Diego blinks several times and looks at me with his trademark grin. “S-s-s-sophie”, he stammers, his eyes alight with excitement, “Can we sing the Shrek song again?” Happily, I oblige, and we dance, and we play, and we laugh a lot. We do this every single day. Next, he’ll ask if we can sing YMCA, we’ll laugh some more, and then at some point I’ll persuade him to back away from the music blasting out of the computer and come for a walk in the countryside with me.
He’ll hold my hand as we amble through the woods. He’ll point out birds and many other wild sounds I hadn’t even noticed – being as I am too wrapped up in my everyday problems – and I’ll be glad he brought me back to the present moment, as always. Then Diego will usually tell me the same story over and over again, and even though it takes him a while to find the words, I’ll never get tired of hearing it because he does it with such enthusiasm – always smiling, always peppering the tale by telling me ‘I l-l-l-l-love you Sophie’, with his beaming grin, his pride and his genuine affection cheering my day up no end. I feel the urge to kiss Diego all over his cutesy, chubby little face every time I see him. He’s probably the most adorable child I have ever met in my life.
Diego happens to have Down’s syndrome, which, far from being a burden to me as his (informal, family-friend) nanny, only seems to reinforce my belief that most disabilities could be more accurately termed ‘dif-abilities’.
I have a daughter, Evie, who is three years younger than Diego. They went to primary school together, played out together daily, and slept in the same house at least twice a week. Evie was born with the usual number of chromosomes. Evie is wonderful, of course: she’s hilariously funny, she’s bright, she’s artistic; she amazed me and made me burst with pride by learning a foreign language fluently in three months. She’s also warm and caring and kind. She’s ‘good’ at things’ in a way Diego never could be.
But Evie has her flaws. She doesn’t have the same passion for life as he does, she doesn’t have the same sunny temperament, beaming grin nor the same very special and loving personality as Diego. She’s argumentative, she’s stubborn, she’s sulky, she’s lazy, she gets bored easily, she refuses to walk the dog with me, and although she’s the biggest love of my life, she’s also much, much harder to parent than Diego is, in a hundred different ways.
I looked after Diego daily between the ages of 10 and 15, while living in rural Spain. Diego is now a happy, healthy, bright 19 years old, and is something of a comedian. He still loves music and dance and stories and playing. His Mum and Dad, Mari and Manuel, have never treated him any differently from his sisters Laura and Lucia. As far as the family are concerned, there are no limits to what he can do. Diego even has his own YouTube channel, which makes me well up with pride every time I watch a new upload. He is loved – and I mean really loved, cherished and respected – by the whole village, with its tiny population of 200.
In that small farming community, Diego isn’t the only person with Down’s Syndrome. There’s also Paquito, now 40 years old, who is the (self-appointed) tour guide of the village. He waits patiently for buses to pull into the bus stop at the top of the hill, instructs the bemused tourists to follow him, and then accompanies them back to the coach after his guided walk, standing with his wallet wide open and a big smile, waiting for tips. Needless to say, Paquito does very well out of this casual work. He’s something of a local celebrity – he’s appeared on the local news, he was instrumental in promoting a local saint to appeal to Catholic pilgrims from all over Spain, he’s printed his own T shirts and branded himself, and just before I came back to the UK, he even wrote a successful book. Paquito’s parents were told he would never amount to anything, and yet he’s proven that his entrepreneurial spirit rivals that of Alan Sugar or Richard Branson.
Call me ignorant, but until I stumbled across a segment from the Victoria Derbyshire show last week – clip below – I had absolutely no idea that UK law allows for termination up to the moment of birth in the case of ‘foetal abnormality’. The moment of birth? Surely there’s a name for that. Heidi Crowter, who has the same condition as Diego, agrees. She’s petitioning the government to change the law, which is now 50 years old and (at best) completely out-dated.
Victoria Derbyshire also asked Heidi what she would say to a couple who had received news their unborn child could have Down’s syndrome. Heidi responded: “I’d say, don’t be scared, and carry on with the pregnancy. And I would also give the advice to meet someone with Down’s syndrome, and really get to know them and really see that there is a person behind that chromosome.”
I know that on a personal level, my life without Diego in it would be far less enriched. I can say with certainty that I’d have learned less about love, about the simple things in life. I’d be more cynical. I’d have laughed fewer times, danced fewer times, and maybe I’d never have discovered how much I love being around and working with people who were born different, people who a significant section of society still cannot accept and understand – let alone see as equals. This needs to change.
Heidi is backed by actress Sally Phillips, whose son Olly also has Down’s Syndrome. Phillips has argued: “Given advances in medical care and quality of life for people with Down’s syndrome, the different right to life is beginning to look not just dated but barbaric.”
Paul Conrathe, the lawyer supporting the families, stated: “This case addresses a matter that is fundamentally discriminatory — that unborn babies with a disability, and in this case Down’s syndrome, should be aborted up to birth.”
In the past ten years, there has been a 42% rise in the number of abortions for Down’s Syndrome. Many of these ‘abortions’ are carried out at birth. Wait. Can you really ‘terminate’ a newborn baby? Is that a fair term to use, or is it just a vile euphemism? It’s a baby. A fully-formed human being. It’s not simply a bag of cells; that baby has sentience. It feels pain, disabled or not. The 24-week deadline on abortions surely should apply to all babies, no matter how many chromosomes they have.
To be absolutely clear, I can’t (and I won’t!) judge or blame the parents for this statistic. I’m sure they went through hell, I’m sure it was the most difficult decision they ever had to make, and I genuinely believe it’s not their fault that medical practicioners (specifically) and society (in general) has filled them with so much fear that the idea of keeping a baby born with Down’s Syndrome seems an impossible choice. Many parents of children with the condition have reported that they were encouraged – even pressured – to terminate the pregnancy. This seems insane in today’s world. I like to think that Heidi’s suggestion that getting to know a person with a dif-ability would lead to a sea-change in attitudes is probably correct.
I write this blog from the point of view that all lives are valuable, that all humans have the potential to achieve above and beyond what is expected of them, that leading a fulfilled life is not something that is reserved for those of us who society deems normal and acceptable. Disability does not need to define a person. Having a child with complex needs is undoubtedly a great struggle, but over time I have come to believe that it is nurture, rather than nature, that affects whether or not a ‘difabled’ child will thrive or not – especially when discussing Down’s Syndrome in particular.
I once worked in Eureka children’s museum cafe while at university, and a colleague of mine was born with the condition. Sarah was highly efficent and hard working. She took great pride in her cleaning duties, she always had a smile for the customers, she adored being able to help them, and even when they complained she would find a solution that most of us hadn’t been able to see. This is why I hate the word disability. It’s offensive and it’s inaccurate. Sarah has abilities I don’t have, as does Diego, and Paquito, and arguably everyone I work with now who was born with some kind of ‘defect’ or ‘abnormality’. My music sessions have proven that many difabled people have better rhythm than I do – and I’ve been playing drums for 4 years!
So how about instead of allowing (or even encouraging) parents-to-be believe that their lives will be entirely ruined if they go ahead with the birth of a disabled child, we give them all the resources and support possible to make them feel strong enough to cope with the undoubtedly challenging – but very rewarding – journey ahead?
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