with Down syndrome or other chromosomal conditions.

A quick glance at some of the discussions being had in online pregnancy support groups around testing shows that results are met with an extraordinary level of fear. Very few people seem to have been made aware that testing isn’t compulsory. Many have been given no information to help them inform their decision of whether testing is right for them or to help them think through what they might do with the results. Reading the comments on social media on articles about Down syndrome equally exposes a world of stereotypes, misinformation and attitudes that have more place in 1950 than in our modern day. Words like ‘burden’ and ‘suffer’ abound with the moral imperative presented that prenatal testing should be used to avoid the ‘unnecessary suffering’ of both the baby and the family into which they are born as well as the ‘burden on the tax payer’ of a life lived with disability. The discourse that counters this – of the constantly happy angel sent down to walk amongst us – whilst well-meaning, also unfortunately reinforces many of the very outdated stereotypes about people with Down syndrome, undermining their strengths and sending a message about the limits of their potential. This stereotype also, no doubt, adds to the fear of many pregnant women who question why they would be chosen for such a heavenly task. It certainly does little to provide an accurate picture to women of the life they may face if their child does have Down syndrome.

The word ‘risk’ has been used very heavily in prenatal testing. Tests have been marketed as providing an indication of the ‘risk’ that a baby might have Down syndrome or another genetic condition. Results are provided in terms of a ‘risk’. The problem with this is that the term ‘risk’ is so loaded with negative connotations. Risk is a word that comes with a very strong judgement – no one talks about the risk that they might win a lottery. Risk is something we use to describe the most terrible events in life – death, disease and accidents. Using a term like ‘risk’ to market a test and then to describe the results of this test screams that the test is there to indicate another of these terrible life events. The word harks back to the times of institutions, when Down syndrome was seen as something to be hidden away, with parents advised to forget their children and move on with their lives.

A recent complaint to the Anti-Discrimination Commissioner in Tasmania focused on the use of the term ‘risk’ to describe the probability that a baby will be born with Down syndrome or other chromosomal condition. The Anti-Discrimination Commissioner found several potential breaches of the Act, including:

• Direct discrimination against people with Down syndrome on the basis of disability in connection with provision of facilities, good and services;
• Direct discrimination against associates of people with Down syndrome on the basis of association with a person with disability in connection with provision of facilities, goods and services;
• Conduct that is offensive humiliating, intimidating, insulting or ridiculing of people with Down syndrome and their associates on the basis of disability in connection with provision of facilities, goods and services
• Incitement to hatred, serious contempt and/or severe ridicule on the basis of disability, and
• Promoting discrimination and/or prohibited conduct.

As a result of this, the Royal Australian and New Zealand College of Obstetricians and Gynaecologists (RANZCOG) is in the process of voluntarily revising its prenatal screening guidelines and other associated documents to use unbiased, inclusive language. The loaded term ‘risk’ is being replaced by the neutral term ‘chance’ and ‘abnormality’ by ‘condition’. These changes are an important step forward in the conversation around prenatal testing. Similar changes are being seen across the prenatal testing industry.

For most women, their first exposure to Down syndrome will be through prenatal screening. The first time they ever think about Down syndrome will be when a highly knowledgeable health professional uses the term ‘risk’ to talk about the chance that their baby might have Down syndrome. In traditional nuchal fold testing a ‘high risk’ result for Down syndrome is considered to be where a test comes back saying the chance of the baby having Down syndrome is at least 1:300. Usually in exactly the same conversation a discussion will then be had around the use of invasive testing procedures such as CVS and amniocentesis to confirm the diagnosis of Down syndrome. These invasive procedures themselves carry probabilities of miscarriage in the order of 1:100 to 1:200, considered to be a ‘slight risk’ and ‘small risk’ of miscarriage respectively. So in the same conversation women are presented with language that clearly conveys that having a baby with Down syndrome is a significantly worse outcome than having their wanted baby miscarry. It’s no wonder that the level of terror inside pregnancy support groups is so high when right from the start the message is sent that Down syndrome is so terrible that it’s significantly worse than death.

Women are supposed to be provided with unbiased, up-to-date information to support their decision to screen, to undertake invasive diagnostic tests and then following a prenatal diagnosis of Down syndrome. Good quality information is fundamental to any concept of informed consent. The situation is often made worse by doctors who presume that termination is the only reasonable decision or the only reason someone would undertake prenatal testing; who push parents to make decisions very quickly, while highly emotionally fragile, without being adequately connected to people who have lived experience with Down syndrome; or who fail to provide good quality information about the modern reality of life with Down syndrome. Whether you are pro-choice or pro-life it is clear that a decision made under duress with poor quality information, informed by emotive and outdated language such as ‘risk’, ‘suffer’, and ‘burden’ is not an informed choice. True choice requires real understanding and knowledge. It also requires allowing women the time and space to make a decision, and to present them with all the options including adoption.

I’ve read lots of comments lately saying that obstetricians have an obligation to ‘tell it like it is and recommend abortion’. Actually no – they have an obligation to provide a diagnosis using unbiased language. They have an obligation to provide you with up-to-date, accurate information on the condition being diagnosed. They have an obligation to refer you to your local support groups if that’s what you want. They have an obligation to help you make an informed choice. And they have an obligation to provide you with high quality pregnancy care regardless of any condition your baby has. Whether you’re pro-choice or pro-life is irrelevant. There is no choice without unbiased information to inform your decision – that’s coercion.

Compare the feelings evoked by two different ways of delivering results from prenatal testing – ‘I’m sorry, I have some bad news, your baby has a high risk of Down syndrome. I can book you in for a termination next week’ with – ‘Your results are back. Your baby has a high chance of Down syndrome. Here is some up-to-date information on Down syndrome, here are some really good web sites. Would you like me to put you in touch with your local Down syndrome support organisation? They will be able to arrange for you to talk to another family if you’d like. Take your time, come back to me with any questions and then we can talk about where to from here’. Unfortunately I hear all too often about women who had the first experience and who were placed under enormous pressure to justify their decision to continue with their pregnancy.

If you’ve terminated a pregnancy because of a Down syndrome diagnosis I’m not judging you. I would ask you to think about which conversation your doctor had with you. Did you feel supported? Were you given up to date information to support you in making a decision? Were you pressured into making a decision quickly? How different might your decision have been if you hadn’t been put under immense pressure when you were in a vulnerable position? Maybe it would have made no difference to you in which case you no doubt made the right decision for you and your family, but it may well have made a difference to another woman in the same position.

Finally for many people like me, who have children with Down syndrome, for my son and other people with Down syndrome, terms like ‘risk’ and ‘burden’ and ‘suffer’ are deeply offensive. These words scream that other people think my son’s life is somehow less than theirs, less than mine. That it’s something to be avoided at all costs. The deeply patronising assumption that underpins so much of society is that life with a disability is in some way less than life lived without. This assumption runs very deep and it’s very hard to shake (ask yourself how many times you’ve heard someone say they’d prefer to die in an accident than live with a disability and you’ll realise how pervasive this attitude is). My son is no burden. He’s a delightful little boy, he’s happy and affectionate. He embodies courage, perseverance, strength and kindness. To describe the chance that you’d have a child like my son as a ‘risk’ is just wrong. Simply using a word like ‘chance’ instead of ‘risk’ is a major step in the right direction. Words really do matter and we need to make sure that the words being used reflect the realities of a life lived with Down syndrome. It would be a terrible thing if fear and ignorance rob us of a community that includes people with Down syndrome and other chromosomal conditions. These are great people who have a lot to contribute to our society. Certainly having our son and knowing so many people in the Down syndrome community has greatly enriched our life.

You can read more about the changes to the language used in delivering prenatal test results in this ABC news article.  

Rebecca lives with her husband and three children in Tasmania. She is an environmental scientist who enjoys the many benefits of working from home, including spending most of her days wearing ugg boots and being interrupted frequently by little people. She also enjoys the luxury of a full-time stay at home husband who’s handy in the kitchen and takes control of the mountains of washing generated by her family every week. In her spare time she is the Vice President of Down Syndrome Tasmania and is enjoying taking on a variety of volunteer roles to support families of people living with Down syndrome.

Rebecca has written two other guests posts on Mummalove, which you can read here and here.