I wrote a poem.

It's a new year and as I wrote last week, I just want to write. I used to write poetry in my late teens and early twenties. There are spiral bound books full of scribbled teenage dreams in my wardrobe. They were mostly about boys who broke my heart. Really lame.

I had another go, 17 years from when I started. Here is my poem. 

I see how you are physically shocked when you see me.
You stop mid-walk, mid-sentence.

Mouth agape like a flat bicycle tire tube.
You stare.

Oh my god.
Wow.
Sunburnt.
Did you see her?
You laugh.

And you walk off. 

Our bodies turn to see if one another is looking. 

And our eyes meet one last time. 

I'm not afraid to look back at you until you become uncomfortable. 

I'm still looking.

You present me with platitudes that hang 

around my neck - loaded, strangling. 

They are compliments to you but weigh so much more for me.
Rusty rather than golden, 

I'd be ungrateful if I refused to accept them.

Even though.
Inspiring.
I know someone who...
Despite.
Still pretty.

That's not your child being shy.
That's your child frightened of my difference.
Hiding behind your legs, pointing, burying their face into you.

Mute to my greeting. Your child is too scared to look at me. 

There's 30 years between me and your child, 

and this moment takes me back to the playground. 

I'm still sad.

You tell me I'm angry for speaking out about discrimination and ableism and pity.
That my words make you scared you're saying the wrong thing.
I'm siding with the angry crowd, 

and I'm better than them, you assume. (They're my people.)

Calm down, lighten up.
It's best to just let things go, you say.
Not everything's a battle. 

I'm still writing.

There's an organisation researching for a cure.
Meanwhile, the every day is forgotten.
The every day maintenance, every day resilience and every day battle-

fighting with the surprised, condescending, scared and deniers.
Oh, but one day. Not now.
One day, they say, I won't have to look like this.
I'm still proud.

(Image description: pink and purple swirled paint. Text: "I'm still.")

Appearance diversity: Andy Jackson - a body shaped like a question mark.

I've known Andy Jackson for around nine years now. I used to perform poetry in cafes and pubs in Melbourne and he was either organising the event or performing poetry, or both. He's an accomplished and celebrated poet - published in Australian and international publications, his book of poems was shortlisted for the 2010 NSW Premier’s Prize for Poetry, and has performed locally and overseas including The Age Melbourne Writers Festival, Prakriti Poetry Festival [in Chennai, India], Goa Literary & Arts Festival, Australian Poetry Festival, Queensland Poetry Festival, Newcastle Young Writers Festival and Overload Poetry Festival. Andy also runs writing workshops.

Andy and I reconnected in February this year when I read out a piece at Quippings - a disability arts event at Hares and Hyenas in Fitzroy. Andy was in the audience. We've been emailing back and forth and met up again recently before he went off overseas for the second time in a month (lucky guy!).

I've always been curious about the curvature of his spine, but never asked him.

He tells his story here today.

"In the last twelve years, I've had the pleasure of quitting four positions – the Commonwealth public service(Child Support Agency, would you believe?), a cafe-venue-bar I co-owned called “Good Morning Captain” in Collingwood Melbourne, Medicare Australia (yes, in a call centre), and a claustrophobic admin job for a micro-managing tax lawyer. And I've lived in eight different houses in the last twenty-five years (though, yes, all of them in Melbourne). But there are two things that I could never leave, even if I wanted to. They define me. I'm as inseparable from them as wings from sky, pith from fruit, thought from words.

Those two things are Marfan Syndrome and poetry. Marfan is a genetic condition that affects the functioning of connective tissue – it can affect the heart, the eyes and joints, but each person with it is affected in very different ways. The most critical of course can be the aorta, which can tear suddenly if put under too much pressure. Quite a few people who didn't know they had the condition have died from an aortic dissection. Being one myself, I'm beginning to feel I can recognise someone with Marfan – they're usually quite tall, very long-limbed, with fingers you'd expect from a pianist. Many of us have some kind of skeletal irregularity. For me, it's a very noticeable spinal curvature. I have what you might call a stareable body.

Most of the time, of course, I live my life and people relate to me as they would anyone else. There is certainly a lot of typically-Australian furtive staring, along with the open-mouthed curious children (and their uncomfortable parents). But now and then, something memorably bizarre or unsettling happens. At a Job Network (which shall remain nameless), I was called in to attend a mock interview – there was a position going and they might refer me for it. I thought it all went well, until I was called back afterwards and told that it probably wasn't a good idea to wear a backpack underneath my shirt. I was too stunned at the time to realise what she was talking about, but I did send off an assertive and educational email afterwards. I've had fundamentalist Christians and New Agers say they can heal me, who keep persisting with their offers even when I say I'm fine as I am. A few people have wanted to touch my back (as if it will feel any different to their own). I've had words and bottles thrown at me from cars.

When I step onto a stage to perform poetry and dozens of expectant eyes are on me, I can't say it's uncomplicated. I suspect I got involved in reading poetry because, subconsciously, I wanted to be in control of how I was seen. I made myself visible on my terms, and spoke words that complicated people's experience of me. One of my early poems begins “I have a hunch” (long pause) “that curvature can be aperture”.

After performing and publishing poetry for over fifteen years now, I know it's not actually about me. It's communal. And poetry holds an incredible power, regardless of its low public profile (perhaps even because of it). Poems have their roots in intensely subjective and often private experience – the inarticulate and compelling bodily reverberations. Like trees, these stirrings reach for the light, for the nourishment and transformation of language. So, we write and publish and recite. And in that public space, the audience or reader's empathy or affinity is activated – the poems cross over from the self to the other, from “I” to “us”, shining the light of language on the bridges that connect us. I have no doubt that poetry and Marfan will continue to lead me into some amazing territory, to meet familiar strangers, new confidants and friends.

Oh, and just so you know, my heart is regularly monitored and is fine. Perhaps for that I can credit poetry, or my other “inseparable”, my partner Rachael, with whom I travelled with to Ireland to perform our puppetry-poetry collaboration “Ambiguous Mirrors”. Which is another (poetic) story..."

Andy Jackson blogs at Among the Regulars.