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The Down's Syndrome woman who shattered Stephen Nolan's prejudices

One Extra Chromosome: In a truly inspirational BBC documentary, Nolan meets five people from across Northern Ireland living with Down's Syndrome

By Stephanie Bell

Published 24/06/2015

Bright future: Louise Cleland
Bright future: Louise Cleland
Gemma McCourt and her baby Embarr, who has Down’s Syndrome
Celtic fan Jay Beattie

What a difference a few decades and a group of determined parents can make. When their daughter Louise was born with Down's Syndrome, Newry lawyers Emer (72) and Alan (73) Cleland couldn't have been given a more negative forecast of what the future would hold for their little girl.

They were told she would never bond with her parents, she would not be articulate and there was no point in teaching her as she would not learn anything beyond the age of seven.

The couple, who also have six sons, never once accepted that their daughter was anything other than normal and also were determined that her disability should and would not impinge on the quality of her life.

With a group of like-minded parents they took on the system and fought to get their children into mainstream schools with classroom assistants.

Today, Louise is a happy 33-year-old doing her dream job of working as a classroom assistant in a primary school in Warrenpoint, having passed her NVQ levels 1 and 2.

Fast-forward 30 years and the birth of little Embarr McCourt, from Armagh, couldn't have been more different.

This time when parents Tom (46) and Gemma (36) left hospital with their little girl it was with the most encouraging words from a consultant ringing in their ears.

They were told that they had no idea yet of the joy that Embarr was going to bring and that their lives would be enriched by having a child with Down's.

Gemma and Tom are grateful for the groundwork laid by parents like Emer and Tom, which means they won't have to battle ignorance in society to allow their daughter to reach her full potential.

Their stories will be featured tonight in a special BBC documentary by Stephen Nolan.

In what is an uplifting and positive piece of television, Stephen meets five people with Down's Syndrome to find out what impact the condition has had on their lives.

One Extra Chromosome offers a glimpse into the lives of people of all ages living with Down's Syndrome, from Embarr, who was just 10 months old when the programme was made, to the oldest person living with the condition in the UK.

The programme opens with an interview with Louise, who confesses that she gets upset when people treat her differently because she has Down's.

"I just want people to trust what I'm saying and really listen to me," she says. "I just want people to take me seriously, and I never get that."

Louise's parents are grateful for the chance to talk about Down's in a way that will help anyone who lacks knowledge about the condition to better understand it and further break down any prejudices that still might exist in society.

Even Stephen Nolan - after speaking to a very articulate Louise - is forced to confess that he, too, had prejudices and says he hopes the programme will "knock it out of me and others watching".

Louise's mum Emer says: "The problem when Louise was born was that there was still very little known about Down's Syndrome and, thankfully, things have changed now.

"Everything we were told was negative but, to be fair, the negativity in the medical profession was largely born out of ignorance. What we were told was completely wrong and we've had a lot of work and effort to get to the stage we are at now. Our attitude was that a child with Down's Syndrome has the right to fail. There are lots of us who can't do certain things we would like to but it is very important to be given the opportunity to try and to have the chance to reach your full potential; that is the same for a Down's Syndrome child as much as for a normal child.

"Louise was the first generation in Northern Ireland to go through mainstream school and that was the difficult part but there was a great well of goodwill out there and people are delighted for Louise, and that she has done so well."

Emer is happy that attitudes are improving and believes that it is only a lack of knowledge that continues to create any remaining obstacles or prejudice today.

She adds: "There is a lot less prejudice now than there was 30 years ago and a lot more understanding and hopefully this programme will help. I think people don't know how to pitch a conversation with someone who has Down's Syndrome and this is where the real value of the programme comes in - showing viewers that people with Down's Syndrome all have personalities of their own and abilities."

Gemma McCourt, who works as a marketing officer for the charity Trocaire, had no idea that Embarr had Down's Syndrome until she was born.

In taking part in the programme she says she feels indebted to Emer and Alan and parents like them who have paved the way to help make life that bit easier for her daughter's generation.

"I can't say how grateful I am to parents like Emer and Alan for the work they've done," she says. "They've had a battle on their hands because of society and attitudes.

"Before my daughter was born I didn't know much about Down's Syndrome and I think people generally lack knowledge, which can make them say things which sometimes can be hurtful.

"I love to have the chance to talk to people about the condition and I am really open about talking about my family and living with someone with Down's Syndrome.

"One of the most positive things I heard was after Embarr was born. We were in shock and my mum was still finding it difficult and when she told people her granddaughter had Down's Syndrome they just said 'So what?'

"To me that was just brilliant and my mum was very encouraged by it."

Although shocked when told her baby had Down's, Gemma says she never felt sad but just worried about the future and what life will be like for her daughter. At 13 months she describes Embarr as "already a little diva" who loves craic, music and attention.

She is content that her daughter will reach her milestones in her own time and is just filled with gratitude for her lovely baby while mindful that other families are facing much worse with children who have life-limited conditions. She adds: "I just have this immense love for her and every hour I spend with her it just deepens and deepens.

"People with Down's Syndrome have a huge amount of potential; and I just want to nurture that and help Embarr reach her full potential.

"I believe what you put in is what you get out and I want her to be brought up in a loving, understanding and stimulating environment, and the rest will take care of itself.

"I see Embarr as enabled not disabled.

"I look at her and I see her as a very able child. Yes, I know there will be challenges ahead, but what parent doesn't have challenges?"

Jay has exceeded our expectations

Celtic fan Jay Beattie is only 11 and has already achieved more in his life than most of us could even dream of.

Jay was only one when he made his first newspaper headline after being chosen by a Down's charity in New York to front a fundraising "Buddy" walk and had his picture put up in Times Square.

He also fronts the now well-established charity in his home town of Lurgan, Down's and Proud, set up by his parents Martin (45), a building project manager, and mum Aine (44), a systems analyst.

Among his many fans is his older sister Olivia (17).

Jay is an internet sensation after becoming the only non-professional player to score the Scottish Professional League goal of the month at Celtic Park earlier this year.

He is proud of the fact that he has Down's Syndrome and has done a lot to break down social barriers.

His mum Aine says: "He's proud to have Down's Syndrome and we're very proud of Jay. He has far exceeded our expectations.

"When he was born everything we were told about Down's Syndrome was very negative and no-one told us how wonderful it would be.

"The way Jay is with the football crowd just amazes me. Jay does it himself, we don't push him forward.

"I really didn't know what to expect for Jay and had just decided when he was born to take it day by day and that I would do everything in my power to make life as normal as possible for him.

"Jay has completely exceeded our expectations and everyone who meets Jay just falls in love with him. He has a fantastic wee personality and he never ceases to amaze and delight us."

Belfast Telegraph

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