World Down’s Syndrome Day: my brother, Joey.

It’s World Down’s Syndrome Day, and I wanted to write something to honour my younger brother Joseph and raise awareness for his cause.

As of 2018, a new advanced test for Down’s Syndrome, (Non-invasive prenatal testing) will be rolled out to about 10,000 women per year who are considered to have a higher likelihood of giving birth to a baby with this condition. In places like Iceland, 100% of babies diagnosed with Down’s Syndrome are aborted. This increase in screening will mean that fewer children like Joseph will have a chance to live.

Of course, there are conditions where a woman cannot, for valid reasons, bring a child with Down’s Syndrome into the world, and in some cases this is kinder. But a child with Down’s Syndrome is not suffering with a chronic disease. These children aren’t sickly. They require help and support more so than other children as they cannot learn as fast as we can, but many grow up to have stable jobs and take care of themselves.

I think it’s important to debunk the myth that scientists, such as Richard Dawkins, propose on the subject of this condition. Dawkins would have us think that children with Down’s Syndrome are miserable and ailing; existing only to suffer. Dawkins publicly told a woman on Twitter that if she was knowingly pregnant with a child with Down’s syndrome then the only ‘right’ thing to do would be to, ‘Abort it and try again. It would be immoral to bring it into the world if you have a choice.’

Immoral.

What Dawkins proposes, to me, is eugenics. He propagates a vision that humans are here solely to reproduce and to, consequently, advance the human race. A simple matter of evolution. He renders people with Down’s Syndrome as entirely dispensable, given that their function as a human, in Dawkins’ eyes, is void.

Richard-Dawkins-cap

People with Down’s Syndrome cannot contribute to the economy or the perpetuation of the human race, but they can lead fulfilling lives. Granted, there are couples who cannot bring a child with Down’s Syndrome into the world for viable reasons but this is not one of them.

I could tell you so many reasons as to why my brother Joseph, known to us as Joey, has been nothing else if not a gift to my family. He is a person who wakes up every day and is enchanted by life. He gives love and joy back to a world that can be unkind.

Joey is a sentient human being, not an economic parasite. My argument, however, doesn’t make sense in scientific Dawkinsian terms. It’s emotional, not logical. Emotionally biased and not at all objective.

Those who meet Joey tend to walk away from the encounter as slightly more enriched individuals. Among his very many quirks of personality, he is entirely charming and extremely good company. He is known at Gloucester Cathedral, where he goes to the children’s church every Sunday, for enthusiastically singing the hymns and shouting out random words like ‘marmite’ and ‘ogan’ (a hilarious mix of ‘organ’ and ‘ogre’), just to lighten the mood. At my great aunt’s funeral, Joey decided the appropriate farewell was ‘Merry Christmas.’ And then there are his nicknames. my dad is often referred to by Joey as ‘big, baldy head’ which has since become a term of endearment.

If I ask Joey to do something, he sighs and rolls his eyes like any typical teenager would. He grunts every time he is asked to go for a bath. When he’s told to turn down his music in his bedroom, he’ll wait until you’ve left the room before cranking it up even louder.

Joey has a smile that leads to laughter so contagious that the hardest of hearts would melt in repose. He is cheeky and mischievous – that is, when he can be bothered. Joey doesn’t really stand, he reclines. He doesn’t walk, but shuffles. He knows no urgency. He moves everywhere at a snail’s pace. A big bundle of joy that you can’t move for the life of you.

Ultimately, Joey doesn’t really care what you think. If he wants to belch in public, he will. If he detects a tone of condescension in your voice, he’ll tell you, quite simply, to p*** off. He knows no bounds. He is completely uninhibited by the superficial social graces that we all perform and that’s what gives him his individuality.

Joey understands a lot more than he can say. He’s receptive to the troubles of those around him and while he can’t offer words, he will offer comfort in gesture. There has been many a time where I have sat and sobbed, and he has rubbed my back and put his hands in mine. An unspoken understanding.

Unlike the rest of us, Joey has no self-pity. He does not understand what it is to be unkind, selfish and resentful. He views every day with a sense of curiosity and wonder and appreciates the small things. The ‘squashed eggs’ (scotch eggs) he looks forward to having every week on a Sunday are symbolic of this ability to find joy in triviality.

To be around Joey is a wholly immersive experience. He will smother you with love and affection and in the same breath remind you that you are fat and bald.

If you distil life down to its brutal essence – the matters of life, death, reproduction – then you get an argument like Dawkins’, one that is ill-informed, reductionist and lacking in humanity.

Joey performs the same function as we all seek to do: to love and to be loved. He triumphs in life simply because he is entirely unashamed of who he is. We could all learn a thing or two from a person like him.

 

 

 

 

 

 

3 thoughts on “World Down’s Syndrome Day: my brother, Joey.

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