It's a Guy Thing

Getting the lowdown on Down’s

The older I get, the crankier and more miserable I appear to become. I would like to be able to put this down to old age, yet the reality is that I have sometimes allowed my mindset to perpetuate this notion, since not everyone I know of a similar age is necessarily so. COVID-19 has tested my resolve to its limits and my tendency for being Mister Grumpy has worsened during each successive lockdown. The third, and hopefully final, instalment of this wretched episode in modern-day human history has hit me the hardest. Although why? I am privileged to live in a lovely home with a generous garden and have every conceivable piece of modern technology at my fingertips. I am at little risk of going hungry and an escape to the open countryside is within touching distance. And I know that with the vaccination roll-out in full swing a return to a more normal life is agonisingly close. I can metaphorically beat myself over the head with the usual line that I should be grateful, but this has only a limited effect. 

Walking around the local supermarket recently, mask and beanie hat on, looking like an extra from some low budget crime drama, was my excitement for the day although I was angry. I wanted my life back. Then I met the one thing I could easily vent my venom at and instantly recoiled in the fruit and vegetable aisle as I looked towards the clothing section. A big smiling face! It dominated my vision taunting me with its misplaced happiness. The advertisement hording hung from above. Then again, the model had Down syndrome. They are always happy and smiling, aren’t they? 

Back home as I scrolled through LinkedIn, I came across the incredible story of twenty-two-year-old Heba Asaad who recently became the first Egyptian flight attendant with Down syndrome. A cursory search on social media revealed that she was also an undergraduate media student, radio presenter and actress. She was smiling too. At that precise moment I felt like crawling under a stone. My activated unconscious bias, a trait in others that I regularly acknowledged with the utmost revulsion, had hijacked my thinking. The conversations I had in my head about Down syndrome had become an unhealthy reality and if I had one piece of decency left it was the urge to investigate. I had proudly announced on my journalist bio page that I write about things that have puzzled, surprised, and overwhelmed me. If ever there was a trigger point that connected all the dots, then this was it. 

Talking to Kate, mum of nineteen-year-old Duncan, opened my eyes and heart to an element of humanity that has enriched me. More importantly, if this piece can steer away just one person in the future from the catastrophe that is ignorance of human disability, then I will have achieved my greatest piece of journalism. 

Shortly after she comprehensively dismissed my notion that folk with Down’s were always cheerful, and sighing at the marketing ploy, she described in chilling detail how parents of babies with Down’s were routinely signposted to adoption or, gut wrenchingly, briefed about termination. The following prose is dedicated to Kate and the many other parents who held onto that beautiful maternal instinct, during the time she likened to falling down a dark rabbit hole, and those future mothers and fathers who will face injustice, discrimination, and ignorance. Not forgetting the holders of these damaging untruths, in which I include my former self. 


What exactly is Down syndrome? 

Kate surprised me instantly since Duncan was born with an additional X factor, an extra copy of chromosome 21. I was used to celebrating addition as a plus, a positive and a reason to celebrate. However, this errant genetic ingredient caused a spectrum of learning disabilities and much higher incidences of some medical conditions than in the general population. I was surprised to learn that duplicate piece of DNA created a myriad of outcomes. In a nutshell, each person with Down syndrome is different, some having virtually no medical issues, and some having many, but almost all having some degree of learning disability which can be slight or severe. 

Although unique, like the rest of us, people with Down syndrome tend to have physical similarities; large upward slanted eyes with an epicanthic fold on the eyelid, a huge, as Kate put it, ‘sandal’ gap between their big toe and the rest, smaller faces, and a flattened profile, but most importantly they also look like their families. Indeed, Duncan looks like dad Colin, but with lashings of thick dark hair and much cuter! 

On a more serious note, Kate outlined some of the significant health issues including heart defects, gut problems, low muscle tone affecting every physical function, much higher incidence of leukaemia, often coupled with other diagnoses such as autism. 

Tell me about when you discovered that Duncan had Down’s? 

Kate’s recollection was startlingly graphic and incredibly poignant, with a shocking twist at the end. “I was tootling along in the world, delighted to be thirty-one weeks pregnant after five years of infertility treatment and in vitro fertilisation (IVF), feeling incredibly lucky. Then a late scan found a narrowing in his gut, and a major heart defect, both of which were life threatening for our baby and synonymous with Down syndrome. It was a stunning blow. We were suddenly plunged into a whole new reality. All our hopes and dreams, and images of our baby boy and our lives swept away! A doctor sat in front of us and offered to terminate him.” 

Kate described these events as ultra-bright snapshots in time. The face of the radiographer as she located the problems. The face of the nurse at the pre-natal clinic who offered to call Colin telegraphing to the world that something catastrophic had occurred. But most of all, the face of the one doctor as she offered to have her son killed. Icy cold. 

Kate and Colin’s instinctive response of revulsion and disbelief at this prospect meant that this outcome was never mentioned again. Kate added, “I am horrified and disgusted that it remains legal to abort a baby virtually up to birth in the UK for defects as simple as a cleft palate. I could say so much more about this but just now it is too painful.” 

After Duncan was welcomed into the world surgery was required to remedy significant gut and heart problems. For this brief moment in time Down’s took a back seat. “We were lucky that one of our consultants put us in touch with a family with a three-year-old boy, and they showed us that first and foremost a child with Down syndrome is just that – a wonderful, loveable child. I remember 

leaving their home with a smile on my face for the first time in weeks and thinking this can be alright!” 

How did others react? 

“We very quickly learned that we had to manage other people’s reactions to our news. It is still unusual to know before birth that a baby will have Down’s. We benefitted from knowing beforehand so we could prepare ourselves for his delivery and medical needs and prepare our families and friends too. We would all be living with people’s attitudes for the rest of our lives. Right from the start we had to become our son’s PR manager. I have friends who had sympathy cards when their baby was born!” 

At this point I had to come up for air. What type of insensitive, deranged, and darn right ugly human being would do such a thing? Then again who was I to judge as only a short time before I had been cursing a smiling advert. 

“I liken having a baby with Down syndrome to suddenly stepping through the looking glass into a Wonderland I never knew existed. There is a whole society of people with learning disabilities including Down syndrome who are invisible to much of the population, and whom most people know virtually nothing about.” 

What are your thoughts on marketing campaigns that engage with Down syndrome? 

Kate’s positivity towards the inclusion of Down syndrome in mainstream advertising and television was unmistakable. “It’s brilliant seeing people with Down syndrome in films, on TV and in ad campaigns, becoming a bit more visible. Belonging a little more.” 

Her glow for Duncan’s spirit was infectious, “Our son is the beating heart of our family. There have been enormous challenges though. His gut surgery at twelve hours old, and two lots of open-heart surgery were incredibly traumatic for all of us, although he sailed through it with amazing resilience.” 

What support structures exist? 

Unfettered access to the things most of us take for granted is littered with obstacles, ravines, and often thick unrelenting jungle. “Constant battles to get the education and care services he needs in an inflexible and underfunded world designed to meet the needs of a non-disabled majority has nearly broken me more than once, and I know that this is the experience of many parents in ‘Wonderland’.” 

Kate pointed to the 2019 film ‘Peanut Butter Falcon’ as a fabulous illustration of this notion, amplified quite beautifully by the outstanding performance of Zack Gottsagen. 

As a parent what did you get wrong? 

I wondered if I should ask this question. But then again, being a parent myself and reflecting upon the litany of mistakes I had made along the way, why would I seek to excuse Kate? Furthermore, I knew that she was up for the challenge. Keeping Duncan in mainstream education when it clearly couldn’t meet his needs was painful and difficult for everyone involved. Kate added, with a sweet twist of irony whilst pointing to his picture, “Worrying that our lives would be anything other than enriched by our unique, determined, funny, bright infuriating and, you win Kirkey, happy son!” 

What are the highs? 

“I celebrate his lack of inhibitions and ability to squeeze the best out of the most everyday moments. That’s a huge asset and something we can all learn from. Where other people hang back worrying what other people think of them, he’s in there having a fabulous time!” 

When probed for examples Kate’s message was as uplifting as it was uncomplicated. “My very favourite days have been school sports days. If coming first is the only thing that makes you happy you are setting yourself up to fail all your life. Watching my son run the fifty metres like he is winning the race in Chariots of Fire, and revelling in the roar of the crowd, the applause and attention while coming last is a thing of utter joy and I couldn’t be prouder of him.” 

Tell me about Duncan’s dreams and aspirations? 

“Duncan watched his brother play rugby for years, running up and down on the side-lines, supporting him fully, and often having to be restrained from running onto the pitch when he was tackled, to flatten the player who did it! Desperate to join in, he disclosed that all he wanted to do was play rugby just like his brother.” 

The professional rules alas prevented any such dream and it seemed that Duncan would forever have his ambition thwarted on account of his vulnerabilities. Yet Duncan’s story couldn’t end here could it? Kate’s Wonderland was destined to mirror at least a tad of the famous Lewis Carroll novel and so it came to pass that fantasy became reality in the guise of International Mixed Ability Sport. As Kate explained, “Last year we finally discovered Mixed Ability Rugby. There are teams up and down the UK, and Internationally too.” Making no attempt to disguise her excitement she went on to add, “Players with learning disabilities, disabled and non-disabled all playing contact rugby together and sharing the joy of the game. In partnership with Reading Rugby Club, we founded Berkshire Brigands Mixed Ability Rugby Team (www.berkshirebrigands.co.uk). If there is a team near you share in the joy and get involved. We are looking forward to going to the International Mixed Ability Rugby Tournament in 2022. We are always keen to find sponsors, supporters and people to be involved.” 

And like any teenager about to enter their roaring twenties who wouldn’t want their own pad and to settle down with that special person? Ever the pragmatist Duncan cites the need for his own place to better look after Kate and Colin as in his opinion they are already too old! In terms of a relationship Kate summed this aspect up with a whimsical reflection, “No challenge there then!” Then added, “Not because he is not capable of all those things with good support. It’s the good support that’s the issue. But we are working on it……” 

I started this unique journey as a somewhat grizzly old man. Although I still retain these features my mind has been changed, enriched, and educated. Thinking that I knew sufficient about Down syndrome to pass a knowing nod was woefully hopeless in the extreme. Yet during this punishing time in contemporary human history, when a relatively healthy man felt sorry for himself, wisdom has been the victor. As Yvonne Pierre, writer, producer, and advocate so beautifully said, “When you focus on someone’s disability, you’ll overlook their abilities, beauty and uniqueness. Once you learn to accept and love them for who they are, you subconsciously learn to love yourself unconditionally.” 

Kate you opened your heart and thereby opened my mind. Duncan is the star of the piece and if there is room in his future pad maybe he could, on a part time basis at least, look after another high maintenance oldie. Thank you to both of you. And Colin too! 


© Ian Kirke 2021