How Ellie Goldstein’s time on Strictly inspired my son

Ellie Goldstein has just undergone the fleeting but I hope vastly enjoyable experience of being a national love object – and that’s an unusual thing for a person with Down’s syndrome. She was taking part in Strictly Come Dancing and managed to survive until the sixth round – mostly on sheer strength of personality – before being eliminated last weekend.

She was great. One of the judges, Shirley Ballas, went so far as to say she was “outstanding”. When not dancing, Goldstein works as a model; she’s been on the cover of Vogue. She seemed to take her exit in her stride: “I’ve enjoyed it so much.”

My younger son Edmund, who’s 24, is a great Strictly fan; well, he’s a dancer himself. Like Goldstein, he had open-heart surgery before he was six months old; both had holes in their hearts. Their energetic and vigorous lives have something miraculous about them.

Last Saturday, long before the hour of Strictly , Eddie and I took the canoe out on the local river. It’s one of those facts of life that there’s always a headwind on the homeward leg, and this was a particularly enthusiastic  example. Eddie got stuck in and we shifted the boat manfully, though he paused briefly to photograph a rather gorgeous riverscape.

It was Eddie who first saw the kingfisher; it perched, and we managed to get between the bird and the sun, and the kingfisher caught fire, as you would hope. We got the boat back in good humour and went to the pub for lunch: “Do you do this for the joys of paddling with me or for the cheesy chips?”

“Both,” he said. Which is the right answer.

In the pub, he explained that he was wearing his Shakespeare T-shirt because it was Halloween – a reference to the scary nocturnal imagery in Macbeth. He had a small part in the play a few years ago and was deeply moved by a production at London’s Donmar Warehouse with David Tennant.

Eddie has had the good luck to play two of Shakespeare’s showiest roles: Mercutio in Romeo and Juliet – he made his entry with a knee-slide – and Bottom in A Midsummer Night’s Dream. The play’s similarities – they were written in close succession – rather got to him: after all, Romeo is almost a comedy and the Dream almost a tragedy.

After lunch, we went home and Eddie retired to his caravan for a monster dose of music. Judy Garland, grand opera, the Incredible String Band; he has a passion for all music – you never know what will be blasting into the Norfolk air.

Perhaps I should have mentioned this before, but no doubt, dear reader, you’ve already guessed: Eddie, like Ellie, has Down’s syndrome. Like Ellie, he enjoys his life very much. And – I think I’m safe in assuming – like Ellie, he enriches the life of the people around him.

Strictly has made rather a thing of variously challenged competitors: last year, the winner (and Eddie’s all-time favourite) was the comedian Chris McCausland, who’s blind; in 2021, it was Rose Ayling-Ellis, who is profoundly deaf. The show is all about the voting public, so the arc of the story is as relevant as the dancing skills.

It would have been nice to see Ellie win this year, but with the lax muscles and ligaments that go with the condition, a person with Down’s syndrome can never truly float as a dancer should: they are, of necessity, rather more bound to the earth than the rest of us. But, for five weeks, primetime television brought us a person with Down’s syndrome as if her condition was the most normal thing in the world; and for all the reservations you may or may not have about Strictly, this seems to me a damn good thing.

Ellie was full of sparkle and joy in performance, and her professional partner, Vito Coppola, was not only wonderfully nice to her, he also really got her: he saw the point of her, understood her, established a two-way line of communication with her at a genuinely deep level. By doing so, he helped the still vast Strictly audience to do the same.

In October, we went to Paris for a few days: me, Eddie and my wife, Cindy. Eddie’s idea: he wanted to see some art. He had adored the Vincent van Goghs on a trip to the Netherlands; he wanted more. Fair enough. Though it wasn’t the Vincents in the Musée d’Orsay that got to him; it was more dancers – the big Renoir Dance in the Country, the man with his back to us and the girl in his arms lit up with joy, just as Ellie was.

To my surprise, he wasn’t taken with those vast Monet waterlilies in the Orangerie: he much preferred an André Derain portrait of a lady of fashion. But he loved Notre Dame and took a memorable picture: it looks as if the cathedral had been painted by Lowry. I didn’t ask him if we were there for the art or for the crepes, but had I done so, I’ve do doubt what his reply would have been. We were certainly able to celebrate both.

Eddie’s week is pretty hectic; Monday: acting group, evening dancing class. Tuesday: painting. Wednesday: working on Clinks Care Farm. Thursday: musical theatre. Friday: singing lesson, then evening swimming. Saturday: river and pub and cooking. Sunday: serving on the altar at Norwich Cathedral.

He has, then, a pretty full life and a great group of friends. The caravan has been a great new adventure; Cindy acquired it a few weeks ago for reasons that eluded me and it was at once commandeered by Eddie. His own space. Total control thereof. He sleeps and sings there and his life is better for it; and my own is certainly a good deal quieter.

So there you have it: a rather humdrum vignette of family life. Quite a lot like everybody else’s. It’s normal for us to go the pub on Saturday, just as it’s normal for Ellie to appear among the soap stars, presenters, influencers and lapsed athletes on Strictly. Life should be like that.

It’s legal to terminate a pregnancy at any time before actual birth if the foetus has been diagnosed with Down’s syndrome. That’s the case with all “serious abnormalities”. People must make their own decisions, and I’m certainly not here to make judgments, but it’s important to make all your big decisions with the help of real information and lived experience, rather than panic, fear and prejudice.

Of course, I wish Eddie was able to sire a dynasty, drive a car, become a brain surgeon, write the definitive novel of the 21st century, edit The Observer, score an Ashes century, sell out Wembley with his concerts and dance like a flame across the ballroom. And, of course, I wish he didn’t feel the weight of his own condition. He had a belief that he would grow out of  Down’s syndrome on his 18th birthday: the disappointment is still part of him. Let’s have no nonsense about happy-go-lucky people incapable of anything that we’d recognise as thought.

Of course Eddie is a burden and responsibility – it’s called being a parent. “Basically, you’re as happy as your least happy child,” a friend of mine once said. I’m happy to say that Eddie’s life is mostly happy. And if you think I’m building myself up as some kind of hero parent, I apologise, for that was not my intention. I’m not. I’m just any old parent. Perhaps people believe that having a child with Down’s syndrome makes life worse for all non-hero parents. It doesn’t. It makes it better.

These days, most people do their best to cope when they meet people with Down’s syndrome. Eddie likes to meet them halfway, so he presents himself with style: gold shoes, natty glasses, pink leather jacket,blond streaks, a bold blue suit for his brother’s wedding. His various outfits make it clear: you can see that I make my own decisions, so please remember to treat me as a fellow human.

I wish I could give an example of Eddie’s wit; remarks that bring together ancient family folklore, high culture, favourite films and long-forgotten incidents; shafts of insight that reveal his idiosyncratic thought processes and his genuine intelligence. But though frequent enough, they’re will-o’-the-wisp: part of the moment and then gone, and it’d take a page of footnotes to explain any one of them.

So you’ll have to take Eddie as he appears: covered in mud after looking after the pigs; high as a kite when the play is over and he has set the theatre ringing with “a plague on both your houses”; mucking about with best friend Callum; exchanging insults with brother Joseph, filling the caravan and the world beyond with White Bird or La donna è mobile or Somewhere Over the Rainbow; wielding his paddle or his camera; drinking his half of shandy in the White Horse. The world is a little more comfortable with him than it was six weeks earlier: so well, Ellie, here’s to you.

Photographs by BBC/Guy Levy, courtesy of Karen Willie