Wednesday, 13 September 2017

The Consequence of Fear.

Maybe it's the hair. Surely that's got to have something to do with it, the fire burning straight out the top of my skull, red filament catching the wind. I have probably burned forever. Like magma, I simmer and pop and simmer again.

But something recently has burnt hotter. It's burnt me to the core and straight back out and luckily like that TV mother of dragons I can burn and live to tell about it. So here, I'll tell you about it.

How would it change you if you knew that swathes of people living and breathing and moving around on this great planet believed - beyond the shadow of a doubt, that your only child would be better off dead? Without knowing him, or you, or anything about your lives, better
off dead.

Chew on that: Better. Off. Dead. Not laughing and dancing and making friends and going to school and cuddling and...well, you get it.


The more of an activist I become, the more I discover what people really think of Down's syndrome, the less I want to absorb from those people, yet the more I seem to stumble upon them. A vicious catch 22 and it's been splintering my resolve. I stand, but only just. I have been entirely frozen and unable to write lately because I just cannot constantly think about this.

But I have to. I haven't the luxury of a choice. Because it's out there, and there's so little I can do about any of it so I do only what I am able.

When you hear in the news that an entire country (Iceland) prides itself on 'eliminating Down's syndrome' when all that they've done is to prevent anyone from being born with it via terminating pregnancies, well...that, folks, is kindling. (It is also Eugenics.) Light 'em up.

My son. My beautiful Rukai, better off dead? Really?

Better off dead because he does things more slowly than everyone else?

Better off dead because he has a greater propensity for acquiring some health problems - most of which a whopping motherlode of other people will acquire anyway?

Better off dead because he struggles to walk, to speak?

Better off dead? No. No he's not.

How would you feel? Would you burn? Would you blaze?

I do.

Rukai takes a longer time than most people to do most things, but he can and will do them, in his own time. Yet people constantly throw him into a box labeled 'incapable', and 'lost cause' and worst of all, 'better off dead'. Three copies of a chromosome and shazam. Better off dead. Clearly I must be imagining all the joy and the progress, all the happiness and the possibility, all the success and the little triumphs. I must be imagining all of it.

Oh you bet I burn.

I burn with the memory of what we were told to fear and so what we believed, and how we were treated, and how every memory of my only son's birth always begins with a billion layers of sorrow cloaked over us by others. In the fog of that sorrow, I cannot go back and easily remember the delight in looking at our new family member, holding him close, enjoying our beginning. That beginning, our enthusiasm, all of it, was ripped away from us by people who didn't have the first clue what Rukai would be capable of. Many linger still. And they always will. There is no escape.

My mind and heart are ablaze. I burn. I know this will not change.

We awaken every day ready to go to battle for him. That, my friends, is what is difficult about having a child with a disability. That we have to fight so hard for the world to just let him in. I'm so bloody tired. I'm so bloody disenchanted.

I'm so bloody.

Because all those who would look at him 'on paper' and immediately think 'better off dead'? They know nothing. They were wrong. He will succeed, in his own time. Do not underestimate him.

He is my son. Don't you dare.


Fast forward to late August 2017. Our mini bus parked up at the foot of the mighty Ben Nevis, tallest mountain in the UK. Stacks of people, mostly strangers to each other, piled out, loaded up with gear. Last minute pitstops behind the bushes and off we went. I was about to undertake the National Three Peaks Challenge: climb the three highest peaks in England, Scotland and Wales over 24 hours.

I'd been training for the hike since January, with a combination of gym work, running and long hill walks. Having completed the Yorkshire Three Peaks in April I was fit and strong and far more ready than the last attempt. And I started out with a bang, even surprising myself at the pace I was keeping with the group into which I'd been placed. As the terrain grew steeper, I slowed but kept my cool, took it down a notch and steady on. Lungs burning a bit but even pacing and uncomplicated terrain made it manageable. The leaders got away but I was still going at a good clip.

I was feeling great until we rounded a corner and now I'm looking up at a steeper, more complicated scramble up uneven steps. If you've climbed anything you know it's easier to stick to a slow incline vs steps so I was trying to pick out the lesser of the two evils. Along the right was a dirt track - perfect terrain, but with a drop straight down the side of the mountain. Just one look and my breathing went to hell - I couldn't move away from that edge quickly enough. I thought of my boy at home, the words of my husband 'if you don't think you can do it, just stop, do what you have to but be safe'. And that path didn't equal 'safe'. In retrospect, I think I may well have been hyperventilating. At that moment, I was fearful. The realisation that I was being rushed up the side of a mountain, this was dangerous, one false step and there's a motherless child at home, well that didn't bear thinking about. Still I kept moving.

As I picked my way up the steps, my breathing grew even more ragged. A sure-footed and far braver friend was climbing with me, and having been well in front came back to check to see how I was. With the warmth of the day I assumed my struggle was down to overheating so she got my bandanna wet and I felt a bit better but still ridiculously uneasy.

Onward I went, still many others passed me. I dug deep and somehow managed to bind up that fear, pack it away and get beyond it. Until a sudden voice in my ear jarred my concentration.

"This pace is ok," said he, "but if you drop any slower we my have to turn you around at the waterfall."

You're too slow. (Better off dead.)

And there was the turning point. That subconscious memory. That box. That box. Throw away that goddamn box. Piss off with your low expectations.

I said "ok" (like hell you will) put my head down (here we go again) and got moving. Underestimated, just like Yorkshire. I couldn't believe it was happening. Again.

In my head 'this is so dangerous, please don't fall' was at raging battle with 'you must hurry, they want to bloody stop you again. Go go go.'

I pushed myself to the absolute limit, til at least an hour later I spotted the group of people stood opposite the waterfall I had been chasing. Don't make that checkpoint, they take my summit. They'll stop me. The fear in my guts fell over the side of that mountain and I absolutely launched myself across those slippery stones.

"Have I made it?" Gasping. Red faced from exertion and anger.
"Oh yes, plenty of time."

You rotten, heartless sons of bitches.

(Better off dead.)
(Why do you bother? Go ride your sofa. You're too slow.)

As it happens, we made that summit. But the way down was full of those very same steps, and that fear came back with a vengeance. Don't slip, don't slip. Be careful. Yet there was no time to sustain it, we had to keep moving. I found myself taking risks I had no business taking, at one point actually barging past people who were just out there to enjoy the mountain. I hated myself at a few points for being so brash, so hurried, so agitated. A long sandy stretch and now we're actually jogging down. I looked around, this perfect sunny day, views up to forever and I'm running down a mountain. This was certainly no way to see Ben Nevis. At one point, I fell over. Cursing. Cursing, all the while. Stood up, brushed off, kept racing down, down.

My final clock time was about 5 hours 19 minutes. I'd climbed Ben Nevis in 5 hours and 19 minutes. Still that wasn't good enough, I was supposed to do it in 5. Was I? Ok then.

I wouldn't finish that challenge. I was slower than most everyone else.
I wouldn't finish that challenge. I was put in the box titled 'non-finisher'.
I wouldn't finish that challenge. I was underestimated.

To hear 'DNF' announced in your ear at the end of the day isn't pleasant. But it came with an asterisk: I did not finish because I wasn't allowed to do my own thing.

That fear of being timed out for the duration, of being excluded, of failing, all piled up together cost me my challenge. A hard landing down a step on a right knee already weakened by the tiniest of injuries weeks prior finished my hopes. 20 minutes up Scafell Pike they stopped me from continuing to the point I'd requested to stop myself. The detail now so far in the past, that anger now so pointless, I've thrown most of it into the wind, but I will say I heard over the radio this statement by a 'guide':

"Take those steps at a good pace, so if the three in the back fall behind, you can turn them around."

Set them up to fail.

(Better off dead. Go back home, you aren't fast enough.)

Light 'em up.


For at least two weeks after that 24 hour period, I burned with a fervor. And I couldn't pinpoint why the experience upset me to the very marrow. But it did. And now I know why. And now, so do you.

Here is a little boy. This little boy is better off with us. In life, and very much alive. Still I know that when he gets older people will be afraid of him - and they won't quite know why. I've seen pregnant women look at my son and wince. Just the same as I've seen people pity clapping me over finish lines, telling me to keep going, you'll get there! And when I do, the bunting is down, the band has packed up and everyone has gone home. And they're always out of bananas. But Rukai and I have something very much in common, and that thing is what drives my every breath: there will always remain a line that we both seek, a point 'out there' to which we run and crawl if we have to, a line that is always ridiculously hard to capture. But that line will always be crossed one way or another. In good time.

Because you see, as it happens, life is not actually about speed.

Life is about conquering those fears, challenging that status quo, attempting things that you are not good at just because you're not good at them. It's about smashing challenges you are terrified of and trying again when you need more work than most to succeed...whether it's climbing a mountain, finishing a marathon, or giving birth to a child whom society will view as 'broken'.

The true consequence of Fear is unfinished business. It is separation. Impatience. Fury. Angst. Sorrow. It is broken societies with impossible expectations and the inability to care for its most vulnerable members. It is eliminating people from existing because you don't know anyone else like them, and that lack of knowledge scares you deeply. We fear that which we do not understand.

The consequence of Fear is a slow slog up a dangerous path. Pointing our feet towards the top of a mountain that some people would never have us reach. But one day we WILL summit. We will fly our flags and raise our arms in victory. We will look down at those who follow behind and together we will lift them up that hill.

Until then we will keep climbing, unafraid.

Light 'em up.


  1. Oh Max. This is so powerful. You are so right, tying Rukai's challenges and triumphs with that 3 peak deal. And ill informed peoples' reactions, expectations, and decisions. You both will reach the apex. Love your writing, love you, love Rukai. ❤️

    1. Thank you for your constant support, love you right back. Upwards we go. xx

  2. You did it. You're still doing it! Hope there are days where the burn is less and you remember to give yourself a break and chance to regroup. We won't let eugenics win. The world will improve. xx

    1. I'm not stopping until it does. Thank you Steph. xx