Down’s syndrome hasn’t stopped us living amazing lives and smashing preconceptions

AFTER a recent court case to end full-term abortion of babies with Down’s syndrome failed, we meet three women who are smashing preconceptions about living with the condition.

We hear from actress Dr Sarah Gordy MBE, triathlete Jade Kingdom and government worker Sara Pickard.

‘I was the first person with Down’s Syndrome to be given an MBE’

Dr Sarah Gordy MBE, 45, is an actress and lives in Lewes, East Sussex, with her parents Jane and Jere. 

“Standing in front of Prince William as he presented me with an MBE in November 2018, my heart was pounding with excitement.

I couldn’t believe I was at Buckingham Palace and the first person with Down’s syndrome (DS) ever to be given the honour, watched by my proud parents and sister Catherine, now 43. 

It felt surreal and wonderful, and I hoped it would inspire other people with DS to believe that whatever your dreams, your disability doesn’t have to be a barrier to achieving them.

I’ve been acting since I was a little girl.

Aged four, I was Mary in my primary school nativity, and Catherine and I used to put on plays at home for Mum and Dad.

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Being on stage or in front of a camera has always made me happy.

After going to mainstream school, where I had some support from a teaching assistant, and then to college to study life skills like baking and housekeeping, I auditioned for local theatre groups. 

I wasn’t planning on becoming a professional actress, but when casting directors for the ITV series Peak Practice began looking for an actress with DS, they were given my name by one of the theatre groups.

In 2000, aged 23, I auditioned and landed the part of Jessica Bain. I was delighted, because for too long people with DS on TV and in theatre were kept in the background, never given a speaking part or a proper character to play. 

That role launched my acting career and since then I’ve appeared in TV series including Upstairs, Downstairs, Call The Midwife, Strike and The A Word, as well as in the play Jellyfish at the National Theatre. Most recently, I starred in ITV crime drama The Long Call, alongside Martin Shaw and Anita Dobson. 

I love learning lines, rehearsing, then heading to the pub with my fellow actors for a drink and a chat.

Whenever I take on a role, I research what life was like for people with DS at that time in history, so I can fully understand my character.

Learning that if I had lived in another era, I would have been hidden away in an institution and written off by society makes me feel very sad, and grateful to have been born when I was and into such a supportive family.

Being on stage or in front of a camera has always made me happy.

Doctors told my dad I had DS soon after my birth, but they didn’t tell my mum for three days.

They wanted her to bond with me first. She’s told me that when they did tell her, although she was shocked, she and Dad loved me and simply wanted the best for me.

In June 2018, I received a letter headed with the Buckingham Palace crest, and my hands shook as I read that I’d been awarded an MBE for services to the arts and people with disabilities.

My mum couldn’t stop crying with pride. Then later that year, I was awarded an honorary degree from the University of Nottingham.

I’ve never cared about being famous, it’s not why I do what I do.

But I realise that my public profile means other people with DS, and parents of children with the condition, can look to me and feel inspired that we are strong, talented people with dreams and ambitions just like anyone else.”

‘A doctor told my mum I’d struggle to dress myself – now I’m a triathlete’

Jade Kingdom, 35, works in hospitality and lives in Barnstaple, Devon, with her parents Judy and Tim, both 62. She’s in a relationship.

“Crossing the finish line of the London Triathlon in August last year, I felt exhausted but so proud of myself – not only because I’d completed a 750m swim, followed by a 20km cycle and a 5km run, but also because I was the only competitor with Down’s syndrome. 

Hearing the crowd cheer, I felt emotional knowing I’d challenged preconceptions about people like me and what we’re capable of.

I was a day old when my mum was told I had DS. The doctor said she’d be lucky if I could manage to dress myself and write my name. 

Mum has told me she was ‘numb with shock’, but quickly she and my dad decided that I should live the best and most normal life possible, just like my older sisters Gemma, now 37, and Kelly, 40.

Growing up, I went to a specialist school, then from the age of 21 I spent three years at a residential college for young people with learning disabilities doing a ‘skills for life’ course.

Since then, I’ve worked part-time as a waitress at a local restaurant. It’s important to me to have financial independence. 

I live in a self-contained annexe next to my parents’ house, with a bedroom, bathroom and living room/kitchen. I love having my own space, and my perfect evening is cooking spaghetti Bolognese and watching all the soaps on TV.

I have a PA called Lisa, funded by me and my local authority, who helps with things like food shopping and cleaning my home, and we also enjoy going swimming and playing pool together.

I’ve been with my boyfriend John, 39, for 17 years since we met at school. He also has DS and works at a fast-food restaurant. 

He lives nearby and we love to go out for a meal or to watch a film at the cinema. Just because we have a disability doesn’t mean we don’t want the happiness of being in a loving relationship.

We’ve talked about marriage one day, but for now we’re happy as we are.

Hearing the crowd cheer, I felt emotional knowing I’d challenged preconceptions about people like me and what we’re capable of.

I started taking part in triathlons in 2018, after watching my sister Kelly and brother-in-law Tom do one.

I was in awe of their stamina, and could see how much they both enjoyed the sense of achievement when they finished. 

Tom agreed to train me, and although I was a strong swimmer, running and cycling don’t come naturally to me, as I have problems with my balance as a result of DS.

I trained for five months with Tom encouraging me to keep going to get stronger and faster. It wasn’t easy fitting it in, but I was determined. 

In August 2018, I completed my first triathlon in London – a ‘supersprint’ involving a 450m swim in the London Docks, plus a 10km cycle and 2.5km run. It was tough, but I’ll never forget how amazing it felt to complete it. 

I knew people in the crowd would have been surprised to see a person with DS involved – we’re not known for being athletic – but my desire to change people’s attitudes spurred me on. 

I completed the same event in 2019, but it was cancelled in 2020 because of the pandemic.

Last summer, I pushed myself harder than ever, taking part in an even longer triathlon following eight months of intensive training.

Over the past three years, I’ve raised £23,000 for the North Devon Hospice through sponsorship – and I’m fitter and stronger than ever before.

My next challenge is a six-mile swim in the Serpentine in London later this year. I can’t wait!

I’d love to meet the doctor who painted such a bleak picture of my future, to show him the life I lead today – and how wrong he was.”

‘I speak two languages and have travelled the world’

Sara Pickard, 38, works for the Welsh government. She lives near Cardiff with her parents Shan, 71, and Mike, 72, and is in a relationship. 

“As I stood queuing at a museum on a break from work, an elderly lady approached my colleague and asked if she could give me some money to buy myself an ice cream.

I was in my mid-20s at the time, but I knew her assumption – that because I have Down’s syndrome I’m childlike and helpless – wasn’t born out of malice, but out of a lack of understanding and education.

When I tell people that I work in government, have travelled the world and speak Welsh, they’re often surprised.

There are still low expectations of what people with DS can achieve, and I’ve always tried to challenge that.

I was diagnosed with DS when I was four days old.

A paediatrician told my shocked parents not to worry about the future.

He said: ‘She will do what she will do,’ and after that, they took me home and raised me just as they would any child.

I went to mainstream school, where I was the only person with DS. I had lots of friends and got 10 GCSEs, including an A in Welsh, with some support from a TA.

After studying IT and business at college, I went to work for the charity Mencap in 2007, when I was 24, doing everything from encouraging people with learning disabilities to get involved with politics, to recording the oral histories of older people with disabilities for a museum exhibition.

In 2011, I ran for election as an independent community councillor in my local area, and still hold that position – I’ll be running for re-election this year.

I feel proud to be a woman with Down’s syndrome.

In February 2020, I started a one-year career break to take up a role with the Welsh government.

I am a Disabled People’s Employment Champion and work with businesses to encourage them to employ more people with disabilities. 

Pre-pandemic, I was lucky enough to do lots of travelling with my other role with Inclusion International, a global network for people with learning disabilities, visiting Kenya, the US and many European countries.

But I still make time for my personal life. I take dance classes – everything from tap to hip hop – and love eating out.

I became an aunt this year when my sister Bethan, 35, had a baby, and I love to spend time with my boyfriend Simon, 38, who has Asperger’s and also works in the charity sector.

We met at a local drama group 10 years ago. We’ve no plans to marry, but are very happy together.

I feel proud to be a woman with Down’s syndrome.

It’s not a weakness, nor has it held me back. It’s made me a strong and empathetic person – with a determination to change attitudes through how I live my life.” 

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