Sally Phillips, one of the stars of Miranda, Bridget Jones and Smack the Pony, made the BBC documentary ‘A World Without Down’s Syndrome?’ last year. She wasn’t anticipating the backlash it provoked, she tells Katie Jarvis
Sally Phillips and Henny Beaumont will be discussing ‘Living with Down’s’, on May 21, from 3-4pm as part of The Bath Festival; thebathfestival.org.uk
Sally Phillips is giving me 99.9 percent of her attention. Which is impressive in the circumstances.
“Olly! No, no, no, no, no… Thank you…” she says, during the .1 percent when she’s unable to focus on our phone conversation.
Her three boys are off school, ill, and I’m picturing her, telephone in one hand (or maybe balanced on her shoulder, now I come to think about it.) And, with the other hand(s), she’s sorting out… what?
Could be anything.
Olly, her eldest, once saturated the kitchen in icing sugar as a “yummy surprise” for her. (He was 50 percent correct.)
Turning on taps – that was another. “He enjoys movies; and he particularly enjoyed the opening sequence that appears in the Paddington trailer, where Paddington floods the bathroom.
“And there’s a bit in the film Up, where the house gets caught in a storm as it’s flying to Venezuela. Olly tore his room apart, imagining it was in a storm.”
So that’s Olly, 12. There’s also Luke, nine, and Tomas, five.
“OK, guys, stop. Stop. STOP! Stop. I think you two need to go to school. You’re looking well enough… OK, well calm down, then.”
But particularly Olly.
We fell for him, in the BBC documentary Sally made last year, with his wide smiles and good-natured humour. We fell for him as he was filmed racing around the family garden - closely followed by his brothers - squirting huge splodges of blue paint on anyone foolish enough to get in range. And telling knock-knock jokes that nobody quite got but everybody found uproarious. Because it’s Olly.
Olly, who has Down’s syndrome.
When Sally and her husband, Andrew, were told, soon after Olly’s birth, the doctor said, “I’m so sorry”, and the nurse cried.
Even now, when Olly is so completely Olly, some people choose to focus on the extra chromosome that Chance inserted when his baby cells were dividing.
“I get asked, ‘Didn’t you know?’” Sally says.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Sally Phillips isn’t daft. Top comedy actress (Tilly in Miranda; potty-mouthed, chain-smoking Shazzer in Bridget Jones; a star of the ground-breaking Smack the Pony comedy sketch show); a first in modern languages from Oxford. Which is why she wasn’t at all keen, at first, on being the documentary-maker behind last year’s A World Without Down’s Syndrome?
She was worried about the effect it would have on the family, for one.
“But, actually, in terms of the family, it’s been really positive for us. Well, for the kids. My husband didn’t like it because he didn’t get enough attention. He was neglected,” she half-humorously harrumphs.
“But, for Olly, I noticed that before we did it, he had a very negative view of his Down’s syndrome – it’s his difference and he didn’t like it.
“Afterwards, he said he liked his Down’s syndrome because it meant he was good at things like dancing. Because we saw places such as Foxes Academy [a specialist training college in Somerset], and shows performed by people with Down’s syndrome. Olly is in mainsteam education, the downside of which is that you don’t have a sense of your culture; it is slightly ugly-ducklingy. And then you find your people and you go, ‘Oh, actually, I’m just different!’ And so, from that perspective, it was really good.”
And partly because the subject is such a contentious one.
By making a documentary about something so close to her heart, she opened a massive can of worms for herself.
“Yeah,” she agrees. In a way that makes ‘yeah’ a very big word.
“Yeah.”
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Where to start on this huge, huge subject? A subject that says as much about being human as it does about pre-natal testing. Or disability rights.
Maybe here.
There’s a new, non-invasive, prenatal blood test on the market – already available in some private clinics, and planned for the NHS next year – called NIPT. It’s revolutionary because it offers more than 98 percent accuracy when it comes to identifying Down’s syndrome during pregnancy; what’s more, there is no risk of miscarriage. In anybody’s books, that’s a big scientific leap forward.
But a test is a test. What a test doesn’t do is sit you down and explain exactly what the future will look like if you go ahead with a birth. Because it just doesn’t know.
What it certainly doesn’t do – and what Sally wanted to do – is to posit the idea that having a Down’s syndrome baby might not be a disaster. That children such as Olly can be a joy and a positive in lives that would be impoverished without them.
That a doctor saying, “I’m so sorry”, and a nurse crying isn’t a balanced introduction to the world of different abilities.
“There was this day, before the documentary came out where, on every single local radio station, we got a family with a child talking about their experiences,” Sally says. “The general message was: It really isn’t the end of the world. Why are we acting as if this is smallpox? Because this isn’t smallpox; this is a human being. This is a type of person.”
Down’s syndrome is a chromosomal disorder that leads to a degree of developmental disability, along with other, physical problems. It occurs totally at random: in every social class, every different location, to people of every point of view. To strict Catholics and to extreme pro-choicers.
What the statistics tell us is this. In the UK, nine out of 10 people who discover that their baby would be born with Down’s syndrome will abort. In Iceland, all women who receive a positive diagnosis terminate the pregnancy.
An increase in test accuracy and efficiency will almost certainly lead to more abortions, Sally argues. Her question - one she explored in the documentary – is:
Are parents given anything but the down side of Down’s syndrome?
“I feel that all the things that Olly does really well, and all the values that he brings, don’t score on any official chart we’ve ever encountered,” Sally says. “So, for example, he can do stages two-to-six of a 10-part maths question, but he can’t get going. He can’t get started; and he can’t be helped in exams so he always scores nothing.
“That’s when he tries to score in our world.
“But if you go: What are really the most important things in life? What do you die regretting not having done more of? I think all those things he’s really good at.”
Such as relating to people. Making life funny. And being comfortable in his own body.
The thing is, none of those abilities, on their own, get you a top job, a position in society, or letters after your name.
“The middle classes find a Down’s syndrome diagnosis particularly hard; because all the things the middle classes aspire to, you don’t get. So conformity, old school, increased income from their parents, good marriage, grandchildren; house in the country – whatever it is. Those kinds of things you don’t get.
“And so you get a lot of parents - like me, probably - evangelical about the benefits. Because it’s OK not to have those things.”
Sally considered that, by making these points, she was creating a more balanced view. Others thought differently.
One of her critics was Jane Fisher, director of Antenatal Results and Choices, which supports parents going through foetal screening. The documentary, she said, was “not at all helpful” to those having to make these kinds of difficult decisions. Olly, Jane Fisher pointed out, is high functioning and much loved, born to a family that could afford extra help.
Hadley Freeman, writing in the Guardian, attacked Phillips – among other things - for not mentioning her Christianity in the documentary. And for conflating testing – giving parents information about their unborn child – with the subsequent advice that should accompany those results.
“Yeah,” Sally Phillips says. “I must say, I didn’t realise it was going to be as aggressive as it was. Interestingly, the people who came after me were the people I thought were ‘my team’.”
Her team?
“I am pro-choice and a feminist – so I must say I did not anticipate at all that some feminists would decide the documentary was anti-choice.”
This is, it seems, a powder-keg moment in history. State-of-the art tests are making it easier to identify any form of disability before birth. Government cuts have hit the disabled far harder than any other group. Hate crime against the disabled has doubled in the past five years. Donald Trump is in power. Lord Shinkwin’s bill – as I write – has just gone to committee stage, challenging the current right to abortion up to birth if a foetus is shown to have a disability.
“It’s a time when the pro-choice movement feels very much under threat. I think they feel that you’re reducing women’s choice, and anything that takes a step back from freedoms won is bad.
“That’s, I think, why Hadley Freeman and Jane Fisher were going after the documentary - for their own ideological reasons, as opposed to what the documentary was actually saying.”
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Last night, Olly took some persuading when it came to bedtime.
“I had my friend here and Olly wanted to have an adult chat and join in. I had to ask him to go to bed probably 25 times.
“And so, you imagine that on a more extreme scale! Sometimes, you just have to abandon plans – do something else. Like: We’re not going to make it to the sea. We’re going to remain playing with these cardboard boxes. You end up a bit on ‘Olly’ time and I think that’s frustrating for his brothers.”
Obvious question, I know. But let’s ask it. Is bringing up a child with a disability harder?
“Yes, it’s harder. But it’s harder to run a marathon than to walk to the chip shop. Yes, it’s harder. It’s definitely harder. But is it more rewarding?
“Yes.
“Is your life enriched?
“Yes.
“Siblings turn out nicer people. And they turn out nicer people because they’ve suffered a bit. So you want to do everything to avoid that; but once you’re in that situation…”
At parents’ evenings, Sally is often told her two younger boys are among the most considerate in the school; the only ones who think to ask the teachers, “How are you?”
“That’s really hard and horrible for them. I hate it; I hate it. Would I try and avoid it for them? Yes, I would. But am right to try and avoid it? Maybe not, because you find that the difference with siblings is, they’re slightly more likely than the general public to go into caring professions – become doctors, therapists, speech and language workers. They have a sense of civic responsibility.”
When she asked for families of children with Down’s syndrome to send in short home videos – to share moments together – she got hundreds. “And the only difference was that the parent, off camera, was just killing themselves laughing. Just getting much more enjoyment out of it. So you still had a child in a supermarket trolley kicking their legs; and the parents roaring with laughter. For no good reason. And then, on a beach, there’s a child with a spade and a sandcastle, and the mother howling with laughter.
“I still haven’t worked out what I think about that, but it is probably to do with relief – being relieved from a load of expectations.”
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Andrew, Sally’s husband, through his work was given four days for the whole family to enjoy at the Atlantis in Dubai. While they were out there, Luke – the middle son – had homework to do.
“So I was supervising, while Olly went onto the balcony with a bucket and spade from the beach. He filled the bucket with water and emptied it over the balcony.
“About six floors down, there was a café, and this bucket of water landed all over a Liverpudlian man. My husband happened to be on the floor arranging a boat trip, and he saw this guy come out yelling, ‘Let me at him!’
“My husband ran up to our room – looking terrified, completely white – shut the door behind him. And we all kept very, very quiet.”
It’s an anecdote that, as she tells it, makes me laugh a lot. Certainly more than the Liverpudlian.
Did he not find it funny at all? Even when the trail led to Olly?
“No, no,” Sally Phillips says. “It’s a really posh hotel. Everyone’s wearing their finery. He and his wife were having a nice tea in super-posh surroundings…”
She breaks off again. Temporarily distracted.
“Olly don’t ring anyone! I told you, don’t ring anyone…
“Sorry,” she says, coming back to me. “Olly rings people; Olly has rung the fire brigade a few times.”
You are heroic, I tell her. I mean heroic for talking to me with three ill children running rings around her.
“I’m super not. I’m super-super not heroic,” Sally Phillips says. “I’ve just given them a biscuit to shut them up. It’s terrible parenting, isn’t it?”
