You board the plane and settle into the middle seat for an 11-hour overnight flight. You have work in the morning and need to sleep, so you scan the savannah for wild things. Your partner has the window and the man on the aisle seems gentle, but the row behind you is occupied by a beautiful woman and her two turbulent kids. They could be a problem.
The 9-year-old boy is untamed and restless, and he kicks the back of your seat, repeatedly. Eventually you lose patience, so you turn around and demand a ceasefire.
The sister – a feisty 14-year-old – spits back with a hint of hostility, “He’s got special needs, mate”.
You flash a look at the kid, and it is plainly obvious the boy isn’t normal.
What do you do?
Identify as Binary
Computers have their own language. You’re reading this because your device is fluent in Binary, the magical maths controlling all machines, including you.
Brains – human or otherwise – use digital circuits, which can exist in two states: on or off. These two states naturally correspond to the binary digits 1 and 0, allowing them to process complex information by breaking it down into a series of simple, binary choices.
A practical example might help unpack that mumbo jumbo:
My retarded son turns ten today.
By choosing that word, I create a chasm: those who think it’s too offensive to use, ever. And the rest of you. You know it’s more nuanced than that – there are times when something isn’t true or false, but, depends. Nonetheless, when cruising through life, we face forks where we’re forced to pick a side.
Had I known the severity of Aaron’s specialness when he was in Aimee’s tummy, I would have pushed for Control, Alt, Delete of the pregnancy. But given the chance now to time travel and un-birth him, I would politely decline. To ask whether something is right or wrong, in general, is independent of what you might choose to do in a moment. Things can be on and off.
Other things are binary. The Earth is not flat, and some people are fat.
Personality Test
There are many ways to divide the world.
Confronted with the special needs child disturbing your beauty sleep, you have a binary decision: pursue your grievance, or back down.
There are bad people in the world – soulless creatures like the couple who decided to tell my wife that it was no excuse, and to “control your child”.
You don’t want to pick a fight with Aimee under any circumstances, let alone 30 thousand feet up, and 3 whiskies down. It’s espeically unwise to attack a wounded cub in front of the lioness. I was next to Aimee on the other aisle, and I almost felt sorry for this couple who’d decided this was a hill worth dying on. I reached for some popcorn, looked at one of them and said, “Wrong choice, brother.”
We were at the back of the plane, but the pilot heard the roar. It was savage, and there was a moment when I worried he might have to land the plane somewhere in the Atlantic to avert a violent kill.
My favourite part was when Aimee offered them her peace terms:
“Swap seats with me or shut your mouths”.
My boy, the Hero
When the conflict was over, I turned to music, and Spotify took me back to a sterile room in Great Ormond Street Hospital, what feels like a lifetime ago. It’s not customary to celebrate your kid making it to 3-weeks-old, but we were in the mood to party. Our Limited-Edition Boy had survived a score of sunsets, and we were swigging expensive scotch out the bottle, catching our breath.
Aimee waited for me to finish a gulp and said softly, “I’ve found The Song”.
All my favourite memories have a soundtrack, the melody that returns you to the point of origin and tickles your soul. Whenever you find yourself in a frenzy, slowing down is intoxicating, so I allowed a kind silence to fill the room.
“The song is called Hero”, she said, and pushed play.
When I hear a song for the first time, I don’t usually pay attention to the lyrics. But Aimee wanted me to hear, and when words are inadequate, it’s best to listen to what we don’t say.
Let me go
I don’t wanna be your hero
A decade later, I still get emotional when I hear it, so I pulled out my laptop and decided to try answer the question my wife was (not) asking me that day.
unwanted Want
I don’t believe there exists a single word in any language to describe something that you don’t want, but once you have, you wouldn’t let go.
Christopher Reeve went from being Superman to being mobiley-challenged, and he was remarkably brave about it. I read his exquisitely named book, Still Me, and was inspired by his courage. But given the chance to ditch the chair for the cape, we all know he would have wheeled himself immediately to the nearest phone booth.
I often consider whether I’d go back in time and swap AJ for a real boy. I think of the coolest 10-year-old kid my imagination can muster, and then I kick him in the balls and tell him I prefer my one.
I didn’t want him. In theory I shouldn’t want him.
What the hell is going on?
The light is on
AJ is no work of art, or perhaps a Picasso. A special needs Kim Jong Un, his teeth resemble a vandalized graveyard, his forehead is approximately 17% too big, and - worst of all - he got his father’s nose.
And yet I can stare at him for hours thinking how flawless he is. That may be the drugs talking, but it’s also true.
The ninjas among you will cite Wabi-Sabi: Japanese wisdom that reveres the grace of imperfection. Evolution preaches that we find beauty in the broken for social cohesion - another monkey’s baby is ugly, so we adapted to embrace the grotesque.
But we all know there’s something else.
Aaron still can’t talk. He has four words: Mama,Dada, Yeah, and P’pah (which means Peppa Pig, iPad, or neither). He can’t communicate with our words, but he knows what he wants. So his language is a series of caveman grunts, hand gesticulations and spitting.
Which brings me to the next binary equation we need to solve. Have a sip...
Can Aaron talk to himself in his own mind?
Does he possess the inner dialogue that makes us Human?
If not, and the light is indeed off, I can dig it. That mean inner voice is the source of all our pain - it would be no worse an existence than mindless scrolling. The essence is the person inside the body, so I imagine what might be rippling beneath the surface.
He is certainly aware of the world, so something must be going on in there. But what?
Angels & Demons
When I think of Angels, two movies come to my mind, one of which made my daughter Ruby cry. Whether it’s John Travolta or Nicolas Cage, they play winged-beings, serving a god, haloed be thy name.
Angels might not exist, but the vision of spiritually superior entities permeates literature and theology. Buddhism doesn’t speak of white wings, but teaches that the universe comprises humans, animals, ghosts, and hell beings. Judaism goes all-in on Angels: describing guardians, warriors, messengers, and agents of God.
We might agree that these are preposterous notions, but this is Binaryland and my boy made it to One Zero, so you’ll allow me to switch the light on to celebrate his getting to double figures.
AJ is a divine creature. In many ways he is sub-human - there are aspects of his physical struggle that I’d rather conceal - but there are moments when he is Ethereal. He is an unyielding, needy invalid… and yet it is our honour to serve him.
A relationship cannot exist without communication, and where one party communicates without words, all the work is done by the listener. Some things can’t be expresssed by poets, physicists, rabbis or retards. But somehow, Aaron speaks to me.
Granted – if the previous paragraph had been written by someone else, I would have printed it out just so I could rip it up. But I am playing my special needs card.
I would rather be a philosopher than a pig, and just because something is hard to verbalise, doesn’t mean it’s magic. As Einstein said, whether you can observe something or not depends on the theory you use.
We are in a world so full of meaningless noise, why not embrace a bit of magic?
No one appreciates the physical more than me; I love a good pair of genes. But the more material something is, the less real it is. Dance with your demons – it brings them to life and makes their sting lighter.
I sit in synagogue some weeks watching the Bar Mitzvah boys, knowing Aaron can never do it. Instead of drowning the thought, I linger on the sadness, and allow myself to play out the other universe where he becomes a Real Man. I even shed a tear. (Old Drinker rules apply: vomit it up, just don’t let anyone see). Once you bring the pain out of your mind and into reality, it ceases to exist.
I like this AJ.
I think he’s Happy
There are two lenses through which we see the world: how we know it to be in our own heads, and what we think it’s like for others. Other people’s minds are inconceivable, and yet we have the audacity to say, “I know how you feel” and mean it. Somehow, we are all connected.
Carl Jung wrote of the ‘collective unconscious’, the part of the mind that is shared among beings of the same species. Dawkins believes our genes flow fluidly through generations and across species, linking all forms of life. Judaism speaks of fragmented souls, disparate parts of the same Whole.
Whatever your bag baby, we’re either all One, or Zero.
When Aimee played that song 10 years ago, she was speaking on behalf of Aaron:
Let me go, I don't wanna be your hero
I don't wanna be a big man, just wanna fight with everyone else
She was telling me to let go the son I wanted him to be. Aimee was not afraid of how he made us feel, but she was terrified that he would be aware of his own difference. Alas, Aaron is not concerned with what we consider normal, he is blissfully ignorant of the bullshit we think is important. Although he has never told me so, I know he is happy.
He may not have been the piece I was expecting in Life Tetris, but I’m still enjoying the game, probably more than you. My girls have had to deal with their bro privately, and worse, in public, but they are better for it. Aimee might not be happy all the time, yet she wouldn’t change a hair on AJ’s head.
If he is happy, and we are happy, why does Aaron make you sad?
Whether the Soul exists, or our minds are united by quantum entanglement, or our DNA has memory, there is a Common Code that makes us Human and binds us. We are inter-connected in ways we can’t begin to conceive.
You can only understand people if you feel them in yourself
You feel sorry for Aaron because Aaron is you. (Yes, I just called you a retard.)
Reasons for anxiety and fear will never be lacking, whether born of prosperity or despair. But lighten up, everything is going to be fine.
Happy birthday to all of you.
10 Years in 100 Words
It is my experience that in some areas, AJ is more intelligent than I am. In others he is abysmally ignorant: he can’t read, he has no grasp of mathematics and is yet to master the art of wiping his own ass. But in his own field of endeavour, he has no peer. He is my muse, and so for his birthday, we’ve composed a little poem.
Decayed Wisdom
1 The past is permanent and changeless, focus on what’s Ahead
2 Look present, you don’t reach the brain through the ears, but the Eyes.
3 Pain is temporary, harm persists - laugh at pain lest it harm You.
4 Don’t laugh too hard - laughter cures everything, except Madness.
5 You don’t have to be good, be Better;
6 It is fine to be sinner, yet Repenter.
7 Don’t be a loudmouth, but to disagree silently is Disloyal.
8 For insight, look deep into Nature, in foresight there must be a Soul.
9 Some things are forever, but all shall Pass.
10 Slow down, there is plenty of Time.
Nice piece, particularly enjoyed the "teeth like a vandalized graveyard” image. Re what may be going on inside your child's head - and the nature of consciousness - I strongly recommend Oliver Sacks's "The man who mistook his wife for a hat"
Powerful writing, Gareth.
Thank you for sharing your feelings in such a meaningful way.