reverberations and affinity

Sometimes an acquaintance transforms into a friend.  Time passes, random events intervene and affinities flower.  Recently, I went to a Quippings event at Hares & Hyenas bookshop in Fitzroy – one of the most mind-blowing literary/performance events you are ever likely to encounter.  The next one is on 30th November and is entitled “Piss on Pity”, if you want a hint.  And you really should go.  Even if you’re not from Melbourne.

Anyway, at the last one, I re-met Carly Findlay, prolific blogger, appearance activist, writer and all-round great woman.  We got to talking, and she asked me to write a guest spot for her blog, basically telling my story of visible difference.  It starts like this –

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.

The blog post is here, if you want to know how it ends, but it doesn’t end, really, does it?  Poetic language and just being in the same room together can build bridges, sure, but the gulfs between us are perpetual and always at risk of expanding.  Everything needs reinforcing, extending, exploring…

Carly herself has just written an amazing post called “On ‘normal and cures and pride”.  She writes,

I see two sides to a cure: a medical cure and an appearance cure. I don’t want either. A medical cure (or treatment, as things stand now) may hold worse side effects than Ichthyosis itself. And I think that an appearance cure is conforming to what society expects of me – the expectation that I would want to look ‘normal’ and de-identify with a condition that I’ve become accustomed to and accept. I see it as a bit vain, even.

In the future, I plan to introduce you to other writers, thinkers and activists who I feel affinity with.  Virtual community is also real community – full of arguments, passion, embraces, patience and complexity.  ‘Normal’ is incredibly narrow.  And ‘abnormal?  It’s not singular, it’s multiple, innumerable in all its manifestations of beauty and becoming.  It’s you.