When responses to a TV documentary range from heartfelt applause to critical commentaries in The Guardian, you know a significant cultural nerve has been struck.
Such was the reaction to A World Without Down’s Syndrome?, a BBC Two documentary about Down’s syndrome and the ethics of the likely introduction of prenatal chromosomal screening. Fronted by Sally Phillips, best known as Bridget Jones’ mate ‘Shazza’, the documentary features her son, Olly, whose Down’s syndrome was discovered after birth. Phillips, who converted to Christianity as an adult, told Premier Christianity magazine (‘Profile’, July) that her son has taught her about the “topsy turvy topology” of the kingdom of God who “uses the weak to shame the strong” and “promises to frustrate the intelligence of the intelligent”.
In the programme, Phillips spoke with a variety of people connected with the Down’s syndrome community. Along with health professionals and consultants, she also met with parents of children with Down’s syndrome. Phillips interviewed one woman, Kate, who decided to abort her 25-week-old child after receiving a positive test result for the condition. After a tense conversation with Kate describing her late-term abortion, the actress reflected, “Kate didn’t want a child like mine.”
The Christian Response
Phillips’ personal and emotionally vulnerable approach to the documentary received widespread praise from the Christian community. Many expressed their admiration for the actress using her platform to highlight the inequality that exists in the womb for those with disabilities (See, for example, David Robertson's ‘In My Opinion’ column on p15).
Writing on the Premier Christianity blog, executive director of Right to Life Peter D Williams noted that the documentary reminded a generally uniformed public that terminations are permissible (under section 1(1)(d) of the Abortion Act 1976) up until birth for children with a substantial risk of being “seriously handicapped”. He likened such an abortions to “euthanasia in utero”.
The Secular Response
Phillips’ clear emotional investment along with her desire for a public debate around the introduction of prenatal screening caused Jane Fisher of Antenatal Results and Choices to tell The Observer, the programme “risks offering the suggestion to those who have [decided to end a pregnancy] that they have made the wrong decision”.
The Guardian’s Hadley Freeman responded, “Sorry, Sally Phillips, but a woman should be able to know if her unborn baby has Down’s syndrome. A woman’s right to terminate a pregnancy is non-negotiable.” Although Phillips identifies as prochoice, she nevertheless reflected in the programme on her own lack of choice in giving birth to Olly, saying: “That made me wonder whether choice is always the wonderful thing it’s cracked up to be.” Such statements have made commentators such as Freeman question Phillips' pro-choice credentials.
Meanwhile, in the MailOnline, the controversial columnist Katie Hopkins accused Phillips of portraying parenting a child with a chromosomal abnormality (Hopkins is such a parent) as “sugar-coated with gaping holes in the story”. She described Phillips as “cowardly” for not addressing the issue of who will look after her son once she dies.
The documentary was released within the context of the Don’t Screen Us Out campaign which calls for a delay in implementing the cell-free DNA (cfDNA) test, a non-invasive prenatal test for Down’s syndrome, until a formal enquiry be undertaken to ensure that it is fully compliant with disability rights standards.
Since Iceland’s introduction of the cfDNA test for Down’s syndrome, the country’s abortion rate of babies with the condition is 100 per cent, effectively eliminating the Down’s syndrome community altogether. According to research, in the UK, 90 per cent of babies with Down’s syndrome detected prenatally are aborted.
Phillips’ fear is that, as in Iceland, the Down’s syndrome community will cease to exist altogether if the cfDNA test is made available and misinformed public perception of what it means to live with Down’s syndrome continues to be promoted.
"In The Uk, 90 Per Cent Of Babies With Down’s Syndrome Detected Prenatally Are Aborted"
Refusing Testing
In the documentary, Phillips meets with Emma, the mother of Scarlett, who has Down’s syndrome. At the time of filming, Emma was pregnant with another child. She explains to Phillips that despite the assumptions of her midwife, she has decided to not undergo the current test available for Down’s syndrome. This is to “protect” herself from medical staff who she believes are pressuring her to terminate. She describes a “lack of understanding” among doctors regarding what it means to have a child with Down’s syndrome. Phillips echoes this as she reads through the NHS leaflets given to women upon diagnosis. The leaflets list the possible health complications associated with having Down’s syndrome. Phillips believes that these leaflets make expectant mothers “frightened” and admits, “For me, Down’s syndrome is much more than the list of potential health problems, but that’s because I know Olly.”
What is cell-free DNA testing?
Cell-free DNA (cfDNA) testing looks at the natural breakdown of foetal cells in the mother’s blood. During pregnancy, cfDNA can identify the increased presence of chromosome 21. This test can accurately predict whether the unborn child is likely to have a chromosome condition such as Down’s syndrome.
True Equality
Although her Christian faith goes unmentioned in the documentary and Phillips’ arguments against the cfDNA test are not faith-specific, some critics have accused her of having a religious agenda. Knowing that her viewpoint would be interpreted as anti-choice by many, it was a brave decision for the comic to stand against the tide of popular opinion. In Phillips’ own words, the documentary is “a film that asks the question – what kind of society do we want to live in?”. In an age where equality and diversity is firmly encouraged within our culture, there is a strange irony about the drive towards eliminating the Down’s syndrome community altogether. In doing so Phillips believes we lose something important that people like Olly offer, saying, “I really think that he is more like God’s picture of how we should be. I feel we’re being specifically blessed through his difference.”
