Life with my Bro

To my glorious Wandering Journo tribe,

This newsletter is a bit different to my previous musings. What an incredible year this has been, and continues to be. So many people facing hardships they could not have imagined only a few short months ago.

I wanted to start by giving you some news. I’ve started working two days a week as an advocate for the Disability Royal Commission through the incredible advocacy organisation Speaking Up For You.

This is about the best video I’ve found to explain what the Disability Royal Commission is all about.

If you have a disability or know someone who does, and would like some help making a submission to the DRC about your experience of violence, neglect, abuse or exploitation, please just hit reply to this email and you’ll get me and I can help. The Commission is taking submissions in any way you see fit—audio, video, written, even artworks have been submitted and are being considered by the seven commissioners while preparing their report. The Commission is still taking submissions despite Covid-19, and will continue for at least a couple of years. So make your voice heard.

Those of you who know me well know what a great fit this role is—that for most of my journo life my main motivation has been to give voice to those who don’t have a voice in the media—so they have their voice heard. I feel this role is a natural extension of my raison d’être.

It’s a wonderful opportunity to combine my skills as a journo, with my lived experience of growing up with my brother Ashley who has an intellectual disability.

And it also gives me three days a week to continue my Wandering Journo journey, and make podcasts for you my friends and supporters in Streets of Your Town and the other podcast series I produce such as Remarkable Tales, and The Gender Card.

I’ve been amazed to find how useful my Journo storytelling skills are in this DRC advocacy role. That sometimes people are just overwhelmed with the detail of what has happened to them (understandably) and how an experienced storyteller can help them release that. To me this is about as important oral history as you can get, and helps the Commission put together a comprehensive picture of the systemic issues that people with a disability still face in this country.

Right now I am sitting in hospital waiting for my brother Ashley to come out of a hip replacement operation. I’m here as his sister and advocate, as his intellectual disability makes it hard for him to communicate and understand what’s happening around him particularly in confusing places like hospitals.

So I just wanted to apologise that I haven’t got out a podcast for you this week, but to let you know that’s the reason why. In times like these, we realise that family considerations come first for all of us.

That said it’s quite a relief being able to write to my supporters, my tribe, my extended family, to help me pass the time while waiting for news on his operation’s success.

To thank you and the wonderful people who have renewed their paying subscription to this newsletter to keep my Wandering Journo dream alive, I wanted to send you this exclusive personal story column that I wrote when it woke me from my sleep only a few days ago.

I typed it out on the iPad next to my bed at 2am, as if possessed by the column writing angels. It’s my personal reflections on life with my brother Ashley. He’s two years older than me, so all I’ve known is a world with Ashley in it. It’s just him and me, no other siblings. So it’s a remarkable bond we share.

Thanks for your support and patience. I hope to get another cracking podcast to you all very soon.

Nance


Life with my bro

We’ve been having the same conversation for years now.

It usually starts with my brother Ashley talking about his day. How his budgie Peter is. He’s had a few budgies now in his 51 years. They’ve all been called Peter. So that makes life easier for him and for everyone really.

But today was different.

I’ve been coming over to help look after his beloved chooks since coronavirus hit.

He doesn’t have names for them but Ashley loves his four grand dame chooks. They live in a great chookie mansion in his backyard and I come and make sure he’s ok under the guise of giving them my kitchen scraps. I leave it up to Ashley if he wants to take part and say hello. Today he did.

Ashley was outside at his front gate chatting with one of the neighbourhood kids who stopped to chat while perched on his bmx bike. Being winter in Brisbane it was nearly dark even though it was only 5pm. But the sky was crimson red, clouds spreading over the night sky like long fuzzy red fingers, with a bat flying over head for extra dramatic effect.

It’s so peaceful in his little suburban street. This could be a street in a little country town, rather than a major Aussie capital city. Kid on the bike, Ash at the gate, and me propping up the front fence too for a chat.

I talked to Ash about how beautiful this idyllic suburban street was, with the half moon in the sky hanging over us like a lantern.

“Isn’t it beautiful Ash?”

“It’s paradise my Nancy—it’s paradise”.

There’s not many people in this world who I let call me Nancy. It’s not my name after all, but I find a lot of older people put the “y” on the end in their efforts to be polite—to get my name right in their mind. Even though it’s wrong.

But for my brother, it’s just always been what he calls me. Perhaps harking back to when we were growing up and I went through a stage at primary school where I didn’t like Nance, in my pre-teen mind I wanted my name to sound softer.

Sometimes I realise that no one in this life will understand me more than my brother. Despite his intellectual disability which makes his words increasingly garbled as he ages. But that doesn’t matter. Our bond is unspoken, unsaid, and goes beyond mere words.

We’ve walked this earth together for 50 years. In some ways he’s all I’ve ever known. My big brother, who I look out for.

It’s important to him though that I’m not his carer. Not in his mind anyway. I’ve never given him his medication. I don’t do his chores. It’s important for him that I’m just his sister. Not one of his magnificent army of angels—or as some people call them—support workers.

And I realised at that moment standing with Ashley at his front fence, that paradise he described is not just the beauty of his surrounds right now. Idyllic as this slice of Brisbane suburbia is.

It’s also about the paradise within. That he’s got a home and independence and his own life, on his terms. My Mum and Dad and I fought so hard for him to have it, and he’s one of the lucky ones.

It was a long struggle to get him into this humble Housing Commission home, in what he always describes as his “brand new red house”. The post war cottage on a big block in the suburbs that in his mind is his castle.

It almost makes all the years he ran away from home as a teenager worthwhile, trying to figure out his destiny, like many other Aussie kids in their teens and 20s do. But for Ash, it involved getting on a train and going to the end of the line, then hoping someone would find him and come and get him.

But not any more. Not in paradise. He hasn’t run away once since he came to live here on his own. His little housing commission post war cottage, that for him could be Buckingham Palace.

Little does Ashley know his struggle to be heard was one of my main motivations to become a journo. To give voice to the voiceless. He made me realise that this world is not just. But that I could fight with my pen and notebook to make it moreso.

Seeing him look out at the sunset tonight makes all the lobbying and advocating for him worthwhile. The nurses in hospital, surprised that I would come so regularly to see how he was when he was sick. The thoughtless people who asked how he got his brain injury, as if checking if he was a good or a bad brain-injured person. Whether it was his fault. As if that would affect his treatment.

I’ve spent my life since in many ways trying to figure out how Ashley could best fit in to society.

There’s a photo of Ashley and I when I was three years old with my arm very protectively over my big brother’s shoulder as if protecting him from the world around us.

Not the usual response of a kid as small as I was then.

But I remember always having this innate understanding that Ashley was my brother, yes. But also my responsibility. That I had to do what I could to make his life and therefore Mum and Dad’s life easier, so the family stayed together through all this.

When I visited him in hospital as he recovered from a recent hip operation, every time I saw him, he would look me in the eye, which is rare. And he would say to me:

“My Nancy. Do not worry about me. I will be fine.”

He wanted me to know that I’m not his carer. I’m not his Mum or Dad. I’m his sister and his friend. We walk through life together Ashley and I. I accompany him, that is all.

And here we are now, at the front yard of paradise.

It’s the best conversation we’ve ever had. Simple and profound.

“I think I say yes my Nancy. I say yes”.

Yes you do, Ashley. Yes to all of this. All this beauty in this ordinariness. You living here independently. You Ashley, the brother I am so proud of, who because you exist you employ four caring angels through the NDIS who love you and look after you like a brother too. You contribute more to society as what I like to call “Small Business Ashley” than many other people who question why you are here. And make sure you’re happy as life can make you.

Life is good Ashley. Thanks for reminding me. Life is indeed good.


Postscript

Ashley came out of the hip replacement operation well and is now recovering. Big thanks to ABBA’s support for this as his favourite “More ABBA Gold” album had a big part to play in his recovery—thank god for phones that play music bedside, hey. Hopefully we will be up dancing and singing karaoke again soon.


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