Tuesday, 22 November 2016

Die hard.

I have walked in the rain.

Water as drizzle, as mist, as spittle. It merely taps on my skin, only damp, nothing menacing or pressurized, nothing harsh or vigorous. Drip. Drip. Drip.


I have run in the rain. Water as torrent. The back end of hurricane, having raced over ocean and mountain range, lashing and whipping its ferocity, rendering eyeglasses so wet they needed removing. Half blinded, soaked, ravaged. I ran.

But the sun...

The sun - oh, it has boiled and roasted and baked and burnt me. Made me faint. Made me freckle. Made me blister. It set. That sun. Our sun.

Our Son.

The Son, he has shone. He has glistened and warmed and enlightened and risen and fallen. That Son. Ours. Everyone's. Life's.

Shining. Shining. Shining.

The earth. She. (Why She?) She has absorbed both water and fire. The planet has embraced and fought off the onslaught, that rush of runoff down gullies and straight back to the sea. That sea of Everyone. Of Everything. That sea of yesterday and tomorrow. The earth. Our earth, from which grows both the flowers and the weeds. Those blossoms feeding the bees which make all of our survival possible. Those weeds which choke.

Those weeds which choke.

The earth. This earth. Our grounding and place and space in time. Mother earth.


Survival of the fittest means, what? Exactly, what?
What is 'fit'?
Is it physical? Mental? Spiritual? Emotional? All of these?

Four and a half decades have taught me that each is heaviest in value to some.
To the athlete, the physical - speed, grace, lift, rise, success. Winning at all cost. Glory.


To the scholar, the knowledge - the books read, the history, the supposition of what all the tomorrows mean. The Knowledge.


To the priest - the love, the compassion, the stories and learnings. The purity of soul, to repent for sins of the fathers. Of the mothers. Of the ancestors. All of them.

And in penitence, still greater Glory.

To the empath, that understanding. That yearning to wear those shoes. That need to feel. To be. To LIVE.

The greatest Glory of them all.

And we, Humanity, we are all of these. Yet one does not know the other. May not care to know the other.

We, Humanity, are so flawed. So splintered.
We, Humanity, are losing. Because we are against ourselves. And we are against ourselves because we remain too far within ourselves. Too engrossed in 'me'. When you look back at what is the greatest motivation, it most always starts from within.

We are born soft, but we die hard.

Like the pick of an ice sculptor, chipping off shards of the solid to make something which has only risen from her own imagination, we chip away at life until we shape what that meaning is for us and us alone.

And in the end, it really is us. Alone.

I have walked in the rain.
I have run in the rain.
Some days I make the rain.

Some days I am the rain.

The irony of this life is not lost on me. A bullied kid, moved country, became an immigrant, married to an immigrant in that country with whom I created an amazing little boy. This heart on legs, this warrior, this firestarter, this raging flood of possibility. This boy. Our boy. Society's 'problem'.

Our world.

Is it any wonder that we will die hard?

To people everywhere, there are flaws in us all.
But we are life. We are perfectly imperfect.

Our own trinity. Our own story. Our own rain, and sun, and earth, and moon, and stars, and planets and universe and oceans, and life, and history, and future.

"I am a part of all that I have met," said Tennyson.

We are all one, yet so separate.
Somewhere in between. Ebb and flow. Rain and fire and earth.

Life still rolls, and with it - so too do we.

Friday, 11 November 2016

Liberté, égalité, fraternité my ass.

The world has gone absolutely mad this week. This beautiful video aimed at taking away some of the worry that future parents of kids with Ds may have, has been banned from broadcast television in France. Seems two women who terminated their pregnancies couldn't face up to their choices and have used their guilt in an attempt to quash our ability to express our joy.

And now I'm furious.

There is little that is more offensive to me as Rukai's mother than hearing about people who abort their pregnancies going on to weep about 'losing their baby to Down's'. Because the fact is, unless there was a catastrophic birth defect involved, they did not lose their baby to anything other than fear. To anything other than their inability to cope with the idea of having a disabled child. To be entirely impotent in facing their truth. I find these types of people so weak. So shallow. And this has all just gone well beyond the pale.

Choice is choice and I completely agree we should be allowed to make them. In no way do I judge anyone for having made such a choice. But if you cannot own the choices you make, if you cannot admit that you just didn't want to have a disabled child, you cannot admit that you just can't face putting in the bit of extra time and care and you cannot admit that you just don't want to have to change your path to focus that little bit more on any other human being than on yourself, well then frankly you are a pathetic coward. Own. Your. Bloody. Choice. Done mincing my words. Done. I don't care a dot if you've made that choice. It is yours.

Own it.

I'm so tired of playing nice to avoid upsetting other people. I'm upset too. My feelings count too.

Just as much as theirs do.

He's not yet five and I am already sick to the back teeth of constantly fighting society for Rukai's right to exist. I'm fed up with constantly having to live on the defensive. If there is anything tragic about having a disabled child, it is precisely that. The rest is not the disaster most of the rhetoric flying around would lead you to believe. My son is difficult sometimes, true. But he is also a four year old boy. What peer would be a constant angel? None. Zilch. Rhetoric is dangerous, as we've seen so often in the news this year. I've said it before and I'll say it again. Don't believe everything you read.

What people like this pitifully biased council do not realize is that this type of thing only energizes people like me more. We will not quit. We will not back down. We will not go quiet. Try us. Try us. Try us.

In the end, it is you who will lose.

Because despite your every effort to make us cry into our pillows at night instead we smile and play and laugh and dance our way through our day. We argue and shout and discipline our way through our day. We fight and champion and shape and nurture our way through our day. We teach and we challenge and we live without regrets through our day. All day. Every day. How dare anyone try to put a muzzle on our joy? We will talk. We will bark. We will howl at the bloody moon.

You will not shut us up.

The biggest sorrow in my life is actually that there is a huge number of people on this planet who don't have the first clue just how 'typical' - or using their favorite word, 'normal' - this life can actually be. The prospect of it once scared the everloving shit out of me. But the only thing that scares me now is what close-mindedness we are up against, all day. Every day. And what that will mean for Rukai when he grows up. It's not his ability I'm worried about. It's society's.

Liberté, égalité, fraternité my ass.

But fear has yet to stop me from moving forward. Onward we march. Upward we go.

Here's the clip.
Here's an explanation of the decision.

*Opinions in this post are entirely my own and not representative of any other individuals or bodies.

Thursday, 11 August 2016

More than a catch phrase: why real inclusion matters.

"Can I help you with something?" 

I wouldn't have said anything, but I spotted your friend pulling a face before you whipped around to stare at my son for the second time. The tone of my voice was far more reasoned than if you had not been a child. Had you not been a child you may have heard the anger in my heart. But you were only about 12, if that. It really was all I could do to smile, but I didn't want to frighten you. I wanted to educate you.

Pretty sure I failed.

You nervously shook your head, your eyes wide open, realizing you'd been caught out.

"Is there a reason why you're staring?" says I. Same tone. Same smile.

Same response. Then you turned back around and finished your lunch, the table quieter around you now. No more faces, no more words, no questions, no head shaking, nothing. Maybe it surprised you that another demographic who's perennially jeered was standing up to you. This redheaded mom and her boy with Down's syndrome. No, honey. We don't just take it, we address it. So sorry to burst your bully bubble.

I looked down at Rukai. My sweet, innocent little boy, just having something to eat on a sunny summer afternoon. And you had to go and bring in those clouds. I look at him and see only a child; one who is loved by everyone who has the fortune to spend any time with him. A child with quirks, with needs, with emotions (yes, some being anger and frustration). With hopes and disappointments just like any other kid. But you, and so many others like you choose only to see (worse, to define him with) a genetic condition which only makes him learn a bit slower.

This happened a few weeks ago but is still very much on my mind today. I wonder where you go to school. I wonder who your classmates are. Do you have any kids with special needs in your class? In your school? Anywhere you've ever been? Your reaction tells me not many, if at all. What a shame. What a loss. What a missed opportunity.

And here you've been on earth a fair few years. Here you should have had many a chance - like Rukai's preschool mates have had - to interact with a child who learns differently, who moves differently, who acts differently. To engage with him and only know him as Rukai. Because he is Rukai. He is not someone for people to toy with. He is a human being and he has a name. He is Rukai.

I wish you would have replied when I asked you those questions, I really do. I wish you would have actually wanted to know, to understand. But your fear and your reluctance told me otherwise and really made me sad. Because that fear and reluctance would not have existed had you not been mocking him. I know this because there have been so many other kids your age who've approached him, waved and smiled, fist bumped, high-fived, you name it. Those kids get it. Because those kids are not being ripped off by society - those kids are lucky to have inclusion as standard, in their schools, in their clubs, in their neighborhoods, maybe even in their families. They know kids like Rukai because they have been allowed to know kids like Rukai.

And although many in this very strange and skewed world would look at us and feel pity - they of the downward-angled smiles and furrowed brows which say more than their words could possibly define - it is you for whom I feel pity. You are being denied by society the most beautiful of freedoms which is to live and let live. Get to know one another. Share ideas. Share joy. Share love. Grow.

You whipped your head around to stare and as I was reacting I thought of all those who haven't. The restaurant server who brought Rukai an early bowl of chips before a late meal because she didn't want him to be hungry much longer. The retired doctor who stopped for a high five as we were checking out of a hotel, then offered to return our luggage cart so we could be on our way quicker. The little girl your age who stopped to play with him in the sand pit, returning later to introduce him to her friends. The dozens of people in dozens of other restaurants on dozens of other days saying hello, smiling, enjoying his very existence.

I chose to remember them.

I once thought reactions like yours would be in the majority. Ah, but they aren't. And this gives me hope that maybe - just maybe - all the advocacy out in the world is starting to chip away. It's like digging the Channel Tunnel with a teaspoon but we keep on digging. With bloodied knuckles and throats ragged from the constant dust, we keep on digging.

I am so sorry you haven't been given what those other folks have. I hope as you get older you don't continue to be stripped of that opportunity and instead you are allowed to live in the world as it is, rather than the world as it is imagined. Because that ableist, virtual reality where people with disabilities are locked away as something to hide, as someone to fear, is not Truth.

We don't hide around here. And we are certainly not afraid.

I hope that one day inclusion becomes more than a catch phrase.

I hope that one day disabled people no longer have to scratch and claw for equal opportunities to access education. To access all of life, not merely what they are allowed to access by those who choose to live in darkness and pretend we are not a society of mixed ability on every level.

I hope that one day you tell your friend to stop pulling faces. Tell him that we are all different and that bullying is evidence of a dark heart. I hope that you don't whip your head around to stare but you turn around to smile.

And when someone asks if they can help you with something, I hope you say "yes. Educate me."

Sunday, 17 July 2016

It's time to go.

60 minutes. One hour. A solid hour. How can something so solid be made of sand?

There was focus and intent.
There were teeth grinding and spoons and buckets and scooping and pouring. For sixty minutes.

I nearly keeled over.

I knew he loved the sand. I mean, I'd seen a bit of it - we'd bought one of those tables but it kept getting drowned by that weather event they call 'UK Summer' (which looks more to me like pissing down rain, but beggars can't be choosers). That sand was played in, but not like this. Nothing remotely like this.

A fair few months ago yet another woman entered our lives for a different purpose altogether and with no business nor qualification suggested we go test for ADHD because Rukai was 'a bit whiny' compared to his peers and didn't focus well on tasks. But wot hey last time I checked, no child with an attention deficit could sit and engage himself with sand for an hour. So there there lovey, off you go, you of the silly person brigade. Take your suggestion, crumple it up with a slab of toilet roll and flush it away, along with my opinion of you (if it can catch up, because that's long gone).

You, too, were wrong. I see a pattern forming here.

But back to today.

Sixty minutes. I may as well have been invisible. He's never sat in solo attention to anything off screen for so long, always wanting to hang out with me, clinging, looking for direction, for suggestion, for a march or a dance or a different episode of Mister Tumble on the box. And as much as I treasure my time with him, my heart has been desperately seeking evidence of his imagination brewing. Great savory chunks of that magical 'pretend play' have eluded us for so long.

But as the time ticked away, me sat there watching him shine, beneath a golden ball doing the same, high above us, here in this thing they call 'Summer' sure as caterpillars eventually grow wings, he sprouted a pair all his own. They were electric, and glittering and too bright to watch but I stared anyway. Gods be damned, I stared and stared.

I imprinted that slap bang on to my retinas so I could pack away that memory beside the rest.
Those memories which explain 'yes I can...you watch me.'
'Yes I can. Yes I am. Yes I will.'

You watch me.

Sixty precious minutes in another one of these fleeting days. These days which are all shockingly short. These days which are dwindling here within that final countdown to 'Big School'.

There is no one ready for that around here.

My heart is in my throat and at the same time below my feet. I trample it daily. I am so afraid for him, for us - that he is not totally ready, that he may be treated badly, that he may be squashed into a corral when he should instead be set free across a wild, grassy range. That he may be marginalized and underestimated and limited. My son is going to start school in under two months. And here I'm only recently elated he's sat for an hour to play in the sand. I'm elated that I've seen his pretend play hit stellar heights all in the space of a few days. From a stint on a local 'beach' earlier this week to this morning's amazing bit of longer play in a half-assed sand pit before brain said 'holy shit, go get a better one, stat - this is important. Just WATCH him think...'

So we went.
And we bought it.
And we set it up.
And he played for an hour.

Why have I only just jigged this?

What else have I missed?
What else will THEY miss?
How in the hell am I going to keep all the communication open enough to enable identification of the passion points? To know where he wants to go...

...if he still cannot speak?

It is on this point which my heart is skewered, every. single. day.

We came in from the sun to dinner. He ate with fervor and there was his favorite show before him. To entertain while I got some head space. Screen time is a necessity in this house. Some lives must have that offer of head space. No shame in this house. Think otherwise? You try living here.

Then the table is pushed away, and now cleared up he takes my hand. No words, but pulling me to the giant drawing pad he's set on the floor. Looking in earnest at the box of pens, I pull it out and he roots around. We work the cap off together and here I draw a circle. This is maybe replay number three of the circle-drawing thing but it hasn't dulled the shine because we are so very much just getting started. He takes the marker off me, touches it to the paper and then he's off.

Round and round and round. That IS the circle of life. That IS everything.

He's done it before but I'm blown away at the fact that I'm seeing him remember that it's something we've done before...I'm seeing depth of understanding and the attribution of purpose to what he is doing.

And I haven't said a damn thing. I just drew a circle.

But there is meaning. This is not scribble.
There is intellect. This is not clueless.
There is ability. This is not hopeless.

There is Rukai. This is not Down's syndrome.

This is Rukai. Drawing me some circles.

So many suggested he wouldn't.
I want to bring him to face them with a pen, to circle them as if with shame.
Look at me! Look what I KNOW! Look what I can DO! Look who I AM!

Shut up and LOOK.

My mind today, too, is racing in those circles. Round and round.

School coming.
Late milestones.
So much to plan.
So little time left to be 'just us'.
My heart is breaking yet my heart is soaring.
I don't want the time to take my little boy from me, but then again it's not really time taking him away, it's HIM taking himself away. Ahead. Forward. Upward. Onward. I am just a conduit.

And these feelings, like all those other deep emotional experiences I've lived in these short four point five years, these too are just like everyone else's.

A child is born to a mother.
There is love.
A child grows and develops and learns and thrives.
There is love.
A child becomes. A child exists. A child IS.
There is love.

There are so many wishes I have for my son as these days dwindle and our last summer as 'just us' moves further behind before it eventually drops away.

"It's time to go." They said it at the end of the Night Garden show and I burst into tears.

"It's time to go."

So my son, go. But please always make sure I know where you are, and remember I am always here.
Even one day when I am not.
I am always here.

Rukai, I hope that your life is kinder than the world is.
I hope the goodness in you draws goodness TO you.
I hope you know you are my world.
I hope the world knows you ARE.

And you are Rukai.
In sand and in circles and in my heart.
My son. My every wish. My pride and my morning and night and the flame that lights up my soul.

Fly, little man. You go on and soar. Dream big.
I could not - in any plane of existence - be more proud of you.


Brilliant blog posts on HonestMum.com

Tuesday, 12 July 2016

From that wound, red.

In 1955 there was a bus. And a woman named Rosa Parks. 1955. 61 years ago. There was a bus and a woman who said "stuff your stupidity, I'm tired, and I'm sitting here, and I'm not moving."

Someone put her in jail. For sitting in a seat. Someone forgot that we all bleed red.

In 1963 there was a man named Martin. Martin may have been a white man's name but not this Martin. No. This Martin was a black man with an enormous and beautiful dream. Of equality and brotherhood and peace. A huge loud dream. A simple quiet dream.

Someone was so afraid of equality that they shot him dead for his beliefs.
From that wound, red.

We all bleed red.

A hundred years prior there was a man named Abraham, like that name from the Bible, that great text held up before us as the word of God, the code, the creed to which we should all operate. But this Abraham was called Lincoln, he of the stovepipe hat and the original, yet now dead lost, Republican party. This Abraham said that all men would be equal. That all men should be made free. This Abraham believed too that we all bleed red.

Someone was so afraid of equality that they shot him dead for his beliefs.
From that wound, red.

Those men and those women, they bled.
Those men and those women, they fought for that freedom.
Those men and those women, they rose up and they built lives on the back of oppression. They built lives on the back of hatred and stupidity and cruelty and ignorance.

Those men and those women, they are all my brothers and sisters because we all bleed red.

One of those men became my president.
One of those men has retained his dignity in the face of eight years of abuse.
They call it 'hopey changey stuff'.

He hoped. He tried to change.

But someone was so afraid of equality that they killed his beliefs.
Yet he still believes.
And I'd elect him again if I could.

I am born of white privilege.
I am born of ableist privilege.
I am a woman. With an opinion. With a big mouth, bigger ideas and an even bigger idealism.
I have no room in my life nor my heart for hate.

I too bleed red.
As does my Asian husband.
As does my disabled son.

All red.

And we all weep salt water. Like the oceans between all our hearts and beliefs and fears and disappointments. Salty seas.

But hope floats.

Equality is only a word. Yet some people in this very mixed up, very sad, very traumatized society choose to tangle that word in animosity and scrape it against hope like sandpaper, shredding serenity, scarring righteousness. Without reason, destroying progress.

But still we all bleed red.
Let them feel what they will, and they may never understand anything more than their own hatred and angst.
Born of fear.
Born of self-entitlement.
Born of inability to see the opposite side of the coin and all the red blood flowing through the veins of the world.

There is no cure for the hatred in this world but tolerance.
There is no room for name calling and accusation and hypocrisy. For negativity and pessimism and talk of the sky falling. Unless you see space junk making a beeline for your forehead, the sky is not falling.

Your sensibility is.

We are better than this. Than all of this.
In that there is a need to say 'we must control these weapons because too many innocent people are dying'.
In that there is a need to say 'black lives matter'. Despite our pitiful history, was there ever a doubt? I am so disgusted that there are people on this earth who feel they have to explain their worth. You are my brothers and sisters and on behalf of every white face on this godforsaken blue ball I am so fucking sorry. I wish we could all do so much better.

Some doubt the relevance of that phrase, they try to dilute it with excuses, and that is so pitiful.
Black lives matter. Of course they do. Keep saying it until people get it.
Disabled lives matter. Of course they do. Keep saying it, too, until people get it.
Women's lives matter. Of course they do. Say it. Speak loudly. Roar.


There is no cure for the inequality in this world but for people to strip themselves bare of beliefs.
Why does it matter the color of someone's skin?

We all bleed red.

Why does it matter the depth of intellect? The number of limbs? A person's mobility?

We all bleed red.

Man or woman?
Man who becomes woman?
Woman who loves woman?
Man who loves man?


I don't care what toilet you use.
I don't care what God you love.
I don't care whether you wear a bra or a shotgun or steel toed work boots.

I may not agree with you but that doesn't mean you are wrong.
Unless you hate.
Then you are wrong.

Because we all bleed red.

I feel like that Leelu in Fifth Element when I watch the news. The pace, the anger, the horror, the disgust, the fear, the danger, the crisis, the death, the sorrow, it leans and presses and burns and rages and destroys every last bit of serenity I have in my heart. I can't bear to watch the news.

If that's just me, what has it done to you? To us all?

In 1863 an unchaining.
In 1955 a bus.
In 1963 a dream.
In 2008 hope.

In 2016 -


We all bleed red.


Monday, 4 July 2016

Up the hill and into the wind.

As a mother there is probably nothing worse than the fear that you are outright shit at it. I know that fear well. I'm pretty consistently envious of those people who seem to have a special 'mommy' gift - those who instinctively know how to fix everything with a stick of gum, three peppercorns and a paperclip, like MacGyver with mammaries. The ones who make their own paint and teach their kids origami by age 2. The ones whose kids know how to paint the kitchen by 4 and the fecking Sistine Chapel by 6. The theatre-goers, the kite flyers, the lesson driving and duck feeding and paper boat making kind of moms. Not me, I'm pretty sure I'm utter cack at the mom thing. Like I've fallen from the Titanic and just about doggy paddling. But I seem to have on a wet suit so at least I won't freeze. And hell yes, I've got a child to 4.5 without great trauma but...

Then we started potty training.

You can almost hear the game show wah wah wah wahhhhhhhhh sound they save for the big loser. Then again, who's the loser - me or my living room floor? Now endlessly damp and trodden on from me racing to and fro, pottty chair aloft, trying not to spill, racing down the hall to dump it out and back in time with hopes he really WAS finished when he stood up and not just overeager to hit the 436th rendition of the dance routine from the Chessington Penguins of Madagascar Cheesy Dibbles show, all with his bits wafting in the breeze like the day he was born. If I hear 'keep your eyes on the prize' once more I may have to pack out my ears with what's left of the toilet wipes. Then too, if I ever see another toilet wipe again I'll be glad...largely because I keep flinging them to the side like the tape during a Christmas wrapping sesh and can never find the damn things when I need them. And why in the HELL can I not pull one out at a time? It's always a clump of four. And then I tear the packet so it doesn't close properly leaving the next blob of four slightly dried out and useless. I swear someone's hidden a camera somewhere and we're headed for next week's You've Been Framed.

This is entirely for the birds. And there really IS not enough wine.

And there we have young son, that fantastic champion of inclusion and all things equal, who is so utterly typical in this situation it makes me want to cry. And he actually DID make me cry yesterday. But only after he showed he knew he needed a wee, then proceeded to set up the potty, position himself...and piss on my rug. Wa-hey, the glamour is endless! The excitement unstoppable!

The stains, semi-permanent.

But come on now! For the love of all that is good and holy, I've run a bloody marathon! I've done some amazing charitable fundraising. I've been a proud voice for Down's syndrome awareness and disability rights, and equality and progress, yet here I am stagnating on wee. Ah this life, this life this glorious life. This typical life.

Life 1, mommy 0. Life wins. Always, life wins.

I'm knackered just thinking about it. I'm knackered because I've been battling that 'I am utter crap' fear for what feels like forever - that fear which camps out in your head, builds a giant fire pit and starts burning all your achievements, then smears ash about your face and prances around like Keith Lemon taking the piss out of Fearne Cotton. But I stop and look at it and realize I'm not crap. Crap is crap. And everything I am experiencing here is shared, and normal, and typical and every mom from every corner of the world has done this thing...when their kids do their thing.

Aside from feeling like I'm a candystriper who's drawn the short straw and with it, bedpan duty, it's all part of the journey as an old friend once said. The road is truly long and we all share it. Sometimes it's streaming with wee and we can do little but clear up the mess but there we all go forth and by God, we live. We all live the same.

The other day I was out for a run, chugging up a particularly challenging slow incline. I set my tempo and pushed forward, all while pondering this behemoth potty training challenge, and before it the diagnosis challenge, and the family challenge, and my long-ago bullying challenge and all those life challenges that had brought me to that very hill, in that very place on that very day. Those rolling hills, those peaks and troughs, just like life. All of life. I realized that in any life worth living we are always headed up the hill and into the wind. And never will we see what's on the other side unless we dare to make the climb.

Progress. Baby steps. Climb baby climb. But first pass me another packet of wipes, will you?

Thursday, 2 June 2016


In case you've been living in a shoe with umpteen children with whom you didn't know what to do over the past five days or so, you will know that people across the world are up in arms over the Cincinnati Zoo shooting of an endangered gorilla after a toddler fell into its enclosure. It is a 'damn fool shame' as they say in the old south, that this glorious beast was exterminated so quickly. And it was quick. And it was a shame. Let us begin with that.

But only after a child was tossed around like a ragdoll in its enclosure, twice at that, pushed over, head underwater, permanently traumatized. And judging by the very clear video it sure looked to this parental eye like said toddler was about to get throttled and finished off by a gorilla. That boy will never be the same. Seriously, who gives a rat's gnarled ass about what his mother did or did not do? What the zoo did or did not do?

I care about that boy. He was four. Or three. Believe whichever paper you read.

Sue the zoo! Says the mom.
Stupid mom! Say the detractors.
Did what we had to! Says the zoo.

Believe whichever paper you read.

Who to believe? Expert A or B? The lady or the tiger?

As the mother of a four year old, all I believe is that this doesn't remotely register in my 'things that are ok' file. I believe the right decision was made at the right time by the zoo. The mom made a dreadful mistake in thinking her child was actually listening to her, and the world lost one of fewer than eight hundred members of an endangered species as a result.

(Enter screeching brakes sound effect...)

Now stop. "Now hold it now," as my Pops would've said.

Here's the real problem I have with all of this. The thing that doesn't register and why I have such a rigid and furious opinion about it all. And knowing that I don't bloody write about gorillas you may be ready to hear this. If not, sit down, buckle up and listen.

The outcry includes statistics about said endangered status of these silverback gorillas and how the world is minus one more due to the circumstances surrounding the situation. There could very well be half a million people upset by it all. Maybe more. Upset enough to argue. To 'unfriend'. To be hateful and spiteful and...just 'shouty'. About a gorilla.

Hold that there.
Put it in your cookie jar, your bum bag, your kitchen sink to soak. With the forks and the cake tins and the soggy, greasy old sponges. Soak it up.
Hold it.

Now turn around with me and look outside the Cinci gorilla moat back into the real world.

Come on in. Here is the story you should be shaking your fists about. And shrieking and arguing and unfriending. And if you're not, I am the first one to say shame the hell on you.

If you read me, you know my son Rukai has Down's syndrome. You know he is Rukai first, he is not a diagnosis, he is nothing to fear, to be ashamed of, to challenge, to question, to discard.

He is Rukai. He is a boy. He bleeds red. He feels, he learns, he lives, he loves. He is no cabbage.

Nor am I. Nor are you. In fact he bests me because he tries harder. At everything. And I sit back in awe and in some form of shame.

Yet there exists a new, non-invasive 'supersafe!' pre-natal pregnancy test about to be rolled out in the UK (has been around for zonks elsewhere) which is meant to detect Trisomy 21 (Down syndrome) minus the great big scary (risky!) needle prod to the guts. There are all kinds of shiny happy fluffy names for this test which have to do with harmony, serenity, inner peace, om shanti om-ness, you name it. 'This will make you feel glad you won't have anything other than a perfect child!' kind of juju.

'Fill our coffers with your purchase and we'll prevent your fear!! Terminations R Us!!'

I don't believe in the power society gives to statistics so I won't quote percentages (that's what Google is for) but there are plenty of them dotted about, outlining what this means, those stats and papers and talking heads and all such things which will tell you - by any stretch of the imagination - that this will undoubtedly one day entirely eradicate Down's syndrome.

The NHS - funded in part by my tax money - wants to roll out a global test to eradicate people like my son. This test is already being used as standard in other countries around the world, including my home country the USA.

And you are cheesed off about a gorilla?


My own are an abyss and they are all called Rukai. My views have changed since he came along. Before him, I was ridiculous. I was society.

But society is clueless and society is wrong.

That is a bold thing to say but I am bold now because I know my son.
I know 800 gorillas is a shame but 0 Rukais is a tragedy.
This I know.

There is a test.
People are investing huge sums of money into this test.
Uninformed women are desperate to have this test because they are being poisoned by fear.
Private clinics and manufacturers are counting pound signs for offering this test.
Doctors are recommending this test.
To kill off people who have the same condition as my son.

Because they supposedly have no value.

And the only people upset about it are the select few who know what a steaming pile of fearmongering feces it is. There are more people upset about the shooting of a gorilla than there are who care that people like my son are poised to be erased from humanity.

That they are not valued as human.
That they are not expected to contribute to society. Nothing. Not a dot.
That they have such low expectations shackled upon them they are merely boxed into statistics formed back when the "best solution" for people with this condition was institutionalization.

Because they supposedly have no value.

And they are not bloody THEY. They are Karen Gaffney and Oliver Hellowell and Chris Burke and Madeline Stuart and Sarah Gordy and Pablo Pineda. And how long have you got?

Oh they all have value. What have you achieved today? How high have you reached? Top shelf of the fridge?

Never underestimate the power of the human spirit. That doesn't require a chromosome count, my friends.

For so many, my son's life and contribution to the world is worth less than that of a gorilla. You want to free the gorilla and deny others like my son the very right to exist.

You want to light me up? That there is rocket fuel.

Society has a hell of a lot to answer for. Google the meaning of 'Harambe' and you'll see how utterly ridiculous this all is.

Imagine the doctor looking you square in the eye and insinuating that your firstborn will amount to nothing.

Then see what you do about it.

Just imagine.