The upside of life with a Down’s child
Parenthood has been different for comic actor Sally Phillips, she tells Elizabeth Day, but, in many other ways, it has been better
Shortly after Sally Phillips gave birth to her eldest son, Olly, 12 years ago, she was taken into a small room in the hospital and asked to sit down.
“The doctor said, ‘I’m so sorry,’ and the nurse cried,” Phillips recalls. “And it was really clear that this was breaking bad news.”
She and her husband, Andrew, were told that Olly had Down’s Syndrome. It came as a complete surprise. None of the prenatal tests had picked up on it. Phillips “just sort of compliantly went along with the way the story was presented to me”. Later, they took their newborn son home in a kind of fog. “You go home to deal with the ‘bad news’, and you have friends and family who come round and get drunk and talk about the ‘ bad news’, and it’s all like something dreadful has happened,” she says. “And something important has happened, and you’re going to have to let go of some of the dreams you had, but it’s really not as bad as everyone makes out.”
Most of us know Phillips as a comic actor who rose to prominence as one third of the all-female sketch show Smack the Pony, before gaining lead roles in the hugely popular BBC sitcom Miranda and the Bridget Jones films. In Bridget Jones’s Baby, out now, she’s back as Bridget’s best friend, Shazza.
But Phillips also has a serious side. Next week, the BBC will air her onehour documentary, A World Without Down’s Syndrome?, which she cowrote and presents. The programme examines the issues around the condition with intellectual rigour but is also extremely moving, largely because of her decision to include Olly in the film. He emerges as a chatty, engaging and kind little boy who often has his younger siblings, Luke, nine, and Tom, four, in hysterics.
When she told her younger children their older brother had Down’s Syndrome, Luke responded: “And have I got Up Syndrome?” says Phillips. “And then to Tom, I said: ‘You have to understand, sometimes Olly doesn’t understand and he gets angry.’ And Tom said: ‘What, like Dad?’ ”
After the initial teary conversation in the hospital, she was expecting tragedy. Instead, she got comedy.
“I suppose I always like absurd scenarios,” she acknowledges. “I just started noticing that it was funny. So, for example, when Olly ran away wearing a Leo Sayer wig and outsized sunglasses in the shape of stars and you’re chasing him down the road barefoot, it’s: ‘OK, this isn’t that different from work...’ I mean, he’s got great comic timing. He’s naturally incredibly funny. Always has been.”
Of course, Phillips and her husband were often intensely stressed or in denial during those first five years. And yes, it took a period of adjustment. Naturally, it wasn’t exactly what they had expected parenthood to be, and sometimes it required help from live-in nannies and grandparents (something which, Phillips admits, she is lucky to be able to afford). But, in other ways, it was better.
Phillips began to realise she was “laughing more than anyone else. I remember being on a bus hearing mums with babies with prams just complaining and thinking, ‘We’re not doing any complaining and not because we’re heroes.’ I can’t really explain why. Maybe it’s the release of not having an end-game. You’re off-road so you’re completely liberated from all the things the Hampstead mums around you are doing.
“The irony that struck me was that with Olly, we were doing speech and language therapy and physiotherapy, but all those mums were doing that anyway. But it wasn’t called therapy, it was called “baby signing’’ because the quicker your child learns to talk, the better chance they have of getting into a good school. We were all doing the same things, it was just that we had to do it. But it was in no way tragic.”
She wishes, looking back, that the doctor and the crying nurse who told her about Olly’s diagnosis could have been more positive. She is a Christian, a feminist and firmly prochoice, but says: “I think I would have been really served by having someone around standing up and saying, ‘This is a good thing.’”
This lies at the heart of Phillip’s documentary. In January, it was announced that the NHS would be offering a Non-Invasive Pre-Natal Test (NIPT), which is said to detect Down’s Syndrome in pregnancies with 99 per cent accuracy. The rolling-out of the test to women whose babies are at high risk of
‘Olly’s got great comic timing. He’s naturally incredibly funny. Always has been’
Down’s means there’s a distinct possibility that, in the near future, the only children born with the condition will be those whose parents have explicitly chosen that fate. “And that has ethical implications,” says Phillips, “as to whether the government supports [the costs of raising a person with Down’s] or not because it’s kind of: ‘It’s your bed, lie in it.’”
She was shocked to find that not everyone she encountered believed people were born equal. Instead, “We are working out the value, the cost of a person. Is there a point where we become too expensive [to look after]?” It’s a profound question which comes at a time when people with Down’s Syndrome can expect better health, life expectancy, wellbeing, education and employment opportunities. Olly is at a mainstream secondary and thrived at an integrated primary school.
“I think in terms of fighting for Olly or making sure Olly’s needs are being met, you just don’t do it all the time,” Phillips says. “It’s a bit like going into labour: if you had contractions all the time, it would be unbearable but the contractions come every few minutes so there’s rest. So there’s a lot of fighting and negotiating in reception and Year 1 and then everything was in place and it was a fantastic school… so I could just relax.” The bigger point, she says, is that although Olly might not go to Oxford University, as she did, this is not the only metric of achievement. In other ways, he far outstrips the rest of us. “People aren’t fascinated by the things people with Down’s Syndrome can do better, which are: relate to people, be funny, be comfortable in their own bodies.”
Phillips has just returned home to Richmond, south-west London, after three days away filming. She broke her metatarsal at the Edinburgh Fringe and her foot is still in a frightening-looking contraption. “This morning he came in to give me a hug in bed and said, ‘How’s your foot, Mum?’ The other [children] had forgotten about the foot. I think people with Down’s Syndrome in general are specifically gifted relationally.”
Phillips goes on to tell a story about how, a few years ago, new next-door neighbours moved in. They had twins who Olly wanted to play with. Every morning, he would climb over an 8ft fence to sit in the their garden in his underpants. “In the short-term, that’s utterly shaming and horrific,” she says. But then, with the ice broken, the families got to know each other. Now there are ladders on the fence and “the kids come and go. It’s great. The end result is we are closer, we have a lot of laughs.” The debate about Down’s, thus far, says Phillips, has “either been non-existent or rubbish”. Perhaps, then, the best way to start breaking down barriers is by putting up a ladder against the fence, just like Olly did.
‘I think I would have been really served by having someone standing up and saying, “This is a good thing”’