October marks Down Syndrome Awareness month, the four weeks of the year dedicated to promoting increased awareness, acceptance, and inclusion for those with the chromosomal condition.
In Ireland, there are around 7,000 people with Down Syndrome, with the condition affecting approximately one baby out of every 444 births nationally – about 110 babies each year.
Those with the condition, their families and friends, and disability activists are among those who hope for a world where all of those with Down syndrome are equally valued.
But it is clear that there is still a long way to go. UK campaign group Don’t Screen Us Out, for example, have done vital work shining light on discriminatory legislation, policies and practises which still exist in Britain and further afield – along with wider cultural attitudes towards life with Down syndrome.
Here are seven incredible individuals with the condition who are blazing a trail for all of those within the Down syndrome community, and inspiring people everywhere:
JAMES MARTIN
Martin, 31, will be recognisable to many of us as the first actor with Down syndrome to become an Oscar winner. One of the most magic moments came in March, when the entire Oscars audience joined in singing ‘Happy Birthday’ to the Belfast-born actor. Martin starred in ‘An Irish Goodbye’ which won the Academy Award for Best Live Action Short Film on Martin’s birthday of all days.
An unexpected moment of wholesomeness at the #Oscars: The entire audience singing 'Happy Birthday' to James Martin from 'An Irish Goodbye' moments after the film won an Academy Award for Best Live Action Short Film pic.twitter.com/l8NuASxqYQ
— NowThis Impact (@nowthisimpact) March 13, 2023
The actor’s dazzling rise to fame has inspired people across the world, evident in the huge reaction to his Oscar win. It’s all the more inspiring when taken into account that when Martin was born, his parents were told he would probably never speak. The irony is not lost on his father, U105 presenter Ivan Martin – who jokes that he “never shuts up.”
His success is proof that people with Down syndrome should not be defined by the condition, which varies in severity, and causes developmental delays and learning difficulties, along with medical difficulties including heart disorders (about half of babies born with Down syndrome have a congenital heart defect).
His dad Ivan brought James on air with him on Radio Ulster, where he became an easy fan favourite. He got his start in acting when he joined Babosh, a drama group for adults with learning disabilities which meets every Monday night in South Belfast.
“I never look at my son James and think ‘There’s James and he has Down’s Syndrome’. I just think “There’s James”. It has always been that way,” his father said in 2014. He says that his son’s disability has never held him back:
“He is a very special young man. When he was born and we were told he had Down’s Syndrome we were completely shocked and overwhelmed. But then the business of having a new baby just took over – James had all the same needs as every other baby.“James is a remarkable young man and I admire him so much.
“He has never let his disability hold him back,” Ivan said in an interview.
Martin has achieved an enormous amount, and aside from his career in acting, has addressed the European Parliament and the Stormont Assembly. He has served as an ambassador for Mencap, and has received a certificate from the former Justice Minister for Northern Ireland for his work with legal professionals, teaching them how to better work with those with learning difficulties and disabilities.
Martin is also thriving in his personal life. Perhaps his biggest fan of all is his longtime girlfriend Barbara Norris, who also has Down syndrome. The pair are childhood sweethearts, who met through their mutual passion for acting.
When he won his Oscar in March, she also had something to say regarding the need for greater opportunities for those with the condition:
“It sends out a positive message to the disability community because it shows society that more people like him should be doing more things like this, and have greater opportunities, to show that people like us can do them,” she said of the Oscar win.
“It’s pointing out to society that people who have multi disabilities can be looked upon as actors and actresses, and people can do things like that.”
CHARLIE FIEN-EMLEN
Fien-Emlen is one of the most passionate advocates for those with Down syndrome. The 26-year-old came to prominence after she spoke before the United Nations about the rates of abortion for babies with Down syndrome.
Little did the Londoner know that her moving speech, in which she detailed how “the future of Down syndrome is in great danger,” would lead to her meeting her husband and moving across the world.
Last summer, she married Riley Emlen, who was one of those who watched Charlie’s initial speech at the UN (which racked up 20 million views, and was flooded with comments). Rley was one of those who left a comment, and the pair became friends on social media, later starting to talk over FaceTime.
Charlie, and Emlen, who has Asberger’s syndrome but does not have Down syndrome, soon saw the relationship blossom, and nine months after they first interacted, Charlie, accompanied by her parents, visited Riley at his home in Washington State.
Two years later, in 2019, Riley proposed while on a trip to Venice. Covid saw their wedding postponed three times, but when it arrived, the big day was perfect.
“Our wedding was perfect! I had bridesmaids, flower girls, and pageboys, all of whom had Down syndrome! . . . We went to Oregon and California wine country on our honeymoon. It was very romantic!” she said in an interview with Celebrate Life Magazine.
She loves being married, and says she has “the best husband in the world!” Living in the United States, she is continuing her university studies in pre-law, with aspirations to go into human rights or disability law. Her husband, Riley, is working towards gaining a PhD in special education, and works as a special needs teacher.
Fien-Emlen’s passion for advocacy and outspokenness regarding the issue of disability selective abortion comes from her own personal story: her mother, she has said, was pressured to abort her while she was pregnant. She said her parents were told she would never read, write, or be independent.
Giving advice to mothers who have received a prenatal diagnosis of Down syndrome for their child, she urges them not to be afraid.
“Find up-to-date, accurate information. Start an intervention programme from birth like my parents did. Teach your baby to read using flash cards. Teaching very early reading also teaches speech at the same time.
“Treat your baby with Down syndrome like any other baby, but put in the extra work because that makes a huge difference,” she told Celebrate Life Magazine in a recent interview, adding:“Don’t put limits on what your child can do. No limits. Society puts plenty of limits on us, don’t do that.”
She says that she will continue to fight and speak out against those who want to see people with the condition “eradicated” –adding:
“If people with Down syndrome are not even worthy of life, how will we be worthy of good healthcare, employment, or any other rights? The first most important right is the right to life! I’m begging the world to give Down syndrome a chance. To allow us to live and prove society wrong. We are human beings and deserve that chance.”
TOMMY JESSOP
One man dedicated to changing perceptions about people with Down syndrome is British actor Tommy Jessop. He starred in the BBC documentary Tommy Jessop Goes to Hollywood, which details the Line of Duty star’s plans to create a superhero with Down syndrome.
“If no-one will give me a leading role, then I will write one myself. I want to show that people like me can be heroes too,” Jessop tells the documentary, explaining how roles have dried up for him since his casting in Line of Duty in 2021. He says there is a deeply embedded societal prejudice towards those with the condition, while also speaking out against the popularity of screening for the condition, and the effect it is having on his community.
🌟 Tommy Jessop Goes To Hollywood. 🌟@Line_of_Duty actor @TommyJessop is on a mission to create his own movie with the help of his brother Will. Is Hollywood ready for a superhero with Down's syndrome?
Produced by BBC Studios.
9pm Mon 21 Aug | @BBCOne | #MadeByBBCStudios pic.twitter.com/be6sQqZbeT
— BBC Studios (@bbcstudios) August 21, 2023
Routine screening has resulted in a 42% increase in abortion for the condition in the space of 10 years. Last year, the number of abortions for Down syndrome in Britain saw another surge – rising by 24 per cent.
“That is what I want to fight,” he says in reference to babies with Down syndrome being screened out.
The actor, who is also the first with Down syndrome to tour UK theatres as Hamlet, has also defied the odds given to his parents at birth. His mother, Jane, in one touching scene in the documentary, explains that doctors did not expect he would do very much in life.
“We didn’t quite know what was going to happen […] When the doctor came to see you, he told me that you would never read, you would never speak, and you’d never do anything very much,” she said.
“But when you were only about a year old, you suddenly woke up. And you’ve never looked back. If only that doctor could see you now.”
“Did he think I was a mistake?” Jessop asks her, to which his mother aptly responds, “You’re not a mistake. You’re a miracle.”
SOPHIA ANDREA SANCHEZ
With tens of thousands of followers on social media, Sophia Andrea Sanchez, has been determined to change perceptions around the condition since a young age. In 2016, an inspiring viral video reached out to those who may be afraid of her condition, declaring, “Down syndrome is not scary!”
Sanchez, who is now fourteen, was adopted at 14 months old. Born in Ukraine, as a baby she was abandoned at birth and spent the first months of her life in an orphanage in a small town.
Her parents found her on an adoption ministry website, called Reese’s Rainbow, and travelled to Ukraine to collect Sophia in the Spring of 2010. While the little girl couldn’t do much before finding her forever family, she began to thrive with the love of her parents, three older brothers, and grandparents in the United States. Sanchez’s family have explained that they loved taking pictures of the adorable tot, and before they knew it, the little girl’s modelling and acting career had started to take off.
Sanchez authored the book ‘You Are Enough’ in 2020 – the powerful picture book celebrates being yourself, and promotes a message of inclusion. “Being different is what makes you YOU,” according to Sanchez, reminding readers how important it is to “embrace your differences, be confident, and be proud of who you are.”
The book has hundreds of positive reviews online, with readers praising it as an important guide for children about how to be inclusive and kind to those who may be different from them.
You can watch Sophia’s inspiring adoption story here:
HEIDI CROWTER
Listed in BBC’s 100 Women of the Year in 2022, Heidi Crowter is a patron of Positive About Down Syndrome and founding officer of the National Down Syndrome Policy Group. Her book, I’m Just Heidi, was published in August 2022.
Her inclusion on the broadcaster’s shortlist has signalled the enormous impact of her advocacy on behalf of those with Down syndrome.
Ms Crowter’s mission to change perceptions of people with Down syndrome began in 2018, when she learned, to her distress, that 90 per cent of babies with the condition are aborted in Britain. Spurred on by this, she took the UK government to court over Britain’s abortion legislation, which permits abortion up to 9 months gestation for babies prenatally diagnosed with Down syndrome.
Speaking before the ruling, she explained expectant parents only saw “a list of all the medical problems” that babies with Down’s syndrome might have”
“That’s just not what I am. We should see the people behind the extra chromosome.”
Crowter ultimately lost her case, which argued the law was discriminatory, but in the process, she opened a nationwide conversation about the ethics of the law, and the value, worth and abilities of those with Down syndrome – and the fears expectant parents have about the condition.
Crowter has vowed to keep fighting and to continue telling the world that Down Syndrome has not stopped her from having a full and vibrant life.
Crowter, who works in a children’s hair salon and is an avid Liverpool fan, says there is nothing she would change about her life.
In the summer of 2020, British media widely covered the Coventry campaigner’s wedding to her partner James. Heidi met James, who also has Down syndrome, through her mum’s cousin, and through sharing the story of their romance and marriage, they’ve made people realise that it is possible for those with the chromosomal condition to find love.
The pair, who are both passionate about their Christian faith and enjoy singing hymns together, told the BBC the connection was instant.
While Heidi says it “was love at first sight,” James went a step further, with his now wife saying: “He told me he went home to write his wedding speech” after their first date.
Offering her advice to parents finding out their unborn child has Down syndrome, she told Britain’s National broadcaster:
“Try not to be worried. There are a lot of Down’s syndrome groups that will support you and lots of groups on Facebook too.
“But also, go and meet someone who has Down’s syndrome. Look at the ability not the disability. I don’t like that word, because it says what we can’t do instead of what we can.”
CONOR O’DOWD
Conor O’Dowd is an inspiring activist with Down syndrome. O’Dowd, from Drogheda, is a well-known advocate for the right to life of people with disabilities. The young man is a living witness to the great strides made by those with Down syndrome in surpassing expectations in education, employment, the arts, politics and more.
Last December, Conor made headlines across the nation through an open letter he penned to the Master of the Rotunda Hospital – who had said that 95% of babies diagnosed there were now being aborted.
In an interview given to The Irish Times last December, Prof Malone said: “The 95% who choose to travel do reach that decision themselves.
“We very much do not advocate for termination. The reality is that the vast majority choose to terminate.
“I don’t have a view on whether that is the right thing. We don’t advocate for it, that is just the lived experience,” he added.
O’Dowd’s moving open letter urged policymakers and medics across Ireland to think about what that alarming statistic would mean for his community.
29-year-old Conor, a chef at a Drogheda hotel, powerfully posed the question, “What are you telling parents? Tell them the truth.”
“I love my life, and I don’t understand why people take away babies with Down Syndrome – it is very wrong and it is unfair,” he wrote in the handwritten address. “We love our parents, our brothers and sisters and our friends, and they love us very much.”
Encouraging honesty around the condition, he asked the Professor to be more honest.
“Tell the truth to our parents on Facebook, or if you could go on RTE. Please save our babies with Down Syndrome.”
Last March, O’Dowd lit up the All Ireland Rally for Life in Belfast, where he spoke out against disability selective abortion, urging attendees: “I love my life.”
“As you probably know I am 28 and I am a Chef in a hotel in Drogheda,” he said. “I did attend college in Newry SRC but now I am a student in Dundalk,” O’Dowd told the crowd.
“I love photography. My buddy Jason is now working in a restaurant in Drogheda as well and my other buddy Stephen is working in Google. Keep up the good work!” he explained.
“We do everything – people with Down Syndrome!” he told the Rally to cheers. “We would like to wish that award winning actor James Martin from Northern Ireland all the best in Los Angeles on Monday night.”
And he made a heartfelt plea: “We would like to stop those doctors taking away our babies with Down Syndrome.”
“Hey doctors, leave those babies alone.”
“I have a message for politicians. We haven’t gone away you know,” he added.
He wrapped up by with a powerful message, met by loud applause: “I say this to the people in Belfast today: I love my life. We are pro-life.”
You can watch his powerful and uplifting address in full here:
KAREN GAFFNEY
Karen Gaffney is a leading champion of full inclusion in families, schools, communities, and the workplace for people with Down syndrome and other developmental disabilities. She founded the Karen Gaffney Foundation, which is dedicated to promoting a culture which is truly inclusive and equal. Gaffney, a long distance swimmer who relay swam the English Channel, is also an impressive and witty public speaker. She is the first living person with Down Syndrome to receive an honorary doctorate.
In 2015, Gaffney gave an inspiration TED Talk on why all lives matter, in which she challenged viewers: “I have one more chromosome than you. So what?”
“Imagine that here we are reversing the damage caused by institutions, removing barriers to education, making inroads into a full and inclusive life for people like me, and still we have those who say we shouldn’t even be born at all,” she told an audience at the TED Talk in Portland.
The young woman has attracted attention worldwide, for her own personal achievements, but also for her relentless work on inclusion for people with Down syndrome.
Ahead of Ireland’s referendum on the eighth amendment, she travelled to Ireland to meet with TDs and addressed the Rally for Life in Dublin, in which she challenged the prospect of a culture where babies with Down syndrome are increasingly aborted before birth. She says that those with Down syndrome are bettering and enriching our society as “musicians and artists, golfers, artists, models, public speakers, and good employees making a contribution to society.” She says this is contradicted by the race to find newer, faster ways to diagnose the condition before birth.
Her message to the world is that All Lives Matter.
“I believe that Down Syndrome is a life worth saying ‘yes’ to. It is a life worth saving. Every life has value, every life matters, regardless of how many chromosomes you have,” she said during a visit to Dublin.
Ms Gaffney continues to raise awareness through motivating speeches, workshops, webinars, personal experiences and blogs, through the Karen Gaffney Foundation.