The actor Sally Phillips, who plays Shazzer in Bridget Jones and who you’ll also know from everything, from Alan Partridge to Miranda to Smack The Pony, has three sons. The oldest is Olly, who’s just turned 12. Olly is witty and hilarious, taking after his mother. “He’s funny, very caring and properly good at table tennis and basketball,” is how Sally describes him. “He loves swimming, dancing, painting and his Now That’s What I Call Music collection; his favourite thing is meeting his mates for an ice cream and chat.”
Olly also has Down’s syndrome – and Sally is very worried that, with new antenatal tests for Down’s being rolled out, children like Olly might be “screened out” of our society before they are even born.
She has devoted much of the last year to making a documentary, A World Without Down’s Syndrome?, which airs on BBC2 this evening.
In the film, Sally meets some of the world’s leading doctors as well as Down’s syndrome advocates, like Karen Gaffney and Hayley Goleniowska, and asks where the latest advances in antenatal screening might be taking society.
Having written on the subject before, and as the mother of a child with a genetic condition myself, I was intrigued to watch a preview of the film and speak to Sally afterwards about her experience in making what turned out to be a very personal film.
“It was great to think about what it means to be a special-needs family and to meet my community,” Sally told me. “But, emotionally, it was incredibly hard, having to engage in the fact there are a load of people who think it would be better if my child hadn’t been born.”
Sally’s film will make you cry. It will also make you laugh out loud from the start, when Olly douses his mother in paint in a scene of unbridled family chaos. And it will make you think.
Ninety per cent of pregnant British women whose unborn babies are found to have Down’s syndrome have abortions – and yet we live in an age where people with Down’s syndrome can expect to lead fulfilling lives.
In the UK, traditional antenatal screening involves a nuchal translucency scan and blood tests at the end of the first trimester. Pregnant women are told their baby has either a low or high probability of having Down’s. Those with a high probability are offered CVS or amniocentesis – invasive diagnostic tests which carry a small chance of miscarriage.
NIPT (Non-Invasive Prenatal Testing), now widely available privately and currently rolling out across the NHS, can identify an unborn child with Down’s syndrome with far greater – almost 100 per cent – accuracy, using a simple blood test. The much-trumpeted benefit is that fewer women will be offered invasive tests and so there will be fewer miscarriages.
But what effect will NIPT have on abortion rates for Down’s? Medical experts say the jury is still out, but campaigners like Sally are worried that, because more babies will be diagnosed antenatally with Down’s, more pregnancies will be terminated. In her documentary, Sally reports that such terminations have already risen by a quarter among women having NIPT in private clinics.
It was incredibly hard, having to engage in the fact there are a load of people who think it would be better if my child hadn’t been born
Sally herself accepted the usual antenatal screening when she was pregnant with Olly and was given a one-in-10,000 chance of him having Down’s. “I didn’t find out during pregnancy – and I wouldn’t have terminated anyway,” she told me.
Sally believes people with disabilities “have extra things to add to society” – for example, “the people with Down’s syndrome I know have an elevated ability at interacting and have an emotional ability above their age for making friends, while someone with Asperger’s may be particularly good at creating systems.”
She adds: “Children with Down’s weren’t allowed in mainstream school till the late 80s – adults were kept in institutions. Now we’re beginning to understand how to educate people with Down’s syndrome. Who knows what Olly will achieve? In America, where they’re much better at implementing therapies, people with Down’s syndrome are running restaurants.”
Sally describes herself as a feminist and is pro-choice. One of the most intense scenes in the film occurs when she has a very honest, mutually compassionate discussion with a mother who did plenty of research before ending a pregnancy after her baby was found to have Down’s.
Down’s syndrome campaigners do not judge the 90 per cent of British women who make this overwhelmingly difficult decision. But they wish there was more accurate and unbiased support available for prospective parents. For instance, shouldn’t NHS leaflets use phrases like “chance of Down’s” rather than the scary-sounding “risk of Down’s”? On Facebook, Sally says, “people have posted horrifying stories on my wall of recent pressure from medics… one woman was rung nine times by medical professionals urging her to terminate.”
“Down’s is the bogeyman of the pregnancy manual,” she says. “But once you have your child with Down’s syndrome, it’s really fine – there’s no need to make such a fuss about it.”
Sally found, in her research, that screening for Down’s started because it is a relatively easy condition to screen for, rather than because people with Down’s or their families have terrible lives (the evidence is to the contrary). She’s concerned about the profits private companies can make from NIPT. “No one seems to be in charge of the ethics,” is Sally’s conclusion.
It’s a controversial issue and Sally is anticipating trolls and negative comments after the film airs. “I don’t care for myself, but I care for Olly,” she told me.
As one of the highest-profile members of the Down’s syndrome community, through making her film Sally has become an unofficial figurehead for the grassroots parents’ campaign to rethink antenatal screening. She is a powerful and passionate advocate. And bringing the issue into the mainstream, with a BBC documentary, could be a watershed that changes the way people think.
In the film, Sally visits Iceland, where 100 per cent of known Down’s syndrome pregnancies are terminated. Sally is afraid Britain could end up the same way. “I’m worried we might be gambling with society’s diversity,” she says to the camera. “As our powers of choice get greater, who are those people society might leave behind?”