“The only disability in life is a bad attitude”
I was fourteen years old. It was another heated, hysterical argument with my Mum as she drove me to the shops. I screamed.
‘Why does he have to be so fucking retarded?’
And then I sat. I waited for my Mum to slap me for the first time.
But she didn’t.
Instead, she said not a single word to me for two days. She knew that would hurt me more than any furied hand ever could.
She knew who I was talking about of course. My youngest brother. Of course, don’t all sisters scream this about their siblings at one point?
The only difference was, my brother was, by all societal definitions, indeed ‘Retarded’.
Mum and Dad told me that he would never know any different, and by all accounts, nor would I. He was only eight weeks old when the infection ravaged his brain. I was a little older at four years old. I didn’t know any different; I just knew that when baby brother was on the ventilator, I got a new barbie doll.
I never did like that first Barbie doll.
And so a childhood was spent shaking Alex’s* chest until Mummy could pull over the car and resuscitate him. Together as a family we learnt basic sign language, and pretended that he could understand. Violent epileptic fits didn’t make us blink twice, and the house filled with the sounds of three children under five; Two squealing and one silent and gurgling. As he grew in size, so did his fits of rage. Hell hath no fury like that of a deaf, epileptic, Autistic.
The diagnosis came at no surprise; We had known before the doctors could have realised. What did come as a surprise was that Alex’s brain began to heal. His hearing returned. The seizures stopped. The talking started. And suddenly, I had a baby brother. A real baby brother.
This was a miracle, but by no means was it a fix. The family muddled it’s way through all the challenges that high functioning Autism presents. The violent fits of rage, the lack of communication, broken only by the dog like growls of a very sad little boy. But this was my brother, and I protected and loved him the most fiercely of them all.
I thought I understood. I insisted my friends not use the word ‘retarded’ or ‘spaz’, and I held him close and proud. This is my brother. They didn’t understand my demands.
Like, he doesn’t have down syndrome and shit, so why can’t we say retarded?
I wanted to tell them.
Because I love him. Because you can’t say that. Because it’s wrong. Because it hurts.
But I didn’t know what hurt was; I had no idea.
Until, at fourteen years old I woke up and I couldn’t walk.
Literally overnight I was thrown into a strange world that I had once thought was familiar. Serious Illness and disability.
The specifics, the diagnosis, the nature of the disease; None of it matters. Maybe my choice to omit this is deliberate. Maybe it’s so you never have the chance to say ‘Well at least it’s not Cancer’. Maybe because if you say that, you will continue to miss the point.
There is no greater shame than being a sixteen year old budding woman, and being bathed and toileted by your own Mum. She always kept her eyes on her toes. Her promises still echo in the air.
‘I won’t look, I promise’.
For years, time and time again I was confined to a wheelchair or a hospital bed. My world was a life of ‘could nots’. Could not walk. Could not shower self. Could not dress self. Could not toilet self. Could not feed self. Could not brush own hair.
And the whole while, society reminded me.
This is what retarded is.
Don’t pretend that you have never done it; Stared at the young girl, rotting quietly in her wheelchair in shopping centre. Or maybe you were the one that refused to look, the one that would go out of their way, so that your eyes could never meet mine. Were you the lady in Sportsgirl that greeted me with ‘Oh hello you little darling!! That’s a VERY pretty hat!’. Or were you the man that refused to serve me, and instead would only accept the payment from my Mum.
Did you know that I was eighteen? Did you know that my IQ was higher than yours could possibly dream?
The doctors strapped me to their machines, and glued electrodes to my heart, beating furiously and desperately beneath my paper skin. They took Mum and Dad into little side rooms, and would only surface when Mummy began to sob.
My baby girl. My poor baby girl.
I joined a group for Chronically ill teenagers and young adults. Our chatter was incessant, and we would forget to pause for breath.
Do they call you a retard too?
I’m sick of them reminding me that I’m a freak.
I wish they wouldn’t call me a spaz. It’s not my fault that I am fed through a tube.
I remember my first social. I had never known such fear. I understood that this was it; If these people could not accept me and be my friends, then no-one could.
Weeks were spent selecting the right shade of liptick, the dress to highlight my legs and deflect from the rotting bones. I wasn’t vain; for once, I just wanted to be thought of as beautiful. I was tired of being retarded.
I needn’t have worried. Immediately, a young man tucked me beneath the greatest shoulders that I had ever seen. It was his first social too. Yet, I became his main concern. He introduced me to everyone, and never left my side. I rarely spoke, for I was too frightened. So, he picked up the pieces, and spoke for me instead. Tears of gratitude pricked at my lashes.
‘Are you ok Jess?’
Jess. To him, I was just Jess. It was the most beautiful thing in the world.
We had no way of knowing that it would progress so severely; or maybe he knew all along, and it just didn’t matter. Hour after hour, he is flung upon the ground by the seizures that are slowly robbing him from us. He cannot talk anymore. There are some mumbles and slurs. But it doesn’t matter. Everytime he grabs me in his bear hugs, I am reminded that we don’t need words.
He once spoke for me, and now I speak for him.
I never knew my best friend with two legs; The Cancer had already taken her first. And she never knew me to be well. God knows it never mattered either. It was an unspoken understanding between us;
This is how you are to know me, and this is how I am to know you. And I love you for it.
Prosthetic limbs, chemotherapy and rehabilitation took the place of her once shining modelling career. But she didn’t cry. She didn’t scream at her God, and she didn’t ask for another life. Instead, she picked up a pen and started writing.
She wrote through her hell, and from it, came something beautiful.
‘I know it’s not perfect. I know I am missing body parts, and covered in scars. But it’s mine Jess. And it’s beautiful. It’s beautiful’.
But I saw her shame. I saw her wince as schoolgirls casually remarked that the assignment idea was retarded. The tv show, the laptop, the painting. It was retarded, all of it.
My eyes met hers.
I know darling, I know.
She was sixteen years old when she slipped away. She was the most beautiful of them all.
Her writings are to be published. It is expected that she will receive posthumous awards.
So now I ask you this; what about us is retarded?
It’s just a word, you tell me. It doesn’t mean anything. I’m not saying it about you, so like, it doesn’t matter.
Nigger. Faggot. Gook. Poofter. Kike.
You wouldn’t use these words in your everyday. You would never dare speak this aloud on the street.
So why are you so comfortable with the word retard? Why is it that you can slip this into your everyday, without so much as a guilty shrug?
To you, it may mean nothing. A joke. ‘Calm down, it’s just a bit of a laugh’ you might say.
To me. To my family. To my friends. To your neighbour, or the girl you makes your skim latte, it doesn’t mean nothing. To us, it can mean everything.
Retarded is not just a word.
Retarded is sobbing in the school toilets, and wiping the tears on the seat of your wheelchair. Retarded is being too afraid to go to the movies with your friends because your prosthetic leg will not fit, and you cannot bare the whispers. Retarded is waking from another violent to seizure to hysterical laughter, and no longer even noticing. Retarded is having a ventilator breathe for you after your face is rebuilt, only for society to point and stare all the same. Retarded is knowing that the others throw food scraps at you, but not ever being able to quite grasp why.
Retarded is not just a word.
And if you are unable to find another word, then perhaps you need to re evaluate who is the person that is truly ‘retarded’.
Today, I am twenty years old. My body continues to be crippled by my conditions.
I am studying nursing. I have a blog with over 14,000 views. I am a mentor for Seriously ill teenagers.
Do you still think that I am retarded?
Oh, and my brother?
It is expected that he will study medicine.