“In a hole in the ground there lived a hobbit.” “Not a nasty, dirty, wet…
Today is International Day of People with a Disability.
No, I don’t have a disability. I have something more – I have a beautiful 16-year-old sister, Gayana who has Down Syndrome.
I’d like to share a story with you and hope you’ll stay with me, because I really need your help to spread my message.
Gayana is a bright, bubbly and cuddly 16-year-old girl who’s taken the Canberra flower market by storm. I, (Nipuni Wijewickrema) am Gayana’s eldest sister, personal assistant and loyal business partner. My family and I established GG’s Flowers – Canberra’s socially sustainable florist that employs people with special needs. Gayana’s pretty famous around Canberra as she gives out beautiful rainbow roses and a hug with all her deliveries.
It was only a few weeks ago I was shopping with Gayana at my local (giant) grocery store. Gayana, armed with a shopping list, was ready to conquer the weekly family grocery shop. Standing at the end of the mission was a delicious Milky Way chocolate bar. She promised herself the chocolate bar if she was able to successfully dominate the shopping list – a task I was 100% sure we’d conquer (together).
We snaked the shopping isles at a pace that varied to running a marathon all the way to sitting on top of a turtle. Many spontaneous grocery suggestions cropped up from Gayana – “Marshmallows, eggs (to throw on Nip’s car), apple juice, lemonade, tiny teddies and jelly cups,” she suggested helpfully.
Eventually, our shopping list was conquered. It was around 7pm on a Sunday evening and hardly anyone was around. We were both pretty impressed with our shopping abilities and couldn’t wait to pay and finally enjoy that Milky Way.
As a sister of a person with a disability, I would really like Gayana (and all her friends) to live independent lives.
All those parents, siblings, family members and friends of people with special needs out there will TOTALLY understand me when I say – independence is key.
It kills me to say, but one day, we may not all be here to love and support our special family members that so desperately need us. If the worst was to happen, as family we want to know that we have equipped our special loved ones to deal with life (the good, bad and ugly) in an adequate way. This means a lot of things – we need to teach, consolidate and support these special people in personal care, feeding, exercising and general community awareness.
However for this moment, our goal is to conquer the self-serve checkout. I figure that if she can scan and pay her own groceries she can do anything. At the very least, she has the confidence and opportunity to serve herself – as important strength to have.
Given it wasn’t busy, I took the opportunity to nab a side self-serve counter and let Gayana scan the groceries. To be honest, I was pretty proud of my little girl. She scanned, (sometimes twice – but that’s okay, it’s an easy mistake to make!) and bagged the items.
Every time she scanned, she would go searching for the ‘lines’ or otherwise known as the barcode. She was honestly so proud of herself – as was I. All of a sudden a little (and by little I mean five people) line formed behind us to use the self-serve. While waiting for Gayana to find the “lines” on the can of chickpeas a lady came up to me with a huff and a puff and asks if we “could please hurry up”.
Slowly choking inside and quickly trying to remember if it was an offence to run someone over with a shopping trolley, I innocently replied, “I’m sorry, this is my little sister who has Down Syndrome – I’m just trying to teach her how to shop for herself.”
Without skipping a beat to look at Gayana (who’s now trying to plot to get the smarties in the bag without me noticing) this lady says “can’t you bring her at another time when no one is here?”
(Insert every swear word, breathing technique and method to run this lady over with a shopping trolley here!)
No, I cannot, Canberra.
Why? Because this is her absolute right. It’s her right to scan, pack, pay and shop. She can do it whatever pace it takes. If we need to be there all night – we’ll be there all night.
I’ll be absolutely honest – I truly wanted to run this lady over with a shopping trolley. Not because I hated her – but because I hated that I knew this was what people were thinking of us over here in the corner. I timed it in such a way that it wouldn’t be at a busy time of the day, and nor did I create a scene. I couldn’t possibly understand how I’m meant to time my grocery shops to a time that would be least disruptive to everyone in the community.
As a girl with a sibling that has special needs – I see the stares, hear the whispers and feel the judgement…every day. I feel so lucky and blessed that Gayana doesn’t hear, see or understand. Those stares, whispers and judgement cut me every single time. But it’s okay, because Gayana can’t understand so therefore the only person being hurt is me – and quite frankly I can, should and will be able to deal with it.
But that makes me think – what happens when Gayana can understand? What about other people with special needs – what happens when they can understand? Why do we have to feel shit for trying to pave the way for our loved ones? Why can’t we be inclusive – all of us?
Today is International Day of People with a Disability. A day where people like me share intrinsic details of our lives in the hope that someone out there understands the battles and wins we face.
To me, the situation has actually ended on a high, months after the original incident. Gayana now can independently shop and uses the touch screen better than I can ever dream of finding the apples. That my friends, is called a ‘hell yeah’ moment in our small but important personal world. I think it’s so important for people with special needs to be integrated into every day life.
This is reason 19203 why I created a business that employs people with special needs – to ensure they have a fair go at leading a ‘normal life’ full of meaningful employment and responsibility.
Now is the time for us to learn to be little nicer with our special members of our community. I hope in my journey as the 2016 ACT Young Australian of the Year to spread the important message of inclusion – it’s starts with you and it ends with you.
If we all do our part to open our hearts, we’ll be on track to be a more inclusive nation. A place where people like me don’t leave the grocery store in tears. A place where people with special needs are nurtured by our community to be the best people they can be.