Voices At New York Fashion Week, a model with Down’s syndrome will remind us all that her life is not a tragedy

When I was pregnant aged 40, I found myself politely declining to talk about any Down’s syndrome screening. I wasn’t interested in hearing: ‘We offer you a test so you can consider your choices’

Written by Shaparak Khorsandi in The Independent 4 years ago (Friday, September 14th, 2018)

I’ve always enjoyed gawping at models. At university, I shared a room with a fellow student called Clare who was a successful model, always dashing off to be the cover girl for a glossy teen magazine, or a poster ad, between lectures. She often took me out clubbing in London where she and her model friends would swan in like goddesses, never acknowledging the bouncers who ruled the poor saps queueing to get in, like malevolent sentries.

Aged 18, in all my 5ft 2in, size 14, frizzy-haired glory, I would scuttle in after them in a crochet cardigan over my oversized Billy Bragg T-shirt and spend the evening marvelling at how cool and confident these girls were. For they knew that wherever they went, people would be delighted that they had arrived.

These women were from another planet to me. They had access to a world that would always be closed to me except as a voyeur. They were handpicked as examples of the beauty ideal and would never wear crochet with the reckless abandon I did.

Last weekend, New York Fashion Week took a breath-of-fresh-air step to diversify that ideal. Marian Avila, aged 21, appeared on the catwalk, modelling a dress by Talisha White. Marian has Down’s syndrome. She’s not the first Down’s syndrome model – she follows in the footsteps of Australian Madeline Stuart – and it’s all a step towards understanding that people with Down’s syndrome can have brilliant, fulfilling, joy-filled lives in spite of prejudices.

I am pro-choice. I had to have an abortion in my late thirties and will always fight for a woman’s right to choose. And the circumstance is not my business to know or pass judgement on.

When I was pregnant again at 40, I found myself politely declining to talk about any Down’s syndrome screening. There was a risk of miscarrying for a start; also, I was very much in the “you get what you’re given” state of mind when it came to this child I longed for. Of course you might want to know the risks so you can be mentally as prepared as possible for raising a child with special needs but personally, I wasn’t interested in hearing: “We offer you a test so you can consider your choices.”

I didn’t think Down’s syndrome would be a tragedy. I knew the risks as an older mum. The most worrying thing about it was our society’s attitude. We still regard Down’s syndrome as something awful but if you have ever hung out with families with a member who has it, you see that it simply isn’t.

When I was a student, I had the good fortune of doing some voluntary work in a day centre for adults with Down’s syndrome. We had so much fun nattering and doing a drama workshops. At lunchtime the chatter was pretty much exclusively about EastEnders. I spoke at length to one young resident who told me all about her boyfriend “who comes on Tuesdays, Wednesdays Thursdays and Fridays but not Mondays because he helps his mum in their shop”. It was the first time I’d hung out with people with DS. I should have had the opportunity long ago, at school.

All children, whether they have Down’s syndrome or not, are wildly different from one another. My son is incredibly academic and finds maths fun, and my daughter I’m sure, the moment she can, will run away with the circus. Their achievements are on a different scale to one another but my joy at seeing them achieve their goals is the same, whether it’s 100 per cent on a maths test or a cartwheel they have spent the morning perfecting.

A friend with a teenaged son with Down’s syndrome was overjoyed the day he got a job in a supermarket. Seeing him get the bus to and from work by himself was something she had always dreamed he’d be able to do. It was a huge achievement and brought her joy – as well as the inevitable worry of a child’s new independence, which every parent has regardless of their child’s ability.

All parents want their children to be independent because, horrifyingly, they will one day be on this earth without us, and Down’s syndrome is far from the end of the world. People with it should be allowed to be more visible on our screens, in our schools, in the workplace, and of course on the catwalk.

There are no children with Down’s syndrome at my children’s school. I wish there were, for the sake of all children as well as those with special educational needs. We’d go so much further along the way towards fairness and acceptance if that happened.

In his wonderful speech at a UN meeting in Geneva earlier this year, Frank Stephens, a man with Down’s syndrome, outlined what made him different biologically to people without it: “All that adds up to is a person who is a bit uncommon … I am a man. See me as a human being, not a birth defect, not a syndrome. I don’t need to be eradicated. I need to be loved, valued, educated and sometimes helped.”

Quite right, sir. Quite right.

Filed Under: Column, The Independent, Writing