Tuesday, 22 October 2013


I've been trying all day to find the words to explain this thought.  It's a massively important thought, and may I be bold enough to say I haven't seen anyone else write or admit to this thought but I know I am not alone in thinking it.  But the damned explanation of it borders 'Rubik's cube'.  So here goes nothin'.

According to all the theory, research, statistics, etc., Rukai is what they call 'developmentally disabled'.  This classification is based upon what society knows about how ordinary children develop.  You learn A, then you can do B, followed by C and so on.  He hasn't done these things at the same rate as most ordinary children so therefore, he must be fixed.  He must be flawed and he must be fixed to be as close to everyone else as he can possibly be.


This is the same society that feels it needs to put things in boxes, to organize and order things, to make sense of things.  The society that believes in God, Jesus, Buddah, Allah, Ganesh, Shiva, Jah, howmuchtimehaveyougotI'vegotawholelistofdeitiesinmyheadandIdon'tcareifIspelledanythingwrong.

What it boils down to is this:  People need to make sense of things and children with alternative needs do not fit the mold.  And medical bods just cannot bring themselves to say 'we don't know what you're capable of, but damn, won't it be exciting to just learn and discover as we go along'.  It's easier to say 'you should be like THIS because most people are like this.  If you don't fit what we think you should be like, we'll try our damnedest to ensure we push you into our mold.'

But why?

Big people are supposed to be in charge of little people.  We are supposed to know what they need.  We have to rate and rank them against their peers.  We need to ensure kids who haven't been born with the 'correct' number of chromosomes, or the 'correct' physical abilities, or the 'correct' social skills or the 'correct' sensory reactions are constantly being pushed to absorb what they lack, are constantly being pushed to 'catch up'.

But what the hell for?  Catch up to what?  Says who?  Fuck that.  Sorry, but fuck. that.

T and I regularly sense resistance from some when it comes to our attitude and approach to Rukai's learning.  We shun 'therapy' and we shun external influence on his life.  Why must we introduce strangers to his life to push him to catch up?  And here it is:

We are not in charge of Rukai's 'end game'.  Rukai is.  Rukai doesn't need to 'catch up' to anyone.  Rukai will be Rukai.  He has his ability.  He has his possibility.  He has his drive and his motivation and his fire in his belly.  He will go as far as he is capable of going in his life, whether anyone intervenes or not.  He will be.  And he will be AWESOME.  And he won't need anyone else to bring that out of him.  He won't need anyone else to ensure his 'mental age' and his 'chronological age' match up, or come as close as they can.  Because, seriously, what is the point?

Rukai was born as he is because Rukai is meant to reach that particular potential.  Not some arbitrary societal potential, but Rukai's potential.  He is not flawed.  He is not wrong.  He is not disabled.

He is Rukai.

The reason people freak out when they have a child with an alternative ability to the 'norm' is because - due to the reaction from the medical people up their asses in the first hours/days - they feel their child will have to spend his/her entire life catching up to what society thinks they should be.  They feel they have produced an 'imperfect' person who NEEDS help from outsiders.

And that infuriates me to no end.

Maybe the thing that society doesn't 'get' is that there are some people born to this life who society thinks is missing out, and who are flawed or faulty in some way.  But as we all see our own 'God' from a different perspective, so too we should see all human beings from the same viewpoint.  We are not the same.  Stop trying to put us all in a box.

How dare anyone suggest that we apply any pressure to be a certain way on our kids?  Any kid?  Not just kids with alternative needs but any kid?

And if you're thinking it, no I'm not saying this to make myself feel better, I'm saying it because it's totally and utterly ridiculous that there is some sort of measuring device judging and EXPECTING things from people.  That is a load of hot, smelly, steaming bullshit.

Are we not all individual?  Is my son less of a person because he learns a bit slower? No he bloody well isn't.

I cannot say it enough: we do not fit a mold.  No one does.

We do not fit weight charts, and height statistics, and developmental rankings.  We grow as we grow.  I don't give a rat's ass how many years of medical school someone has had, this does not give you the right to rank and pressure my kid to meet your definition of what he should be.

He is Rukai.  Nothing more, nothing less.  He is fine.  We know this and we don't give a shit if you like it.

We know this.

And this is cosmically scary to folks who are paid to know everything.  Don't even try it on, you don't. 

Folks who are too afraid to say 'I don't know, let's wait and see,' so they try to find order in disorder.  How very damaging this is to Rukai, to all the other people in the world with alternative abilities.  Perhaps the necessity of this disorder is the point of all of this.  Look and see.  You don't know what you think you know.  Open your other eye.  Watch.  Learn.  Hush.  Listen.


Rukai is not 'dis' anything.


  1. Love this, Max. Wow. Rukai is so lucky to have you as a mom. I'm so lucky to know you and call you my friend. This is exactly what the world needs. The world needs to accept gray. It's just easier for humans to be lazy, make it black and white, judge. This resonates with me. It inspires me to write. Thank you for sharing your story.

  2. That's exactly it. "The world needs to accept gray." I will not stop asking until that is the reality. It may never happen in my life, but dare I hope it will happen one day. Thank you. xx